What type of Lymphoma do you have?

I find it educational to learn about all the types of lymphoma that there are and, to the best of my knowledge, there are about 30 different types. Any time a member mentions one of the less common types, I find myself doing research of that particular type in an effort to educate myself and gain knowledge.

So, what type of lymphoma do you have? Please give not only the name, but how long it has been since you were diagnosed, the treatment that was prescribed, the prognosis for remission and/or relapse and any other facts that you feel you would like to share about your experience.

Let's educate and be educated all the while gaining knowledge. Knowledge is power!

63 Replies

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  • 44 male Calgary Alberta Canada. Diagnosed Dec 22nd via biopsy, confirmed Jan 25th 2017.

    Anaplastic Large Cell Lymphoma ALK 1 Negative Cutaneous. My form of Lymphoma is rare only 3% are cutaneous being in the skin. I had 12 lesions ranging from the size of an M&M to a quarter. Only 2 showed as active Cancer on my PET so my body is fighting it. I am on a wait and see, as it could stay at bay for 3 months or 3 decades. The odds of it spreading are under 10% since it is only in my skin.

    I received the best possible news a few days ago according to my Oncologist

  • From one CalgarIan to another, thanks for your reply. I will now be researching your type and adding to my knowledge.

    You are in good hands at the Tom Baker. I can't say enough good about them.

  • We have settled on Waldenstroms macroglobulinemia it would seem 😀 Diagnosis number four in as many months, learning that the rocket science truly is in the nitty gritty pathology and microscopic details. I'm stage 4 meaning it's in my bone marrow (30% infiltration) as well as a goodly number of smallish but swollen lymph nodes. They say I have probably had it at least ten years! Came to light because I went to the er with extreme shortness of breath and a pounding heartbeat. That turned out to be rather profound anemia (4.5 hemoglobin) this summer. As the diagnosis has evolved they are thinking I do not have a discrete disease in my bone marrow, but instead it is the lymphoma in the marrow causing red cell production problems! And I hope they are right because lymphoma and myelodysplastic syndrome at the same time would be tricky to treat not to mention overwhelming, though it remains a remote possibility. So a major goal of treatment for me will be to see my bone marrow rebound. Then I will not have to live a transfusion dependent life! And I am flat out exhausted so really hoping that improves too. Starting rituximab and prednisone on Tuesday morning and CANNOT WAIT! I'm a 56 year old woman with plenty of life to grab hold of in front of me

  • Thanks, Glenmeadow. You have posted before about your type and that was one I had never heard of before. It gave me the impetus to start this thread so that we could learn about other types of lymphoma.

    I hope that the rituximab will be beneficial for you.

  • Tinker bell you blow me away! You have severe ra and two NHL lymphomas? Wow. I know you must be a warrior and yet you are so unassumingly and patiently encouraging in this venue To all the rest of us who are probably coping with less. Thanks so much.

  • Okay...now you have me blushing. Thanks for the compliment. Yanno, when it comes to my health issues, I am too stubborn to give in to them so I give every bit of grit and determination that I have to not letting them win. Back in 2008 when I was first diagnosed, I coined a mantra for myself that I have carried with me from that day forward. It is:

    "I choose to face adversity with courage and positivity."

    It has served me well and we all know how adversarial cancer can be!

  • I have Waldenstroms . All systems the same. I was diagnosed in June 16. Have had treatment and waited for my three month check on March. Feeling good. Hope all goes well with your treatment.

  • Hi Anne! Did your anemia improve or the %i filtration in the bone marrow improve with your treatment?

  • Anaemia gone. Don't know about the bone marrow. Will be asking when I see the consultant.

  • Hi Anne,

    Thanks for chiming in. We now have two participants with Waldenstroms.

    It's great that you are feeling good and no doubt your three month check up in March will bear good news for you.

  • Anna don't know I talked to you yet but I have had Waldenstrom's since 1991

    Sue

  • Suzyq it is good to know someone that has Waldenstrom's too. Also that you have had it for such a long time. Makes me feel more positive. When I was diagnosed and told how rare this was it was quite a shock.

  • WHEN MY HUSBAND AND I CAME OUT OF DOCTORS OFFICE THE DAY THEY TOLD US, WE SAT IN THE CAR AND CRIED CAUSE WE WERE IN SHOCK. MY CANCER DOCTOR TOLD ME IF HE HAD CANCER AND COULD CHOOSE WHICH ONE IT WOULD BE WALDENSTROM''S.

    RITUXIUM WAS HAS DONE WELL FOR ME, HAS CONTROLLED IT QUITE AWHILE NOW, WHEN I FIRST GOT IT 5 YEARS WAS THE MOST WE COULD HOPE FOR AND I HAVE GONE 23. THE THING WAS THAT CAUGHT MINE EARLY AND NEW TREATMENTS COMING ALL THE TIME,

    I LOVE TO TALK ANYTIME ANNIE BECAUSE IT IS WONDERFUL TO CONNECT WITH SOMEONE. TO COMPARE THE PROBLEMS THEY MAY OR MAY NOT HAVE AND COMPARE NOTES.

    SUE

  • Hello I have Waldenstrom'S it was found in 1991 when I was 45 and 68 now. When that first found it was so rare that insurance didn'the want to cover. I have been lucky. I had infusions oder Rituxim and has controlled for 5 years +.

  • That is awesome and so good to hear it is holding!

  • SuzyQ, it's encouraging that you and lymphoma have co-existed together for that length of time.

    The fact that your insurance did not want to cover you does not come as a surprise. I have had to battle with an insurer over coverage and their insistence that I return to work when all the medical evidence showed that I was clearly not medically ready to do so. The insurance company may have won the battle but in the end I won the war!

    I'm glad that you are doing well and your lymphoma is controlled.

  • Thank you. I am retired now but if I had to work I couldn't even when I was younger. I am doing well but the fatigue has been terrible for years and have pain everyday. Remind me what type you have I am new on her and trying to keep. There is one person on here that has same as me.

    Sue

  • I believe there are two people in this thread as well as yourself that have Waldenstroms. I believe they are Glenmeadow and Anne.

    I have Follicular as well as Diffuse Large B Cell Lymphoma (DLBCL).

  • I talked to Glenmeadow but not Anne

  • Hi, I have said my lymphoma has been treated with different chemo in last 5 years, now waiting for bone marrow transplant, my itching and burning has greatly subsided, but I'm constantly fighting fatigue and body aches. Also tried B12 shots, but they didn't help, oncologist said fatigue is from chemo, I get a shot every 6 weeks. Anyone have any advice? Should mention my discs I'm back are fragile, have had 4 operations in 1 year, 2 years ago, although dr said it wasn't related to cancer, I can't help but wonder. Anyone had anything similar with cutaneous T-cell?

  • Im a 54 yr. old female with stage III Nodular Marginal Zone NHL. I was diagnosed October 2016, I've had two cycles of Rituxin & Bendamustin (need 6 to 8). I'm not sure what my prognosis is although I've read that it's not curable but treatable.

  • I'm happy that you have chimed in. Another type of NHL we are being made aware of. In November 2016, i finished 6 cycles of Rituximab and Bendamustine and I am once again in remission. As you are no doubt aware, there is no cure for any of the blood cancers so the word "remission" is what we all want to hear.

  • Hello! Speaking on behalf of my husband Raja. He has Mantle Cell Lymphoma, 50% bone marrow involvement, a few bright but small nodes in abdomen as per Pet/Ct scan. Spleen enlarged to about 20cm and MCL was also found in small intestine as revealed by the polyps removed in the colonoscopy. MCL sometimes finds its way to the intestine so always better to have a colonoscopy. In early September, Raja had a bad case of diarrhea followed by constipation. At first we thought it was something he ate but then the night sweats and fever and chills were triggered and we started the blood work. It was first thought he had CLL because CD 23 showed up positive in the flow cytometry. Turned out a slight positive is closer to a negative thus turning the arrow to MCL. It is so important to be aware of differences in lymphomas so thank you for raising this awareness. Raja has undergone 4 cycles of Bendamustine/Rituximab. He will be having a pet scan end of this coming week. He has two more cycles and then off to a stem cell transplant. Good to note also that his ki67 was 2% and Sox11 was negative putting his cancer the indolent zone. However treatment was inevitable due to the symptoms he had.

    Hope that helped!

    Reem

  • Tell me more about ki68 and the other factor which indicates indolence never heard of those and love the education. Thanks!

  • Hi Glen. Ki67 is a cellular protein marker for cell proliferation. If it's value in less than 10% it indicates that the disease is indolent. Sox11 is a biomarker that is present in MCL. Sometimes it is not expressed at all indicating indolence as well. Now if you read the literature on MCL, the role of sox11 and ki67 are still controversial but are nevertheless considered as strong prognostic tools. We had that dilemma on choosing treatment because with MCL they usually go for the kill but with BR being a more targeted and less toxic approach we trusted an oncologist who believed that in Raja's case we should not go for the overkill. Pet scan will be in two days to see howeffective Bendamustine Rituximab combo has been. Praying for early remission 🙏🏼

  • Reem, thanks for taking the time to give a detailed reply. Very educational for those of us that are interested in increasing our knowledge of the various types of lymphoma.

    As mentioned previously, I have just successfully completed six cycles of Rituximab and Bendamustine. I note that your husband is scheduled for a stem cell transplant in the near future. I had a successful autologous stem cell transplant during the summer of 2012 and that type of my NHL remains in remission. (I have two types of NHL.) If I can answer any questions about stem cell transplant from a patient's point of view, I would be happy to do so.

    All the very best in Raja's continuing treatment.

  • Thanks Tinkerbell. I will ask a few questions when I clear my head after my husband's Pet/Ct scan on Thursday. I salute you for your positive attitude and you strong will. When we first came to terms with Raja's MCL we decided to name the new phase of our life " The Healing Journey" . All the best with your remission and may your journey be one of healing too 🙏🏼

  • Hello Tinkerbell! Raja's PET scan came back. The meds are working apparently as most of his nodes shrunk a bit and bone marrow showed no abnormal activity. As for spleen, it is still at 20 cm but has improved in terms of activity. Will be meeting our transplant specialist again next week. We were told that I can stay in the hospital with him for during the whole transplant. My main concern is septic shocks and infections. What was your experience like? I know that extreme fatigue is part of the procedure but am wondering how easy it is to identify and tackle infections when immune system is at its lowest. Thanks for sharing. 🙏🏼

  • Hi Reem,

    You asked about septic shock and infections throughout the transplant which are very real concerns as both you and Raja head into the transplant process.

    As my oncologist relayed to me pre-transplant, hospitals are a prime source of bacteria and germs. His words proved to be true for me.

    It was in the hospital that I managed to contract a very tenacious C-Diff infection as well as a blood infection. The blood infection was treated by the transplant team while I was an inpatient. The C-Diff lasted the better part of a year and after a regime of heavy duty meds prescribed by the Infectious Diseases Clinic, I was finally able to shake it. Perhaps if my immune system had been operating normally, the C-Diff would have been cleared up faster.

    My advice to both you and Raja is to wash your hands thoroughly and often. Wear procedure masks and gloves both in the hospital and in your everyday life for the first couple of months post-transplant. Be careful of the foods that are touched and ingested. Make sure foods are washed and/or cooked thoroughly. Don't shake hands, touch doorknobs with bare hands, buy foods from the bulk bins, etc. Avoid being around animals or pets that you aren't usually around or visiting locations where they are.

    Simply put, be alert of surfaces and situations where germs and bacteria thrive and take the necessary precautions to alleviate contact. At times, I felt I was rapidly becoming a germaphobe living in a bubble but it was absolutely necessary to guard against infections.

    As far as keeping an eye on and tackling infections, your transplant team will be on top of those. They are excellent at identifying and nipping them in the bud. Raja will be verily closely observed throughout this process.

    You state that you will be staying at the hospital with Raja throughout the procedure. I caution you to take care of and be good to yourself. It is important that you do so because you will be Raja's caregiver once he leaves the hospital. That, in and of itself, is tiring. While Raja is in hospital, take the time to have lunch with a friend, have a mani/pedi or simply go home for an afternoon nap in your own bed. You will need these few hours every so often to try to have a bit of a normal life before Raja comes home post-transplant.

    I hope this has helped a little and if you have further questions, please just ask.

    Liz

  • Thanks Liz! That was very helpful. We will be extra cautious. I was wondering about blood and platelet transfusions. Did you need any throughout your procedure and after you left the hospital?

  • If I recall correctly, I did have transfusions at times during the procedure. I also was the recipient of IV fluids directly followed by an IV diuretic. I could never see the purpose of filling me full of fluids and then immediately trying to get those fluids out of me. A lot of running back and forth to the bathroom. 😆

    Another thing I received were Neupogen/Neulasta shots when my neutrophils were low.

    Raja will be so well taken care of that he will be receiving treatments, blood, medications, etc. before he is even aware he needed them. The transplant team is kind of sneaky like that! ☺

  • There are more than 60 NHL subtypes, although a number of them are quite rare. (Source - cancer.net/cancer-types/lym...).

    In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). She took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial and has been in complete remission for 11 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

  • I appreciate you taking the time to reply. Your wife sure has had some trials and tribulations throughout her travels with cancer. Hopefully the CAR-T will be the treatment that will put her into complete remission.

    You mention a couple ofriends drugs that I am unfamiliar with so I have some research to do now.

  • It's great to see so many replies and different types of NHL being discussed. All of the responses will help to educate and gain knowledge for those of us who have an interest. I'm glad that I decided to start a thread on this topic.

    Having said that, I guess I should supply some information on my travels into the realm of having NHL.

    In 2008, I presented with some rather puzzling and severe symptoms. I was very ill and spent 18 days as an inpatient while a battery of physicians poked and prodded in an effort to diagnose exactly the type of cancer was present. They knew lymphoma was present but were of a mind that it was a secondary cancer. My symptoms, test results and biopsies were so puzzling and inconclusive that it made it difficult to reach a definitive diagnosis. I was fading fast and needed treatment sooner rather than later. To that end, my oncologist decided to treat for Follicular. I did the 6 cycles of R-CHOP followed by 2 years of Rituximab maintenance.

    Within 6 months of completing the Rituximab maintenance, I once again presented with symptoms albeit not the same as my 2008 experience. A fine needle biopsy results indicated that Diffuse Large B Cell Lymphoma was present. We connected the dots from back in 2008 and realized why my symptoms were so puzzling at that time. Apparently I had both Follicular and DLBCL at the same time and while the R-CHOP treated the Follicular it did nothing for the DLBCL. I was immediately scheduled for an autologous stem cell transplant in the summer of 2012. My chemo regime for the transplant was R-MICE and R-BEAM. I remain in remission on the DLBCL front.

    Fast forward to the spring of 2016 when the Follicular relapsed. I am back in remission after 6 cycles of Rituximab and Bendamustine.

    Apparently in one of my less than lucid moments back in 2008, I signed up for the 4 year cancer plan. The burning question is what will 2020 bring? <----we all need humour as we travel along this crazy cancer road.

  • Wife has [ ctcl ] mycosis fungicides’ NHL. Had since 20s undiagnosed, diagnosed 12 years.

  • WOW! That's a mouthful. Never heard of that one before. I will definitely have to research this one.

    Thanks for sharing.

  • Wondering what Drs have advised her long term? My ctcl with Sezary is also mycosis fungocis as well! It's not very common so it feels like treatments are a hit or miss according to oncologist

  • I am a 64 year old female. I have Cutaneous TCell Lymphoma,(CTCL) .After many years and being seen by many doctors I was finally diagnosed this past September. I was told I had everything from dermatitis, eczema,allergies etc... The last couple of years was put on very expensive and kind of painful injections for the treatment of psoriasis. Lost my hair, depression set in. Finally had a biopsy that confirmed CTCL. I saw an oncologist that specializes in Lymphoma and was sent to a dermatologist that specializes in CTCL .Now I'm on methotrexate (after a very expensive retinoid didn't do much)and steroid creams, trying to get my skin less red so I'll be able to have light box therapy. I am told this is rare but "treatable" cancer that is indolent.( slow growing) To be honest, I am tired and worn out. Just want to fell human again. (This explanation was an abbreviated )

  • budsmom, it sounds like you have been to there and back again. It's very frustrating and I am sure there have been many times that you wondered when all of this to-ing and fro-ing would bear some sort of resolution. Hopefully, you are on the right track now and your health will resolve to a more even keel.

    Methotrexate...it seems to be a multi-purpose drug. I was prescribed it for my severe rheumatoid arthritis. It didn't help all that much but that could be because almost at the same time I was prescribed it, my downward spiral into cancer had begun. I do realize that it is used in cancer treatment but I don't hear of it being used all that often.

    Wishing you wellness!

  • Know how you feel, I've done the light therapy too! Have been treated with Alamtuzab, six weeks 3x a week ,now every six weeks also took medical canabis oil for itch and burn. It's helped a lot, looking like my old self,but it's only a bandaid I'm told, but there is relief!

  • Canabis oil?? Wow really .Did light therapy help a lot ?Dr. told me that is what the ultimate therapy is, but trying to get the itching, burning and redness under control.

  • I was on methotrexate a couple of years back when it was thought I had psoriatic psoriasis.Thanks so much for your encouragement. Wishing you wellness too !!

  • Hi I was diagnosed with metastatic pancreatic cancer in September 2015 after presenting to the GP with unresolved pain in the upper right quadrant. Unfortunately the first specialist I saw was a waste of time (literally) but it was my time he was wasting - second specialist I saw first week in December was able to tell from the xrays that the lesions that were seen as metastasis were in fact in previous xrays before the golf ball sized tumor in my pancreas. My dear husband and I went through 2 months of sheer hell thinking I only had max of 10 months to live with that diagnosis.

    The Specialist organised for me to have a Whipple's Procedure on 8 December - the op lasted 10 hours, 3 days in Intensive care, 2 days in high dependancy then 5 days on the ward.

    The Specialist rang me at home to tell me that the pathology showed that the pancreatic cancer turned out to be pancreatic lymphoma Diffused Large B Cell Stage 2 (after bone marrow and PET scan).

    RCHOP 21 with an additional 2 Retuxamab from February to August and 5 hospital stays with neutropenia resulted but I am now 5 months in remission but the last PET scan led to a colonoscopy on 21 December with the results showing a thickening of the bowel wall and the pathology on the polyp removed showing positive for low grade cancer. Seeing my hematologist next week to see where to from here. Fighting panties back on LOL.

    Not meaning for this to be a whinge - it's not I am very positive. I am in Australia and am a 65 year old female. Hope this is of some assistance Tinkerbellcyg - and good luck to all on this site😆

  • Fighting panties OMG I LOVE IT! you have made my day with that one. God bless you!

  • Gosh, Dragongranny, you sure are getting up close and personal with the medical systems and various medical conditions whether you want to or not!

    Cancer is a sneaky bugger...it shows up unannounced, when and where you least expect it. In Canada, the phrase is "big girl panties" but "fighting panties" works just as well!

    Staying positive will see you through your latest adventure in Cancerland.

  • Just bought myself some red stripe fighting panties 😀

  • The fact that they are red signifies that they are fiercest fighting panties one can buy. 😨 You go, girl!

  • Low Grade Follicular Lymphoma

    diagnosed July 2015, Stage one Grade one

    One node on right side of neck, removed no treatment

    watch and wait every 3 months doctor said it can be every six months but I prefer three to feel more secure....

    no symptoms whatsoever....not tired, normal....

    I guess im lucky....

    I agree knowledge is power

    I also would like to know if there is any supplements we can take that helps.

  • Josie, indeed you are lucky. It sounds like your lymphoma is under control and being monitored as best as can be.

    The only "supplements" I take are simply just normal, everyday over-the-counter supplements that are generally recommended for an individual in their mid-60s: Calcium, Vitamin D and Over 50 Daily Vitamins.

    The only other thing that might be very loosely considered as a supplement is I receive monthly ivig transfusions. ivig = Intravenous Immunoglobulin which is a big word for a plasma (antibodies) blood transfusion. Even with the ivig transfusion, my immune system is operating at only about 50%. (My immune system was stripped down to facilitate a stem cell transplant in 2012 and it has never really recovered as it should and does with most patients who undergo transplant.)

    Wishing you continued health in your future and thanks for contributing to this thread.

  • Mantle Cell Lymphoma, diagnosed stage 4 Feb 2013. Watch and wait till Dec 2013 when enrolled in a trial of Revlimid/Rituximab. Finished the Revlimid, still on Rituximab every 8 weeks. Seems to be doing the job. Still tired, intestinal issues, neutropenia, numbness - just the new normal!

  • Elseas, it's interesting that you were treated with Revlimid. I know Revlimid is heavily used in the treatment of Multiple Myeloma but I have not known a lymphoma patient to have been treated with it. A friend with Myeloma strongly dislikes being treated with Revlimid and often remarks about the tiredness it brings with it. She would love to be taken off of it. (She's been on it since transplant back in July of 2012.)

    "Just the new normal!" is a phrase that all of us with cancer have come to understand all too well. And that "new normal" seems to be constantly fluid necessitating us to change and adapt on a regular basis.

  • Revlimid (lenalidomide) has shown success in some forms of lymphoma and is being studied for others. That combined with rituxan has been approved for relapsed MCL. Study I'm in was for never treated. Yes, there's side effects, but a lot less than the traditional R-CHOP chemo!

  • I have not had r-chop but that revlimid at just 10mg put me in the hospital in one week with neutropenia fever thrush mouth ulcers septic!!! I was put on it for severe anemia which I now know was the lymphoma interfering with my bone marrow. Oh and 4-6x an hour diarrhea and weepy miserable fatigue. I fear that stuff

  • Oh and a shingles relapse!

  • Waldenstrom's...noncurable but can be controlled.

  • Me too

  • Hello, thank you for asking. I am Kimsome.

    In 2010 I was diagnosed with NHL/SLL Large B cell cd20, STAGE 4.

    I was treated with high doses of fludara, Cytoxin and rituxin... followed by neulasta. Today, nearly 7 years later I have leukemia cells CLL in my blood and we are on wait and watch, although I am sick every month with illness from low immune system. In January 2016 it was strep throat, February shingles, April 3 pre melanomas removed, may sore throat, chills fever a virus, June continued chronic fatigue, fever, General malaise, July pretty good, just lack of energy, August pneumonia, October, fever General chronic fatigue, bones hut bat, neuropathy, November, pneumonia, respiratory failure, oxygen at 70 at Dr. Appointment... Sent to hospital for a week before Christmas. Still not feeling well. This has been going on all 7 years. Hoping to get Ig tests done and hopefully get IVIG TRANSFUSIONS.😁

    Thank you in advance,

    Kimsome

  • Hi Kimsome,

    Thanks for joining in the discussion. I am not sure what "SLL" stands for. Can you elaborate for us?

    You sure have had a time with infections, etc. from having a compromised immune system. I can relate however relief for me appears to have come much faster than it has for you. I have experienced pneumonia, a blood infection, horrible C-Diff that took a year to get under control, shingles twice and other lesser infections maladies. Once it became evident that my immune system needed some help, my oncologist lost no time in ordering monthly ivig transfusions. Since the ivig transfusions began, I am happy to say there have been no more infections.

    I hope your oncologist will quickly order ivig transfusions for you. What you are going through is so hard physically, mentally and emotionally on you never mind endlessly tiring.

    Please keep us posted.

  • I have cutaneous T-cell lymphoma with Sezary syndrome I've was diagnosed 5 1/2 yrs ago. Tried light therapy also 3different chemistry . Last one removed the burning tomato red itch. Canabis oil helped me reduce itching so I didn't go crazy. Now I'm waiting for bone marrow transplant

  • Which cannabis oil

    Do you buy and where do you get it?

  • Follicular NHL grade one stage one in my Mesenteric area next to the bowel. Im 52 had a laparotomy (Cut from top to bottom of abdomen)in oct 16 to get a biopsy of the enlarged nodes found in ct for diverticulitis (so found by accident ). Nasty opp but all healed now. on watch and wait as low grade no treatment needed yet .

    My mum had NFL diagnosed in 2005, Rchop chemo successfully till 6th session when it all came back but suggested change of chemo but unfortunatly she passed away that week aged 67 6mths from diagnosis - said not to be hereditary but im not too sure.. its a coincidence i have it now !!

  • Hi Family,

    It is interesting that both you and your mother were diagnosed with lymphoma. I have to wonder if it is hereditary. I am estranged from my family of origin but a few years back, I was advised of the passing of a sibling from...wait for it....lymphoma! Coincidence or hereditary? My guess would be the latter.

    Wishing you all the best as you move forward.

  • My journey with marginal zone lymphoma began in 2006. I had a new life with fatigue and pains that limited but didn't stop my life. I had an a iron infusion that cause anaphylactic reaction so it was stopped immediately.

    Then my spleen enlarged and my white counts, etc increased and life slowed down again. My wonderful oncologist tried Rituxin, but I suffered an anaphylactic reaction and the worse hip and joint pain that caused me to thrash around in the bed,so the drug was stopped immediately. Suffered prolong neurological problems also.

    Then a few years later I had to go to the ER with severe red rash causing rigors,chills, and anaphylactic reaction to possibly Naproxen, still not positive.

    Next we tried revIimid that resulted in a severe rash, rigors,fever,pain in legs, hips and joints. I could not tolerate chlorambucil.

    I made a second trip to MD Anderson for diagnosis and treatment in 2015. They pretreated me with prednisone and tried the rituximab very slowly while in ICU. It caused severe hip pain,tachycardia,mental impairment and hypersensitivity. Doctor agreed that I am truly allergic to Rituximab.

    Then we tried Imbruvica. I ended up in ER with severe anaphylactic reactions after 10 days on Imbruvica. My white count reached 252,000 at its highest. I had a diffuse drug rash on approximately 90% of my body. This caused almost total closing of airways so the most I could do was gasp loudly. Terrifying! Severe heart tachycardia again caused chest and back pain. I couldn't walk for a while because Imbruvica caused partial paralysis in my left leg. I could not lift my left leg, but it corrected itself after three days with drugs given in the hospital. My leg has continued to be weak but I function on a limited basics.

    Did anyone else suffer any of these side effect? My doctors are now looking for the unexplainable cause.

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