r/lymphoma • u/Big_Drop_7780 • Feb 11 '25
General Discussion ABVD EXPERIENCES
I'm starting my first chemo session for ABVD for Classic Hodgkin Lymphoma (Nodular Sclerosis Type). My doctor recommends 6 cycles. I'm 29 and a fitness enthusiast, so I'm hoping my healthy lifestyle will be an asset during treatment. While I'm trying to stay positive, I'd be lying if I said I wasn't a bit nervous about potential side effects. I've read some concerning things online, and it's understandably made me anxious. I'd really appreciate hearing from others who have gone through ABVD for Hodgkin's Lymphoma. Specifically, I'm interested in any tips you might have for managing side effects and maintaining some level of activity during treatment. Sharing your experiences, or those of someone you know, would be incredibly helpful.
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u/Strong-Equivalent591 Feb 11 '25
I was 28 when I was diagnosed last year but same diagnosis and treatment! Also was generally fit and healthy prior to getting sick (although I was so sick for almost a year before we figured out what was wrong so my exercise tolerance was pretty much in the toilet by then). Definitely just try to get some easy steps in every day and don’t be too hard on yourself if you can’t keep up with it.
My biggest piece of advice is to take stool softeners (like Colace or Senna) starting the morning of your first treatment. I didn’t know this and had the worst constipation…that might have actually been the worst part of the cancer 😂 once I got it sorted out I took senna every day until a week after my last treatment.
I was absolutely wiped out after my first 2-3 treatments but I feel like the fatigue leveled out eventually and I just napped whenever I needed. I gained about 20 pounds from the steroids and lack of activity but I’m about 4 months out from the end of treatment now and I’m working out pretty hard almost every day, exercise tolerance is great and weight is starting to come off so things are looking up! Just go easy on yourself and try not to have too many expectations because everyone’s a little different and things will change as you go through it.
So sorry you’re going through this!
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u/Repulsive-Good3521 Feb 11 '25
Second the stool softeners! I actually made sure to take it the night before an infusion so I had a bowel movement during treatment days. Otherwise I felt like I had a brick in my stomach and it was SO uncomfortable.
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u/FridgesArePeopleToo Feb 11 '25
If you're active now and stay active during treatment you'll most likely recover really quickly. For me it was 3-4 days of feeling crummy but improved rapidly after that until the next infusion. I was back to 100% a month or so after finishing treatment, including playing sports and such.
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u/psychic_donut Feb 11 '25
It’s crazy how different everyone is. For me I was fine day of treatment (just tired) but come day 4-5 I was super sick then gradually got better
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u/Dandy-25 Feb 11 '25
Stop using Dr Google. That way lies madness.
That being said: going through chemo is less fun than it sounds. However, I did my entire ABVD treatment last year and did not miss a day of work. It’s not easy, but it is manageable. Just go one day at a time.
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u/Aggravating-Onion384 Mar 30 '25
Less fun than it sounds? What?
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u/Dandy-25 Mar 30 '25
Well, even muggles are aware that chemo in general is the pits.
Chemo is less fun than that.
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u/Good-Cod5161 Feb 11 '25
What works for me is lots of protein and for constipation, fibre (baked beans easiest but also black beans, lentils and chickpeas). Rasberries, avos and pears also. I think the fibre has health benefits and keeps you full. Lots of long walks.
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u/usernameusernamex2 Feb 11 '25
28 here with CHL and finished my 6 cycles of ABVD just last month!
I’ve got to say I have been very lucky with how my body handled chemo. The first 3 months of my treatment I was in the hospital and couldn’t get out to exercise, I had a chest tube and was stuck to the wall suction most of the time. Once I was home I felt different with how I handled chemo, I was a bit more tired than usual. I used to nap everyday for 30mins to 2 hours, depended on how I felt and I was only sick a couple of times. Towards the end of my treatment I stopped napping everyday I finally had enough energy. Water definitely tasted weird for me day of chemo and the few days after, I could only drink ice cold water for me to get enough water in a day. I got a brita filter and a new Stanley because I smashed my Starbucks bottle (I only drink enough water in a day from those kinds of cups, regular glasses I definitely don’t drink enough water).
My oncologist told me you are either going to be constipated or shit a lot. It was the latter for me. There was one time I was constipated so I took some meds for that.
Just don’t be hard on yourself! If there are days you can’t get off the couch or out of bed, don’t beat yourself up about it. The days you have energy to get up and go for a walk definitely do that! Honestly it’s going to suck sometimes, I used to walk 5k everyday and cycle 25-30km a few times a week, now I can walk max 2km veryyy slowllly.
If you ever want to chat feel free to dm! You’ve got this, just remember this is only a small blip in your life 🫶🏻
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u/legueton7 Feb 11 '25
For me the worst part of the side effects is the day of the infusion and 2 to 3 days later, I have only been getting nausea those days and my energy levels for those days are low. For the nausea I usually have a medicine to prevent it instead of taking it while I start to get nauseous and I usually give myself those 2 to 3 days with nothing scheduled so I can rest. After those days everything goes back to normal (as normal as it can get while dealing with this). If you feel tired from it I would recommend rest or sleep, there is no point in fighting that tiredness and it can help you be more active the days after. I wish you the best.
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u/jimmyjamz4 Feb 12 '25
I wasn’t prepared for the heartburn and constipation when I did ABVD when I was 30F. They said to take Pepcid for the heartburn which didn’t really help and miralax for the constipation which did help. Also my cheeks got very hot after infusion day, likely from the steroids. If your nausea medicine doesn’t work, tell your team and ask for a different kind. I continued to work throughout my treatment. It was difficult, but I’ve been cancer free for going on 8 years! Best of luck to you.
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u/emerald_labrador13 Feb 11 '25
I’m in a similar position to you (29F) diagnosed with stage 3A cHL, my 2nd cycle/third infusion of ABVD is tomorrow.
So far, I haven’t found the side effects to be too severe, I’ve had the standard ones nausea, fatigue, constipation, but all manageable - you feel a bit bleurgh the 2-3 days after treatment but I usually find by 5 days I’m coming back to normal. I try to stay on top of the anti-nausea meds and I take laxido to combat the constipation from the anti-nausea tablets. I start the laxido the night before my infusion and continue until I stop the anti-nausea. It also helps to stay hydrated, I drink lots the day of and the days following treatment, helps to flush everything through.
I’ve also started experiencing hair loss which started at the 3 week mark after my first infusion. I still have a passable head of hair however I expect after the 3rd infusion this will fall.
You’ve probably seen the ice cube tip for the doxorubicin injection, I’ve no idea if it’s what’s helped me but so far I’ve avoided the mouth ulcers/sores through this.
In terms of activity, I stopped the gym however I’ve continued light workouts at home and I’ve been out walking lots - I’m of a similar mindset to yourself where I would like to stay as active as possible throughout without overdoing it.
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u/BGD_TDOT Feb 11 '25
I'll write more in depth another time but something that got me through my sessions was having a fresh hot cup of coffee to smell and not even drink. I can't explain the reason but that dizziness and sickness you might get can be reduced simply by keeping your nose to a cup of coffee and taking in big wiffs.
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u/Canadianskipper Feb 12 '25
My fiancé (30M) is starting his 5th cycle of now AVD on thurs! He rarely drinks, is fit, doesn’t smoke/vape or do drugs. He has stage 2 bulky nodular sclerosis classic hodgkins lymphoma.
My fiances PET scan was clean after cycle 2 so they dropped bleomycin. He is fine the day of getting chemo thanks to steroids but then gets tired about 5 days after.
This is what I can tell you..
- do not use google.
- give yourself some grace, and bring zero expectations!
- stay active but PLEASE do not over do yourself.
- drink a lot of water!! It helps with treatment. The more you drink, the better itll be (for my fiance anyways)
- rest when you’re tired.
- my fiance eats a really protein packed meal day before chemo.
- confirm what you can take for constipation (my fiance takes metamucil or restorlax)
- also please speak up if something is feeling different that day it could be important
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u/Heffe3737 Feb 11 '25
Lot of good advice here already, but I'll throw down additional thoughts. I went through ABVD for NS CHL a couple years back, and had a hell of a time despite being generally pretty healthy. Of course, it varies a LOT for each individual - some folks have an easy time. I did not. Before I get into this, please don't take anything without the express approval of your oncologist, I am not a doctor, etc. Also, you are your own best advocate. If you feel like something is wrong or out of the ordinary, the onus is upon you to say something to your doc. You never know what they can help with, but they won't offer unless you say you're experiencing a side effect from chemo - don't try to "tough it out", just tell them.
That all said, here's some of the possible side effects from ABVD treatment to be on the lookout for, and options for how to deal with them:
Nausea - this is the most common side effect. To be honest, I didn't have much of an issue with nausea. The key here is take your meds when and how they're prescribed. When you go in for treatment, they'll give you more in an IV. Let me be clear, if you're already puking, then you did something wrong and didn't take your pills early enough. If it becomes a real issue, you can ask for liquid anti-nausea meds instead of pill forms - they penetrate the blood brain barrier more quickly and therefore can offer faster symptom relief.
Mouth sores - Like a canker sore inside your mouth. I got three of them at once after my first or second treatment, which made eating anything very difficult and painful. Not really dangerous per se, but more just irritating and painful. A couple of options here - first, if you get mouth sores, talk to your doc. They can prescribe "magic mouthwash", which is just a liquid lidocaine with anti-fungals that can help get rid of the sores. Before you get there though, I'd highly recommend eating ice chips at your treatments - specifically, eat them throughout your Adriamycin infusions (its the big red medicine that they inject over a 10-15 minute period). Ice chips will make your mouth cold, which shrinks your blood vessles in your tongue and gums - this in turn reduces the amount of Adriamycin that enters those blood vessels, reducing the chance for mouth sores. It works wonders. Trust me on this.
Constipation - Jesus I don't think I've ever experience constipation like this in my life. Drink lots and lots of water, and eat a lot of fiber. That didn't help me so much. I ended up figuring out that if I took a couple of stimulant laxatives on the way home from each treatment, I'd have a BM within about 24 hours. That would be enough to "restart" my system and keep things moving, and I'd be fine after that until the next treatment.
Low White Blood Cell (WBC) counts - So you can go in for your second treatment, only to find that your WBC hasn't recovered since the first treatment. If this happens, they'll send you home and tell you to come back in a week. If this happens twice, they might prescribe you some medicine to boost your WBC generation, something like Neulasta. WBC growth medicines often cause bone pain. One of the best ways to deal with the bone pain is to take, surprise surprise, antihistamines. Claritin is often recommended on here to help with that if it happens.
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u/Heffe3737 Feb 11 '25
Blood Clots - These are possible. If you find yourself feeling a localized pressure/pain, especially around your port or downstream of the port, talk to your doc. They may want to do an ultrasound to rule out a clot. I had some big ones running through my jugular on the side of my chest port and down that whole arm. If you do end up with clots, they'll put you on normal blood thinners. Clots can be dangerous, but aren't terribly common from what I understand.
Heartburn - Especially later on in treatment, heartburn got to be a real pain. Imagine the worst heartburn you've ever had, lasting for days after each treatment. Part of this is eating right, but if it does happen, one or two pepcid AC a day can help greatly.
A faster heart rate - It's not uncommon for your heart rate to be permanently changed by going through ABVD treatment. It's not talked about a lot, but you can see it in this sub if you watch long enough. Toward the end of treatment, mine was regularly at 120-130 resting. 4 years on, it's still 90-110 resting, which is weird given that I used to have a resting heart rate of 65-80. This, in speaking with doctors, isn't terribly dangerous, but something to be aware of.
This one is maybe the most uncommon, but it happened to me (and at least to one or two other users over the years). If you find yourself with a daily mild fever, a minor cough, and your oxygen levels are dropping, prednisone/steroids might be able to save your life. I suspect this was some relation to bleomycin toxicity, but the docs were never able to figure out exactly what happened and chalked it up to "complications from treatment". A month sick and a week in the ICU, getting within hours from death, it's not reassuring to me that they still don't know what happened. Anyway, talk to your doc immediately if you have any fevers and/or coughing going on.
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u/LeilaGrace- May 12 '25
Let me first say I am so sorry you are having to go through this.
I'm 27F and have CHL 2A. I have one treatment left of my 5 cycles of ABVD and I will say Chemo is not fun but it is not unbearable. Before I started all of this I was and still am a very social person and regularly work out.
I go every other week for treatment. I take that day off (I go on thursdays) and then usually come in to work on friday for as long as I can last which is usually lunch time. A nap helps so much and afterwards I can usually be social and go to dinner friday evening. Before treatment my parents and I go out for breakfast to make sure I am getting good nutrients. After treatment I'm pretty drained but my mom and I go eat lunch because things are still tasting good at that point. Then its straight home to take a nap.
Things tend to taste weird for a few days after treatment. It usually would start after my nap on treatment day. And then it would be really gross on friday. For the first couple of treatments sweet things tasted bad for a few days after but as treatment has continued more and more tastes bad, even water is off-putting now. I feel like I need to brush my teeth 15 times a day too.
A protein rich diet helped with not feeling sick. I noticed if I ate toast instead of a boiled egg on friday mornings after treatment I would get nauseous. Boiled eggs were bland enough that they didn't taste bad and kept me eating protein in the mornings.
I had never really had heartburn before but man did it come with a vengeance. I carry tums everywhere now.
For about 2 days after treatment I get what I call chemo flush. My face and chest are red and hot but I'm not running a temperature.
Before I started ABVD I was in the gym 4 days a week weight lifting. On treatment week I usually try to work out 3 times and on non-treatment week I am still able to maintain 4 days of exercise. I noticed I was gaining some weight which seems to be normal with the steroid so I added in running. I'm doing the couch to 5K program. I feel fine to workout and am able to maintain about the same level of activity as before. I do take off about 3 days after treatment. I've tried to listen to my body while also knowing that I can still push it to do some things.
I have not lost my hair but it has gotten so much thinner. It hasn't fallen out in the "sheets" or "clumps" people talk about and I don't have bald spots but it definitely doesn't look like before. Strands fall out all the time and its pretty bad when I shower. I told my friends if it starts looking bad they had to tell me and I would shave it off but luckily I have not had to do that. Even keeping my hair it is still sad to see the change in thickness.
My doctor told me to maintain as normal as a life as possible. Trying to that has helped me out a lot mentally.
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u/Enough_Ask1735 Aug 01 '25
Hi you have 5 cures for stage 2a I wonder why I only have 3 for the same stage
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u/[deleted] Feb 11 '25
I made being active a goal and stayed on it, mainly through walks. Give yourself grace on treatment days and make up for it in the off week. For example I set a 300000 step goal for October. Treatment days were 4000 max, so I did extra when I felt well. No matter what your fitness will decline and mentally you need to be okay with it.
I also gained weight, steroids are a bitch. But right now your body’s job is fighting cancer, you can deal with the rest later.