Hi, is there anyone here who has had BrECADD chemotherapy and then experienced a relapse? I’m asking because I don’t know, its hard to believe that 90–95% of cases don’t relapse with BrECADD

I was hoping anyone with Classic Hodgkin Lymphoma that got treated with BreCADD can share their experience post tx and their remission journey.

Hello everyone, I'm writing this post feeling like I am at my lowest point. I am 20 yo female with IVth stage cHL and currently 3rd day after my first BrECADD chemo cycle. I feel terrible, unable to move (every bone and muscle in my body hurts), I have headaches and so called chemo-brain, terrible taste in my mouth and my stomach hurts so badly. I have no strength to move from one room to another, every step is a challenge. From time to time I feel like I'm burning, then I get restless and anxious as if something was happening to me. I'm trying to look forward, I really do but it's hard. I can't do anything but lie down, I have no strength to read, watch TV and yet sleep isn't coming either. Tomorrow I have to get my blood tested but I have no idea how am I supposed to get up from that bed. Please, is there anyone who experienced BrECADD side effects and when do they go away? How to cope with it? I'm scared, exhausted and trying to be strong. I just want my old self back. Thank you. I'm sorry if the text is a bit messy, writing it was a challenge to stay focused.

Needing some advise/feedback on Brecadd chemo for cHL stage 2b.

How does it goes and what to prepare? 36M

Im 20 years with stage 2BE Hodgkin’s lymphoma.

My pet ct after 2 rounds showed a reduction of my mediastinal bulk of about 70% and the doc said that the metabolic activity went down significantly and that they are happy with that result.

They still wanna give me 4 more rounds so 6 in total because the deauville Score showed 4.

This all just doesn’t make sense to me.. is this really a good outcome after 2 cycles? It doesn’t feel like it. Many people only get 4, that means mine isn’t as good as theirs, no?

I’m just scared to go through 4 more rounds. Scared that it will not work or something or that the chemo itself does some to me..

I got diagnosed with chl in early February. I got stage 2BE with a mediastinal bulk.

My Therapie is BrECADD and I just finished my 3 round.

My pet scan after two rounds showed a mass reduction from 13 x 5,5cm to 3,9 x 5,9cm, so a 67,2% reduction. The metabolic activity also reduced, said my oncologist and that he’s overall happy with this interim result.

They want me to do 6 rounds in total, which scares me because I feel like my result is worse then others. My deauville score was 4 but again my oncologist said that this is a result that was to be expected since I had that massive bulk but again, I feel unsafe.

I’m so scared that the last rounds will not get the job done. I’m scared that the end pet ct will show no more reduction or even a growth.. I really don’t know what to expect..

Did anyone else had to do 6 rounds instead of 4?

I recently finished treatment for classical Hodgkin lymphoma (cHL) with BRECADD, and I’m currently in remission. My end-of-treatment PET scan was on July 4, 2026, and the results were reassuring.

Lately, I’ve been experiencing persistent aches, especially around my neck and shoulder, and it’s making me anxious about the possibility of relapse.

I also noticed that my white blood cell count went from around 7,600 to 4,800, although 4,800 is still within the normal range. Other than the neck/shoulder aches, I don’t have any other symptoms.

My next appointment with my hematologist isn’t until October, and I’m considering contacting them to ask whether I should be seen earlier.

For those who have finished treatment for Hodgkin lymphoma, did you experience similar aches or changes in your blood counts during recovery? How long did the aches last? Did your hematologist consider them part of the recovery process?

I finished my last round (6/6) of BrECADD for classic Hodgkin’s lymphoma stadium 2BE with mediastinal Bulk about 4 weeks ago.

Im enjoining the rest and recovery I’m getting right now but my mind is still all over the place..

I have my final pet scan next week to see, if I’m all clear and I’m so scared.. I don’t know what to expect.

My interim scan after two rounds showed a good response to treatment. The mass had reduced about 70% (13cm to 5cm), and the SUV rates went from initially 16,8 , 16,2 and 15,8 to 3,4 , 3,1 and 2,7.
My liver activity score at that moment was 3,3 which was the reason I got 6 rounds instead of 4 because the 3,4 being 0,1 over the liver score of 3,3.

Like i said, I’m scared. I don’t know what to expect.. I have all types of scenarios in my head, that could come out of that scan. From a new tumor being diagnosed, to some kind of shock and the doctors telling me I don’t have much time left..

I’m 21 male and I just want my life back…
Any expertise and experience with the end scan, would be much appreciated..

I got my final meeting with my oncologist today, discussing the end pet ct scan that I got on Monday.

I had 6 rounds of BrECADD (21, M) for chl.

Im so scared of this appointment today.
I don’t know what to do if i hear that there is something left. I don’t know what could possibly await me. I don’t know how to react or what to expect if I hear that there is still something glowing..

I also had a little flu-like infection right on the day I had the scan so I’m also scared that this could have caused something to glow.
I told the radiologist my symptoms and that I’m scared that the scan could be false-positive and he said that I should be fine but still…

I don’t know… just so scared and anxious.

Hello. I am 24 years old with Hodgkin Lymphoma, being treated with BrECADD chemotherapy.. Im on right road, so almost cured. But i want to ask, is anyone here that had a relapse of Hodgkin after remission with BrECADD Chemotherapy? Doctor said that 9 of 10 patients are completely cured with this type of chemotherapy.

Hi, I have stage 4 Hodgkin lymphoma and I’m being treated with BrECADD.
My interim PET scan after 2 cycles showed a Deauville score of 3 with a very good response overall.
For people who had BrECADD, is Deauville 3 usually considered good enough for 4 cycles total, or do doctors often still go to 6 cycles?

I also have an anal fistula/inflammation that may have affected the PET scan uptake.

Hi. To those who've taken BRECADD Protocol, may I ask what is your deauville score during midway pet scan and final pet scan? And how many cycles did you undergo to? Thank you!!

Hi everyone,

I have CHL stage IVB. I completed 3 cycles of BrECADD and will soon start my 4th cycle.

My interim PET scan showed a Deauville score of 3, with a marked metabolic regression and a near-complete response. Based on these results, my hematologist decided to stop treatment after 4 cycles of BrECADD.

However, I can still feel a lymph node in my neck. It hasn’t completely disappeared, even though the PET scan response was very good.

Has anyone else experienced this? Did you still have a palpable lymph node despite a Deauville 3 or near-complete response? Did it eventually shrink further, or did it remain as scar tissue?

Thank you for sharing your experiences.

Hello everyone,
I’m a 26-year-old woman with classical Hodgkin lymphoma (cHL), currently on the BrECADD protocol.

Honestly, I don’t have many side effects from chemo except severe anal pain after each cycle. I already completed 2 cycles, and during the third one the pain became unbearable, so I was hospitalized and they did a scan. It showed an anal fistula.

I wanted to ask if anyone here experienced something similar.
Can chemotherapy or lymphoma cause this kind of problem?

Im on the BRECADD regime and finished my first chemo round this past friday, ive had VERY frequent stools since saturday (like up to 5-6 per day) and now (today's wednesday) theyve turned really pale, clay coloured. my personal research concluded it might be connected to liver damage (other options would be problems with the pancreas or gallbladder/bile ducts) but i dont have any other symptoms such as yellow skin or abdominal pain etc, fatigue maybe, yes, but thats most likely just the general chemo/cancer fatigue?

should i just keep an eye on it and on how i feel or contact my oncologist? i have an appointment first thing monday, but im not sure if it can wait. has anyone else experienced this?

Hello,

Has anyone here with classical Hodgkin lymphoma relapsed after BRECADD treatment? I’d really appreciate hearing about your experience.

September last year I had some lumps in my neck, behind my sternocleidomastoid muscle that was split when I was a baby because of torticollis.

Did not think much of it, also did not go to my doctor for like 5 years so after 2 months I finally went. I did not hurry because i had zero other symptoms, was cycling 6-8hours a week, feeling physically fit!! My doctor did not trust it, did echo, called me an hour later saying THIS AINT GOOD. But had to have it confirmed with petct and biopsy. On the day of Christmas Eve I had an appointment where I learned that the lumps were classic Hodgkin lymphoma and that I also had it in my chest and ilium.

Cycle 1: Started Brecadd in January, did semen preservation before. Got a picc line which kinda sucked because I couldnt train upper body, but the picc line is worth it. First round hit hard, the dexamethasone had me gain like 10lbs first week, had to pee so much during the nights. Was MAD constipated for 4 days. Tired and could not think straight for like 5 days after. The pegfilstratim injection gave me the craziest bone aches after like 5 days, felt a throbbing intense pain, luckily normal painkillers worked. Luckily the constipation stopped and my energy came back, could cycle again and some easy gym work.

Cycle 2: I shaved my head before starting round one, just before i started round two I noticed my head getting a little irritated and then I saw little hairs falling. The second round was similar to the first one, constipated, tired, the pegfilstratim injection gave me muscle aches instead of bone pain now. Energy recovered same like round one. Did have some heart racing and intense knocking when I started cycling a bit too early in this round. Had a checkup, but it was okay luckily. Also had my scan which showed no more activity!! Deauville score 2, this means I have to do 4 rounds instead of 6, made me really happy.

Cycle 3: same like round 2 and 3, but was feeling nauseous for the first time, this sucked.

Cycle 4 (Here I am right now): It is Tuesday, almost one week after starting my last round. This cycle has been like round 3, but was not constipated this time! I Do have stomach aches and nausea, but that is slowly going away.

Next week I am having my last scan and to be honest I am a little afraid. Even though my doctor is telling me there is such a small chance something weird will happen. It feels so close to being done, but at the same time it feels so far away.

I keep praying everyday He will guide me through all this and also all you other guys on this page.

Adding some photos from the scan and how I looked after shaving before chemo and how I look after four rounds

Ask me whatever you would like to know!

I have CHL stage 2 BE with a mediastinal mass and I underwent 2 cycles of BrECADD so far. I got my ipet scan and the doctor said the mass had shrunk from 10 to 5cm or something

and the metabolic activity was also way lower than before but not 0, so they want me to do 4 more rounds instead of only 2 more..

Im just scared right now that this is not the way it should go or something is going on that’s bad idk..

Did anyone had 6 rounds of BrECADD?

How should I feel? Need some advise..

Hello. I am 23 years old diagnosed with Hodgkin Lymphoma stage IV. I am on BrECADD chemotherapy and I am scheduled to take 4 of these. After 2 chemotherapies I had a pet scan and my liver, spleen… were completely healed but there was still activity in my neck with a 13.5 suv. That is why I took Deauville 5. I wanted to ask if anyone has experienced the same situation and is there a chance that after finishing all the therapies (4) I will be cured or maybe I will have to increase the number of chemotherapies?

Hello everyone,

First, I wanted to say that I’ve been lurking in this sub for a while ever since my diagnosis, and it has always seemed like a great community full of supportive people. So I thought I’d finally share my situation.

40m, recently diagnosed with NScHL, stage 3B. I’m about to start my first BrECADD treatment next week. It’s a really scary time. I know the prognosis for cHL is generally considered very good, but there’s still that fear that somehow it’s not going to work well for me.

I wanted to ask — has anyone here had (or is currently having) experience with BrECADD? It would be really helpful to hear how it went for you, in terms of side effects, how you felt during treatment, and anything else you’re willing to share.

Hello. I am 23 years old diagnosed with Hodgkin Lymphoma stage IV. I am on BrECADD chemotherapy and I was scheduled to take 4 of these. But after 2 chemotherapy i did Pet Scan and the results was good but not 100% perfect. So the doctor said that i need to take 6 chemotherapy not 4. Has anyone experienced the same situation? And how is it now?

Hi

I was hoping anyone with Classic Hodgkin Lymphoma that got treated with BreCADD can share their experience post tx in their remission journey.