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Lymphoma (Hodgkin and Non-Hodgkin)

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?
Follicular Lymphoma - Rituxan and Bendamustine
Howdy - Anyone try this combination with anything close to Stage IV, Grade 2 follicular lymphoma?
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?
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…

Lymphoma (Hodgkin and Non-Hodgkin)

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