The only problem with Message Boards is that eventually the postings on the board become lost with time and disappear into the night, taking with them valuable insight on NHL. This will be a place where such knowledge and experience cab be stored. A big high five goes out to Trudi for making the board happen and for dedicating the time and effort to care through her site The mind is a valuable tool in
the fight with NHL |
 |
 |
 |
 |
 |
 |
 |
 |
 |
| BEST OF
NHL MESSAGE BOARD |
...
|
Rituxan What has anyone's experience been with Rituxan? Has it always been combined with CHOP? When you did go into remission, was it discovered immediately after treatment or does it take awhile? Lisa REPLIES My husband had the Rituxan with his chemo treatment. He was given Fludarabine, Mitoxantrone,and the Rituxan. He did very well on this protocol. They retested him at the 4th month of treatment and he was in remission then. How soon after he started the Protocol did he go into remission is anybody's guess. The only problem my husband had was chills on the very first treatment and a slight drop in BP. Otherwise, everything went fine. He was a little sleepy from the Benedryl that they give before they started the treatment. Hope this is of help to you....God Bless! Mary K. Non-Hodgkin's Lymphoma took my sister My
sister age 24 died of Non-Hodgkin's Lymphoma. It was a very very severe
case.
The hard times she went through made me realize how precious life
really
is. I only 14 seem to be 30. The day my sister died Aug. 7, 1999 at
10:47am. REPLIES Tia I am so sorry to hear that your sister was beaten by this beast... lymphoma. You are so right when you say how precious life really is. Sweetheat, knowing this at the young age of 14 is a big plus for you. I feel your sister, Jessica, is watching over you and helping you to grow into a fine young woman. She will always be in your heart... God Bles You! Mary K. I want some info about it my grandma got limphoma cancer a little while ago and no one will explane it to me at all, I just want to know what is killing her cause I had never even heard of limph glands befor now, so if you have some information could you just e-mail it to me please. Sarah REPLIES Sarah, I couldn't e-mail you because you
didn't include your full e-mail address. I am so sorry about your
grandmother! You said, "I just want to know what is killing her".
Are you sure the lymphoma is killing your grandma, or are you just
guessing that it's "killing" her? I don't know how old you are, but I
do know that sometimes adults think it's easier for their children if
they don't know all the details. How much parents tell the children is
up to the parents, so I don't feel right about telling you too much,
without your parents OK. You might want to show the following to your
mother or father though. When my husband was diagnosed with
lymphoma, our children were 5, 9 & 10. We told them a little about
it,
but not very much. We thought it would be easier for them if they
didn't know
everything. Now that they're all grown up though, they tell us that we
should
have told them more. What they imagined was worse and scarier than what
was
really happening! Even the one who was only 5 at the time, has vivid
memories
of the awful fears she had when she'd hear us whispering. If we had it
to
do over again, we would explain everything to them! Diet and NHL We are very interested to hear what others are doing about their diet in terms of controlling their NHL. Our son-in-law was diagnosed in August and as there was no suggestion of treatment at that time, just that he try to live as healthily as possible, he went to the naturopath and has been sticking exactly to her list of recommended foods. Between eating organic and avoiding the foods that it was found that he had a low tolerance for, his diet is very limited. He takes his own meal when he goes to friend's for dinner and has not had a restaraunt meal in 2 months. He has not only become bored but depressed, and most of us feel that the occassion transgession from this very strict diet would do more good than harm. He asked me to ask all of you for suggestions and how you handle this. Thanks in advance for any help you can give. Alex REPLIES You will get many varied responses to this question and each has its own right. Personally I tried the "all healthy boring as sh.." way the first time I contacted NHL over 4 years ago. I lost the will to enjoy things, also got very depressed and felt totally out of my friend's and families lifestyle. My Oncologist was horried that I had changed my diet totally. He asked me to concentrate on what my body felt like eating, this was amazing - and when you get the trick of how to do it, you will find the body really wants healthy food but in different combinations. Much like a pregnant woman has fancies - There has to be a moderate way of living. I still eat as well as I can but I do enjoy life now and if I want a chocolate bar - then I have it. Shirley My wife also has small cell low grade lymphoma. We are on a strict diet that is not so boring. We have a varied diet that consists of organic foods,raw or lightly cooked foods, fish high in omega 3 oils and soy foods. We also, on occassion, go off this diet. We may do this once a month or on special occassions. My wife has been diagnosed for two years. She sees our oncologist once every four months and at this time has no signs of cancer. She is in complete remission. We are doing some other things to fight this disease as well. We plan on her living for a long time. She in complete remission. She was in stage 4 when diagnosed. dc |
|
Reaction to CHOP treatment I am
becoming increasingly concerned that my sister (stage 4NHL) is taking
the chemo badly. She has had four treatments of CHOP and has gone down
more with each one. Although she hasn't been sick she has had terrible
stomach problems and
feels as if her whole inside is swelling and burning. My biggest
concern is her blood count, last time they couldn't get a reading and
gave her
four injections and a blood transfusion before it rose a little. This
time
after only nine days it is the same and they are going to harvest her
stem
cells before the next double chemo session. She is now on four lots of
anti-biotics and very weak. Does this happen to many people, and is it
a sign she is REPLIES First let me tell you that it's not unusual for the patient to feel worse than before, after each treatment they have. Although chemo. kills the cancer cells, it also kills the person's healthy cells. (Which is why people get sick, become extremely fatigued, get lowered blood counts, lose their hair, etc.) It tends to have an accumulative affect, hence with each successive treatment, the side-effects often get worse than they were the last time. As for the lowered blood counts, it's normal for them to go down some. How much they go down though, depends on how much chemo. the patient's had previously, the type & dose of chemo. being used, etc., etc.. I understand how scared you are! A few years ago, my husband repeatedly needed neupogen & procrit shots, needed blood transfusions, was being hospitalized & put on I.V. antibiotics, etc., because of his chemo. induced low blood counts. The scariest time though was when his neutrophil count went down to only 2. Under 500 is considered serious, and under 200 is considered life-threatening. A count of 2 is the same as a count of zero! *Normally* when one has blood counts that low, it's because they're intentionally having a stem cell transplant. A stem cell transplant isn't actually the "treatment", it's the "rescue" (so you don't die) after you've been hard hit with chemo.. (The chemo. before the transplant is what kills the cancer). In my husband's case, since it wasn't intentional, he didn't have any pre-harvested stem cells for them to give him, and a donor couldn't be found. I'm happy to hear they're going to harvest your sister's stem cells before her next treatment! Assuming her counts go that low again, they'll be able to give them back to her. You asked if all this meant that your sister is worsening. As far as the cancer goes, no, it's not a sign that it's worsening. It's usually the chemo., not the cancer, that causes all of these problems. As the saying goes, "The cure is worse than the disease!". That's not really true though. Although the treatment can be bad (and sometimes "almost" kill you), without it, most people "will" die. Although my husband went through some really difficult & scary times, it was all worth it! He's still alive, is in a complete remission, and he feels great now! It sounds to me like your sister's doctors are taking every precaution they can(injections to stimulate her blood counts, blood transfusions, antibiotics, harvesting her stem cells, and taking a scan to make sure the treatment's working) to ensure that they kill the cancer, but don't kill her in the process. I'm hoping & praying that in a few months you'll be telling us about how your sister is in remission, her blood counts have all returned to normal, and that she's feeling great! Please keep us posted on how she does, and if you just need to talk (cry, scream, vent, whatever), we're here. Trudi Trudi, You have helped me once again, thankyou so much, it feels as if there is a huge rock of support out there, and I only have to ask..... To be honest i have been struggling to be as good a support to my sister as I should, the treatment has made her very bitter and easy to offend, everyone from the nurses at the hospital to her family only have to open their mouths to upset her at present. She has a very different approach to the disease than me, she doesn't want to know anything about it, she just wants to take whatever medicines they give her without query and says as far as she's concerned, they will either work or they won't. I have kept everything I have learnt to myself, as I know she is too scared to face anything more, I keep telling myself it's her illness and she must deal with it however she wants... I guess we're all different in how we cope. I feel so much better after reading your answer, thanks again, I am so glad your husband is in remission, let's hope it happens for my sister. Sue H Sue, I'm sure your sister's reaction is partly because of her personality, and partly due to her fear about having lymphoma. However, a large part of her reaction might also be caused by the Prednisone she's on. (It's the "P" in the drug combination CHOP.) Prednisone affects the nervous system and can do quite a number on one's emotions, especially when given in the high doses involved in cancer treatment. Bruce is normally an emotionally stable, easy going guy. Prednisone turns him into an emotional basket case though! It's almost like it greatly exaggerates the emotions. If Bruce normally would be mildly irritated about something, while on Prednisone, he'd be furious about it. If normally he'd be slightly disappointed about something, while on Prednisone, he'd be depressed & thinking it was the end of the world. Etc. etc.. And, I never knew what to expect! One minute he could be "normal", but the next minute he could be depressed, or angry, over absolutely nothing. It's like walking on egg shells being around someone like that. You want to help them, but no matter what you do, it always seems to be the wrong thing. Try to hang in there though! Although she probably doesn't seem very grateful right now, when this terrible time is over, I'm sure your sister will be thankful that you were there for her. Is your sister married, and if so, how is her husband handling her illness? Trudi Hi Trudi, I'm sure you're right, she seems to be up and down by the minute, today she has been feeling ill but not too agressive, we certainly have to tread carefully at times, even a simple remark can provoke scathing comments, next minute she is fine again. She has had to have 4 stimulating injections this time, and is going in tomorrow to discuss harvesting the stem cells, she is worried the double chemo dose will produce double the symptoms, but perhaps not. Her husband has turned out to be wonderful with coping with it all, I was very worried at first because I feared he would not be able to cope, he's always taken the back seat in organising/decisions etc, but he has been a tower of strength and is about to start giving her injections. i offered as we frequently have to inject our horses, but she wouldn't hear of it, saying she wasn't a horse ! (I'm actually pretty good, the horses don't flinch !) I have come away from seeing her today feeling better, your letters and knowing why she's so short tempered then tearful the next minute make it so much easier to cope with. Take care. I will let you know how she progresses. Sue H Hi Sue, Trudy puts it so well, I wish I had of read that when I was going through treatment. I also thought I was going mad. My mood swings were totally and utterly illogical. I'm normally a very mild mannered person, but prednisone seemed to make me into a Jekyll and Hyde personality, and believe me I really couldn't do anything about it. I am now 3 years past CHOP and look back on those days with wonder about how my family and friends coped (some didn't). But certainly the ones who understood it wasn't the 'real' me, could look past the "now" and look to the future are still my friends today. I think it is harder on family (my husband took it quite badly), and for this reason I don't know if I could cope with CHOP ever again. But thats another story. Hang in there, and know that you are not alone.Shirley For what it's worth, Prednisone is a
little easier the 2nd time around. Bruce has had Pred. with several of
the different chemos he's been on, and he found it a "little" easier,
once he knew it was Pred. causing the emotional chaos. Kind of like
with PMS I suspect - you
still have all the emotions, but at least you understand *why* you have
them.
It was also easier on the family, once we knew what was causing his
mood
swings. The first time Bruce had pred., our children were young. The
last
time he had it, we had grandchildren! When he'd get moody (and
sometimes not because of the Sue, When I first started my CHOP treatments I began to feel better to my surprise. Each treatment was progressively harder. I was also dealing with continuous infections throughout my treatment and I believe the infections made things harder. I know this is a difficult time but do your best to remain positive. Tell your sister to listen to her body, drink lots of fluids, try to eat something even when she doesn't feel like it and get lots of rest if her body tells her she needs it. You both will be in my thoughts and prayers. I know its a tough time but you will get through it, take one day at a time. Vivian More over whelming stuff hi guys well it seems nothing is simple. wednesday i went for the angiogram (no symtoms only went so we could do the rituxin with clear head) and they found a blockage and they had to do an angioplasty and put in two stents.NHL and this too. its so over-whelming..i came home from the hospital yesterday. now i have to hope i can still have the rituxin becasue they have haveme on blood thinners and this may make a diffeernce. anybody know anything about that? love to all laura REPLIES Oh Laura, I am so sorry about the blockage! No wonder you're feeling so overwhelmed! One serious medical problem is one too many, two of them are just plain unfair! {{{{{Laura}}}}} I don't know if blood thinners would prevent you from getting Rituxan or not. My uneducated guess is that it wouldn't, but I honestly don't know. Hopefully someone will be able to answer this for you! When's your next doctor's appointment? Please let us know what he says! Meanwhile, know that I'm thinking about you, and I'm praying hard. Trudi Hi Laura,Sometimes is seems that life just ain't fair!! One good way to look at this is they found the blockage before anything was done. Would have been bummers if you were into therapy and not feeling well and something happened. My Mom had stents put in and that's been quite a few years ago and she's doing just fine. Let me pass on to you one of my favorite says..Weeping may endure for a night, but joy comes in the morning. You are in my prayers. God Bless! Mary K. Laura, When my tumor was found it was obstructing my left kidney and they had to put a stent in. I was overwhelmed when they found the tumor, a day later I was told I had lost function of my left kidney and the following day I was told I had non-hodgkins. I was so overwhelmed I could not imagine how I was going to get through this. After the initial shock I realized that I was a strong person and I would get through it because I didn't like the idea of the alternative. Try to remain positive, take each step one at a time and day by day (this whole experience is a roller coaster ride), let others help you when you need it (remember they love you and want to be there for you), surround yourself with loving positive people and thoughts and take care of yourself. Stay strong and let us know how you are doing. Your in my prayers. Vivian Brother in Final Days NHL How to recognize this time? My 40 year old brother has had a long and agonizing 5 year battle with NHL. The doctors have told him there is nothing else they can do, but my brother insists on more chemo. I would like to know what to expect in his final days, what will those days be like and how I can help him, he has no other family. Should I bring up decisions that will need to be made or wait for him to accept what is happening and let him open discussions. He keeps most everything to himself, he has become almost hermit like the last couple of years. How can I be there for him? I need advice and information. Carol REPLIES Carol, I am so sorry to hear about your brother! What type of
NHL does he have, and what has he had for treatments? You said the
doctors
have told him there is nothing else they can do. Has he gotten more
than
one opinion? If not, I'd definitely recommend he get a second opinion!
I
personally know a woman with leukemia that was told there was nothing
that
could be done for her, that she had less than a month to live, and that
she
should go home & make her funeral arrangements. Thankfully, I was
able
to convince her to get a 2nd opinion. The 2nd opinion doctor got her
into
a clinical trial & she ended up going into a complete remission! If
your
brother was married and/or had children, I'd hope he at least had a
will.
Since you said he doesn't have any other family though, a will isn't
quite
as important. (Although it would still be advisable for him to have
one,
especially if he has a large estate.) Knowing what his wishes are about
being
kept alive on life support, knowing what he'd want for a funeral, etc.,
would
be nice for *you* to know, but if he doesn't seem to want to address
those
issues, I personally wouldn't push them. (Just my personal opinion, I'm
sure
others would disagree). People unexpectedly die every day in car
accidents,
etc., without their affairs being in order. Although not knowing their
final
wishes makes it harder on the family, having their affairs in order
doesn't
always make death easier for the person who dies. When my husband was
supposedly dieing, I had a million questions I wanted to ask him about
his wishes, but
I didn't. Like your brother, my husband wasn't ready to give up on the
hope
of surviving, and I could sense that he didn't want to discuss those
things.
After he went into a complete remission, he told me he "couldn't"
discuss
those things when he was so bad. During that time, he felt that if he
admitted
there was a possibility he was dieing, then he *would* die. After he
went
into remission though, we discussed them. I think the best thing you
can
do for your brother is to give him openings to discuss how he feels,
and
then follow his lead. If his desire is to continue fighting, then
encourage him to do that. Suggest he get other medical opinions, look
into possible clinical trials for him, give him books that will feed
his hope, etc.. If he expresses fear, then just hug him and allow him
to cry & to talk about his fears. Whether he survives or not, he
has good reason to be afraid right now! And if he seems to want to talk
about the possibility of death, then allow him to do that, and use that
opportunity to ask him what his wishes are. The most important thing
though, is just to let him know you love him and that you're there for
him, regardless of what his approach to this is. I don't have any
personal experience with the physical side of the "final days". If you
want to join the caregivers e-mail list though, they can offer you
information about this, as well as emotional support. To join the list,
send an e-mail with the following in the "body" of the message: Hi Carol, I am so sorry to hear about your brother. How are YOU doing? I know it's got to be oh so hard with you being his only family. What type of NHL does he have? I believe as long as he has "fight" left in him he should go for whatever he can get. The National Cancer Institue lists trials going on. Maybe you can get on the computer and help him this way or check with his Oncologist. There is an area at http://www.about.com ( I think that's the correct URL.) Click on health..click on Mental Health and go to Death and Dying. It's hosted by Trudy Weathersby who, just happens, to live in our town here in Texas. She is an R.N. has M. in Ed....just click on her picture and it tells all about her. I've learned a lot by going into her site. I was just preparing for down the road...she helped me when I e-mailed to her. How you can be there for him? Just love him and be open to him...remember, go easy on yourself too...(((hugs and prayers))). God Bless! Mary K. I'm sorry to hear about your brother. My Dad was diagnosed in 1993 and also appears to be at the end of his fight. I wish I could be of some support to you and offer some guidance, however, we appear to be at the same stage. It's so frustrating not knowing what the next day is going to bring. Physicians are extremely reluctant to predict anything, and I understand their reasoning. However, for those of us that have the responsibility of "caring", it sure would help to have some ideas on what to expect and when. I feel almost guilty wondering about the issues sometimes because it seems trivial in comparison to what our family members are going through. Hopefully it helps to know that others are out here in the same situation, feeling the same things, asking the same questions. Linda Linda, please don't feel guilty for wondering about those issues! I too have wondered when it would happen, and what to expect, and I'm not even at that stage! (And hopefully I won't be for a long time!). I think it's natural to worry & wonder about it though, it's a way of trying to be prepared & ready to cope. I think one of the things that's most frustrating for people with NHL and those that care about them, is that, unlike with most cancers, there are no set answers. It's hard to be prepared when you're not even sure if you need to be prepared at all, or what time frame you have to prepare! I wish you well, and I send you hugs! {{{{{Linda}}}}} Trudi I am sorry for you brother, I will keep him in my prayers. I can't really tell you about the final days of NHL, although I fear that my mom is headed in that direction. She was diagnosed in 1995 and has been having a terrible struggle the last 6 months, but my dad was also diagnosed in 1995 (2 weeks before my mom) with a rare form of cancer and his final days were emotionally hard to watch because he was in so much pain, but I am so thankful that I was with him to see him thru them and that he was alert and oriented right up until the moment he took his final breath. We did alot of talking, which was difficult at first because my dad had always been a very quiet man, but one day (about a week before he died) he asked me if there was anything that he had ever done that I had not forgiven him for or that I would like to talk to him about and that just opened up the flood gates to talk and assure him that he was the best dad that anyone could ever have. That was 3 years ago and I am still so happy that we were able to talk like that and tell each other how we felt before it was too late. I can honestly say that I have no regrets. Just thought I would share that with you. God Bless, Sue |
|
Mantelcell?-Non-Hodgkins-Lymphoma I am looking for information on what I was told was a rare form of lymphoma. Does mantelcell refer to the size or shape? How many types of non hodgkins lymphomas are there? Kathy REPLIES There's a web site devoted to Mantle Cell Lymphoma. It has several informative statements about Mantle Cell, which should help you understand it better. Although I'm not familiar with all of the authors, I know at least some of them are well-known experts on NHL. The URL for the web site is: http://eyesite.ucsd.edu/~mcl/ As for how many different types of NHL there are, it depends on which article (or web site) you read. Most everyone agrees that there's at least 10 types though, and several say that there are MANY more types than that. Trudi Hi Kathy and Trudi...and all, I'm on an e-mail site for NHL
and
I get hit with 50-80 e-mails a day. I think Trudi, there are many more
types of NHL...some are saying upwards of 35-40 and it keeps rising. A
lot of people on this e-mail board seem to think a lot of it is linked
to the chemicals wea are all exposed to every day. Hi Kathy, I was also told it was quite a rare form of lymphoma and usually occurred in men aged 50 - 60, I've since found out that this is not so, and an alarmingling high number of women are now being dx with mantle cell. I have just finished another treatment and will know in a month or two how it went. good luck, and if you have any questions please contact me. Shirley Swollen Lymphnodes and Nausea I am
becomming a little concerned. I have had swollen lymphnodes since March
of '99 (about 6 months), however, the Oncologist claims that they are
still too small to biopsy. He also claims that I probably just had a
virus such as Epstein barr that has caused the swelling of my
lymphnodes. The lymphnode swelling is throughout my body and includes
my neck, armpits, and groin. I also have daily nausea. My blood counts
are still fine and the Oncologist claims
that he will not do any further testing unless there are changes in my
blood counts or in the lymphnodes. REPLIES Enlarged lymph nodes can be caused by a number of things
(including some very minor things) but, considering the locations of
your enlarged lymph nodes, you might want to see a different doctor for
a 2nd opinion. The
only nausea my husband's ever had with NHL was from chemo., not from
the
cancer itself. My 10 year old granddaughter has had enlarged lymph
nodes since
she was 2 years old. They've never been biopsied because the several
different
doctors she's seen all say they don't "feel" like anything to be
concerned
about. I'm not sure what the difference in feel is, but apparently
there
must be one. For over 8 years her enlarged lymph nodes have remained
unchanged...On
the other hand, when my then teen-aged daughter developed enlarged
lymph
nodes (no symptoms), the doctor biopsied them because of the way they
"felt".
However, the biopsy revealed nothing & several years later, she's
still
fine. Her lymph nodes do still occasionally enlarge though. Linda, Until my diagnosis I was always a very healthy person. The week before mothers day 1998 (at 39 years old) I developed a cough. The cough would not go away so after 3 weeks off to the doctor I went. The cough became so bad that every day I experienced nausea and finally stopped eating because if I ate I became sick. The doctors tried many solutions to get rid of my cough but nothing was working. After 2 months I was getting weaker and began having irregular mild fevers. I felt that something was seriously wrong and would not stop calling the doctor until I found out what was going on. At one point I was told by a doctor that she felt the cough was in my mind to increase the sinus spray she prescribed and not to think about it. Needless to say I called the doctors office again and asked to see a different doctor. Listen to your body and don't stop until you have the answer you need. A blood test(which did not show cancer)was done and the doctors found I was severly anemic and in need of a tranfusion. The next week the night fevers started and a CT scan and biopsy revealed non-hodgkins. It took doctors 3 months to find the cause of my illness. My symptons came on very quickly and progressively worsened. My tumor was in my abdomen and I could not feel it. I hope and pray that your Onlcologist is right but recommend that you pursue the matter until you are given an answer that you are confident of. I wish you the very best. Vivian Good News I
just
wanted to come on here and post some "good news" and to let you know
MIRACLES do happen. My husband was dx in August of 98 with
indolent SLL/CLL
stage IV. He's been through (all at the same time) 2-chemos
(Fludarabine
and Mitoxantrone X's 8 months) and Rituxan X's 5 months. Was then put
on
6 Million Units of self-injecting Interferon..two weeks on and two
weeks
off. He just completed one weeks restaging testing minus the bone
marrow
asperate which will be done in two more months. Anyway, tests showed NO
CANCER
FOUND! Oh yes, he had it in the bone marrow at 48%...last bone marrow
asperate
showed NO CANCER FOUND too. So things are looking good right now. I'm
still
going to believe in MIRACLES!! REPLIES Good Morning Mary: I bet that smile on your face these days isn't painted on. Isn't life grand sometimes? Thank you for sharing your happiness you can read it in your words and from those words it adds fuel to my hope for a future.(STRENGTH GIVER)When I was first diagnosed 10 years ago I was fighting an isolated battle with my immediate family and friends not knowing what to expect, filled with so many insecurities. Over the years each additional battle made me search harder for the answers developing a network of positive influences in an era where doom and gloom sells and the media would rather promote and idolize mass murders than stories like the one you tell today.Mary you deserve this happiness enjoy! Your need to know about NHL has given you some sense of control and this knowledge you gladly share through the NHL Message Board effects everyone even veterans like me. Your dedication to a cause that most would run and hide from tells us what kind of person you are. A friend of mine once told me "They say that those who can handle tough situations and adversity are the ones who are faced with it". I would like to add to it in saying that " Those that face adversity and survive are given a six sense of understanding. A beatiful feeling of appreciation for even the little things in life ". Thanks to people like you Mary I don't feel as alone as I once did, my family of positive influences is growing. You don't have to be diagnosed with NHL to be a real NHL'ER. THANKS FOR SHARING Take Care and enjoy you deserve it. Dave P. Dave, Such beautiful kind words....I thank you, Sir! When one of us receives a blessing, a miracle, and a gift...we all share it together! After all we are all in this together... aren't we? God Bless! Mary K. Such great news Mary, I agree - Miracles do happen - and they happen a lot more than we think. It is so uplifting to hear a good story -puts me in a very positive mood for a whole day - and thats another day closer for me to be cured (ever the optimist). I've finished my Bexxar with radiolabelled iodine treatment, no results in yet - but I'm starting to pick up. Shirley Mary, I am SO happy for you! Thanks for sharing the terrific news, and for giving others hope! You've written so many caring & supportive messages to others, even when you were scared yourself, that you certainly deserve this miracle. I hope you were able to do something special to celebrate? Trudi Mary K - I'm so sorry that you did not receive my first message. I wrote you, hit enter and our hard drive crashed. After several weeks without a computer at home our computer is up and running again. I felt it's better late then never to send you a note. Having recently received great news about my first CT scan after treatment (no sign of cancer) I know just how you are feeling. It is so easy to let this roller coaster ride get you down. We all have to remind ourselves to treasure the ALL good news when we receive it. Keep thinking those positive thoughts and believing in miracles! The treatment, good care, and positive thoughts seem to be working. Congratulations and thanks for all the support you provide so many of us. Vivian Third shot @ it Flubarabine I would like to know if any of you fine (and I do mean fine) folks can tell me your experiences on Fludarabine. I have tried the Leukeran/Prednisone and it has had no effect, then we tried Cytoxan,Vincristine and Prednisone and still no effect. So we plan on moving on to Fludarabine. I'm beginning to think I could have something serious here....like maybe cancer...just kidding. Thanks my friends Bill W. REPLIES Bill, can't help you with those drugs, someone else will, I too am on my third treatment - and I just wanted to let you know that I love your sense of humuour - the way you put that really got to me. Take care and best of luck Shirley Hi Bill, Well let's see...My husband has had the Fludarabine and it went real well. I might add here that he was on Mitoxantrone and Rituxan all at the same time. So you can see he was "hit" rather hard for his first ever "chemo" treatment. He never once got sick (vomited..yuck), never lost that first hair, never missed a meal, and,really, just did great. Now his biggest problem was, and still is, (as he is on Interferon now) fatigue...though he still continued to work. I'd say that the steroids, that they gave him along with his chemo protocal, were his biggest problem..and still are. So I would not worry one bit if you are basing it on my husband's experience. One word of caution, and I know I don't need to tell you this is, we are all different in how we react to medications. Bill, I hope you do just as well as my husband..good luck! God Bless! Mary K. During my husband's relapse, he was on Leukeran & Prednisone for almost 1 1/2 years. For quite awhile it "controlled" the NHL, but then the cancer became resistant to the Leukeran & it progressed. He was then in a clinical trial using an antibody similiar to Rituxan. Almost immediately after getting it, his NHL got much worse & it transformed to a higher grade. His tumors were growing so rapidly, I could "literally" see them growing by the hour! A mass of enlarged nodes under one arm was so large, it prevented him from putting his arm by his side. Visible enlarged nodes down the insides of his legs made walking difficult for him. His neck, throat, and back of the head region was so full of enlarged nodes, it didn't look like he even had a neck at all. He had pain in his abdomen from the masses of enlarged nodes in his abdomen. CT scans showed masses of enlarged nodes were strangling his heart, lungs & esophagus, and were threatening to kill him. Etc., etc.. He was considered to be a "dieing" man. Then he had Fludarabine. Because his tumor burden was so high, he responded to it drastically, and I do mean drastically. It was like someone had popped a ballon! By the 3rd day of the FIRST cycle (the schedule was 5 days in a row), he had an over 90% reduction in tumor burden! Unfortunately, he didn't respond to the second cycle & the NHL was resistant & growing again, by the third cycle. BUT, Fludarabine saved his life! Afterwards, he had Fludarabine & Novantrone which was a great combination, although devastating to his already low blood counts(he had been on treatments for almost 4 years continuously). I know of several people who have gone into complete remissions from Fludarabine & prednisone, when nothing else worked for them. I hope they do the same thing for you! Even if they don't though, don't give up! There were times when things were so bad, we didn't know if Bruce would still be alive the following week. Now though, not only is he still here, but he's been in a complete remission for the past 1 year & 8 months! By the way, you sound like Bruce. He's always saying, "If it wasn't for this little cancer thing, I'd be perfectly healthy!". :-) Trudi |
|
Age of those with NHL? I was just curious about the age of those of you with NHL, or the age at which you were diagnosed? They say that NHL is mostly seen in people over 50, whereas children and people up to 30 years of age are usually diagnosed with HD. Does anyone have an idea why this is? Janice REPLIES Age at DX - 53 (Male, Caucasion)- NHL, Stage 4,Large Diffuse Cell, Intermediate (7/99) Faye 54 at dx as low grade NHL. re dx 57 with Mantle Cell Lymphoma shirley I was 26 when I was diagnosed with mediasteinal large cell lymphoma. Christie I was 36, Dx'ed nodular mixed, stage 4 NHL changing to small cleaved after yr of chemo (mitoxantrone), BMT the next yr, new life after that (out with the old/in with the new) Increases in occurrances have not discriminated any age group. Reed Age at DX - 39 (Female)- NHL, Stage 2,Large Diffuse Cell, Intermediate (9/98) Vivian Age 18 at diagnosis of Burkitt's Lymphoma Mer Husband dx at 55 with indolent SLL/CLL stage IV Fludarabine, Mitoxantrone,with Rituxan eight mo.(Rituxan about fiveof those months) In remission and on Interferon for 1 year. Mary K. Son-in-law, Graham, diagnosed at 35 with Stage 3 Indolent NHL...no treatment as yet (watch and wait). Alex dx in July '99 with stage IV marginal zone lymphoma oops, age 46 Johnny I was diagnosed in 1990 with Low Grade Folicular Lymphoma at the tender age of 29. The first remission lasted for 3 years. The second for 1 year and the third for 6 months. All remissions were diagnosed as still Low grade but upgraded my condition to Recurrent Low Grade Lymphoma, which means it keeps coming back and back and back. It was like having the rest of my life segmented off in shorter and shorter time periods. A Peripherial Stem Cell Transplant in 1997 using my own stem cells stopped the cycle and I have been in remission every since. Thank you!!!!!!!! As far as the age thing goes the information I've seen on the net and from personal acquaintances I've had with other NHL patients I fear the age difference is becoming a thing of the past as more younger people are diagnosed with NHL each year, including myself. Dave P My son was 16 when he was Dx with T-cell lymphoblastic lymphoma. Tracy Side effects of Chemo My sister who is 61 has been diagnosed with stage 4 NHL and is part way through her second session of CHOP. She has not been sick but has lost nearly all her hair and is totally wiped out by the treatment. The worst thing seems to be the emotional effect, one minute she is planning her funeral, the next her future. Some of the side effects have scared her a lot, bad pains in her bones, a very tender scalp, even a noise like a chicken in her ear... Is this normal, do the drugs sometimes make you hallucinate ? I have tried to be supportive with hats/tempting treats/a listening ear but I am finding it tough, and have had terrible nightmares for a couple of weeks. Any ideas on how to cope? Any advice much appreciated.Sue REPLIES These are the tough times..I have been through some tough struggles myself. My husband has stage 4 indolent Lymphocytic Lymphoma and it is 48% in the bone marrow. He was diagnosed 10/98 and I'm still finding it hard. The best you can do is to be there for her and, it sounds like you are. A lot of the side effect you describe can be related to the chemo treatments. My husband was on steroids during his chemo and they gave him fits..is she on steroids too? The only thing to do is let her Oncologist know the symptoms she's having and he might be able to give her something to help her out. You need to take care of yourself too. I kinda found that out the hard way. You need to eat, sleep and exercise properly and give yourself breaks...getting away for an hour, a day or whatever you can helps tremendously. I will keep you and your sister in my prayers. God Bless! Mary K. I really feel for you carers, and must take my hat off to all of you. I don't care what doctors say - chemo is mind altering, or at least affects the nervous system so much that the mind is thrown into chaos. I am a normal sane sensible woman of 58, but whilst I was going through chemo I was a bit of a fruit cake. Its like a roller coaster, with mood swings to the same extremes. I tried so hard to control myself, but sometimes I just let fly (and all this from a mild mannered person. Don't retalliate, because that is what my husband did to me, and it just made me worse by far. I'm rambling, I could go on and on, get some medication from your docs, and you go for long long long walks. Take care. Shirley Prednisone is one of the drugs used in CHOP, as well as in many other drug combinations. It affects the nervous system and is especially difficult for many people to tolerate, when given at the high doses that are used in cancer treatment. Prednisone is also used for non-cancer problems, but at MUCH lower doses, and it's generally gradually tapered off when used for other problems. (With cancer it's stopped suddenly, so also causes withdrawal). A friend of ours was on 10 mg of Pred. for a non-cancer problem. He couldn't handle what it did to him emotionally, so he had to be cut back to 5 mg. of it. 10 mg of Pred. is *nothing* compared to what cancer patients take! Another friend of ours was also on Pred. (20 mg) for a non-cancer problem. She went insane & was briefly institutionalized before someone finally realized it was the Pred. that was making her nuts. As soon as she was taken off of it, she was OK & was released. 20 mg of Pred. is also nothing compared to what cancer patients take! If low doses of Pred. can do this to people, imagine what it's like to take high doses of it. My husband is normally a mild mannered, easy going person, slow to anger & never depressed, but Pred. turns him into a basket case. He could be "normal" one minute, furious about nothing the next, depressed & crying the next, etc.. Not only were his emotions extreme, but they'd also change unpredictably. This would have been hard enough to handle if he had realized it was the Pred. making him act that way, but he couldn't realize it was the drug. He thought his irrational & extreme emotions were justified! Pred. also caused him to have problems concentrating & he'd forget what he was saying in mid-sentence. He was VERY restless & couldn't sit still. He had problems sleeping. Etc., etc.. Even when you realize it's the Pred. causing the problems, the side-effects from it can still be very upsetting for both the patient and everyone around them. And when you *don't* realize it's the Pred. causing the problems, it can be even more upsetting for everyone! My children, and later my grandchildren (my husband's a 13 1/2 year survivor & has been on Pred. a lot), called it his "grouch medicine". I jokingly would tell my husband it was pay back for all my years of PMS. :-) Living with Pred. isn't easy, but it's well worth it when you finally hear that word "remission"! Trudi Unfortunately sometimes the potential cure seems worse than the disease itself. While taking presdisone I found that if I kept something in my stomach (no matter how small an amount) I was alright, but that's what worked for me and may not work for your sister. Over time I've discovered that it's harder to watch a loved one battle than to actually go through the war yourself. The fact that you are trying to understand shows that you are doing all you can to help your sister and understanding is the key to thinking, saying and doing the right things. Take Care Dave P. Thank you all for the support, tonight I arrived home after persuading my sister to go to the hospital, judging by what happened last time I think her blood count may have fallen, and that's why it is all getting too much for her. The lack of sleep and indigestion which nothing seems to relieve seem to be the worst, I will tell her about the affects of Pred. and hopefully she will realise she isn't going mad. Hallucinations must be pretty scary, so no wonder she dreads sleep. I am hopeful the hospital will have something to help, they must have seen it before. Best wishes to you all, Sue Remission? Does remission mean there is no cancer in your body including bone marrow or does it mean it is not doing anything?Diana REPLIES We've been told that a "complete" remission means they can't "find" any cancer in your body. Bone marrow involvement is zero, lymph nodes appear normal, etc.. That doesn't necessarily mean there isn't any cancer though, just that there aren't enough cancer cells for them to detect. I think a "partial" remission means there's been a good response to treatment (lymph nodes shrink, marrow involvement goes down, etc.) and the cancer is being controlled. A "cure" means NO cancer cells are left, and the chances of getting that same type of cancer again are the same as the general public's are. With curable types of cancer, you have to be in a complete remission for X amount of years (varies with the type of cancer), before you're considered cured. With incurable types of cancer, no matter how many years you're in a complete remission, you still have some cancer cells in your body & will eventually relapse. My husband has an incurable type of NHL, but his first complete remission lasted for almost 7 years. He'll happily take several more complete remissions like that one! :-) Trudi I can only tell you what our Oncologist said..He said,with the tests that they can perform today...they can not detect the cancer. Doesn't necessarily mean it's not there...down the road they might come up with a more sensitive test that will pick it up...but for right now, it can not be detected and to go on believing it's gone. I hope this helps...persoanlly, I'm believing it's gone as my husband is in remission. God Bless! Mary K. Everyone and I mean everyone has cancer cells, even health people. The problem occurs when they begin to grow uncontrolably. My philosophy is if I can't see it, can't feel it, the doctor's can't find it and I generally feel good, then I'm in a remission state of mind and 5 years or 10 years designation for remission doesn't even come into play. Life and living is to special to worry about that. After 3 remissions I'm starting to become an export on it based on actually battle experience and the joys that a remission bring. Take Care Dave P. Need friendly advice My 30 year old brother was diagnosed with NHL 4 days ago. He is married with 2 kids under the age of 3. We are all very upset. We have been told he will have 3 courses of CHOP chemo and radiation. I feel so helpless. Any advice about how I can help him and his family or what to expect I would really appreciate. Thanks! Susan REPLIES Just know all of us on this board know exactly how you are feeling right now. Take "things" as they come. The more you learn about what your brother has the better you will be able to deal with it. Right now you can offer your help in any way possible to his family..assuming you live close to him. Maybe babysit the little ones when he has to have treatments or see the Dr. Keep some good jokes handy and be just as uplifting as you can be. Sometimes our actions speak louder than words. Just let them know you are with them on this road that many of us are walking...he's not alone. I will keep you in my prayers! PS The computer/internet is full of information God Bless! Mary K. You didn't say what type of NHL your brother has, but if it's
the most common type found in Canada & the U.S.(low grade,
follicular small cleaved cell NHL) you can tell him about my husband.
Bruce was 34 when he was diagnosed with stage 4, follicular small
cleaved cell NHL, and we had 3 young children. Now, 13 1/2 years later,
Bruce is not only still alive, but he's currently in a complete
remission & is actively enjoying life. Our then 5 year old is now a
college student! As for what you can do, just be there for them &
let them talk about their feelings, regardless
of what they are. When they're scared about the future, realize they
*do*
have a valid reason to be scared, so allow them to vent those fears
without
feeling compelled to give them a "Cheer up!" speech. And when they're
full
of hope & optimism, encourage & support their faith in a
future!
If you want to feel like you're physically "doing" something, here are
some
suggestions. Take over a meal for them. (While they're adjusting to the
diagnosis, even simple things can become a chore for them.) Offer to
babysit
when they go to doctor appointments. Take the kids for a few days
occasionally,
so they can have some time alone together. While your brother's going
through
treatments, mow their lawn and/or etc., so he doesn't have to worry
about
it. Buy them the types of books that give hope, send them funny cards,
buy or rent a humorous video for them. You might also want to consider
joining
the e-mail list "caregivers", for support for YOU. You can learn more
about
it & how to join, at this address:
http://www.geocities.com/Heartland/Valley/6727/caregivers/index.html . |
|
Expectations for Chemo? Hi everyone, I'm the one with the newly-diagnosed Mom. I have some questions about chemo, which apparently she will be starting soon. Because our family (thankfully) has no experience with this, I have no idea what to expect from the chemo treatments. How sick will she be? Will she be bed-ridden, will she need to be close to the Cancer Center in the city? Will she have to be very closely monitored for infections, flues etc. because her immune system will be weakened? Right now my Mom and Dad live on an island, in our cottage outside of the city (about 1 1/2 hour drive away). They come into the city and stay at my house 1 day a week for shopping, laundry etc. Should I expect that they'll be staying here in the city while she undergoes her treatment? (no problem). I'm trying to understand if I should probably be expecting and preparing for 2 new roommates for the next while. Thanks in advance...thump Most likely not. Reactions to chemo vary so much that in extremes, the doc will respond to each "burp" as necessary.Schedules depend on the agent, progression, and her needs. She will not be as sick as rumor and hearsay dictate. I was on a ten month "very aggressive" chemo initially and kept my hair, gained 20 lbs., and went mule-back camping up to Wheeler Peak in New Mexico with clients in tow. Expectations seem to influence reactions, so don't exhibit fear, you need to show positive support. Nutrition is elemental and not the bottled stuff from health food stores - good organic carrots, a beer every once and a while, and fluids fluids fluids. Later, Reed Holt I know things are tough right now and it's quite overwhelming..I can only speak from our experience. My husband was on (2) chemo drugs at once and a monoclonal antibody called Rituxan. You can get infor on cancer drugs over the net BUT, I'd advise you to wait until a protocal is set up for your mom. She will be watched very closely with blood tests etc. You will gain more information as you go along. The cancer center or, wherever she gets treatments, will advise her on everything. We got papers to take home that listed the medications and their side effects and what you do for these side effects. Also a list of phone numbers if you need anyone to help you out. Just know they have medications to help ease side effects..My husband, even on (2) chemo drugs did not lose any hair..all people are different and react to medications differently...even aspirns. One thing would be very helpful is to have someone going with her, not only help her,but to "hear" everything the doctors say..sometimes we as patients tend to block things out or we're just not feeling that well..I got a big binder notebook with pockets and dividers. Then I sectioned it off like Medications, Information, Questions for the DR., Dr.s instructions..symptoms from medications and my husbands reactions,all letters from the hospital, and a section of all his tests ie. blood tests, MRI etc....all that stuff. I even kept a journal for myself and how I'm coping and what went on when..I read back on that now and remember and see how far we have come together. One more thing I'll pass on from our experience..you've heard the phrase.."take one day at a time"..it's true..Whether your mom has to stay with you or not will become evident as you go along...sometimes nurses make the worst patients..my mom is a RN too..her body will tell her what to do..cancer patients will tell you that. You sound like a great and caring daughter..that's a big plus!! God Bless! Mary K. The loss of my hair and fatigue were my worst side effects. I continued to work full time at a new job I had started two weeks before becoming sick. My immune system remained strong and I was fortunate enough not to catch colds, flu or viruses during my entire treatment. . I rested often in the evenings and on weekends. I drank lots of fluids and sucked on ice chips during chemo treatments (not one cold sore during 8 treatments). When my body was tired I listened and tried to rest as much as possible. I was so sick by the time I was diagnosed believe it or not the chemo actually made me feel better. Each treatment however was a little harder then the prior one. I hope your mom is as fortunate as I was. Vivian The most difficult chemo. my husband was on, made him vomit just once a few hours after each treatment (he had this particular chemo. 13 years ago, before they had the great meds. they have now. I doubt he'd have been sick at all, if he had been given the anti-nausea meds. that are now available.) Then he felt nauseated & was tired for a couple of days afterwards. Although some of his hair did fall out, he never actually went completely bald. The worst side-effect he had from it was one that we hadn't anticipated! The high doses of Prednisone affected his nervous system and turned him into a basket case. He's normally a very easy going person - never depressed, and extremely slow to anger. While on the Pred. though, he was VERY moody! Even with that though, he was able to work while on that chemo., taking off only the days of the treatments & 2 or 3 days after them. The easiest chemo. he's had, had no obvious side-effects at all. After he had his treatment, he'd go straight to work from the hospital! The only side-effect he had from that chemo. was a lowering of his blood counts, so that would make him fatigued until he got a blood transfusion. The strangest side-effect he had from a chemo. was, one drug would turn his urine a definite green color. It can also turn the whites of the eyes blue, but it never did that with him. We were kind of hoping it would! :-) It's hard to say what you should expect, without knowing what type of chemo. your Mom's going to have. Also, everyone reacts differently, and even with the same person & same type of chemo., the severity of side-effects can vary from one treatment to the next. It's really a play-it-by-ear thing. Trudi Another quick prayer for Neptune, like before She needs it right now - this minute, next few hours. Please. Like before, but I won't go into the "feel good" details, that kind of gets the dander up from the victorians. Thank you, Reed REPLIES Reed, for Neptune: You are very much in my prayers. God Bless and Protect. Ginia Neptune, I don't understand how, but I am confident you can feel the strength and love I am sending you today. Here in Devon I have just walked our farm, it's a frosty, sunny morning and at 6.a.m. I sat on a log (cold!) and watched a wild red stag and four tiny roe deer feeding. The sense of peace this place has is hard to describe, not only is it totally beautiful but you cannot hear traffic etc. I am thinking of you and hoping I can send you a little of our "Narramore" magic, I hope you can feel the sun and imagine the blue sky I saw this morning. I hope you enjoyed the dolphins, I found them tremendously moving, I couldn't seem to communicate with them, but they made me feel so happy. Sue Reed I have never post before but I read the messages. Neptune is so caring. I have said a prayer and lit a candle for her fight. Love Carmen Neptune, You are truly special. I do not know what you are going through but wherever so much love is, healing must take place. You will be in my prayers. Lysette Dear Neptune, The love, knowledge, and compassion you've given to this board is without bounds. I've gone back to read some earlier posts and realized you've probably written more than once from your own hospital bed. You are truly a precious gift to this world. Please know we are thinking and praying for you. Come back soon Mary That's it, keep it going! On a 1,2,3.....give it to me Reed Reed, I also don't ususally post, but try to read daily. Neptune has my prayers, she is a real gem. How is she? Is it anything we can help with? Best, Bobbi Specifically she needs: For her immune
system to work. Thanks Y'all. Reed I am leaving work now. I will concentrate on Neptune and send clear, clean thoughts all the way home. Johnny Okay everyone who harbors doubt - you should never. She still could use the prayers and good pleasant thoughts, there are still a couple of little problems, they need us all still. But she's leaving the hospital in a day or two and coming back here, to the ranch. We'll use not just a little time to look deep into each other's eyes, maybe go dancing under the stars, try to cook some real good food out back, and just laugh, smile, love, and savor life as it was always meant to be. This is medicine, this is life, and if it's only for a short while, it makes it all worth it. Then, as that's being experienced magic does happen, and always you can make it last just a little bit longer. I wish modern and sometimes miraculous medicine could bottle that, or more people would pay attention to it, especially ones who never get sick. Thanks so much for the prayers and good feelings. I owe you all yet again. Reed Yea! Just goes to show you what the power of prayer and the love and support of people who truly care can do, with God's help. You two have fun dancing under the stars, gazing in each others eyes and eating good food and just plain enjoy the heck out of life. I am still with you in thoughts and continuing prayers, as is everyone else on the message board, I am certain. God Bless. Ginia Neptune and Reed, You've both have done so much to support, advise, help, and provide us a laugh or two as many of us battle against lymphoma. I've said special prayers for both of you as you continue this fight. Keep thinking positive thoughts, surround yourselves with those that care and support you and treasure every day. As always your in my prayers. Vivian Neptune & Reed : I'm a firm believer in the saying " the effort you put forth is rewarded twice fold". Both of you have displayed throught the board a caring, sometimes humourous, and always informative nature, that NHL'ers (patients & caregivers) cherish, because you help fill a missing link in our search. Your experience and knowledge and wise use of communication allow others to identify and somewhat understand, but true understanding only comes with the experience of going through the battle, but your guidance helps ease our journey. A decade ago when I began my fight with NHL you two were no where to be found and it was indeed a lonely venture. Six years later I began to document my medical history and feelings with the goal of providing information and identity to those looking for the knowledge of NHL, so others would not have to go through what I had to. I even made a pact with the ultimate being that as long as I did good then they were going to let me stick around for awile. After three remissions, the later being the longest to date, I'm going to keep doing what I've been doing and thus the constant changes to my web page, including another look as of today. When I began to make an effort to help others I had no idea of the rewards that would come my way as a result of my endeavours on the net. The index page alone reflect examples of communication that gave me strength. I no longer feel alone in my battle because of technology and the wonders of words of encouragement from all over the world and I'm sure you both feel it too judging from the responces on the board. HARNESS that power towards your will to press on, a definite STRENGTH GIVER. Feel good about yourself you deserve it and use it to help you heal because you still have much caring, inspirational work to do. Reed like you put it " This is Medicine, This is Life". How true but only because you have earned it by being genuine and thus the genuine responce. The fact that you inspired not 1 but 2 first time regulars to post speaks volumes of your presence to others on the net. You two owe us nothing but we still need you, much like you need us. That's the power. You know the problem with remission is that you sometimes take life for granted and you lose track of your priorities in life. Battling NHL has given me a sixth sense of understand of truely knowing what is important in life. To this day I'm still amazed how I have cherished the ability to take in a breath and enjoy. I can honestly say that despite the hardships of the last 10 years it has been some of the richest years, not because of what I did or accomplished but because I did them with genuine feeling. NHL gave me that (Male PMS). All of our fuel adds to the passion and because you two care, we care. I want to leave you with a poem from my page that is rather fitting. Remember
with every remission. Believe - Harness - Heal Take Care Dave P Dave, Thank you. Reed's experiencing some technical difficulties with his computer these days, but please continue to hold and I'm sure he'll be back online to say a few words himself within a day or two. In the meantime, I'll sub for him. You are a true human being. You know what love is. You know what life is. Keep on. Thank you. Neptune
Burkitts Like Lymphoma My 28 year old boyfriend has "Burkitts Like" lymphoma. What chemo, combo and/or anti-body therapy has helped anyone here? I called Bexxar but he is not a candidate for their current trials. Any information is greatly appreciated. Thank you. Lysette Hi Lysette, Burkitt's-like lymphoma is very, very aggressive. Your boyfriend needs some strong treatment to knock it back- probably antineoplastic, which is why the Bexxar people told you he wasn't a candidate for their treatment right now. Protocols vary, but his will probably have a wide combination of chemotherapeutic drugs, (called combination chemotherapy) and possibly include intrathecal treatment as well. Some common drugs used are Cytoxin, Hydroxydaunorubicin, Bleomycin, Oncovin, Prednisone, Adriamycin, Methotrexate, Etopiside.....there are many these days, and each center usually has a protocol aimed at each particular type and stage of cancer. It's probably more important at this point (I'm assuming he was recently dignosed) to get him to a comprehensive cancer center that has a lot of experience with Burkitts and Burkitt's-like lymphoma. Then they'll know best what treatments will give him the best chance of remission. The possibility of a bone marrow transplant in the future may be something he should ask his doctors about, or hopefully they'll bring up without prompting. Good luck, and please let us know if we can help. Neptune Hello. My husband was diagnosed with
'Burkitts-like" in May 99. He is 42 years old. He underwent very
agressive chemotherapy with a protocol called HyperCVAD, alternating
with Methotrexate, from MD Anderson
in Texas. He completed his regime in November, and has since had clear
CT
Scans, and blood work since then. There is light at the end of the
treatment!
Please feel free to email as you go if you like. Neptunes Advice is
VERY
GOOD. Bad news is that Burkitts' liek is My husband Brian was dx with Burkitt's Jan 99,he was 4th stage with over 80 percent bone marrow involvement. After 2 rounds of McGrath protocol he has been in complete remission. Brian does not have AIDS,just turned 60 and his only symptoms when dx were, back pain,tingling chin and sudden double vision. His otherwise excellent health and the agressive treatment from the oncology and neurology teams at Massachusetts General Hospital saved his life. We have been told the McGrath protocol has been very successful in treating Burkitts and Burkitts Like. In fact MGH started the treatment before they were sure Brian's lymphoma was Burkitts or Burkitts-Like. As you probably know both are more common in children or young adults and very uncommon in 59 year olds. The concern was Brian tollerating the aggressive chemo and intrathecal treatments. Please feel free to email me, I will be praying for you and your friend. Mary Lou Lysette, I just scrolled down and read this earlier post about your boyfriends' treatment situation. I'm glad he's been approved for Medi-Cal, but 4-6 weeks is TOO LONG to wait if he's that sick. Get him to a major comprehensive cancer center/teaching hospital ASAP. There should be a "public" hospital that suits that criteria near you. California has several excellent ones. I don't care if he doesn't have insurance. They'll take him if you wheel him in. If they don't, call up the local newspaper and tell them your 28 year old boyfriend is dying from a rare cancer in the most technologically advanced country in the world, in a state with one of the most comprehensive aid programs available to its' residents, and it's all because of red tape. Then call everyone you know and ask them to flood same newspaper with same story, modified to suit their relationship with your boyfriend. They'll take him. Where are you in California? I might be able to help with a referral. Please let me know if I can help. Neptune Neptune, Thank you for answering. You have wonderful knowledge. I am starting to feel overwhelmed by all the maddening bureaucracy, but I hope it's just how I feel today. I've been putting up a good fight for Rob. Two days ago the doctor had his last talk with us. They refuse to operate on his 100% blockage of the intestine because they feel the tumor will just grow back and he will not heal from the operation. The mass has doubled in size in two weeks from 7cm to 15cm. His pain is so bad now that they are giving him whatever he wants. I was there last night when they increased his Demural to 100. Yes, I am very scared. More optomistically, I made contact with a Doctor yesterday at USC Norris Cancer Center. His secretary is trying to fit Rob in the Doctors schedule for Tuesday morning. (We live in Los Angeles). I know Rob does not have the coverage necessary for the hospital. I tried to take him there when he was first diagnosed. The Doctor said he would see him, it was the hospital that didn't take Medi-Cal. I am praying we can see him. Right now I am pursuing surgery as the way out of the woods. The county hospital he is at insists he is going to die and just want to manage his pain. The Doctor told me I have the wrong attitude about surgery and said they are trying not to kill him quicker. I know he cannot live with a blocked intestine - that became blocked while staying at the hospital, but the goal is to get him to the Burzinsky Clinic in Houston. I just found out today that even that therapy takes 6-8 weeks for results, altough I have read about tumors getting smaller in as little as 3 weeks. I know we are running out of time and I appreciate any and all information you can share. As I said, we are in Los Angeles. A benefit is in the works for Rob and I went to bank today to open a special fund account for donations. That will hopefully be open by tomorrow afternoon. There has already been one article on Rob in a music magazine (he is a well known DJ) where he spoke about his cancer and we want to call everyone now and let them know his story. I do want to contact the Los Angeles Times. I am very angry at how his cancer has been treated. I feel they wrote him off at diagnosis. How do I save the life of this brillant young man? Today all we have is prayer and shear will. Lysette Lysette, Give me 24 hours to get some information together for you, I'll see what info I can get. In the meantime, call everyone you know and tell them Rob's story. Hang in there. Neptune Lysette, Have you tried Cedars-Sinai? Dr. Koeffler (Phillip) is the Director of Hem/Onc there. Phone #: 310-423-4609 He might be able to direct you to someone on his service that can help. Be persistent. Ask to speak with him personally, to call you back if necessary- but as soon as possible. ASAP. Stress that. If you don't hear within a day, call back again. (And again. And again....)Calmly relay Rob's diagnosis and treatment history, mention your concerns about the county hospital he's being treated at, mention his strong desire to live, mention he's a popular local DJ. Mention his rapid decline and growing tumors which you feel are due to unresponsive medical care. To find what physicians accept Medi-Cal at Cedars, call 1-800-233-2771... but don't worry about that. It's not an important factor right now. #2, you might try the National Institutes of Health, National Cancer Institute in Bethesda, Maryland. They have many clinical trials (free) available for lymphoma patients. They all have different entry requirements, so without knowing Rob's clinical situation I can't point you at one in particular. But call Patient Recruitment at 1-800-411-1222 and tell them your situation. They'll be able to put you in touch with someone who can help. Another thought- can you get his radio station to send out a few pleas for help? Maybe match donated funds?Advertise your fund-raiser? I know you're already working tirelessly on this, so forgive me if I'm reiterating spent ideas. Did you call the Leukemia Society and the Lymphoma Foundation? They might be able to help too. I'm still worknig on this here, let me get back again tonight. Hang in there, Neptune Dear Neptune: Thank you so much. You are a great help. I am going to do everything in my power to transfer Rob to Cedar's tommorrow. Last week a doctor there said he would see Rob for a second opinion only. Unfortunately, all communication has been through messages as the doctor is out of town and his assistant was out ill friday. I have since learned about hospital to hospital transfer, and that the social workers and doctors (we need a cooperative doctor on each end) can make it happen. Late Friday, I saw Rob's hemotologist on the floor and told him my plans. He said he would cooperate and then told me Rob's kidney is starting to be "not right" and that it will probably only be another week ot two. I can't believe this is happening! They will not help him and don't take the time to let us know what is happening inside his body. At least he had a blood transfusion yesterday. He is fighting and told me yesterday he feels he still has a chance to beat this. Regarding your questions: Yes, I called the Lymphoma Research Foundation. That is where I received some Doctors's names and numbers. He has an appointment at USC Norris for thursday, but he needs hospitalization. Norris will not take his because of his insurance. Cedar's has to take him. I am praying so hard everything goes smoothly tomorrow. We can't let any more days slip away. His symptoms are changing so rapidly. Thank you for all the phone numbers, I will call those places too. My main concern for now is what I can do and say to Cedar's if I encounter resistance to admit him. We already waited the weekend because we have to talk to a doctor first, but I am wondering if I can bypass that if need be. Rob has to be transferred by ambulance, or I would just wheel him into emergency. The fundraiser is going fantastic. Rob set the date for March 23rd, I wish it was sooner but he is really the one planning it and he feels that is the better date. He isn't on the radio right now. He is a mix DJ, a club and event DJ. Radio will definitely promote the benefit and I will pursue the donation angle as well. I want to thank you again from the both of us. You are a wonderful help. love & prayers, Lysette
|
