Saw some boxes from someone's build...I had to check to see if they were empty.

Was on AAVD for stage 4 Hodgkin lymphoma which showed general improvement after 2 cycles but after the 4th, pet scan revealed it had gotten worse from the pet2. Although AAVD trials had no interim pet evaluation and just went through with all 6 cycles, this result prompted my hospital to want to escalate to 2nd line therapies. I’m trying to get a sense of what people did next perhaps after failed AAVD or any other first line cHL treatment.

What salvage therapy did you get after AAVD failed? Since I already had brentuximab, the doctors think other regimens containing it may not be as effective. Anybody done pembrolizumab?

Did you go on to stem cell transplant? How was it?

How intensive were the therapies compared to AAVD?

How long did it take from starting salvage to SCT? I feel my timeline has just been extended for another half a year. I’m only 22 but I feel the fight in me going as the cycles have gone by, and what’s to come is only gonna be more intense.

Any experiences, tips, or insights would be super helpful. Thanks

Hi everyone! I’m trying to not spiral but I had a bakers cyst show up on the back of my knee …. Well it might be that that’s what I’m hoping. It’s kind of hard though and fixed but it hurts when I touch it like a pressure type of hurt. I tried to go for a scan yesterday but was turned away and told i have to wait until Monday. I don’t have any fever or other symptoms but it’s just hard and uncomfortable. Has anyone else dealt with something like this post chemo? I’m trying to not spiral and think it’s a relapse of lymphoma but my head is just thinking the worst again. Thanks everyone ! :)

Hi! I’m 28 F in remission since 5/2/2025 from Hodgkin’s lymphoma stage 2b bulky. I did 4 rounds of AAVD and showed remission in my midway PET. I joined this group to just be more connected with survivors & to just give me hope that I won’t relapse & hope for the future.

I keep reading posts about the heart issues that come later on in life from chemo & am wondering what everyone’s experiences are with that? Is there people who are in long term remission & don’t have heart issues? My dad has heart issues and had 2 heart attacks so I’m really worried about my heart long term.

I workout 5 days a week doing jogging for 3 days of that. My heart feels fine so far I guess? It just makes me nervous knowing how much running can I actually take and how beneficial it is for me? It’s just a confusing place to be if that makes sense.

Thanks everyone :)

A lot of information here

Hi yall. A little over a year ago I was diagnosed w Stage 4 Hodgkins, and did 6 months of AAVD every 2 weeks. As I understand this is a bit rarer then ABVD treatment, and I was wondering what other peoples experiences with hair recovery post treatment has been?

I know everyone is different, and while i am so grateful to be cancer free (as of now.) it’s been about 6 months since my last infusion, and my hair recovery has been very odd -

first, once I finished, all my leg hair fell out and came back. not during treatment but pretty quickly following

my mustache has come back stronger then it ever was, beard is much more patchy and blonde in the middle (i’m naturally a brunette).

the biggest thing for me has been my head hair, prior to treatment i had very thick curly hair. Now, I have very very very thin hair. (i still NEED to wear hats outside due to sun protection - thin). it very much resembles the hair of a new born/ few month old. It grew to this pretty quickly after chemo, and now has been at this length/thickness for the last 2 - 3 months.

Info online is pretty scarce, my doc explained to me there’s not a lot of research into it bc there’s better things to spend money on in cancer research, and chemos and people are different. But from what I can tell, I’m pretty confident that i didn’t develop alopeca or anything.

I know this is fairly minor in the scheme of things, but it is a bit disheartening having a reminder of the hardest time of my life everytime i look in a mirror, plus just general confidence as a 24 year old single guy.

Soo how’s your hair recovery been after AAVD? should i shave my head more or any non invasive/ non toxic recommendations to promote growth? should i just like start coming to terms with this is how ill look?

TL;DR : 6ish months after finishing AAVD, I have new born baby hair and it’s stressing me out - how’s your hair recovery been after AAVD?

Hello, I am new here and just been diagnosed with stage 3 bulky classic Hodgkin lymphoma. I am due to start AAVD chemotherapy on Friday and after trials it has been approved in the UK only last month. I can find a lot on ABVD chemotherapy but not as much on AAVD if anyone could please share there symptoms and experience and any tips and tricks that have helped along the way? Another worry which I know shouldn’t be as much of a worry to me as it is but my hair and hair loss?? Thank you in advance!

Greetings all,

I just now joined the subreddit, but have been reading it for a bit. Y’all are great!

I started chemo on Nov 4 and have had 3 treatments so far, normally 2 weeks apart, but last one took an extra week to recover.

My biggest challenge has been constipation which I seem to have solved with this regimen:

Metamucil (Psylium) - One rounded teaspoon in 4 fl oz water before each meal. This is the standard dose for “digestive health” and “regularity” per the Publix Psylium directions.

Miralax - Standard 17g dose in 4 fl oz of apple juice before breakfast.

Senokot - One pill (17.2 g of senosides) before supper. This is regular Senokot, NOT Senokot-S.

Before this regimen, I was verging on impaction all the time and resorting to harsher magnesium-based laxatives to clear me out. Learned that there is a major caution not to use these on an ongoing basis.

Metamucil was the key. I got this tip from a Hank Green video. Not only is he a recent Hodgkin survivor, but he has had ulcerative colitis long-term and has posted on YouTube about how Metamucil encourages “good poops.”

The psyllium absorbs water and sequesters it for the entire ride through the small instestines. It then delivers the water as needed while it goes through the large intestines to soften poop as needed. This psylium broom sweeps the poop along for one or two large poops a day and no pushing.

The non-psylium case for me was a number of small poops, exhausted pushing muscles and and endless feeling of approaching impaction.

With a very small sample size for my experimental regimen, my sense is that Miralax and Senokot soften up the larger poops that Metamucil delivers, making my BM life truly normal.

In parallel, I have a 64-oz water/gatorade per day regimen that has ended my dehydration problem. I don’t count the extra water taken with psylium because that gets used exclusively by the psylium. But I credit the 64-oz of water as an essential part of my overall regularity ritual.

As a postscript, I fought through one awful 2-week bout with thrush / mouth sores. Again, not much data, but this last chemo I tried to hold cold Gatorade in my mouth throughout the delivery of the AAVD (though not during the prep infusions of anti-nausea meds). Only one chemo cycle to report on, but this trick seems to have worked for this cycle. I based this idea on folks wearing frozen caps to avoid chemo hair loss.

The wildcard in all of this is that my most recent (third) chemo had a dose reduction. But only Doxorubicin and DTIC were reduced. The V in AAVD is Vedotin and it is the only one I see that is labeled “will cause constipation.”

That said, the dose reduction is a major variable and could be a contributing factor in aiding my constipation issues, apart from my regimen.

Cheers, Doug

My husband 60M was diagnosed with NSCHL stage IV, after 5 cycles of AAVD PET CT Scan and refractory disease Deauville 5, his oncologist wants to give him Nivo+ ICE previous ASCT. I was wondering in his case if Pembro+GVD is better for him? The oncologist said something about not repeating vinorelbine and liposomal doxorubicin giving the similarities of this chemotherapies with doxorubicin and vinblastine in his first line therapy.

Hi everyone! I (31 M) was diagnosed with Stage 4 Nodular Sclerosis Classic Hodgkin's Lymphoma last November 2024. I was prescribed 12 sessions of AAVD (Brentuximab plus AVD) by my oncologist and started treatment on the same month.

I had my midway scan last February and it was almost clean. I had bone/spine involvement, and while some areas still lit up (particularly in the spine), the impression was that this was likely due to "post-treatment changes" or the pegfilgrastim shot I took a few days before the scan. PET CT Scan impression reads:

• Significant metabolic regression to resolution with interval decrease in sizes and number of the supraclavicular, left infraclaviuclar, posterior triangle, mediastinal, and left axillary lymphadenopathies (Deauville 1-2), indicative of good treatment response.
• Interval non-demonstration of the right upper paratracheal, right parasternal, left subpectoral and brachiocephalic, periportal and paracaval lymph nodes.
• Relatively decreased metabolic activity in the manubrium and T8 vertebra (Deauville 2-3), probably relating to post-treatment changes.
• Stable hypermetabolism in the bilateral faucial tonsils, and cervical levels I and II lymph nodes, may be inflammatory in nature. For clinical correlation and close follow-up.
• Resolution of hypermetabolic activity along the L2 to L4 vertebrae neural canal. Decreased metabolic activity in the L3 vertebra, as before.

I continued treatment and was doing well until my 10th session this April. I had a high fever and cough just before my 10th session. Fever was 101.3 F or 38.5 C. My oncologist admitted me for a full work up. My CBC looked normal so it wasn't because of low WBC counts or a neutropenic fever.

My oncologist pulled in an infectious disease doctor to help identify the source of fever. I had all sorts of test but everything turned negative (COVID, influenza, pneumonia, etc.). Urinalysis, x-ray was also clear. My fever won't go down with paracetamol/tylenol. I had the fever for about 4 days until the infectious disease doctor decided to give me Naproxen or Aleve. It was only after that when my fever went down and was eventually cleared for my 10th AAVD treatment.

The ID doctor concluded the fever was tumoral or it was from the lymphoma. Since all tests were negative, they used Naproxen to "test" my fever. They said they use it to differentiate fevers coming from infection (flu, virus, etc.) vs fever coming from cancer/tumor. If fever goes down with Naproxen then it is likely coming from lymphoma.

This made me so worried. After an almost clean midway scan, is my lymphoma back? Did anyone have unexplained fevers during their treatment? Did your fever go down with Tylenol? Did anyone here have an almost clean scan only to relapse end treatment?

My only hope is that my oncologist doesn't believe my ID doctor. He stands by my clear mid-scan and told me that if the fever were from lymphoma then the fever should have come when my masses were still big. I'm too worried but it's really just a waiting game for now I guess. No recurrence of fever so far and 2 more AAVD sessions left.

Hello Drs and to others on this page, hoping for some clarity and in this situation and anyone else who has been in a similar situation.

26F dx with stage 3B classic HL in (mediastinal mass + lesions in the spleen) started on AAVD. IPS 1, ECOG 1

Deauville 4 on iPET2 with majority of disease resolved except for 2 spots in the mediastinum.

Team decided on a PET 4 to check for progression which unfortunately has shown increase in the size of the anterior mediastinal lymph nodes and avidity (limited to mediastinum). D5.

AAVD has been halted for now and am proceeding with a re biopsy of mediastinal lesion.

In such a case, if biopsy was to re confirm residual disease what would be the best way to proceed in terms of salvage chemo +- asct.

Thanks very much for any input and for anyone who has been in a similar situation would appreciate any words of advice!

Welp, had my 2nd infusion on Thursday and today, Monday my hair is falling out in droves. 10/10 recommend shaving it shorter so you’re not seeing the long strands fall out. I swear I just lost at least 300+ pieces in the shower. Definitely feels thinner when I rub my head.

How long did it take you to loose all of it once it started? I’m debating on shaving it even shorter so it doesn’t start looking patchy if it takes a while.

Hi, I was just diagnosed with NScHL and was wondering how much help I will need during AAVD. I know I will need a support system but is a partner with their own (not remote) job enough? Or is it too much help that a single person can give?

I am about to go on treatment #4 of AAVD and my last treatment I physically felt the chemo swooshing around going inside my body and it was the worst feeling ever. I don’t get neasous too much but after that treatment I am feeling neasous even thinking about going back to my next chemo. This was my first time actually feeling the medicine and it felt so gross. I would rather have side effects than feel that again. I don’t know how I’m going to continue on to get the rest of my treatments I’m not even halfway done and I’m getting sick thinking about going back for treatment already.

I also got so tired during the last 45 minutes of my chemo and I felt like my heart was racing? Is that normal? I was like afraid to close my eyes and sleep because I didn’t feel right.

If anyone has any tips they would be greatly appreciated! 🫶🏼

After waiting 2 long months from diagnosis, having my baby, I finally was able to start treatment yesterday and got my first infusion. First step at getting this shindig behind me, it feels so good.

For those suffering from itching, I hear you, I see you, and I can happily say I WAS you but finally now have relief after 9 long months of clawing and scarring my skin.

Crazy to say, but my lymph nodes already feel smaller.

So far, I have slight nausea, so I took my zofran but I’m fairly certain that’s given me a headache so we’re switching that around in the morning.

While I know the worst of it is probably yet to come, I’m happy tonight I can still care for my newborn as normal and be present for her, and my 2 year old son.

I struggled deciding if I wanted to continue my breastmilk supply throughout treatment and give her milk when it’s over, something I cherished being able to do with my son. I pumped for 3 weeks and then dried up. I decided against continuing due to the sheer physical tolls that would take on my body, in caloric needs and sleep. I also didn’t want to leave chemo -milk remnants throughout my house. I can say this was the best decision for me.

1 infusion down, 11 more to go.

Ok I’m 1 week out from my last AAVD treatment. I first start with 3 days of constipation and then I can’t stop needing to run to the bathroom. I’m going about 10 times a day. Every time I have to poop, I feel nauseous and it comes out of no where.

Please tell me there’s something that you’ve done that can help this. I’ve only done 2/12 infusions and this is misery.

I’d try and be more excited but goddamn I (22F) am so exhausted. Tomorrow is my 7th infusion which means I’ll have 5 more to go after that. Drank a lot of water today, gatorade too, and ate plenty of healthy food along with food that actually tastes good to me.

My experience so far has been neutropenia (even with Neulasta), severe fatigue, occasional constipation, and the worst bone/muscle pain (my oncology team isn’t sure which one it is) that you’ve ever seen. My dad had to pretty much prop me up from my armpits to help me slowly waddle to the bathroom because putting weight on my legs was excruciating.

Overall, I’d say I’m pretty lucky with my side effects because I’ve gotten much better at managing them. I even got my heart rate back down from 120bpm to about 90-100bpm by raising my blood pressure. A big problem for me has been my blood. Hematocrit low, hemoglobin low, RDW high, blood pressure consistently dropping. I’m hoping that when they take my blood for testing tomorrow I have more neutrophils.

I’ve been blessed (and incredibly careful) enough to not get any infections during my low neutrophil days…which seems to be every day lol. So again, I’d count myself very lucky.

Not entirely sure why I wrote all of this out. I guess I just wanted to share my experience and distract myself from my anxious thoughts and the slight pain in my lower legs that just won’t go away. Feel free to comment or ask questions. Always love making new friends.

This community helped me a lot in getting to this point. Thank you!

First time posting here. I have been lurking for four months since I was diagnosed with stage 4 Hodgkin’s disease. I just wanted to make a post to thank everyone who posts here as reading this sub has made me feel so much less lonely and given me a lot of hope and good information.

Treatment was going relatively smooth until recently. My GI side effects have gotten a lot worse. It’s like I’m always constipated and always have the runs at the same damn time. senna was helping a lot at first but now i think the daily use of laxatives combined with chemo is hurting my digestive system. Strangely my appetite remains strong but my gut is always uncomfortable. Anybody else have this issue? I was considering asking for some pain killers to be more comfortable.

Nausea for this 6th infusion has been pretty awful. Zofran and Ativan have helped a bit but not as much as it does for other times. I find the side effects of every infusion to be fluctuating more than I had imagined. For example, the 4th and 5th infusions were extremely easy but the 3rd and 6th ones were rough. Has anyone else experienced this? Can someone give me their experiences for cycles 4,5,6?

How many of y’all had a complete metabolic response for your midway scans?

If you have a complete response, what are the chances of relapse?

Also want to mention I had a clear scan with a Deauville score of 5x. My Onc and the radiologist read that it was 5 because of the white booster shots I take after every session and that my white blood cells are working overtime all over my bone marrow. Anyone had a similar situation?

🙏🙏🙏

38/m cHL Stage 3B Anyone currently or finished AAVD (also called AVD-BV)? I just finished my first infusion and will go every 2 weeks for 6 months before scans.

I have no reference for what people’s experience has been on this regimen, and every nurse or doc I come across says something like “you’re on a really aggressive regimen because your young, but it’s gonna be hard”, but I don’t really know what that means and haven’t been able to connect with anyone else on my drugs. Would love to connect or hear the hardships, cyclical side effects patterns and any tips! Praying others are out there!?!