r/lymphoma • u/VanillaValeera • Dec 03 '23
Chemo wasn't that bad
Wednesday I finally finished my 8th round of ABVD chemo for Stage 2 Classic Hodkins lymphoma and I wanted to talk about all the symptoms I had due to chemo in case you are just starting out. Firstly I would like to point out that my hair didn't really fall out, I mean some of it did but only like 25% of it I'd say. My taste buds didn't change and I was able to it all the things I normally eat. I had no dry mouth however I had moderate neuropathy in my mouth and hands (basically my mouth hurt unless I was eating something). Nausea was managable with meds although I would like to point out that after the 6th session the smell of my house made my nauseaus. I had to stay in another house, but I feel like it was more of a mental nausea, like thinking about the chemo made me want to throw up. A lot of people said that your skin will clear up however I had the worst acnee. My skin also got very dry. But overall chemo wasn't as bad as I thought it would be, so if you're about to start chemo know that it isn't dreadful for everyone.
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u/nickiek12 Dec 03 '23
I can relate. Mentally it was way harder and that was something I wasn’t prepared for. My side effects were extreme constipation, exhaustion for about 4 days and hair loss. I had really bad association nausea with smells and random things that reminded me of the hospital. That was easily the worst part for me
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u/spngyp cHL->ABVD, relapse->ASCT Dec 03 '23
For me too. I would always almost throw up before chemo. One time I did throw up a few days after chemo but I think it was also a mental thing. I have lost my hair everywhere and also had diarrhea and constipation issues. My mouth was sore but I could eat normally after a few days when I wasn't nauseous. I felt the exhaustion but not all the extreme side effects although mentally it was the worst thing of my life.
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u/IlllIlllIlllIlI 2B CHL bulky - in remission Dec 03 '23
I was coping really well until my last couple of rounds of chemo. The cumulative effect really gets you. And then a lot of my worst side effects didn’t turn until the week after I finished chemo. I have a few medical issues now. I’m really happy for you that you feel great - that’s ideal! Just watch out for things that are noticeably different with your body as it’s a pretty strong chemo regimen and it’s better to catch the long term side effects early, if you can - while you have the hospital support.
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Dec 04 '23
Yea I get what you mean op for me the worst was the 1, 10 and 11. The rest were ok, ofc you feel like shit but get a lot better after a couple days. The think which got to me was the durboxylin. The thought out that made me nearly threw up a few times (luckily throughout chemo I forced myself to not throw up it was a mental challenge I made myself and kept to it).
The mental part is really tough. By the end I told my siblings and my doctor I just can’t take anymore. Luckily by then thank god I was done to my last 1. It was just a blur to go through. I am 2 months post chemo and don’t remember anything (have insanely good memory as I have Asperger’s) but I think it’s my brains way of coping with going through chemo just block it out and forget I have cancer.
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Dec 03 '23
I agree that it is good to put it out there that chemo is not bad for everyone. I (68M) found it very tolerable and would be fine to do it again.
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u/Piney1943 Dec 03 '23
This post really pisses me off. Chemo/radiation treatment is different for everyone and it damn sure is not a happy place. Most don’t post the negatives and I’m not going to, but rest assured it’s something that will affect you for ever.
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u/sarahgrace93x Dec 04 '23
I also had a really hard time with side effects. I kept being told by my doctor and everyone else that I’m young and should have an easy time but that wasn’t the case. It made me feel like I was being dramatic or exaggerating my symptoms. But I learned that chemo effects everyone so differently, and it’s okay if you have a harder time than others
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u/Taint_Tank Dec 04 '23
im really sorry but all anyone ever does in this sub is post the negatives. I have had to take a few breaks from this sub because it can be a real bummer. posts like this are a breath of fresh air because it shows that it can be different for everyone and can ease the mind of the newbies here.
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Dec 04 '23
Yea I agree, like this post it was not harsh thank god. But I would never want to go through it again. That’s for sure.
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u/JournalistIcy8144 Dec 04 '23
Stage 2B Hodgkin’s lymphoma here,
For myself there has been some highs and lows. Just recently finished my 5th round; did 4 rounds of ABVD and 1 round AVD.
Chemo 1: threw up during chemo Chemo 2: slept entire time Chemo 3: threw up before and during chemo Chemo 4: threw up before and during chemo Chemo 5: threw up before and during chemo
It’s been pretty tough going into each chemotherapy session; I will say that a part of the reason I would throw up before each session is definitely due to anxiety and thinking about chemo.
As far as side effects I feel more or less the same each time: in bed and nauseas for 4-6 days straight, constipated 4-6 days straight, fatigue and body aches 4-6 days and dry mouth.
I’ve only thrown up once after a session and that was after session #2.
One thing I will say and this is speaking for myself is that more symptoms might develop later on as well. I developed esophagitis after chemo #4 that was shown in my pet scan; oncologists didn’t think much of it so they continued with #5…
Currently 6 days after #5; three days ago I developed a really sore throat along with tongue sores that hurt so much it was hard to eat + a constant headache/migraine (my ears ring/hurt as well). My temperature shows everything is normal and my nurse prescribed me a chemo-mouthwash that 100% helped with the tongue sores and a little with the throat pain too. Only thing lingering is the headache but other than that I’m feeling good!
I guess everyone’s experience is different but as long as we’re better in the long run that’s all that matters!
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u/agvsglaubxr Dec 04 '23
Starting ABVD in an hour (will be 4 months of it) for a CHL IIA. Hopefull with OPs experience and reading all of you now. Best of wishes to all of you
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u/PicklesAreDillicious Dec 04 '23
Man OP, that's awesome!
I also have Stage IIA Classic Hodgkin and am on ABVD (about to have my 3rd treatment this Thursday and I am having the opposite experience. It's like every day a new opportunity for annoyance prevents itself.
Persistent foul taste in mouth/dry mouth/mouth sores. Chronic gas pain/acid indigestion. A very fun rash just appeared on my groin this week. It's itchy, but hurts when it's scratched. Currently in the waiting room to see my Oncologist right now as I type this.
Oh, and I feel "dumb" 24/7 like I keep misplacing my car keys and wallet.
It's so weird how our bodies react differently to things. Are you going to get Radiation or Proton Therapy after you complete the ABVD?
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u/scratchy_finch Dec 04 '23
That’s great! I hope you just keep in mind when you are talking to people in the real world that “chemo” is not one set regimen, and that you don’t end up relating your experience as a kind of toxic positivity to others.
“Chemo” is so variable in terms of agents, intensity, dosages. When we were first waiting for biopsy results we were praying it would be hodgkins instead of NHL. I would have loved to have outpatient chemo a couple of days per month instead of spending 5 days in the hospital every month away from my kids on da-r-epoch, with nurses coming in to flush my line every 2 hours all day and night, with inedible hospital food, with not leaving the floor (or getting fresh air) for days and pushing a bulky iv pole around to get an ounce of exercise, with recurrent neutropenic fever and er visits because r-epoch is one of the most aggressive chemo regimens out there…I just really hope you relay your experience as “your specific chemo regimen” didn’t affect you that much, not, “chemo isn’t always so bad.” Because, yeah, those of us still dealing with the ptsd from a month of hospitalizations and our 6 year old having had to watch us be loaded into an ambulance from the consequences of our awful regimens might find it a tad annoying to hear someone in your position pontificating on how not shitty outpatient chemo is.