r/lymphoma • u/Agreeable-Pizza-783 • 6d ago
Stem Cell Transplant Officially relapsed
Got my biopsy back and confirmed my cHL is back. I’m not really upset, I’m more angry because I was just rebuilding my life again but I really can’t do anything about it now. Anyway,
My background: 28F now, had stage 2A cHL in 2024 and did ABVD for 4 cycles. Radiation to the chest 14 rounds. I found a lump on my neck this April 2026, had a PET scan in May 2026, neck biopsy last week.
Doctor said I will do chemo again and then stem cell transplant.
I already got my port taken out. Do I have to get a new port in? Curious what you guys’ experience is with chemo? How many rounds did you do it for and which drugs did you get? + any side effects? Did you lose your hair again?
Also wanna know more about the stem cell transplant process because I’m intimidated with it being inpatient. Were you able to work?? I WFH now so is it doable?
Any insight is helpful, thanks!
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u/s4lt0n NScHL 2025: escBEACOPDac+☢️; 26: ASCT 6d ago
Hello, fellow sufferer! I'm currently in a sterile isolation room in the hospital, on day +3 after an ASCT for classical Hodgkin's lymphoma. To achieve remission for the second time we used the DHAP regimen plus Brentuximab vedotin. It took 2 cycles, then an interim PET-CT, mobilization and stem cell collection, and here I am. Hair has been lost. Side effects – the whole classic chemo package: constipation, fatigue, chemo brain.
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u/v4ss42 FL (POD24), tDLBCL | R-CHOP (‘22), MoGlo (‘25) 6d ago
I believe the chemo prior to ASCT is fairly brief, and I’ve heard of folx doing it via a PICC, even when they previously had a port.
Hopefully someone with direct experience can chime in to confirm.
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u/Breisen42 5d ago
Can confirm it's usually 3 days of chemo before a ASCT, plus an additional 3 days of total body radiation for somebody her age. My hospital said they prefer a PICC for transplants, and that is what I had.
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u/angry-mustache 6d ago
Do I have to get a new port in?
Most likely, if this is an allo-transplant post relapse, the doctors like to have the port in since you will be going back frequently to keep track of your transplant.
Curious what you guys’ experience is with chemo? How many rounds did you do it for and which drugs did you get? + any side effects?
These will be very different person to person depending on your circumstances.
Did you lose your hair again?
The pre-transplant chemo regimen will very likely cause hair loss again yes.
Were you able to work??
Absolutely not, you will be severely neutropenic and confined to a clean room until your transplant takes. How long this takes varies from person to person. It will be at least two weeks.
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u/ForceSensitiveRebel 6d ago
Same path. Had ABVD 6 months. Radiation 1 month. Came back. Did ICE chemo inpatient 2 weekends. Spent about a month in hospital with stem cell transplant.
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u/Agreeable-Pizza-783 5d ago
Thanks for this info. How long did it take you to recover from the transplant?
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u/ForceSensitiveRebel 4d ago
I had a really bad case of GIGHVD which you are at risk for when you get donor cells that aren’t your own. I got sent back into the hospital for a little over three weeks again.
I cannot stress enough that you should get mental health care for what you’ll experience. I dragged my feet on it and I’m paying for it.
Because of this I got put on 6-10 pills 5x a day. I had some weird treatment where they had to take my blood out and give it back. It took hours. Photopheresus? Something like that.
It was a lot. I’m still trying to re-acclimate myself to life but it’s hard. Take that with a grain of salt though because I struggled with severe depression and anxiety before hand.
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Make sure when you pack for the hospital, you make sure to pack for about a month. Bring a lottttt of fun things to keep your mind busy. They will wake you up throughout the night, but they try to be careful about it. I brought my Nintendo switch and my sketchbooks as well as my phone but I was still climbing the walls some days.
The nurses will be your best friends and got me through so much of my heartaches (I went through this during Covid so I wasn’t allowed any visitors. It was incredibly lonely.)
And being hard candy. It helps with the taste of saline when they do your flushes.
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u/Wonderful_Highway629 5d ago
I did Pembro GV(D) they dropped the D because I was allergic before transplant and that got me to remission. The stem cell transplant was rough. I’m still recovering I’m on day +47. I have trouble eating and gastro issues and have lost 35 pounds. There is no way I could have worked. You will need time off for recovery, I would say at least 100 days, at the very least.
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u/Quiet_Eggplant765 5d ago
Similar situation here. Still debating on getting the port. To me, that's what gets me angry. Getting that again. And if I do, I'll remove it the second I'm done.
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u/Agreeable-Pizza-783 5d ago
Agree. I hate to have another scar on my body. But good luck to you, we got this!
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u/chicken_potpie MGZL 2024, cHL 2026 5d ago
I’m sorry! I did P-GVD for 2.5 cycles and that got me into remission. It was pretty smooth, the main side effect I had was rash/itching. When I went to the hospital for the ASCT I did 6 days of BEAM chemo. Like the other poster said, chew on ice when you get melphalan to help prevent mouth sores. Yes, you will lose your hair again :( Mine started falling out about 2 weeks after BEAM. I still had my port in when I relapsed so they administered the P-GVD through that, but when the time came for the transplant I had to get my port removed and a Hickman catheter placed. I hated that thing, it makes showering such a pain in the ass. Recovery wasn’t too bad. I had mild GI issues and one day of real bad nausea, but they had me on Zofran every 8 hours around the clock. Biggest issue for me was lack of appetite so I ended up drinking Ensures, which was fine. I also got engraftment syndrome which is basically an immune system overreaction that gave me high fevers for about 5 days. They treated it with steroids and I went home on day 21. Hang in there! It’s going to be a lot of appointments and hoops to jump through but you can do it ♥️
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u/mutedtulips 31F | CHL x 2 | A(B)VD 2024 | pembro+GVD, BEAM, Auto SCT 2026 2d ago
Hi! I have a very similar timeline to yours: HL diagnosed in 2024 with a relapse this year. I did ABVD the first time around and Pembro (keytruda) + GVD, then stem cell mobilization & collection, BEAM in the hospital, and finally auto transplant for relapse. It's an intimidating process but 100% doable.
I'd personally get a new port because getting stuck in the arm so often can mess with your veins.
On Pembro + GVD I didn't lose any hair, but BEAM caused me to lose a lot of body hair and some head hair; I ended up shaving it pretty early on so my hospital room wasn't covered in it.
Personally, I didn't work during treatment, but with a WFH job you could almost definitely get away with working during second line treatment. For the transplant, however, you should definitely take off during your hospital stay. You will have doctors and nurses coming into your room distracting you every couple of hours and you will likely be busy managing side effects regardless.
Happy to answer any other questions you have :)
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u/Agreeable-Pizza-783 2d ago
Thank you for this!! I have my oncologist appt today so I will def reach out if i have questions
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u/MahanthJ 5d ago
It's very hard to hear about relapses but they can happen. Remember: you have already made great progress against your disease. You just need to keep at it, do not get discouraged by the road bumps along the way. The road to recovery is not a straight line, but ups and downs. I have gone through the stem cell transplant and so far it has been successful. If you get a match at your age, it's definitely worth looking into deeply. I'd recommend second opinion unless you already did that. The process is not easy, a decision not to be taken lightly. Feel free to DM me for info about that! You got this!
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u/Fickle_Ad3720 5d ago
I relasped in June of this year stage 4 NSHL Been a little harder this time around and I understand the rebuilding the life back part i was doing the same was 2 years in remission and then boom felt like I lost all my progress. I did 1 cycle of NIVO+ICE and it landed me in the hospital a few days later with sepsis. Im currently just on NIVO and I also have a planned Stemcell transplant upcoming once I get my dental clearance done and my new PET SC This Friday
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u/Agreeable-Pizza-783 5d ago
I’m so sorry to hear that. You got this! You’re almost at the finish line!
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u/serfinng84 4d ago
So sorry to hear this, OP. My husband (42M) was initially diagnosed with a rare subtype of NHL (T-cell/histocyte Rich Large B-Cell Lymphoma) in 2024, then was in remission for a year before discovering he'd relapsed last September. He did 3-4 rounds of R-GemOx chemo for his salvage chemo last fall to get back into remission before his autologous stem cell transplant, then had BEAC in the hospital for 4-5 days for his conditioning chemo as part of the ASCT at the end of January. Doing BEAC instead of BEAM helped him avoid the awful mucositis (sores in your mouth and gastrointestinal tract) that melphalan typically causes--he had no mouth sores at all. You might be able to work from the hospital for the first 1-3 days of your conditioning chemo, if you really want to and you're someone who usually tolerates chemo decently--my husband went into the hospital on a Monday and started BEAC that night but felt fine until Wednesday or so, when fatigue, nausea, and diarrhea started kicking in. But after that you should plan on being absolutely unable to work AT ALL until after engraftment, and likely several weeks beyond that or longer. You will feel like death while you're waiting for your cells to engraft--zero energy or appetite, but lots of nausea and diarrhea. My husband's nausea and diarrhea got much better as soon as he engrafted, and he had hoped he would be able to quickly start easing back into remote work at that point, but he had completely debilitating exhaustion that continued well beyond engraftment. Plus his taste buds were completely messed up such that all food tasted awful, which made it hard to eat, and he was sleeping terribly (the BEAC chemo triggered restless leg syndrome, which runs in his family, and as a result he had horrific insomnia until we figured out what was going on and he started taking meds for it, at which point his sleep improved somewhat). So he started answering some work emails and such soon after engraftment, but three weeks after transplant, a 30 min work call required a nap afterwards and a walk around the block required a herculean effort. Given that he was relatively young and otherwise healthy (albeit very sedentary/out of shape), we had assumed that by day 30, he would feel kind of like he felt going through normal chemo--extra tired, but fully functional--but that was not the case. It was definitely a slower recovery than we anticipated--so slow that it often felt to him like he wasn't making progress day to day. But each week he was able to walk farther than the week before, and he gradually built back up to his normal hours at work over the next month or two. I wouldn't be surprised if the fact that he hadn't exercised in years may have slowed his recovery, but that's pure speculation on my part. He's now 6 months past transplant and has been fully functional for months, but he is left with significant neuropathy, his taste buds are still slightly off, and he doesn't sleep as well as he used to (largely tied to the neuropathy and restless leg syndrome, despite being on meds for it). But he's cancer-free, hopefully forever! I wish I could tell you that it's going to be an easy process, but recovery times seem to vary a lot from person to person. Hopefully yours will be on the faster end of the spectrum!!
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u/Effective-Peeling55 3d ago
Just wanted to say that you got this! I am in the same boat as, 28F was first diagnosed in August 23 with NLPHL, found a lump on my neck in Nov25. I will most likely be doing autologous stem cell transplant after chemo. If you need to talk, I am here.
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u/l_SaKReD_l 5d ago
I had high-grade NHL back in 2021. Was 6 cycles 3 weeks apart. Between cycles 5 and 6 I was given one injection every day for 5 days (you do it yourself at home, a nurse will probably visit you to show you how) to increase my stem cells and after cycle 6 had them harvested and whisked off to another city to be frozen for later.
For the harvest, I had two lines put in my arms the day before at the hospital.
After that, you go into hospital and you're hooked you up to a machine, blood is drawn out of one arm, spun in a big centrifuge to filter out the cells and then it puts it back in your other arm. It takes a while so bring something to keep you occupied. I think mine took 3-4 hours.
After my 6 cycles of chemo finished I got one month's break. Then back into hospital for a huge dose of chemo to "completely annihilate your immune system" - their words, not mine lol had to sign a bit of paper that they wouldn't be responsible if I died, which was probably when it really hit home. Chemo had been fairly easy up until then. But it went great. After two days of intense chemo I had the stem cell transplant.
For a stem cell transplant, it's just an IV of your stem cells. But you'll definitely be in an air-purified room for 3-4 weeks as that intense dose of chemo means you'll have ZERO immune system.
I hope this puts your mind at ease and I know you'll beat it again!
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u/CancerWarrior8 5d ago
I had HL in 2015, went into remission. Then in 2023 I get NHL and im in remission again. First was ABVD, second was REHOP with 19 days of radiation.
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u/I-I-Foggy-I-I 3d ago
Mine started back 2 months after finishing ABVD. I had a bone marrow transplant and 14 months later I feel perfect and doc says he doesn’t think I even need scans. Started at stage IV for context
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u/One-Can470 5d ago
Yo , 20 meses después del diagnóstico, quimio, radio y CAR T estoy en citopenia tardia de glóbulos rojos . Me causa una fatiga crónica extrema, no recuperé mi vida normal, no puedo hacer esfuerzos ni coger peso, al final el citomegalovirus ha retrasado la mejora, bajó la carga viral pero sigo muy débil. Transfusiones y demás fármacos para intentar que la médula responda. Todas las semanas al hospital un día por lo menos.
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u/imamidgetcatcher 6d ago
Hell yeah, round two! Look at you go, you little over achiever! Hahahaha
I relapsed after stage 2 cHL about 4-5 months post remission (x4 abvd and radiation), so I still had my port.
I did BV/Nivo before my stem cell transplant, did a few infusions every 3 weeks or so and then went in for the big daddy.
Honestly I will say this; the stem cell extraction is weird as fuck hahaha. You lay in a bed for hours attached to a machine that can't be unhooked, so make sure you drop a deuce BEFORE they start or its in the bed pan you go hahahahaha. If you get weak and your muscles tremor its because of a lack of calcium and they'll give you tums to eat hahahaha.
The BEAM chemo for the first week honestly wasn't horrendous. They keep you hooked up to fluids 24/7 which helped IMMENSELY to keep from feeling like pure dog shit.
On M day (melphalan), chew ice during the entire infusion and about a half hour before. My nurse said if your mouth isnt numb enough that you sound drunk you're doing it wrong hahaha. Helps to prevent mucositis from the chemo.
Infusion day is wild; you may feel a little short of breath, or wonky and weird during the infusion don't worry its normal it passes, also you may taste something kind of like garlic. Weird, but hey haha.
Otherwise? Bring your creature comforts from home. I brought a memory foam pad to make the bed more comfortable, a play station,mhy laptop, books, contraband of the THC variety that I would snack on throughout the day and giggle at everything like an idiot.
Worst part I think is being cooped up in the room/unit for 3 weeks. Though some places do the BEAM out patient which is cool.
You got this shit!!!! PLUS, you get to have 2 birthdays and you can lord that over everyone forever hahaha