What type of lymphoma were you diagnosed w... - Lymphoma Canada
What type of lymphoma were you diagnosed with?
Diffuse large B cell. Stage 2. As it's a common form it's almost like winning the Lymphoma lottery.
Non-Hodgkins Follicular Lymphoma. Doc didn't tell me stage or anything else, when I asked, I was told it's hard to stage. I was diagnosed Jan 10, 2012 after being told by 2 other doctors "Don't worry, the lumps on the roof of your mouth aren't cancer" then being referred to a dental specialist who did a biopsy of them. I've been on "Watch & Wait" since then doing tests. Last visit I was told usually for my cancer treatment starts within 2 years, so he said in just over a year from now I will need treatment.
My friend who was also on Watch and Wait sometimes called it "Watch and Worry"! She always says, it's hard to believe Watch and Wait is good news! But, of course, it is. Her treatments started 9 months after being diagnosed, so I guess she fell into the averages, as you mentioned.
I understand what your friend means. It is good news, but at the same time I find myself constantly on edge waiting for the "other shoe to drop" so to speak.
Hi Tily, Unfortunately, waiting for the other shoe to drop is the norm for Follicular Lymphoma. While you have treatment, and after you have treatment, you will still be waiting. Enjoy the time you have before treatment as best as you can, because treatment also has side-effects.
Really,is that what your Doc has said? Sorry to hear that because I know when I was diagnosed Feb. 2004 with NHL Follicular B cell I was put on Watch and Wait - which at first I was up set about, as I was stage IV with Bone Marrow involved and I did not start treatment until August 2008 when I went on 8 rounds of R-CHOP ( a form of chemotherapy not sure if you are familiar with terms yet or not )
I don't know how he/she determined that you would start with in the next year, praying that is not the case for you...? I have also had radiation as my cancer transformed to DLBC in the spine in 2010 and I am now back on W and W with a few swollen nodes.... and have been going back and forth for the last two years so ... that is my experience and I know of a lady who is on 8 years of W and W so I guess it depends on staging
I was diagnosed Feb. 2004 with NHL Follicular B cell It was actually found in my right breast/chest wall, they removed the node and a bone marrow biopsy was performed which gave me the grade and staging of the Lymphoma. Stage IV grade 2 , 3a -I was put on a Watch and Wait protocol which at first I was up set about, as I was stage IV with Bone Marrow involved and thought why can't they take this stuff out of me ...
I did not start treatment until August 2008 when I went on 8 rounds of R-CHOP
My cancer transformed to DLBC in the spine, a lamenctomy was performed and a biopsy showed bone marrow was still involved. So in 2010 I do two months of radiation and that was in March of 2010 and I have been back on W and W with a few swollen nodes that are not large enough to remove so W and W it is.
I don't mean to sound ignorant but what is DLBC...I will probably know once you tell me but for now I don't haha
I was diagnosed with SLL - Small Lymphocytic Lymphoma - 6 months ago. I am currently on the ''watch and wait' regime. I cannot find a community of others who have SLL? Most seem to have CLL - Chronic Lymphocytic Leukaemia. There is a difference. I would like to make contact with others who share my disease please? I hope to hear from you and Merry Christmas.
I hope you had a wonderful Christmas.
Thank you for letting us know that you are looking for others that have been diagnosed with SLL. We'll do our best to bring more people to this community so that you can make contact with other SLL patients.
I have been diagnosed in 2018 with chronic lymphocytic Leukemia CLL/small lymphocytic Lymphoma SLL. Had therapy of Chlorambucil/Gazyva for 6 months, which I finished in December.
My doctor tried to explain it to me saying it is the same disease, but sometimes he calls it Leukemia and other times Lymphoma. Did you have any treatment yet or are you on wait and see?
Diffuse Large B-Cell, Stage 2. It's going on to three years Lymphoma free 
Congrats! That is great news.
FANTASTIC!!!!!!! Are you following a special diet?? What are you doing differently than before you were diagnosed??
@pestofall - Old post, but, please, people - educate yourself. Diffused large B-cell lymphoma is curable, meaning - can be cured often. And it is aggressive, meaning - fast growing, that's why it is usually treated right away. What Terry was "doing differently" was - probably - the fact that he did chemo or radiation treatment. You can't cure an aggressive lymphoma with a diet, there is not enough time, it's like pissing onto the raging forest fire. A slow growing lymphoma - maybe, I don't know, nobody has proven this yet.
Two types: Stage 4 Follicular and Aggressive Diffuse Large B Cell. Originally diagnosed with the Follicular in the fall of 2008 and relapsed in the fall of 2011 when it was discovered that I had the added bonus of the Aggressive Diffuse Large B Cell. An auto blood stem cell transplant was performed in July of 2012 which appears to have been successful.
Congrats ...I am happy to hear it was successful WOOHOO
Thanks so much. It's very much appreciated.
I was diagnosed with stage 4 follicular lymphoma grades 1,2 and 3. In March of 2011 I was given 8 cycles of CVRP I had 3 large tumors that could not be removed and could not be radiated.they were too close to organs.I am currently taking rotuximab for maintenance treatments every 3 months...I have 6 under my belt..my last maintenance will be in August 2013... At my annual check up the oncologist told me that the three rumors are gone...so remission for 1 yr it is..WOO HOO
I bet you are looking forward to August when your final maintenance chemo will be administered. It's a joyful feeling to say good-bye to chemo. Congratulations for persevering through 2+ years of treatment.
I am not familiar with the CVRP chemo regime. I had R-CHOP for my original treatment for follicular in 2008-09 followed by the 8 maintenance treatments of Rituximab. I don't want to startle you but please make sure your hematologist/oncologist is vigilant in screening you about the six month post-chemo mark. It was at this mark that both myself and another patient (with the same diagnosis and treatment as me) started to show the signs of the secondary lymphoma - Aggressive Diffuse Large B Cell. Both of us have since undergone the auto stem cell transplant.
I guess what it all boils down to is that we have to be our own advocate when it comes to our personal medical detection and the care we seek for it. Personally, I would like to have a full body contrast CT scan done yearly so that early detection can be more useful in keeping this disease in check. Unfortunately, that is not the current protocol where I reside. Having said that, I am very alert and vigilant about any changes in my body and if there is anything of concern to me, it is discussed at my next visit with my hematologist.
I am so happy for you that you are in remission and am hoping for the same for my husband.
Your experience sounds similar to my husband's. Diagnosed in Jan 2012 with stage 4 follicular. Lots of tumours in his abdomen, some wrapping around his ureter causing problems with kidney function and some wrapping around aorta. Started CVP-R immediately every 3 wks for 6-8 treatments. Stopped after 6 treatments because some lymphoma still showed signs of growth (CT scan Apr 2012). Tried to get some biopsies to determine if it had tranformed to more aggressive lymphoma but each attempt was inconclusive using a needle and never went through surgical biopsy). Another CT scan in Aug 2012 indicated shrinkage of tumors so started on Rituxan maintenance.
PS - my husband is also taking turmeric
I don't have a hematologist...and my oncologist didn't mention a 6 month checkup after my last treatment..
the CVRP is the pretty much the same thing from what I am told...except I didn't have the doxorubicin, I didn't lose my hair at all and every one including the chemo nurses told me that I looked better half way through my chemo than I did when I started.
.my oncologist wanted to give me the R CHOP..but the incision from my surgery wasn't closed after 6 weeks so he couldn't..he told me that CVRP was just as effective and not as aggressive.
..with that surgery I developed a hernia which had both my large and small bowel in it...they couldn't do surgery for the hernia..because of the chemo..so to be honest I didn't know whether I was nauseas from the chemo or the hernia..
I had a family doctor tell me when I went to him regarding changes...( before I was in remission) tell me the lymphoma is gone not everything is going to be about the lymphoma...needless to say I changed doctors which isn't easy..as none of them are taking new patients..
Thankful for telling me about the Aggressive Diffuse Large B Cell, I have heard this a few times...however every one that I have heard if from has had the R CHOP...hmmm something to think about...
Thank you for comment I really appreciate it...I hope your stem cell transplant continues to keep you well..that is awesome news for you..and myself..
Oh...I forgot to mention...with regards to the CVRP.. The "C" is the same as the chop...the v stands for vincristine,, then rotiximab and prednisone..I had 100 mg every day for 5 days..I have heard that is has only been around for a few years..what kind of diet are you eating?? My daughter is in university becoming a holistic nutritionalist and she is specializing in oncology, did you know that turmeric KILLS 80% of tumors?? I only eat chicken and fish..( I just can't give those two up)..she has also told me an alkaline diet is excellent...I eat raw as much as I can..I hope this will help..
I only had two cycles of Vincristine before it was removed from my chemo regime. I was developing numbness in my extremities, in particular in my fingers and toes, and this was caused by the Vincristine. I suggested to my hematologist that I would persevere through the remaining 4 cycles but he would not allow that. He indicated that the numbness would only become worse and often it would become permanent in patients who continued on with Vincristine.
My diet is pretty much a normal diet i.e. attempting to follow the Canada Food Guide. During the transplant process and for the first 100 days after transplant, I was on an immune suppressed diet and was closely monitored by cancer dieticians/nutritionists. I have voluntarily restricted by beef, chicken, pork intake but I was doing that prior to being diagnosed with cancer. I think it has more to do with age than the fact that I have cancer. When I was younger, my diet was quite heavy in animal proteins as well as vegetables. I have greatly reduced the intake of animal proteins and now eat more cheeses, eggs, yogurts as well as salads, vegetables and fruit. I seldom, if ever, eat fish and I have never eaten much of it. Now, I do have a penchant to things like......potato chips, popcorn, nachos....and the odd bit of chocolate. LOL Everything still tastes like cardboard and I'm about 8 months post-transplant. I honestly don't know if I'll ever get my taste sense back to the way it once was.
I have been diagnosed with Non-Hodgins Lymphoma Stage 5. In my bones, Splean, and I can't remember the other places. Been through Chemo and have been in remission for 2 years so far. Doctor's say I can live up to 15 years. We will see. I pray to God each day for another day of health and people around me say I have a great attidtude. What else can one do except live each day as if it is their last. That is what I try to do. My outlook on life has been forever changed and I try to be a good friend to all.
Hi susandoyle54 and welcome to these forums. I apologize for not welcoming you sooner. Like you, I have a great positive attitude toward lymphoma and I'm just not going to let it get to me. Congrats on being in remission for 2 years....may there be many, many more.
want to see how you are doing, I'm new on this site, it seems you haven't been on in 5 month, you have a positive attitude, so I really hope your doing better, jodiQ
Hi JodiQ, welcome to the site. This board has been quiet hence why I have not stopped by in 5 months but I do check often to see if there are any new posts.
I am doing well. I have had some medical issues as a result of the transplant but I am pleased to report that the resolution of those issues is ongoing and I am happy with the progress I am making.
thanks for answering up so fast, It's really past my bedtime, : ) but I'm researching every thing! when you say transplant, is that something you can elaborate on, I'm not up on all the treatments. we were told my husbands cll is non curable, but they want to start treatment, guess they are hoping during treatments and remission they will find something to cure or prolong??? Anyway I was glad to see you are around and doing better, what does the dr say about your prognosis? Again thanks for the feedback, very much appreciated.
JodiQ, with respect to Stem Cell or Bone Marrow Transplants, I would suggest that you speak with your husband's hematologist / oncologist about this. He/she would be the best one to point you in the right direction on whether it would be a feasible procedure for your husband.
You state that your husband's CLL is non-curable. Blood cancers - leukemia, lymphoma, myeloma and other blood cancers - are pretty much all non-curable. Remission is what is strived for with treatment and many patients do have long periods of remission. A cure would certainly be wonderful but, at this time, there isn't one so I'll take the next best thing...a long and happy remission.
Please let me know if I can be of further assistance to you and your husband as you travel through this journey. I would be happy to help out if I am able.
Hi, happy to hear from you, so you are in remission now? I thought iread somewhere that over age 55 they wont do transplant, my usbands brother had lymphoma after a really long battle, he did not make it, the bone marrowtransplant was in its infancy I believe he was the second patient they used it on, he lived in san Antonio, pat my husband never came down sick, but the golf ball size mass is still there he has many others, it just that this is quite noticeable, I hope they don't have to start treatments, but glad I found this site, hes not one to get on line, but I share what you say, take care and have a good day, its raining here in Virginia, getting cold too! Bye 4 now
Yes, I am in remission and have been since my transplant in the summer of 2012.
I believe the upper age limit for transplants here in Alberta is generally 65 years of age. There may be exceptions to this dependent upon each individual case. Perhaps each province and/or state have different age limits for transplants.
I had a blood stem cell transplant which is what is usually done for lymphoma and myeloma patients. I believe the bone marrow transplants are for leukemia patients. This may be different depending upon where you reside.
I'll be happy to answer any further questions you may have or assist you in any way that I am able to.
i was diagnosed 14 yrs ago with stage 4 aggressive nhl.. i had high dose chemo then chop.. i relapsed threee times then was good for 10 yrs.. this spring it all came back i have now had 5 rounds of gdpr it has been very gruelling and hard on me.. what i dont understand is why so many of you say your dr says watch and wait...
hello all, hope you are all doing well as i see it's been months since a post, i'm on here today for my husband, he has non hodgins lymphoma CLL diagnosis in Feb this year after biting his tonged
his lymph nodes got large, neck >under arms, they thought it was a serious infection in the body, then the cat scan basically started telling the story, three years ago he had thyroid cancer, they removed the whole thyroid, all this to a man that served 23 years in the military, and never sick. his is lying doormat they say it's a sleeping giant that they don't want to disturb, that was the Oncologist words 2 weeks ago. Today large golf ball size nodule in front of ,right in under chin.Got in to the Oncologist today, dr says: might be coming down with something, or we will have to start treatment in 2 weeks, we are quite surprise, since all was good 2 weeks ago? Well looks like there's a new kid on the block, and he's not a happy camper today, I hope they find a cure soon, any way again hope you all are will, look forward to feedback
Gosh, you have to watch those sneaky l'il cancer cells! They show up when least expected or wanted. I hope your husband will receive the best of treatment and that he will soon be able to say "I'm in remission". I'll be sending positive thoughts your way.
I have been diagnosed for a non Hodgkin follicular lymphoma stage 3B, on june 20 2013. At that time I had many internal tumors, including a very big one in the mediastinal zone (10.2 cm X 7.5 cm). A R-CHOP Chemotherapy beginned on july 16. Shortly after the 4th chemotherapy cycle, received on september 20, I had a tomodensitometry examination (TDM with iode), on october 1, which revealed a total remission of my cancer, e.g. no visible significant adenopathy, including the shortest inflamation detected prviously. Anyway, I received the two last chemotherapy treatments, the ultimate (6th), by november 4.
Apparently, I reacted very well to treatments. I can say today that physically and psychologically, I feel much more better now than in last april. My feeling is that I had this lymphoma since maybe 2 years, without knowing it, attributing my very numerous "little" health problems to anything else than a cancer (short respiration; night sudation; etc.).
With my excellent hemato-oncologue (Vincent Laroche) from Enfant-Jésus Hospital,Québec city, we established to continue with a maintenance rituximab treatment: for two years, every two months.
I have been diagnosed with NHL Stage 3a mantle cell Lymphoma. Oct. 10 2013. I have had two rounds of Chemo. {Bendamustine and Rituxamab} I will be getting 6 rounds total and than a autologous stem cell transplant. Very little side effects just some nausea and fatigue. Is there anyone else diagnosed with NHL type Mantle cell
I have been diagnosed with Non-Hodgkins Stage 5-3 years ago. Can't remember which cell type but had 10 rounds of chemo called CHOP. It was grulling but up until now I am still in remission. Get tired easily as now back to work after a year off. Doctor said I could live up to 10 years but have been good for 2 so far so counting down the years but living each day not thinking about it and trying to get the best out of life. Good luck to you and let me know how you are doing
Reading some of these comments, I find it hard to believe that some people are on a "Watch & Wait List" . I have never been on any list. I was diagnosed on a Friday by a Specialist, put in hospital that night without even going home and had my 1st treatment the flwg Wednesday and stayed in hospital for a week and only went home then because I begged my Doctors. I think this LIST is a disgrace as it is hard enough to live with the unknown for even a day! I don't know where you people are but I am in Canada and our Health Care System SUCKS most of the time but it has saved my life up until now and I am grateful for that!
I was diagnosed with Herpetiformis (HD, or "suicidal itching disease" in Britain) and Coeliacs in March of 2013 after a year of increasing skin agony. It was the third dermatologist who figured out HD was the culprit, by which time I had been unable to work for four months. This same dermatologist successfully treated the HD--a gluten free, iodine free diet moved along by a wonder drug called dapsone, once used for leprosy! My blood levels never returned to normal after dapsone treatment, as can happen with these autoimmune diseases when they are misdiagnosed for long periods of time. And I had many obvious swollen lymph nodes--ignored by doctors for two years until now. By June, Derma #3 sent me to a hematologist who quickly diagnosed NHL Follicular stage one or two, then three and finally four after a bone marrow biopsy. Still, in Toronto, I, too, was put on Watch and Wait. In August of 2013 extreme pain in my lower back required immediate attention. NHL had morphed into aggressive B-cell in the upper retroperitoneal cavity (don't know the stage!) and in November I began R-CHOP. I just finished four of six treatments. I can't say I feel well, but the largest mass has already shrunk by 70% and the pain, too, has subsided somewhat. I have had to take Neulasta to boost white blood cell counts, but this treatment also triggers The worst of my illnesses--Herpetiformis. As a result, I now take Sulfaszalazine for the skin, but will likely be back on track without it after Neulasta is stopped. I have been referred to a radiation oncologist to see if radiation of the large mass is advisable. I have no idea what my prognosis is at this point, but reading about other experiences on this site is reassuring.
Non-Hodgkins Lyphoma Stage 5. West through CHOP chemo 3 years ago and so far I'm still in remission and have been told that I can live up to 15 years so I take each day as a gift and try to not think about it and so far it is working
I suffered through diffuse large B-cell lymphoma and was stage 4. My white blood count went to zero twice. I had a ten cm cyst on my left ovary removed and both ovaries. Five chemo treatments (and daily Reiki...) later I was told "dramatic results, no cancer". I had a sixth chemo treatment and pet scan that said no cancer. It will be two years on May 31 since my last chemo. I was doing great until a test result came back with TSH level of 0.1. My doctor is not sure (oh I love my doctor but I've learned that they are human) and so is sending me to an endicronoligist. He thinks I have Graves Disease which is an auto immune disease (as is lymphoma) affect the large B cells. I'm worried of course that in fact its lymphoma. I've been reading and it is believed by homeopathic doctors that auto immune disease starts with a malfunctioning (or leaky gut) digestive system. I had two ulcers years ago and developed esophagitis. I'm not interested in doing radioactive anything and so will soon (when I have the money!) will go the naturopathic route.
I'm just wondering if anyone else has had a similar journey. I feel so grateful to be alive but want to be back to my old self. Maybe that's not possible. This thyroid problem is hanging over me. My TSH is the only test result that isn't within the normal range. :)....
I have been diagnosed (september 2014) with a Splenic B-cell lymphoma/leukemia unclassifiable (after a splecnectomy because my spleen was big and BM biopsy - stage 4). I'm in Watch & Wait. If some of you have the same type of lymphoma, I will be very happy to exchange some informations with you.
Extranodal Marginal Zone Lymphoma (MALT)
I was diagnosed with Follicular Lymphoma. It is an indolent (slow growing) cancer that can grow over years before being noticed. It can eventually start to grow quickly or transform (I think about 30% of the cases) to an aggressive type of lymphoma like DLBC. F.L. is not curable, but can be treated. Thing are changing, but currently, it comes back after treatment, and can be retreated, but it usually doesn't respond as well or as long to further treatments. Eventually it doesn't respond to treatments or the side effects from treatments become too much. People are usually diagnosed in Stage 3 or 4, as I was.
Diffuse large cell stage 4. 9/19. Have completed two week long sessions of DA-EPOCH -R in hospital and head back tomorrow. CT scans last week showed “significant improvement” so I am hopeful
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