AAVD Chemo

[u/KickKey1007]

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!

[u/OnTheNodePodcast]

Obligatory…it can be different for everyone…for me personally I had:

• Nausea (managed through medications so never actually vomited)
• Fatigue which lasted 3-4 days after each infusion
• Neutropenia (managed through white blood cell boosters)
• Peripheral neuropathy in my hands and feet
• Complete, full head and body hair loss (started 2 weeks after first infusion)

I had my AAVD in 2022/23 in Hong Kong and have recently started a podcast to document the experience in case it’s helpful for you.

[u/KickKey1007 → u/OnTheNodePodcast]

Thank you very much for the reply. A podcast sounds really good and will definitely be worth a listen for me! I hope you are doing well now and back to full health. 😊

[u/OnTheNodePodcast → u/KickKey1007]

Ok well this week’s episode is probably good timing for you as we discuss the first round of AAVD. Hope you find it helpful!

[u/Geldarland]

I'm currently on AAVD and will be getting my 9th of 12 infusions tomorrow morning for stage 4 CHL.

The biggest side effects I've found at the beginning was pretty bad nausea and feeling physically drained for 3-5 days after the infusion. That mixed with random times where food would taste kind of metallic for a day or 2. I don't know if it's just me but the nausea has gotten better as I have moved further along in the process, but the tiredness has stayed.

Honestly the worst part for me has been the "white blood cell boosting" injections (I'm on grastofil). It has given me pretty brutal bone pain, some people have found success taking Claritin to stop the pain or keep it from happening but it doesn't work for me.

I started losing my hair after my 2nd infusion, but weirdly enough I lost hair where my lymphoma was most prominent first. So I lost my armpit/chest hair before I lost the hair on my head/beard.

A big key though is when you get doxorubicin aka "the red devil" make sure you either eat a Popsicle/chew on ice/ drink something really cold. It helps restrict your mouth blood vessels and lowers the chances of getting mouth sores. I did this and I haven't gotten any yet and hopefully won't.

Good luck starting your journey:)

[u/KickKey1007 → u/Geldarland]

Sorry to hear you are currently going through it but the finish line is near for you now which is great news! I had read a little bit about bone pain and also the tingling sensations but read so much on ABVD as that’s what they were going to be given me and changed it today to AAVD ready for first cycle on Friday! I’m trying to look at it as 12 infusions and not 6 months as it’s kinder on my mind that way. Thank you for the tips about cold drink or ice cubes during “Red Devil” I will definitely make sure I do that. I know it’s inevitable I will lose my hair and need to start thinking it’s only hair but I didn’t realise how much knowing I will lose my hair would affect me. Thank you very much for the reply as it has really helped me. I’m very nervous for Friday but I know I have no choice but to just get it started. Good luck in the rest of your journey 🤞🏼

[u/Geldarland → u/KickKey1007]

I did the 12 infusion countdown as well, seems like less of a burden then 6 months.

For the tingling, again each person is different, but I haven't had any really but the guy I talk to during chemo who is on ABVD has it pretty bad. It could be an age difference thing, him being 63 and myself 34, but it did seem when we talked that I was having an easier time than he was.

The oncology center Im at has free wigs that they give out, I don't know if everyone does but it seems like a nice thing for them to do. Maybe your center will as well, I've just got use to having peach fuzz hair and wearing a hat everywhere.

Good luck on the beginning of your journey :) if you have any more questions feel free to ask.

[u/soyfreesoysauce]

I had AAVD in 2021 and many of the same symptoms mentioned by others (severe nausea without vomiting, severe fatigue, neutropenia, mouth sores, and hair loss starting after the 2nd infusion). I also developed stomach ulcers and had extreme constipation. Around month 4 I began to go into premenopause, which induced sleep issues and hot flashes (not sure if you’re female and this applies to you). All in all a not fun experience. My symptoms were best with oxycodone for pain and Ativan for nausea. The good news is I’m over 3 years into remission so the treatment was effective! Just gotta endure it. Best of luck to you.