Latest Mantle Cell Lymphoma discussions http://www.cancercompass.com/message-board/cancers/lymphoma/mantle-cell-lymphoma/1,0,119,57,143.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi AllThis summer my husband had an autologous transplant and was slowly getting back to "normal" all results were good and we were starting to breath again - the doctors were amazed at how quickly his levels, and he, came back to normal. Just this last blood test (one week ago) show that his white cell count has shot down very low. We are waiting (and agonizing) for the results of a new scan and bone marrow test.Has anyone experienced such a thing following transplant???? I'd be grateful for any feedback, it's now roughly 3 months since the actual transplantDebbie http://www.cancercompass.com/message-board/message/all,29478,0.htm deb1211 Mon, 20 Oct 2008 00:00:00 GMT Hello there! I live in  Brazil, male, 37 years old and recently diagnosed with MCL. Next week I'm going to Sao Paulo to talk to different doctors and redo my exams.I don't know what's ahead of me but I try not to rely too much on what's on the web.I see here that a lot of people is doing well and at this point this is what I want to hear. I'm actually more concerned with my family, I have not told them so far... any advices on that? Thanks so much! Caio http://www.cancercompass.com/message-board/message/all,29440,0.htm caiodepaula Sat, 18 Oct 2008 00:00:00 GMT Hi All,I was a healthy male late 50's until I was diagnosed with MCL on 8/28 after a bone marrow aspiration, which showed 9.5% in my marrow.  A followup PET/CT shows no tumors in my lymph nodes.  I have not yet started treatment.  Since original diagnosis blood tests show no change, but I am concerned they don't give enough information.  Research suggests that there are subgroups of MCL patients who may be indolent and wonder if I fit into the group.  There is research going on that suggests indolent MCL patients may be able to go a long time before treatment.  I'm trying to determine how to test to see if the cancer is indolent.  Any suggestions in this area would be helpful.  Several oncologists have said I should just start treatment, but if the cancer isn't progressing and if I can track the progress with tests, why should I start? http://www.cancercompass.com/message-board/message/all,29433,0.htm IndolentMCL Sat, 18 Oct 2008 00:00:00 GMT My dad has got a very serious reaction to his chemo. One of his legs got VERY swollen and red. The doctors sais that they have never seen any patient with just one leg reacting. Has anybody else experienced the same? At present he is still quite swollen over the foot even though the doctors has managed to take it awy on the rest of the leg. Thanks! http://www.cancercompass.com/message-board/message/all,28473,0.htm Gunilla Sun, 21 Sep 2008 00:00:00 GMT Hi all My father male 55 has been detected with Mantle Cell NHL in June 2008.He has undergone  3 R-CHOPs so far with 3 more to go.Disease is in 3 rd Stage.He never had any symptoms until it was detected in the Biopsy and PET Scan confirmed the extend of spread.Surprisingly he is having no side effects after in the 1st week after the 3rd chemotherapy when I compare with the first two.Bone Marrow is uninvolved in his case.His will power and belief in GOD is tremendous.May be thats giving him all the strength.His counts are as normal as before.Whatever I have read on the internet about Mantle Cell is not very positive  w.r.t Remission and Survival.Can someone please provide me updated information about Remission and Survival in Mantle Cell.A Worried Son  http://www.cancercompass.com/message-board/message/all,28221,0.htm upinder80 Sun, 14 Sep 2008 00:00:00 GMT I posted a message about choking with Mantel. This has gotten worse and now we have a tumor in the back of her throat her doctor will do nothing not a trac said it's not worth the pain she will go thru for the time she has left. Does anyone know of any medicine that will stop the choking so she can peacefully I am afraid we only have a week left with her and want her to go peacefully. http://www.cancercompass.com/message-board/message/all,28129,0.htm Krisinmpls Thu, 11 Sep 2008 00:00:00 GMT If anyone has any information on anyone that has taken chemo using either Bortezomib (velcade) or Lenalidomide (Revlimid) please let me know how it worked or did not work for you - My father has to make a decision by tomorrow. I have tried reading information on using both together but because it is still a trial there is no information on using both together so I am wondering if anyone has used even one of these for treatment to tell me how they worked for them? Desperately would like imput from a patient or someone that knows someone with mantle cell lymphoma and how are they doing? http://www.cancercompass.com/message-board/message/all,27518,0.htm Ann211 Mon, 25 Aug 2008 00:00:00 GMT My dad is going to go through his second bout of chemo for B-Cell (mantle) lymphoma - anyone with any information on Revlimid? Anyone tried the new trial study where Bortezomib is combined with the pill Revlimid? This was offered to my Dad. The actual trial study is using both drugs at the same time- Anyone even using or has used Bortezomid alone? How did this work in either case for you? Need fast feedback please anyone? http://www.cancercompass.com/message-board/message/all,27487,0.htm Ann211 Sun, 24 Aug 2008 00:00:00 GMT My grandmother was recently diagnosed with Stage 3-4 Mantel Lymphoma she has it in her neck, armpits and felt something in her stomach she is taking rutexin and were on our 4th treatment with no signs of improvement. This last week she seems to have it growing in her throat and feels like she is choking. What can we do for this to make her more comfortable without sedating her. She is 91 yrs old. thank you. http://www.cancercompass.com/message-board/message/all,27457,0.htm Krisinmpls Sat, 23 Aug 2008 00:00:00 GMT My husband is dx with MCL since 2006. He had 3 R-chops. Than high Ara-C treatment and autologe stemcell transplant. The cancer is back since febr. Now he had his 2e DHAP- treatment. Next week he will have a Pet-scan and a CT-scan. Has anyone experience with allogene stemcell-transplantation??? http://www.cancercompass.com/message-board/message/all,27354,0.htm jolanda Wed, 20 Aug 2008 00:00:00 GMT Hey there  My boyfriend was just diagnosed, last week (7/18), with MCL. He has been at the hospital immediately after being diagnosed for chemo treatment. I dont know exactly how bad is the situation due to the fact that Im in Israel at the moment and its very hard for him and for me to talk about it in the phone. My major concern is that for the moment he is all alone untill Aug 22 when I will arrive at NY to be there with him. Im so devastated due the situation and the distance that put us apart and the impossibility of helping him trough this though moment. I have no clue how to handle the situation this far. I've been reading everything that I could find in the internet. Im looking for some understanding of the situation; what to expect and how can someone can help a love one go trough this moment.Debbie  http://www.cancercompass.com/message-board/message/all,26350,0.htm BeautsHands Tue, 22 Jul 2008 00:00:00 GMT Since my dx of MCL in 2/06 I have gone through R-CHOP followed by Stem Cell Transplant (my own cells) and 3 cycles of maintanence Rituxan. I am due for a PET scan in August. How long has anyone gone post transplant before relapsing? My husband and I believe I am healed, but I have been soooo tired lately ( it was one of my symptoms before dx). Hopefully it is all in my head, and really is because we just had all 3 grand kids for 2 weeks! Exausted!I guess I will always wonder is it back? Anyone have any experience with this?Thanks,Kathy in Va.  :) http://www.cancercompass.com/message-board/message/all,26280,0.htm 55kathy55 Sun, 20 Jul 2008 00:00:00 GMT Hello everyone My husband (53 years old - diagnosed January this year with MCL stage IV-) has completed 6 rounds of R-CHOP, he has had his cells harvested, and right now is feeling reasonably ok - a bit tired, has a bit of a cough, appetite fine (in fact he's back at the weight before chemotherapy started) We've just heard that next week he will go into the sterile room (foreseen for 5 weeks) receive all the radiation and chemotherapy treatment before they proceed with the autologous transplant. This is the part that we have both been panicking about since the very beginning of this whole "thing". We've been told that after the transplant he will emerge like a baby in the sense that the vaccinations he had as a child or as an adult are totally removed- so no protection against polio/diptheria/tetanous etc etc etc. We also undertsand that they will not be able to re-vaccinate before 6 months to one year after the transplant. Did anyone else hear about this?We have the agreement, in principle, that after transplant we will be able to receive maintenance therapy with RITUXAN but that this cannot be started before at least one year after transplant as the effects could be very dangerous on an immune system which has been knocked out. If anyone out there has done this and has any ideas for keeping occupied during the sterile room time, any tips for eating or keeping OK in that room, any information or experiences you wouldn't mind sharing with me, in fact any information at all - I would be so gratefulps-I live in BelgiumVery scared Debbie  http://www.cancercompass.com/message-board/message/all,25668,0.htm deb1211 Thu, 03 Jul 2008 00:00:00 GMT My mother was diagnosed with Stage 4 MCL a few months ago, she is 60 and otherwise healthy. She just started treatment in a hyper-CVAD trial at Hackensack UMC - in conjunction MD Anderson - the trial is the same protocol as the Nordic Trial which has best results for CR except they don't do stem cell transplant.Has anyone else gone through this? http://www.cancercompass.com/message-board/message/all,25650,0.htm meghan18 Wed, 02 Jul 2008 00:00:00 GMT Hello,My mother was diagnosed with MCL two years ago and her condition has decreased drastically. She is 75 years of age and according to her hematologist in Sweden, the watch and wait treatment is the best for her. Apart from living with MCL, she is also suffering from multiple allergies and is extremely sensitive to sunlight.I would be most grateful if anyone could give some advice and perhaps some tips on alternative treatment. My mother has looked into some alternative treatments such as hollistic medicine. Sadly I see no improvment in regards to her health. On the contrary. Her thrombocytes are below 80 and she looks very anemic. What can I do apart from supporting her through this difficult time? Thank you in advance,Anna    http://www.cancercompass.com/message-board/message/all,25332,0.htm bandepart Mon, 23 Jun 2008 00:00:00 GMT My husband (age 68) is in his 3rd relapse and is trying yet another clinical trial.  This one is Velcade, Bendamustine and Retuxim twice weekly for 2 weeks and 3 weeks off.  He's really sick from the side effects of, I suspect, the Velcade; nausea, constipation, very weak.  Does anybody have any suggestions.  He's lost about 40lbs and I'm afraid is getting very dehydrated.  Water tastes awful.  I'm trying white grape juice now.  OJ did work but I think the citric acid is bothering his stomach. http://www.cancercompass.com/message-board/message/all,25301,0.htm Zeena Sun, 22 Jun 2008 00:00:00 GMT My grandmother was diagnosed today with MCL...I immediately panicked and began searching on Google everything i could and after reading all that i became extremely depressed until i read the messages on this board...i have definitely calmed down, my only concern is that all the posts i read were ppl that were 70 years or younger...my grandmother is 85 years old.  i know she will not qualify for the stem cell transplant but what are her chances of surviving?  I know she is old and most ppl would suggest just living with it as long as possible...are the treatments even worth it for her at this point???  would  she suffer more just letting the cancer take her or going through the chemo at this time in her life....she is a survivor of colon cancer but that was about 8 years ago....just feeling lost right now.thank you for your time http://www.cancercompass.com/message-board/message/all,24862,0.htm aggieangel Tue, 10 Jun 2008 00:00:00 GMT Hello to all,I was diagnosed with Mantel Cell Lymphoma Stage 3b possibly 4. I am going in next week for my Bone Marrow Biopsy along with the Lumbar Puncture. I have been having terrible headaches and stomach pains. I will be starting Chemo Therapy on June 24th. It will be in the Hospital for 5 days and then home for 3 weeks. So I guess this will go on for 6 months. My Dr. said to eat anything I want. Is there anything that I can eat or do to feel good. I want to enjoy the time I have with my family before Chemo starts and I really feel awful the last couple of days. Any suggestions would be appreciated.Thank you   http://www.cancercompass.com/message-board/message/all,24742,0.htm Furry Friend Lover Thu, 05 Jun 2008 00:00:00 GMT My dad is has been delayed twice going in for his 3rd RICE treatment. His platelets are too low. He's supposed to have this 3rd RICE treatment before he starts to have his stem cell harvested for his transplant. But for the past month his platelets have been to low. I think they were in the 20's. Has anyone else experienced the low platelet problem? http://www.cancercompass.com/message-board/message/all,24667,0.htm Gothgirl111 Wed, 04 Jun 2008 00:00:00 GMT My family is wondering if anyone has any experience with Zevalin in treating MCL? And/or experience navigating the insurance/Medicare issues involved with Zevalin in treating MCL??Thanks http://www.cancercompass.com/message-board/message/all,24620,0.htm kathleenb Mon, 02 Jun 2008 00:00:00 GMT My sister was just diagnosed with mantel cell lymphoma... i was wondering if anyone knows what she should be eating to keep her immune system up so she is able to put up the best fight for her cancer.any help will be greatly appreciated!! http://www.cancercompass.com/message-board/message/all,24336,0.htm andrea0314 Fri, 23 May 2008 00:00:00 GMT My sister just got diagnosed with mantel cell lymphoma on Wednesday... All the information that I've found on the internet so far is quiet negative... I just wanted to see what I should expect in the coming months, weeks or years. http://www.cancercompass.com/message-board/message/all,24334,0.htm andrea0314 Fri, 23 May 2008 00:00:00 GMT I have had a recurrance after 6 years and took Velcade.  I am in remission after 11 treatments.  I have a lot of side effects such as fatigue, tinnitus, tearing eyes, and rough skin in places.  My question is how long after completing the treatment do you get back to normal from these side effects.GerryR http://www.cancercompass.com/message-board/message/all,24135,0.htm GerryR Sun, 18 May 2008 00:00:00 GMT HelloMy dad is 53 and found out he has MCL 5 days ago. He developed a grape like lump on his tonsils.  (we all thought it was a cyst, until he got the results from the biosopy)  We are going for the first CT tomorrow.  We will be meeting with a doctor in Boston on Friday to discuss treatment options.  Does it matter on what stage your at?  We are all very terrified. He feels great, and so confused on how and why he has it. It has been a VERY long and emotional weekend.  I freaked out when I read the scary stats online. After reading this blog, I feel a little better, but still confused.  What is Mantel Cell, and how is it different from regular Lymphomia? Does it attack your organs?  Is it throughout your lymphatic system or just in particular lymph nodes?  I am so glad they have websites like this you we can network and find great support.  http://www.cancercompass.com/message-board/message/all,23807,0.htm Hope28 Tue, 06 May 2008 00:00:00 GMT My sister is going in for round 2 of chemo and is scheduled to have a stem cell transplant if the MCL goes into remission.  Does anyone have information about the success of the stem cell transplant?   http://www.cancercompass.com/message-board/message/all,23140,0.htm sharonj Thu, 17 Apr 2008 00:00:00 GMT