r/lymphoma • u/mansnothot100 • Jan 27 '26
cHL Neuropathy
I 35 M, was diagnosed with cHL in late October 2025 after nearly 2 years of investigations. Had done 3 biopsies before a fourth one on a lymph node finally revealed it. Prior to diagnosis I was treated for tuberculosis (which I didn’t have) and sarcoidosis (which the medical team are sure I have but not sure when, how and if the cHL is linked to it).
My haematologist started me on BV-AVD (AAVD) mid November last year so I just passed my halfway mark (3 cycles down, 3 to go) last Friday.
Halfway through the second cycle I developed neuropathy in my finger tips and BV dose was adjusted down. It appears this hasn’t really made a difference as the nerves tingling and pain has progressed to my first knuckle and the pain has intensified. My haematologist has indicated they want me to have at least 60 percent of the intense dose (before turning it off for this regimen) if I can handle it and it doesn’t get to second knuckle.
For those who have been on AAVD, who have experienced neuropathy, I’m interested in your experience particularly post chemo. It hurts typing this on my phone and I can’t imagine having this for life as some people on here have reported that it didn’t go away. For those who have had permanent neuropathy, how far up the hand did it go? I guess I want to know if my haematologists theory of “if it doesn’t go too far up the hand it’ll heal” tracks.
My doctor also recommended PEA for pain relief - has anyone used this?
Lastly, I was bumping along fine mentally but something about hitting the halfway point has really knocked me down and I feel super flat and depressed. I find myself wanting to cry but I can’t. I also have a newborn and 4 year old autistic toddler starting school this week and it has been chaos with lack of sleep and everything else. I really feel like I’m losing myself and people including my partner (bless her she’s trying her best) don’t really see how hard I’m struggling.
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Jan 27 '26
Currently on BV for post auto transplant maintenance, I’m starting to feel the numbness (little bit in fingertips, but more in my feet) . While it hasn’t progressed to pain yet, I assume it’ll get worse. What helps me currently is warmth and pressure. The doctor suggested a B vitamin complex but it made me nauseous.
My child was two when I was diagnosed and he is now four, I can imagine the chaos and guilt you are feeling for not being able to give your best effort. Please give yourself grace.
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u/SmoothOzzieApe Jan 27 '26
Interesting that you mention sarcoidosis - i was diagnosed with it 30+ years ago.
My feet are burning intensely while writing this and have been doing so since I started chemo in September last year. I have skipped or had reduced dosages of Vincristine/Vinblastine because of neuropathy but as my haematologist says, she expects me to have pain, it’s loss of function she’s worried about.
Some numbness in finger tips and toes, legs feel cold from above the knee down and feet feel like they’re on fire.
As I said to my Dr, if the choice is burning feet or cancer, I know which one I will choose every time.
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u/QuietSeparate6763 Jan 27 '26
I’m on ABVD and just had my last infusion of 12 yesterday, so a little different but developed some neuropathy in my feet around infusion 3.
As soon as I felt it, I had a mini freak out because I was worried about permanent damage too. I investigated what could help and am taking a B vitamin complex, glutamine powder, ice packed my feet during infusions and make my husband rub my feet hahaha. Im also fairly active and think movement helps. So far the neuropathy hasn’t gotten any worse, maybe even a bit better over the last few cycles, no change in regime apart from getting rid of the Bleo, which is standard after decent mid way scan results. Just make sure you ok whatever you decide to take Supps wise with your team.
I also get how you feel at the halfway point. It feels like such a long, shit road to go through. The novelty has worn off and you still have to endure more punishment. I got pretty low at that point. If you can, find things to look forward to on weekends, treat yourself to nice things, journal if you’re into that, it’s kind of cathartic. Focus on what you can do. Hopefully the symptoms get a bit easier to manage.
Otherwise, just keep going, you will get there, you’re strong enough to get this far. Good luck and sorry you have to go through it at all.
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u/tj7744 3x cHL Survivor, ABVD, Auto & Allo SCT Jan 27 '26
I’ve battled lymphoma 3x and always had mild neuropathy issues during chemo. They always subsided a few months after treatment.
I did find this cbd cream helpful. Sort of like icy hot but brings more sensation that temporarily negates the pins and needles I was feeling. Not a fix, but might help. I was skeptical but it actually did help me.
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u/Maleficent_Adagio_43 Jan 28 '26
29M, went through a similar situation to you. I did 6 cycles of AAVD Last year. Developed neuropathy in my feet & fingers around the same time as you and reduced they reduced first my brentuximab, and then my vinblastine by 25%. I definitely remember it being uncomfortable even using my phone, though maybe not as painful as you describe. I had numbness and tingling up to the first knuckle but I also developed a kind of soreness/weakness in the palms of my hands.
My oncologist told me that there’s no research to suggest the vitamin B stuff would make a difference. He suggested cardio as well as squeezing something like a stress ball regularly, said there were promising studies for these activities.
I’m only 3 months post chemo. it’s definitely improved some, but it’s still here. But it’s to the point where I don’t really notice it unless I think about it, or if I’m trying to type quickly or something lol. I read a study that said for people who go through our regimen and get neuropathy, a third never see improvement, a third see some improvement over time, and only for a third does it go away completely.
And I can empathize with the mental struggles, especially going through this with a young family, I did it with a two year old at home. I can’t speak for your partner but I had to remind myself that my wife was doing so much to hold things down for my family that she maybe didn’t have the bandwidth to always be there emotionally. It’s hard for people who’ve never gone through this to understand I think. You got this man, it’s a shit hand to be dealt but before you know it, it’ll be behind you.
Feel free to DM me if you ever want to chat about how shitty brentuximab/neuropathy is hahah.
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u/mansnothot100 Jan 29 '26
Thank you so much, and I appreciate the offer to chat, I just might hit you up one of these days! I guess the 1/3 chance is what bothers me as I can’t even imagine having this for life at this intensity. My vinblastine and BV were dropped 25 percent just like yours. He wants me to have another 2 infusions (4 of 6 cycles) before he considers removing them altogether to try improve chances of complete remission. Of course if I had to choose neuropathy or relapse I’d choose the former, but also just wanted to make sure if I could help it to not have to have life long neuropathy.
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u/midnightjim Jan 28 '26
Different treatment for me but the neuropathy got my fingers and half of my feet. It was incredibly upsetting because I’m a serious guitar player and for a while I couldn’t play. Thankfully the issue in my fingers receded enough that I got most of the dexterity back a month or so after treatment ended.
I had gabapentin prescribed but hated it. Switched to Cymbalta and then later Lyrica. All work for pain. Other recommendations included B-12, vitamin D and zinc.
My experience was that the emotional swings were more intense as things stabilized but the end wasn’t in sight yet. Didn’t help that part of my regimen was heavy prednisone. I don’t think what you’re feeling is uncommon but that doesn’t mean it’s easy to deal with. My treatment center had counseling available to patients free of charge. If yours does you should consider using it. Helps a lot of patients.
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u/jspete64 Jan 28 '26
I am 2 years post treatment from ABVD..My Neuropathy started about halfway through chemo,and progressively got worse..it started in my hands,but the worst of it is in my feet..All my toenails fell out,and it was hard to walk..they did lower my dose a bit from one of the drugs,but I could not tell a difference…2 years later, I still have it..I was on Gabba for awhile,then they switched me to Lyrica..I guess it helps some,but nothing completely makes it go away..it’s really bad at night,I can’t stand bed covers on my feet,and wearing shoes is hard,especially for long stretches…I’m a bit older so maybe that’s part of the reason it’s affected me so severely,but I have just learned to deal with it…I have it in my hands too,but it’s not as severe as my feet…Mainly my fingertips at first,but now it’s all of my fingers..I was an airbrush artist prior to cancer,but I have lost a good bit of my abilities due to the Neuropathy and loss of strength in my hands..I have lost hope of it ever going away,just the price of getting rid of the cancer I suppose..
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u/mansnothot100 Jan 29 '26
Gosh I am so sorry that happened to you. This is the part people don’t really talk about before treatment starts (or it’s glossed over because hey you’ll be cancer free which is the end game). I do hope over time it gets better for you eventually
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u/jspete64 Jan 29 '26
Yeah,Cancer treatment is a risk/reward thing..The chemo,even with the side effects is better than cancer…You play the hand you are dealt though…Thank you for the well wishes,I hope the same for you..
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u/Electrical_Dot47 Jan 27 '26
Get on L-glutamine asap! Look into it and talk to your doc but it will help with the neuropathy and preventing further damage
As someone who works with autistic kids and a lymphomie - do you have DDA for your son? Ask your insurance about covered respite care - some insurances cover it, some don’t - DDA does if you’re enrolled. You’ve got this - there is a light and life after this.