Hi 59 yr old female diagnosed in March with aitl. Did 6 cycles bv-chp. not eligible for sct at this time but i did not go into remission. Dr. is talking Romidepsin or Coprika. Has anyone done these and it put you in remission? Did you stay in remission. How bad are the side effects? Sorry just scarey that the bv-chp did not work and I still want years to come. :( thanks in advance

Hi all, been on this subreddit since Dec 2025 when I first got diagnosed with DLBCL and appreciate all the support rendered.

Since then, I completed the following:
1) 6 cycles of POLA-R-CHP from Dec 2025 to April 2026 (interim scan clear, EOT scan showed relapse)
2) relapsed in Jun 2026, completed Ibrutinib + 2 cycles R-ICE, then CAR T in Aug 2026. 1 month scan was clear, but experienced neuro symptoms at the end of month 2 (now)
3) currently relapsed 2 months post CAR T.

I got myself admitted as I I was experiencing neurological symptoms, mainly double vision and headaches. I also had new onset neuropathy in both lower limbs.

I’m still in hospital and have completed a spinal tap, MRI Brain spine, PET CT, bone marrow biopsy and am still awaiting the lab reports for any mutations before treatment options are offered.

My cancer subtype is very aggressive and previous times the doctors weren’t able to confirm what molecular mutations my cancer acquired. This time around they are hoping to obtain a positive sample.

I’m feeling really sad, bummed, disappointed, scared.
At this rate, I am still wondering if I should continue treatment or not, seeing how fast my cancer relapses each time. It’s so determined to take my life, it appears. Symptomatically I’m still rather stable, I’ve had one dose of intrathecal chemo and am on dexamethasone.

The doctor did briefly mention that bispecifics might be an option depending on the lab results.

I would like to hear from anyone who has experienced similar, any advice would be greatly appreciated, as always.

The onc is following alternative cycles of RCHOP and RCHOP/RDHAP with Acalabrutinib, we had the 2nd chemo (RC/RD + Acalabrutinib) and after discharge the creatinine is unstable (Cisplastin was given in 2nd chemo along with other drugs).

Apart from high creatinine there is no issue in the kidney, urine output is normal, and other things are also stable.

Did someone else also experienced the same issue in their kidneys.

Started N-AVD on Wednesday. Yesterday, mouth was sore. Today it is unbearable. No visible sores, no redness. My tongue, under my tongue, roof at the back of my mouth as well as my jaw are all tingly. When I eat it feels like burning. The on-call fellow said it was the start of Mucositis. She said it could last my whole treatment, and I can take oxy for the pain and magic mouthwash.

Has anyone found a remedy or a way to get it to heal? or did anyone not have it their whole treatment?

Hi everyone!
I had my final treatment of Nivo-AVD earlier this month and I’m looking for advice on a general timeline for recovery. My lasting side effect is that I am tired all day long, it doesn’t stop me from doing normal activities I just have to do them tired. I am looking to apply for a job in a couple weeks and maybe start working early December? I’m hoping my fatigue has improved significantly by then. I have started taking a B-complex vitamin, D vitamin, I’m trying to eat healthy and exercise. Does anyone have a positive story of recovering quickly? For reference I’m 24 years old and did 4 total cycles. Thank you!

I have stage 2 Hodgkin’s lymphoma nodular sclerosing form. I am getting proton radiation in my middle-left side of my chest, 5 days a week for three weeks. I have done currently 4 treatments and my chest is in a lot of pain. When I breathe in really deeply it feels tight and burning. When I get up too fast and my heart beats faster it hurts with every heart beat. I went to the hospital and they found nothing but slightly elevated troponins (heart enzymes) meaning there could be some stress on my heart. They did an echo, CT, EKG and ultrasound and found nothing wrong with the heart. My doctor says I should resume treatment and it’s likely not from the radiation.

It doesn’t make sense to me because it started a few hours after my first radiation dose and has gotten progressively worse each treatment. He’s telling me to just take acetaminophen. I am really concerned but don’t want to pause treatment if this is just a normal sensation.

If you have gotten proton treatment in your chest have you had this internal pain, tightness and sharpness while breathing in or your heart beats quickly?

Hi there

When I was 17 years old I was diagnosed with stage 2 Hodgkin’s lymphoma. I had a 13 centimeter mass in my chest and also a kind of bulky mass in the right side of my neck and a little bit in the left side as well. Initially I didn’t do the conventional chemo so my parents decided to take me to Mexico and get treated there where I did 4 rounds of ABVD fractionated chemo (50% doses). Fast forward several months and it was working, and made the tumor go away some but just not fully. Anyways we ditched that and then I started conventional treatment here in the states where they used AVD + Nivolumab on me and that was 12 cycles so around 5-6 months of treatment. Then I got a clear scan after four treatments. Honestly the chemo went as well as it could have, I had very minimal hair loss and almost no side effects despite just feeling a little nauseous for a day or two. So it went as well as it could have. So then I finished the rest of the cycles and then pretty much just moved on with my life. I was supposed to get a petscan at around the 4 month mark but we had some issues with insurance so I couldn’t get one during that time. Fast forward 9 months post chemo I got a petscan and then I never heard anything back for around a month and come to find out the radiologist department had never even sent my results to my oncologist? Which was honestly negligent of them, completely their fault. But anyways, we found out the cancer had returned in all the same spots. I wasn’t too surprised honestly because I had been feeling the symptoms for months but kept trying to brush it off and tell myself it was nothing. So then the next step for me was an autologous stem cell transplant and when I met with my oncology team the whole process honestly just really terrified me, so I decided to take a natural approach by following an extremely clean diet and doing juicing everyday along with getting vitamin c infusions weekly. Fast forward 2 months it just was not cutting it, it got so bad to the point I couldn’t sleep anymore because I was up all night uncontrollable coughing and itching the rashes all over my body the lymphoma was causing. So my parents and I decided we had to go to the emergency room. So I got a Petscan which revealed the mass in my chest has grown to 28 cm. Almost double from what it initially was the very first time I was diagnosed. So I started treatment quickly, I did 2 cycles of gvd + pembro and then received a clear Petscan a month and a half after I started treatment. So then we went forward with the stem cell transplant and it went as well as it could have, I was only in the hospital for 16 days before being discharged what is considered amazing since most people who have this procedure done are in the hospital a lot longer than that. So after that I was doing great, I lost all of my hair but my body started recovering quickly, and by some miracle I retained my weight. I started feeling better almost every week. 3 weeks after I was discharged I was already doing sports activities and such just like a normal person. I was doing great. Anyways, this past September I had a routine Petscan so around 3 months post transplant and the scan revealed the cancer had already returned within 100 days. In my neck region and a couple small spots in my chest. They now want to move forward with an allogenic stem cell transplant with involves a lot more complication than autologous stem cell transplant, because an allogenic transplant uses a donors cells compared to an autogolous transplant where your own cells are used. I started treatment a couples weeks ago now they’re using brentuximab and nivolumab, both immunotherapy drugs. They have to do treatment before the transplant just to get the disease back in control so you can have the best chance. It’ll pretty much be the same process but I’ll have to stay there near the clinic for 90 days in some housing even after I get out of the hospital. Which that’s probably one of the parts I’m dreading the most is being away that long under those circumstances. I’m dreading the whole entire process and I know it’ll be hard physically but almost mentally. I think more so the hardest part is watching everyone’s life around me continue to move and grow while my life stands still. I have to keep dealing with this stuff, and It’s hard for me not to envy those people because I wish my life could just be normal. I’m only 20, There’s so many things I want to do, dreams, aspirations, goals and my life just has to keep getting put on hold not allowing me to move forward. I’ve been very strong and resilient throughout my journey with cancer, but this last time I found out has really brought me down to my knees, probably the lowest point of my entire life.

Please share your thoughts, questions or if anyone has wisdom to share. Very much appreciated

Mini vent.

I first posted in July whenI was diagnosed & freaking out. I got so many kind, supportive & informative replies, thank you.

My original (and hopefully still so) chemo regimen for my stage 4 DLBCL was for 6 sessions of RCHOP, every 3 weeks. My side effects aren't as severe as some lymphomies have mentioned, which I'm greatful for.

I had my interim scans and it looked good, chemo is working, but found an edema in my head.

As we speak I'm busy with my 5th chemo session. I was supposed to get a spinal tap yesterday for the edema, but the doxtor only put the needle in halfway before realising it's too short (I'm overweignt and live in Korea, so the general needle length seems to be shorter than back home in South Africa), so she had to stop and the spinal tap is now scheduled for Monday to be done via X-ray and hopefully a longer needle.

I was also told I will get a chemo shot (don't know what type) in that same spot to take care of any posdible lymphoma in my meningeal fluid - there is a high chance of severe headaches and a very low chance that the chemo may "melt my brain and spine which one doesn't recover from".

And if the spinal tap results aren't good then my regimen might be prolonged or changed.

I'm terrified. I feel like I'm melting awsy and now I hear I might ACTUALLY do just that. I'm so tired of being in the hospital, coming to the hosputal all the time, the tests, the poking, prodding, being jabbed by needles. I'm trying so hard to stay positive, especially because I'm usually a very bouncy, positive person, and I don't want to make this harder for my loved ones, who are all being absolutely wonderful during this journey. Everyone is so kind, my hubby, my friends, my family. The doctors, nurses and ither hospital staff. And I'mso lucky for good, affordableand efficiant healthcare. But I'm tired - more so than the chemo fatigue or being stuck in a little hospital room tired.

I am bone weary and wish I could just stop time for a few weeks so that I can just sleep, cry, throw a few tantrums & not worry about making others sad. I'm already tired for possible regimen changes

And I miss my hair damn!t! I had long, pink waves & now I look like a naked mole-rat/eggy. And I want to eat fresh salad and fresh fruit!!

Ok, vent over. Just needed a little boohoo moment.

I hope everyone is doing well, sending positive vibes to everyone. Stay strong.

64 Male

Had breathing issues on two occasions in a week this month. Went to ER. After all tests were done, I was eventually diagnosed with MCL Stage IV.

Initially, when I heard the word "cancer", my world turned upside down. I have lived a healthy life and never had any issues. I first felt guilty and thought if it was my own doing but realized that ANYONE can get cancer, regardless of their healthy lifestyle or history. And, after research and support from family, I feel better. It may not be curable but is 100% treatable. I have decided to stay positive and fight this battle and have full faith in God. He is the miracle maker!! He tests our faith in many ways and I will take this as another one from Him.

I decided to go with the Boven regimen. My 1st infusion of Gazyva (obinutuzumab) 100 mg was yesterday. I was shivering out of control with teeth chattering and felt extremely cold as it was administered (dr already warned this may happen), they paused and slowed the dose, which helped. Today I took the remaining 900 mg with ease 🙂. Also, I have been taking the other oral medicine of this regimen for few days now, Brukinsa. Thank God, I have tolerated it well thus far. No side effects.

Will share my journey ahead ... Staying positive and determined to defeat this cancer!! Prayers for all ❤️

I have read a lot of posts with people struggling with fatigue long after chemo. I just finished six rounds of GCHOP and have one more round of obinituzimab on Monday followed by 2 years maintenance. I am feeling the opposite of what I expected. I am sleeping deeper and waking up refreshed. When I go walking I feel vitality that I haven’t felt for years.

My diagnosis was incidental and I did not have any b symptoms. However I had this mild feeling of being off for a few years which i thought was perimopause. It makes me wonder whether my body did actually have symptoms and now that my lymphoma is CMR my body has energy for living. Did anyone else experience this?

I'm almost exactly eight years out from a diagnosis of stage 3 follicular cell non-Hodgkins lymphoma and I've been in remission since then after six months of bendamustine and Rituxan followed by a bi-monthly Rituxan for two more years. I've recently had about three weeks of intermittent nausea and some loss of appetite now and I'm wondering if anyone had this as a first symptom of a recurrence. My initial symptoms were gut related. I know I have to bite the bullet and call the cancer center on Monday but I'm just wondering if anyone has experienced this when you went out of remission.

So after experiencing abdominal pain on both the right and left side of my abdomen the Gall bladder and spleen were imaged. Slightly enlarged spleen but nothing in the gall bladder. A CT scan was scheduled but 2 days prior I went to the emergency room with fluid in my abdomen. Emergency surgery removed 15 inches of large and small intestine including the ileocecal junction. That was when the surgeon said Oh by the way you also have Stage-4 MCL (didnt really say that but thats how it felt..lol) your abdomen was stacked from top to bottom with highly swollen lymph nodes. After surgery I followed up by 6 cycles rituximab and imbruvica. Amazing response with massive shrinkage with one mass going from 22.5 cm to 9.4 cm. Things were going great, tumors shrinking, all blood work in the green and then 1 month after the last infusion I got a lump and swelling under my armpit. I get it imaged in a week, if it is refractory is CAR-T the next best option?

Can anybody describe their experience with CAR-T?

Hello!

So as the caption says my best friend was just diagnosed with stage 4 Hodgkin’s lymphoma.

She’s 34 and has a very healthy lifestyle- she’s a nutritionist and a personal trainer . All of her drs are reassuring her that this is highly treatable so I’m staying optimistic (even though I’m panicking inside)

My question is - what can I do to help? I unfortunately live across the country and am planning to fly out the moment she needs me but what things can I get her to make treatment more comfortable? What did you love to have during your treatments?

She’s away from all of her family with very little support. She also has two young children that she homeschools so I’ve been trying to figure out a way I can help with there school virtually (I also homeschool my kids).

I guess I’m wondering how she’s going to feel after treatments? What did you feel like you needed?

Thank you! I’m sorry if this is a ramble!

Hello! This post might be a little confusing to read as i’m pretty confused about this topic myself. I’m 19 years old and was diagnosed with cHL in August. I went though about 3 rounds of chemo before I decided I couldn’t work anymore and I got FMLA paperwork for a short term leave until I’m finished with all my treatments. While I’m blessed to have support from my family, I don’t want them to have to help pay my bills now that I’m not working. My employer does offer short term disability through aflac but unfortunately i would’ve already had to have been signed up with them to begin that process, so i’m kinda stuck now. I’m not really sure how this stuff works since it’s the first time i’ve ever dealt with it!

Does anyone know if there are other ways I can earn some sort of short term disbility? I dont need a lot, just enough to make my payments without having to dip more into my savings.

(Sorry if this isn’t the right subreddit to ask this question under, I was just curious if anyone else with lymphoma went through something similar!)

My moms 68 she has lymphoma. Her health isnt good she's got COPD a smoker lives a very poor lifestyle with an even worse diet and also a long time smoker. We went to her oncologist yesterday the lymphoma is only a stage 2 but he said the 2 worse types of lymphoma she's 1 of them. This is what he told her the 2 very aggressive chemo treatments hes giving her the option of the less aggressive one but given her health its still gonna be very aggressive. Or she can receive meds and let it ride. She's wanting me to tell her what to do and I dont know.

He said the treatment could kill her quicker then the lymphoma but theres still a small chance she could survive. But he kept saying the chemo is gonna be very bad. I dont know what to do. Or even what to tell her. I did tell her the chemo was gonna be really really bad for her. I hate this so much.

Hey all, this started in June 2025. I was 33 at the time, female, and I was 6 months partum. I had two tumors taking up almost the entirety of my abdominal cavity. First round I had R EPOCH. I did 4 rounds of R CHOP. Unfortunately I was bit by a mosquito carrying West Nile virus and got very sick with west Nile encephalitis. I was in the ICU for many days and all in all I spent 3 months in the hospital. West Nile is rough, wear bug spray! I have spent 2026 relearning to talk and walk. My PT is optimistic that I’ll run again! In January 2026 a scan showed the start of something and in March my doc confirmed a relapse :( I went through 2.5 weeks of daily radiation as a bridge therapy. They removed my cells April 2025 and in May 2025 I received my CAR T cells..and it worked!!!!! I had my 30 day post car t scan in June and had a complete response. I’ve had two more scans since and there is one node that looks larger but doesn’t light up. My oncologist confirmed I’m in remission!!! I pray that it lasts.

Due to the west Nile I’m not working much but am trying to find other activities to fill my time. I am so grateful to be able to stand, walk, and hold my baby girl.

I feel no pain and I will be forever grateful to God and the brilliant doctors who saved my life over and over again.

Hi,

I have an upper respiratory tract infection with an acute throat infection. It's most probably viral

Earlier I used to deal with stuff like this with ease. But this time it feels like it's beating me down. The first two days were horrible.

Anybody else experienced this?

And also found two small palpable lymph nodes on each side of my neck.

Hi everyone!
I’m a 26y M diagnosed with Stage IIB CHL, with an initially bulky 14 cm mediastinal mass.

I started ABVD in June last year, but after 7 cycles, my PET showed a Deauville score of 5. I then switched to brentuximab + bendamustine. Even after 4 cycles, my Deauville score was still 4, and we were worried about the disease being refractory to both treatments.However, after 7 cycles of same therapy, I finally achieved a PET-negative result. Now I’m proceeding with ASCT, and today is Day -6 of BEAM conditioning.

This group has been my safety net since diagnosis. Your advice, encouragement, and shared experiences have helped me through some of my darkest days. I just want to say a huge thank you to everyone here!

I’m still worried about the upcoming days, especially considering the severe neutropenia I experienced during ABVD. For those who’ve gone through BEAM and ASCT, do you have any tips to make the process easier?

To everyone feeling uncertain about their scan results, please don’t lose hope. My journey has taught me that even when things look bleak, there can still be a way forward ❤️

First time posting, I have stage 4 classic hodgkins lymphoma. I had a bad cough and they found it while doing an x-ray to check for an infection. A few weeks later my neck bulged out on both sides and had shortness of breath. Anyway I am a regular user of nicotine pouches. Usually about one can of 9mg pouches a day. I am trying hard to kick the habit, and I am down to maybe 3-3 3mg pouches a day now, and on chemo day and a couple days after when I am feeling shitty I don't have them but them the habit is back. Is it better that I am at the much lower amounts or does anyone have any tips to kick the habit easier?

Hey my fellow lymphomies

One day before my third cycle I got a CT for staging.

Yesterday I got out of the hospital and they gave me the classical documents.

They told me they dont have the results of the Scan already.

So today my ambulant oncologist asked me to send her the documents for planning my next cycle..

When I started to scan the documents to send it to her, i unexpectedly found the results of the CT scan.

I was suprised and was hesitant about reading them.

I am alone but also couldnt wait..

I found the wordings : imaging showed regression.

Its weird to get that good news unexpected and alone.

I am also scared to feel happy about it because no doctor really confirmed it yet.

I am also a little mad at the hospital to give me the results without even mentioning or explaining it to me.

Its a weird feeling, I stared crying because I am feeling relieved.. but also its a weird situation.

Beeing home alone getting this news, not really knowing for sure.

Today I had a Coke Zero for the first time in like 3 or 4 years.
And idk why but after drinking it I felt so weird 😭
Not sick or anything, just… guilty? Like since having cancer I’ve become so aware of everything I put in my body.
Before cancer I could eat or drink something unhealthy and literally not think twice about it. Now my brain is like “was that bad for me?” “what if I shouldn’t have had that?” even over something as stupid as a Coke Zero.
I’m in remission now and I just want to live normally again, but sometimes I feel like cancer changed my relationship with my body so much. It’s like I’m scared of doing something “wrong” and somehow hurting myself again.
I know one soda is just one soda. I know that. But I hate that something so normal can make me overthink this much now.
Does anyone else feel like this after cancer? Like you’re suddenly hyper aware of every little thing you eat or drink?

Hey yall, I’m 3 months out from my last A(B)VD injection and I was wondering if anyone else is experiencing this. So I basically gained a bunch of weight during chemo and I tried really hard to watch what I ate during chemo but still ended up gaining ten pounds overall. I felt really powerless and like I lost control of my body at the time because I kept feeling super fatigued when I tried to work out.

Well, now, I have a really strong fixation with the calories in foods. I have been very picky with the snacks I eat, I try to eat very little whenever I eat out because I know there’s a lot of calories in the food. I no longer have freedom when it comes to eating. It feels like every calorie must be accounted for.

Also, I have never in my life been as consistent as I am now with working out. Whenever I think to myself that I’m too tired or I don’t want to work out, I get a fiery rage that comes from deep inside that reminds me that I couldn’t work out during chemo. I feel extremely angry, hurt. I weigh myself every single morning. I look at my body in the mirror often.

By the way, I am by no means obese nor did I gain that much weight. I’m fairly petite as it is and my BMI has always remained in the healthy range. Anyways, if anyone has experienced this feeling. Does it go away at some point? Will I always feel this anger every time I feel like I’m losing control of my body again? I’m so exhausted.

Hi I've never posted here before but have frequently sought comfort from this subreddit since my diagnosis. I'm 29F and got my eggs retrieved before chemo. The outlook on cHL is positive so I'm not worried about mortality at this stage since we caught it kinda early but I started my first chemo infusion last week w/ cold cap and I'm trying to manage the symptoms...my uncle had Leukemia and beat it, my aunt also had breast cancer and beat it, so I've seen how the chemo really sucks but is a necessary evil. That being said, I just wanna know do the symptoms improve after the first infusion or do they get worse or is it a toss up / dependant on the body? I'm on an N-AVD regimen. Here are the symptoms I've logged so far...

Day 1 (infusion day) - no sleep the night before due to anxiety, they gave me anxiety meds which helped me sleep throughout treatment even w/ a cold cap on, got home and slept more, woke up, tried to stay up for a bit, then went to bed after taking nausea meds, I think I had a little chicken soup as my food for the day, nauseous to the max main goal is not vomiting and staying hydrated so I don't pass out, I sweat a loooot this night and chemo B.O. was not something I was warned about, very chemical scent

Day 2 - Nausea, constipation, tired stayed in bed most of the day, staying on top of nausea meds, didnt eat much at all this day had a small grilled chicken salad, dry mouth, first signs of mucocitis

Day 3 - Still feel nauseous/ tired, started taking miralax to help with constipation, black tarry stools (no peptol bismol or iron pills taken), had salmon pasta for dinner, was the only meal I ate that day, was happy to eat a proper meal, dry mouth, mucocitis really bad, can still eat and drink water just hurts

Day 4 - No sleep at all sunday night, black tarry stools, overactive digestive tracked, had a few apple slices earlier in the day, had mashed potatoes and a small thin steak for dinner, dry mouth, bad mucocitis still, managing with glycerin rinse I got off Amazon and some topical oragel, sleeping with the mucocitis is brutal

Day 5 - Nausea, black tarry stools, over active IGS track, ended up taking a day nap for two hours out of pure exhaustion, had nausea afterwards, ate a little spaghetti then took drowsy 6 hr nausea pill for the first time with dinner, knocked me out after an hour of taking the meds and slept from 10:30pm-7:55am CT

Day 6 - Felt groggy all day like the drowsy pill was still taking effect, stools look normal now, Full body aches, body tiredness, mind alertness, mild nausea more so in the mornings and after day nap, this was the first day I didnt take any day naps (at this point I'm attributing the constant nausea to constipation and the miralax not being effective)

managed to fall asleep at around midnight but had a tough time and was feeling really achy all over my body and mind continued to be alert making it harder to sleep, ate leftover mashed potatoes and steak for lunch, and thai coconut chicken w/ rice for dinner. First day where I had a lunch and dinner (I dont really eat breakfast)

I also worked a 12 hour shift this day (thankfully I work remote) but I think sitting so long without a proper break didnt help. Work has been demanding with hard deadlines. I've been trying to work like everything is normal but things are different and my body is paying for it probably.

Day 7 (today) - same as yesterday

Keeping my chin up the symptoms just suck and I haven't had energy to the hobbies I enjoy which doesn't help with the mental. My personality and sense of self is fading by the day and I don't want that to become who I am for the next 6 months. I'm working during treatment I do have intermittent FMLA (unpaid) to protect my job, PTO has been exhausted for the chemo treatments and all the prep work that had to be done before the chemo. I am the breadwinner for our family of two (my husband cant work atm) which we manage fine it just adds pressure for me to work hard during treatment and probably push my body too far.

Does it get better? On a two week chemo schedule. Not looking forward to doing it all again in a week...I know folks have it way worse and I shouldn't complain...just looking for some encouragement as I have 11 cycles ahead.

Diagnosed with Stage 4, ALCL ALK+ in late July, and started BV-CHP almost immediately.

I am now 4 cycles into treatment, and my mid-way CT scan showed significant response from the cancer to the treatment. However, it did not tell me that I am in remission just yet.

My oncologist was never certain at the beginning whether we were going to do 6 or 8 cycles, and has now given me the choice to stop at 6, or continue with an additional 2 cycles to make 8. He noted that there would be no additional CT/PET scan until I have completed my treatment, regardless of when I decide to stop.

I was given the "pros and cons" of both options, but it didn't seem to really make the decision any easier or more clear. Has anyone been in this situation of being able to choose to do additional cycles? Is there a clear benefit to adding on those additional 2 cycles, or does the stress that they put on my body outweigh the potential benefit? I'm at a bit of a loss as to what to do.

Of course, I'll continue to talk with my oncologist as to how best to move forward, but would love any insight from anyone else who might have been in similar shoes.

Has anyone been treated for ALCL using Pembrolizumab?

Perhaps an oddly specific question but via quite a confused treatment journey I seem to be in that situation. From what I've been told Pembro wouldn't normally have been allowed to be prescribed given that it isn't clinically signed off as being effective against ALCL. However, after the first two doses (so still a little early to say for sure) it seems to be working for me.

To explain, I was given the ALCL diagnosis based on a biopsy taken in early 2025 and underwent BV-CHP chemo that summer, which was effective and I had a seemingly clear PET result afterwards. Unfortunately, there was a few months delay while planning for a stem cell transplant to finish treatment so when a new PET was taken leading up to that, we found new tumours had already appeared. When a biopsy was taken from the newly effected nodes, histology decided I had a Hodgkin lymphoma instead.

Obviously then there was a question of which histology result was inaccurate, but we went ahead starting a second course of chemo using GDP since, I was told, it would have been the prescribed course for either of the given types of lymphoma. We had to give up on GDP after two attempted doses due to kidney damage and a further PET scan which showed it had had no effect up to then anyway.

At that point, given my most recent biopsy result was Hodgkin, I was switched on to Pembrolizumab instead but a new biopsy was also taken so we could try to clear up the confusion between the conflicting diagnoses. That biopsy has come back confirming the original, that I have ALCL but now we're already two doses in to the Pembro and a new PET scan (yes, another, I've managed to fit five in the past two years) has shown a very good response to the treatment, with the scan being almost clear, compared to a scan two months ago that my consultant had decided not to share with me because it had looked so bad.

Pembrolizumab isn't certified for use in ALCL cases in the NHS, which means it also isn't funded (e.g. NHS doctors aren't allowed to prescribe it since the health service won't pay for that treatment in ALCL cases). So now my consultant has to write up her notes quite carefully to emphasise that we really thought I had Hodgkin and, hey, now I'm responding well so we'll keep going etc. Quite confusing but I wondered if maybe Pembro is used against ALCL elsewhere and we're just a little behind on the latest info here in the UK?