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Lymphoma (Hodgkin and Non-Hodgkin)

Radiation for refractory PMBCL: proton v photon
I have Primary Mediastinal Large B-cell Lymphoma and the chemo didn't work. Started working and then quit responding. Now I am in between Photon and Proton therapy and not sure what to do. Has anyone on here had any experience in this? The Proton would be at 60Cy and the Photon at 20cy. CAR-T as well. Anyone have any input?
Long Term Effects of Mantle Radiation for Hodgkins Disease - Dropped Head Syndrome
I've read about a number of people experiencing neck and shoulder pain along with dropped head syndrome as long term effects of Hodgkin's Disease. I have experienced these symptoms for over a year and my doctor believes these are effects of radiation. I was treated 18 years ago and have basically been healthy. I am…
Primary Bone Lymphoma, anyone?
Hi all, I have Primary Bone Lymphoma, which is deemed a rather rare occurence of lymphoma. My variety is Follicular (indolent), which is even further off the charts (the "usual" type of PBL is DLBCL (aggressive)). Specific information is hard to come by... So I would love to find other folks with PBL, who would be willing…
RCHOP side affects with ileostomy
This week, I completed my 1st RCHOP treatment of 6. I have an ileostomy and catheter to divert stool and urine. Going into treatment, I had good ostomy output (volume & consistency). Since treatment, ostomy output is high@ >2000ml and loose. All my eating tricks don’t seem to work. I take 4x 2mg loperamide. Has anyone else…
Live from The Blue Room!
One of the notebooks I brought to the infusion center was my SNL skit writing notebook. The skit I was working on took place in the infusion waiting room, (*ours was called the blue room, because it had exclusively blue chairs). In the blue, blue room (the walls were also blue), every 2 weeks, I wrote down 100s of…
CAR-T Therapy - My one year anniversary
My journey (Currently 46 yo - female) No medical history until…. January 2023 - diagnosed PMBL (diffuse large B Cell NHL) March 2023 - June 2023 : EPOCH R / Moffitt Tampa October 2023 - relapse February 2024 - CAR-T Therapy / Moffitt Tampa May 2024 - Remission September 2024 - Clean scan March 2025 - Scan in two weeks I…
Nerve pain post chemo
Hi , I’m a 23 year old female . I was diagnosed with Hodgkin’s lymphoma at 21, did 12 chemotherapy’s in 6 months and finished last February. From last February (2024) until October (2024) I was doing well. Suddenly in October I started having nerve pain.. it’s in my hands and feet. It’s a burning painful sensation. Feels…
T-Cell CNS lymphoma diagnosis
Male, age 58. Diagnosis is T-Cell CNS LYMPHOMA. Wondering if there is anyone else with the same diagnosis.
R-EPOCH
Looking for anyone who has been through R-EPOCH chemo. My fiancé was just diagnosed. He will have six cycles of this chemo. He completed his first round a few weeks ago. Starts his second round on Friday. He will go 5 days in a row. Looking for personal experiences with this type of treatment - side effects, tips/tricks,…
Car T Cell Therapy
Hi everyone, My mom (61 years old) was recently diagnosed with DLBCL stage 4 and has undergoed 5 lines of chemo. Since it is so aggressive, she is no longer a candidate for a stem cell transplant. We are going to Dana Farber in Boston next week to talk about Car T cell therapy. Insurance is becoming a challenge and the…
Heart Rate Increase
Hi I’m 25 years old and was diagnosed with High Grade B-Cell Non-Hodgkins Lymphoma stage 2. I recently completed cycle 4 and have 2 more to go. My PET scan showed no active cancer. I’ve experienced fatigue but mostly increased heart rate. I can be walking to the bathroom and my heart rate will reach 120s-160s. Was…
Stage 4 NHL in remission. Palliative care concerns you should talk with your doctor about.
Everybody is different in their diagnosis and treatment. My NHL spread to my spine, where I had a spinal fusion from a significant burst fracture in 2019. I was diagnosed stage 4 NHL February 2023. The oncologist sent palliative care. This was great while receiving treatment. But, after remission, palliative care…
Just Diagnosed Advanced Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)
Hello, I am really happy I found this site. After being sick for 3 1/2 years, I had a myph biopsy and was diagnosed with SUSPICIOUS for Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL). The doctor says he contacted the pathologist and Stanford Medical to confirm. He says I most likely have had it a long time…
Urgency incontinence
Has anyone else dealt with bladder issues during chemo? How did you manage it
Pluvicto Therapy
Husband getting ready to receive Pluvicto Radiation Therapy and wondering what to expect during the three days of isolation. He cannot walk without walker and am worried how he can manage on his own for 3 days? He will receive meals and moral support. Has anyone been thru that? He is 84 yrs old and has mild dementia.
Strength and balance issues
Hello all, I was diagnosed with large t-cell lymphoma in May 2023. Spent 3 weeks in the hospital and have been undergoing Chemotherapy ever since. Being that I'm getting close to the two year mark, I was curious if it was normal to still have balance and strength issues. I try to work out with resistance bands but what I…
Losing Your Smile
Did anyone's teeth start to break so easily after receiving intensive radiation? I have completely lost most of my teeth and I get excruciating pain in my teeth for days and since I was homeless I didn't have the means to go to a dentist and check them out and I'm so afraid my smile is horrible I hate speaking to people I…
48 years survivor of Hodgkin lymphoma and now the side effects
I wanted to share an update about my mother’s health, as many of you have experienced similar long-term effects from cancer treatments. She is a very pleasant 66-year-old woman who is a 48-year survivor of Hodgkin lymphoma. Diagnosed in 1976, she received cobalt mantle radiation as part of her treatment. She was only 17…
Follicular non Hodgkin's lymphoma
My 21 yr old nephew was just diagnosed today. He was told he needs to get an echocardiogram, bone biopsy and pet scan. Plus he needs to see a Dr. In a large town 2 hours away. My question, is there anyone on here with this diagnosis? Anyone who has been through these tests that could tell him what to expect? Someone he…
Autologous stem cell transplants
I'm set to have an autologous stem cell transplant next week. I finished six cycles of chemo and the chemo has beaten the cancer into remission. I have EATL lymphoma which is a T-cell lymphoma. I'd love to hear from anyone who has undergone the procedure. I don't really know what to expect other than the fact that the…
Referral to Oncology based on this PET…..
Hello! Sorry for the long post. I would just like some help sorting through this report. ( I am an RN- but don’t routinely have much clinical day to day experience in this area) I understand no-one here is able to give medical advice :) Just looking for some real life input to help our swirling thoughts right now. Quick…
Ibrutinib or Imbruvica, my apologies for the duplicate post
In September 2021 my wife started having headaches that progressed to balance issues etc. In October 2021 she had brain surgery to remove 75% of the tumor that was pathologically determined to be primary central nervous system lymphoma, diffuse large b cell lymphoma. She was emphatic that she was not going to do the HDMTX…
No diagnosis yet--
It is a long story but 10 months ago I had a chest ct scan, it showed enlarged mediastinal and hilar nodes 1.5cm on the short axis. I was not able to do the post f/u due to an injury and surgery that had me non weight bearing, my PC received the results but never followed up until I had my check up in Oct and I mentioned…
Abnormal path report-skin biopsy
hello I am wondering if anyone has any insight… my son had a skin biopsy from his arm (non itchy bumpy area under skin). Initial report says “ebv positive with t/nk cell proliferation”. They are sending it for further testing. He has no other symptoms but I’m just very very worried about this. Thank you
Follicular lymphoma transformation experience
Hi all, I am posting this as a response to a request in a different thread instead of hijackin that one. The request was for me to share my experience with transformed FL and treatment etc. Some bullet points for background knowledge: Male, 56 Lives in Denmark Kidney cancer survivor since 2010 Diagnosed with FL in 2019.…
NON-HODGKIN MARGINAL ZONE
WHAT CAN MY BROTHER-IN-LAW TAKE FOR THIS. ASKING TIM TIPPENS
New here.
Hi, everyone. I'm new here. For a while, I've been experiencing non painful lymph nodes. After talking to my GP, she referred me to the general surgery people in the practices network of offices (They're all run by a local hospital) They did some sonograms and recently it showed a difference that made them want to do a…
Low testosterone
Hi, I just started to take androgel for a very low testosterone count. I was wondering if anyone else has taken or is taken testosterone hormone therapy. How long did it take to see or feel results? Any side effects from the medication? Thanks for the help Matt
Lymphoma and disabilty
Can someone comment who had experience in this area ? I looked that SS Admin site and there are are hole bunch of items. I think,as I read this, there is no point to apply as you going tru initial treatment. … ? Wife is un-employed for last year or so but had worked for about 30 years paying SS. Before diagnosis, she was…
In home (CNA/other?) support while going thru chemo
Last Fri wife was diagnosed with non-hodgkin lymphoma. ,, large B-Cell … something… Had one appt in top school cancer program in the area to confirm biopsy… in couple days she is going for pet scan…. and likely for chemo after that. Wife is in middle 50s and so am I. I still need to work. Right now I am working remotely…

Lymphoma (Hodgkin and Non-Hodgkin)

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