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Lymphoma (Hodgkin and Non-Hodgkin)

Archives for July 2017

Day +5
1/2 way through the stem cell transplant! So far so good. The sitting around is soooo hard! I feel like Jabba the Hut! Sit in the chair and have food brought around the clock. Walking space is very limited. Not sleeping much, but I dont do anything to get tired. Thank goodness for electronics. Counts are in the toilet &…
2nd Relapse Hodgkins
Hi Everybody! Been 10 years since I`ve been on the boards..Just found out that my Cancer is back after battling Stage 4 Hodgkins twice with last remission 10 years. I always got such awesome support and advice from people like ourselves that would only know whats its like to be a Cancer Warrior. I`m sad its back for a 3rd…
Question about symptoms
Hello, Not sure if this is the right place to post this but some further insight would be greatly appreciated. About 7 years ago I started getting heavy night sweats. Every morning I'd wake up to a wet pillow and sheets, and my clothes would be drenched. The night sweats would come and go over the years and I thought…
Don't officially belong here yet, but......
I posted a topic the other day about my biopsies being sent to Dr. Elaine Jaffe at the NIH. We sent her three. An inguinal, epichoclear, and supraclavicular. The inguinal and epichoclear were read as "benign " and/or due to some sort of inflammatory process. She said she didn't care, she wanted them anyway. The…
Anchorage, Alaska T-Cell Lymphoma Patient Education Forum July 29th
The T-Cell Leukemia Lymphoma Foundation is conducting a patient education seminar/forum in Anchorage, Alaska on Saturday, July 29th, 2017. It will be presented at the Anchorage Marriott Downtown from 8:30 AM to 2:30 PM. As always, registration (required, but free) is easily done online and a continental breakfast and lunch…
What should I except when i go to the ENT doctor?
I found a swollen lymph node on the right side of my neck about a month ago. My doctor had me get blood work done two days ago that showed my white blood cell count was slightly high at 14 when the high normal is 11. I have no symptoms of being sick, so they were slightly concerned, but, said they werent extremely…
Newbie high groin lymph nodes, high calcium and b12 levels please help!
please if anyone had had experience with high calcium levels or highb12 levels please let me here your story. Very sick. Can not get a diagnosis. Going to see oncologist in 2 weeks. My calcium labels are slighly above high but am very sick and weak and have nite sweats but not drenching which my doc says all night sweats…
Anyone use Dr Elaine Jaffe for second opinion pathology?
New here. Anyone ever have biopsies sent to Dr. Elaine Jaffe at NIH? How long did you wait for a report? I'm trying to get answers. NO ONE can seem to make sense of my biopsies....all the symptoms for 2 years...including "off" blood work and B symptoms. Also, biopsies in not so good places....
Biopsy results
Hi, I am new and have some questions and wanted to see if anyone has had a similar experience. About 5 months ago I started to notice a small lump in my neck, after all things in between my ENT orders an ultrasound guided FNA. The results came back highly suspicious and the doctor told me it was highly probable that I have…
Chemo cap
Hello All, Has anyone used chemo cap? A nurse told my brother about it, but not sure if it works. Thank you!
Squamous cell carcinoma of the tongue
My daughter has just been diagnosed with squamous cell carcinoma of the tongue. lesion on left side appox. 1.5 cm was diagnosed June 28, 2017. She has been cancer free froma battle with non hodgkins lymphoma for 3 years
Staying Positive
I have decided to share an entry from my personal journal. I was in the throes of treatment when I wrote this on 7/28/13. I believe a positive attitude helps health. I believe that people who can remain hopeful, determined, and positive have better outcomes when faced with illness. I believe optimism heals. I believe that…
Questions about my Bone Marrow report
Hello everyone, My hematalogist quickly went over my bone marrow report with me, so quickly I didn´t understand it. He said He didn´t think it was anything to worry about. I will post it here, hoping you can decipher the meaning and give me some feedback: ¨3% of the B lymphocytes are identified as not showing light chains…
Hearing loss/ side effects of R-chop or methotrexate?
Hello everyone, I had 2 cycles of R-Chop ( but instead of doxorubiciin I get epirubicin), 2 cycles of intrathecal methotrexate and I am experiencing increased tinnitus ( buzzing in ears) and mild pain. I have had tinnitus for years but I believe the chemo regime is increasing it. Or I may have an ear infection. I need to…
SCT & pets
Does anyone have any information on stem cell transplant recovery & pets? Other than staying away from litter boxes, is it Ok to be exposed to your pet? Thanks! Cat
1st time doing Rituxan Infusion tomorrow for Extranodal Marginal B Zone Cell Lymphoma
Hello, I am 31 years old and I was just diagnosed with extranodal marginal zone b cell lymphoma. Noduals were accidently found in my lungs and ended up being cancerous. I am going to start my treatment of rituxan since it is was caught at such an early slow growing stage and I will not have to get chemo. I will be getting…
Rituxan maintenance schedule for follicular lymphoma
I feel that I am at a decision point in my treatment and would appreciate some input from this discussion board to help me to clarify my position. pleae would you let me know about the Rituxan maintenance schedule that you are on for follicular lymphoma and for how long you will be on maintenance. I have been on a 2…
continous fever after chemo
My brother is undergoing chemo for his lymphoma but since last 2 weeks he is continously having fever, due to which his chemo scheduled for today is also delayed.. But ther are no infections in any of his results. Is this ok?? Can anyone help??
Working my way back
Well 6 RCHOP sessions in the books ! 4 IT methotrexate in the books! Last dose of Prednisone done! I am sitting here realizing how blessed I am. I keep hoping that tomorrow I wake up and the fatigue is gone. I know that is unrealistic. I am just so ready to feel good again. The Oncologist was right when he said by round 6…
When is it time to switch doctors??
After my 5th treatment of chemo (R-CHOP/O-CHOP), I had a scary incident that ended with me in the ER. I had a very difficult time with chemo and my symptoms would peak about 2 days after treatment. This time, my symptoms took a downward spiral. I felt terrible as usual, facial pain, stomach pain, extreme sensitivity to…
Obinutuzumab?
I was diagnosed with follicular lymphoma, and started with r-chop for the first two cycles. I then switched to obinutuzumab (GAZYVA) for cycle 3-5 (didn't have cycle 6, but that is another story). I am currently in remission and have been told I will have maintenance therapy with the obinutuzumab every 2 months for 2…
chronic fatigue after remission
hello my friends,first time on the forum im a 3 year stage 3B hodgkins lymphoma survivor, i have chronic fatigue daily,since treatment has been over,haven't been able to find any help..I'm in Nashville Tennessee, would their be any doctor here to help me.Priscilla
Vaccines after SCT
Hi All! I have been told by my oncologist that 12 months after a SCT I will need to have my vaccines repeated. I have no problem with that. Is that the norm with autologous SCT? Do I need titers first, or should I just go with the vaccines?
What to expect
My mother was diagnosed with lymphoma. She had a node on her leg that kept growing and got infected. The doctor sent her to the hospital immediatly and it was removed. It was sent for diagnosis and came back as lymphoma. She just turned 90. She refused treatment due to her age and being frail. She also has lupus. She now…
Radiation on vertebrae
I am having radiation on my T11 vertebrae for B Cell Non Hodgins Lymphoma. I just had my tattoos today and had this question (after I left the docotors office) Why are they radiating me from my front instead of my back to get to my vertebrae. Wouldn't it go through less organs to go from the back? They told me I would have…
3 clean blood works an x ray and ultrasound! What are the odds I could have lymphoma?
So as the title says I have had 3 clean bloodworks a chest x ray and stomach ultrasound what are the odds I could have lymphoma? Let me also add in I had an fna biopsy done which came back suspicious but then a core needle biopsy that came back negative (what are the chances of a false positive and negative?) And little to…
IT or intravenous methotrexate; which is better?
Hello again, I am receiving IT methotrexate. I read in a study or 2 that showed no protective results from IT methotrexate. The studies claimed it didn't distribute evenly in the cns, nor did it penetrate well the cerebral parenchymal. The studies showed protective results from intravenous methotrexate. What is your…
Public health care in Costa Rica for DLBCL; What am I missing?
Hello everyone, I am being treated for DLBCL at a public hospital in Costa Rica. It is far different than my past experience at Moffitt Cancer Center in Tampa. I am getting R-chop with IT methotrexate. Instead of doxorubicin I get epirubicin. How it works here is I get a consultation with the hematologist(lab work first…
PTCL-NOS and Mundesine
I recently saw that Japan has approved the first drug EVER, specifically for the treatment of R/R PTCL-NOS. The articles said they conducted 19 clinical trials and were excited about the results. We're trying to find the trial results, but have been unsuccessful. We've reached out to our oncologist, as well as LLS and a…
PTCL-NOS and Romidepsin
My husband has been battling PTCL-NOS for a year and a half now. He's been refractory to CHOEP, relapsed on Brentuximab Vedotin, and is now taking Romidepsin. Since he relapsed, they're saying an auto stem cell transplant is not recommended. There are no matches for him on the donor list for an allo transplant. We're…

Lymphoma (Hodgkin and Non-Hodgkin)

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