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Lymphoma (Hodgkin and Non-Hodgkin)

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Bad mental health after surviving cancer
In July 2024 I noticed a swollen lymph node… within 3 months I was stage 3 with ALK negative ALCL. This is a rare form of High grade, Tcell, non Hodgkin’s lymphoma. The VA has stated that they believe it’s possible I was exposed to something in Iraq while I was active duty Army. May 1st 2025 I had a stem cell transplant.…
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…
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…
Motivation in remission
Hello, my name is Judith. Couple months ago I've survived stage 2 Hodgkin's Lymphoma. I feel almost like new person in terms of being able to do things like I used to before I went through chemo, but I'm having a bit of trouble with going back to normal life routine. I feel very alone these days and lost - many people that…
3 years remission and on zepbound for weight loss
Well my ldh has been hovering around 174 for 3 years, and after an ER visit due to side affects (extreme lightheadness)from zepbound my ldh was 294. I asked for the test because they were running all kinds of blood tests for my heart. Including 2 images of my heart and lungs, All came back normal. Now I'm scared because my…
Bone Marrow Transplant
Hello I'm new to this community, I have finish 3 rounds Chemo (chop) for T cell Lymphoma i have 3 more to go i just had a Pet scan done and i am being told i am in remission but i am being told after the next 3 treatments I will need the bone marrow transplant because of the aggressive t cell Cancer I am am told i will…
Follicular Lymphoma - Rituxan and Bendamustine
Howdy - Anyone try this combination with anything close to Stage IV, Grade 2 follicular lymphoma?
Waldenstrom's
My name is Charles and Ihave been diagnosed with Waldenstrom's. Am interested in any persons or family memebers who are dealing with or who have delt with this type of disease. About to have Rituxan.
Feeling overwhelmed, can't stop crying.
hello, I was recently hospitalized and had to push my treatment back. Since this happened I cannot stop crying and feeling like a failure. I wanted my treatment to go by as quickly as possible and now I don't know when it will start again. My doctor also told me I should take off work until treatment is finished and now I…
Another lymphoma diagnosis
Well the other day I got a biopsy result from a lump on my neck that indicates Large B-cell lymphoma, germinal center type. Don't know much else yet. Scheduling an appointment with an oncologist ASAP to hopefully learn more soon. Also have a full body scan scheduled for next week. Originally went to a ENT doc for the lump…
Treated for follicular 3B in 2017, now dlbcl
hello, my husband had aggressive follicular lymphoma 3b in 2017 which he was treated with rchop. Now, he was just diagnosed with DLBCL which they believe is closely related to the one he had in 2017. im just looking for similar experiences. We have two very little kids and I am currently pregnant, so we are worried sick…
Late relapse of DLBCL Facing R-ICE and ASCT
After a long absence, and without invitation, it is back. Late in 2012, I felt something on my neck that kept growing. It was diagnosed as DLBCL and in early 2013, I went through R-CHOP followed by radiation. All was clear until early June, 2020 when I felt a similar lump on the other side of my neck. After 2 months of…
Mesenteric lymph nodes - growing after stable for years
Hi everyone, This is my very first post, so thank you in advance for reading. My husband recently found a palpable mass in his abdomen, and an ultrasound revealed that one of his mesenteric lymph nodes has grown. The largest measures 30mm. We’re currently waiting for an appointment with the haematology/oncology team, and…
Exercise and fitness after R-Chop is finished
What fitness level and or fatigue can a patient expect after completion of 6 cycles of R-chop? I went into therapy in good physical shape for a 66 year old man, golfing , cycling, skiing etc. I’ve tolerated the chemo fairly well. Mostly just fatigue. Can I expect to regain my pre- therapy activity and fitness level again…
Long-Term Hodgkin's Survivors- Late Effects
I have been a member of this group for about 10 years. My user name should now be "50 years and counting!" I just want to reach out to my fellow long-term survivors to find out how you are doing. I'd like to know if you have had any of the "Late Effects" from the kind of radiation and chemotherapy that we received decades…
Survivor
My name is Linda and I finished treatment with chemo and radiation last October, my problem is I am having difficulty living with the new me and the thought that it will come back
I'm in remission in New jersey
I dont know anyone here i lived in fl for 23 yrs. Living in New Jersey is my punishment for surviving cancer. Where is there an inperson meeting I can go to?
how can i move past this
I just want to know how i can move past this whole cancer thing i been through it twice and im now in remission but its still always in my head i blame things going wrong in my life on it i feel isolated from friends and family as the only ones in my family who had cancer all died after my first diagnosis. i feel like i…
Clinical Trials - some general questions
I'd like to make sure I understand the concept of clinical trials correctly. when a clinical trial is available, the whole point of it is to test a newer or emerging therapy or treatment that may or may not be better than 'traditional' or established treatments, is that correct? their might necessarily be increased or…
Myelodysplastic Syndrome (MDS) Support
I'm looking for anyone who has or knows someone who has MDS. Doctors diagnosed my dad with MDS in 2024. I haven't found much yet in terms of support for MDS patients and their families, and am very interested in connecting so we can share what we find out and support each other. Please let me know if you're interested.
False positive PET
So in December I had a PET scan with Deauville score 5. One of the nodes where my original diagnosis in 2017 showed SUV uptake of 20. Local oncologist sent me to University Hospital in state. They looked at PET scan and begin talking about clinical trial CAR T. This was second relapse after RCHOP first line of treatment…
Insurance
I got married late last year, just after hitting two years of clean scans, and lost my insurance since it was income-based. I have tried every insurance, and I just can't afford more than 100-200 a month, and the ones I did find had such a high deductible that it's the same as not having insurance. I feel defeated. I had…
Has anyone had rEPOCH cycles for DLBCL ?
Completed 6 5-day cycles of rEPOCH for Diffuse Large B-Cell Lymphoma earlier this year and have not met anyone with this treatment and I know there must be others with this experience. How are you doing and how long did it take you to start getting things together? Would appreciate your response(s).
Elevated heart rate
My resting heart rate has been in the low 50s for many years. In the hospital receiving the first cycle of DA-EPOCH-R it was still in the low 50s. However this week I had an immunotherapy infusion. My resting heart rate is now in the 70s. Still a 'good' heart rate but very high for me. Anyone else experience similar?…
Neutropenia - long lasting
Has anyone had neutropenia from B/R that lasted months?
NLPHL Diagnosis-Just wanted to say HI
Good morning!! I just recently got diagnosed, still going through staging, but it looks good so far. Seeing Dr. Jeffrey Barnes out of MA Gen in Boston!!! Hope everyone is doing good. A lot of the time I feel great, other times I get down in the dumps for a few minutes, then bounce back, LOL
Anyone else get triggered like me?
I’ve noticed lately that I’m always seeing on tv shows or movies where they say so and so died of cancer. When they do this I always get a flood of anxiety all over my body like an adrenaline rush. It also happens on social media. I will see someone post about how their relative or this famous actor died of cancer and it…
Trust after Cancer
It seemed to me as I was going through cancer there were really only 2 kinds of people. 1. Outstandingly generous people who were doing everything they could to help and were upset they couldn't do more. 2. People who didn't care at all. Maybe they would do a low effort thing, like a box of cookies in the mail for…
I am new here
I was diagnosed with diffuse large B cell non Hodgkin lymphoma 12/1/2024. I have just completed my 5 th of 6 RCHOP treatments. I have so many feelings and I just want to curl up and sleep. My family and friends have been praying for me which I appreciate, I just don’t know what to say. I am primary care provider and work…
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?

Lymphoma (Hodgkin and Non-Hodgkin)

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