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just started ABVD

Posts: 1
Joined: Nov 2003

Im 23 and was just diagnosed with stage 2A HD and just had my second ABVD treatment on Friday. I was supposed to have it on Tuesday but my WBC count was too low. On Friday it was better but still not high enough so I only got 80% of my dose and then a shot of something on Saturday to help bring my count up. Is this normal?? Also, I haven't really felt too bad after either treatment, with the exception that my legs are so achey, it hurts to walk, stand and lie down. Does it get worse or am I just going to be a lucky one without horrible side effects?? And one last thing, my doctor said that my hair would fall out pretty quick after my first treatment and I was just expecting to wake up one morning and have it be gone, but so far nothing has happened. I guess I just thought it would be so horrible and it hasn't been so far and Im just afraid either it'd because its not working or its just going to get a lot worse. I geuss Im just wondering what to expect and if what Im going through is normal.. I just feel very scared that what Im going through isnt normal..

dpomroy's picture
Posts: 136
Joined: Dec 2000

It's a whole lot to deal with huh? First of all, from what I hear it is very rare to fly through all of your treatments without any setbacks here and there. You would have to be super woman or something. It's just important for you to keep making that forward progress, even if it is not as fast as you would like. Second, how badly you are hit with side effects or not isn't an indicator of whether the chemo is working or not. I know people who breezed through it, and others who had a horrible time. The main thing though is to keep your doc informed at all times of whatever your side effects are. Some of the side effects are easily treated. Third, there is no "normal" as far as side effects and your unique body goes. Everyone reacts differently to the chemicals. I had a friend who never lost her hair. It thinned out quite a bit, but she didn't have to wear wigs and hats. I also had a friend who lost all their hair 14 days after his first treatment. I was somewhere in between. It started to thin out, but I got almost a month of bonus hair days before it got so thin that I needed to cover my head. I had my husband shave what was left into a "GI Jane" so that it was less to fall out. I always kept a little fuzz on my head. Maybe you will be one of the lucky ones to keep your hair. I know right now what you would love to hear would be exactly what will happen to you and when you will start to feel better again. All I know is that in less than a year from now, you will be able to look back on all of this. What are you going to do to celebrate? Start planning that party or trip now to give you something to really look forward to. Best of luck!

Posts: 47
Joined: Jul 2003

Dear Shelby,

Try to relax and take one day at a time! I think the achey legs might be from the shot to boost your bone marrow, and not the chemo. I think you'll find just about everyone gets negative side effects from chemo, I would guess there are relatively few with "horrible" side effects. My first chemo run through was with Stanford V, not ABVD, and I really didn't lose much hair.

The amount of side effects and how well chemo works are too different things. Someone can breeze through chemo and be cured, another could be bedridden and not be helped.

It's normal to be scared. There are many "bad" things that might happen. But dwelling on the "what if's" isn't going to make this process any easier.

Cancer treatment is a marathon. You'll have good and bad days. Enjoy the good ones, get through the bad ones. This too shall pass.

Posts: 41
Joined: Oct 2002

I'm also 23 and I completed 6 cycles of ABVD almost a year ago. My side effects weren't to bad, with the exception of losing MOST of my hair. They gave me drugs to counteract the nausua and I was so tired before my diagnose that if the chemo made it worse-I didn't notice. My hair fell out over a period of time, I cut it really short before hand so that it wasn't so tramatic, though I cried almost every morning when I'd have to clear the shower drain.
I remember that after my first injection of chemo my white count dropped and I had to post-pone the 2nd half a couple of days until the medicine they gave me had time to help. After that I began giving myself shots of neopogen to prevent it from happening again.
My advice to anyone undergoing chemo interveinously is to get a port, I didn't (big mistake). At the end of my treatment my veins in my arms became so sore that I couldn't sleep at night.
Good Luck to you, if you have any questions or need someone to talk with feel free to email me at this site

stargazer's picture
Posts: 3
Joined: Nov 2003

hi.i'm 22 and also have HD stage 2B. I am half way through my ABVD treatments. my hair started to fall out after the second treatment. First it was just a little at a time and then it came out in big clumps. If you have long hair, i suggest that you cut it short. It will be less shocking when it all starts to come out in your hands. I used to wake up in the middle of the night and have to clean off my pillow from all of the hair i was sucking in. As for all of the side effects, there are alot of anti nausea meds out there now, one of which they will probably give you with your chemo. So, when you don't throw up don't ask why, just be thankful. Is the shot that they gave you called NEULASTA? for your white count? when i got that my doctor told me i was going o feel like i got hit by a bus...he wasn't kidding. it stimulates your bone marrow causing your bones to ache. as for being scared, don't be. i'm sure your doctors have told you that if there was any cancer to be happy about getting, this is it. its curable and we will get on with our lives. it takes what seems like forever, our hair falls out, and things might even seem hopeless, but in all reality, its not. let me know how you're doing! I could use the friendship right now.

Posts: 6
Joined: May 2003

Hi Shelby,
I'm 24 and just finished 12 ABVD treatments three weeks ago. I also received a partial dose on my second treatment due to my low blood counts. This is completely normal. For all the rest of my treatments I was on Neupogen to keep my WBC high enough for treatment. I was never delayed for a treatment again. My side effects were minimal. Towards the end of treatment, I was a little more tired and achy. The 2-3 days after treatment were the worst, but then I'd bounce back. My hair was another issue. My doctor told me it would probably fall out after the second treatment so I was waiting. However, it never did fall completely out. It never came out in clumps, it was a gradual process. After 6 treatments I shaved it off because I was going back to work (I'm a teacher and was off in the summer) and didn't want the children to see me without hair. After I shaved it I wore my wig. The irony is that it started growing back. Now three weeks after treatment and I have a full head of hair. Of course I now wish I hadn't shaved it off, but oh well. After my first treatment my doc called to see how I was doing and I told him I was worried it wasn't working because I felt so well. He told my that just because I felt well didn't mean the chemo wasn't working so don't think that. What you are feeling is completely normal. There are so many emotions that come with this. Let me know if you want to talk or if you have any questions. Keep thinking positive and it will be over before you know it.
Ilaina :)

Posts: 3
Joined: Nov 2003

All effects you diescribed are common. I lost my hairs not so fast and not completely after 9nd treatment (I got them every two weeks). They are just very, very thin. Don't be suprised if they will change colour then when they'll grow again - it happens sometimes. I also started vomiting but only during treatment not before but at 6-9 dose. I've heard about aching legs - it's very common symptom. Also being asleep and tired two-three days after. It's common. I was given Neupogen iniection week after treatment if my WBC were too low, so it's common too (it is not good to postpone next dose but WBC can't be too low - Neupogen made them grow).
And at last - you are lucky man to have 2A. This A is very important. I had many symptoms (2B) - night sweats, slight temperature, problems with skin... Your A gives you very good chances.

Witek, 29, Poland, Cracovia

Graeson5682's picture
Posts: 4
Joined: Dec 2003

Dear Shelby,
I'm 32 and just finished ABVD chemo for stage 2A HD. Everyone is different, so don't worry about being "normal". Maybe you are one of the lucky ones that will not have too hard of a time. Who knows? If you are, thank God. I'm no doctor, but I'm pretty sure that bad side effects don't necessarily mean that the chemo is working or not.
During my treatment, my own doctor joked that I was part of Murphy's Law. Every bad reaction a person could have, I had it. I had a really difficult time, including blood clots in my lungs, allergies to medications, and lung toxicity because of the Bleomycin that put me in the hospital. They gave me steroids to heal my lungs, but that came with a whole other list of side effects. UGH!
I was worried that I wasn't "normal" because everything seemed to be going wrong. I worried that the chemo wasn't working because my body seemed to reject everything. But I got through it and my scans are clear now. My doctor & all the nurses assured me that you never know how a person is going to react to these chemicals.
Hang in there. For now, just take advantage of every good day you have. I hope it goes well for you.
: ) Kate

Posts: 6
Joined: Aug 2001

HI! You are doing great! I'm a 20 year survivor of HD. When I had ABVD as part of my treatments, they didn't use all the great drugs they use now to help with side effects. I also had a series of treatments they called CMOPP, not sure if they use that anymore. Even back then though, I had to skip many treatments because of my white count, but they didn't give shots to help with that, so be thankful they can do that now, wow! I also had to have what they called a staging operation, at that time that was the only way for them to find out if the HD had passed below the diaphram. They took the spleen out and sliced it to look for the cancer, took a biopsy of the other organs (while they had you open from breast bone to pelvic bone) I don't think they do that anymore either. Yea!!! Anyway, I did loose my hair, thinning at first, then by clumps, it is scary when it starts and it is an emotional thing some of us have to go through. I also had weakness in my feet, legs, arms and hands. Have they ask you to walk on your heals? I was so surprised when they would ask me to do this and then at one visit I couldn't, that really scared me. Months after the treatments I was able to do this "simple" task again and boy was I excited! This is going to sound funny, but I can still remember the 1st time I had to shave my legs after chemo. (still don't have to do underarms, the radiation killed that) Little goals like this will become exciting days for you in the future, so for now, try to relax, rest, meditate, read and pray often! You are a SURVIVOR now and one day you will be sharing with someone who is just starting the process, you will smile and think, I made it and now I want to help this person make it!!! Enjoy the good days and put up with the bad. You are NEVER alone!!! Keep in touch.
Your friend,
Olivia webbpork@ncn.net

Posts: 15
Joined: Apr 2003

I was diagnosed with stage 3B and went thru 6 rounds of ABVD. I never lost all my hair but after 3 treatments it became very thin. And remember it does come back! (Mine came back very thick and soft.) I also received Neulasta shots for my low WBC and experienced the aching back, legs and hips. It seemed like every chemo treatment I would experience different side effects. Hang in there and take one day at a time.

Posts: 18
Joined: Jul 2003

I was in stage three. I've been in remission since March '95. Everything you said is normal. Everything you said is different for everybody. I didn't loose all my hair, though it went from real long and thick to short and thin. My fingernails and toenails hurt, the two big toenails came off. My oncologist said after I was finished that she almost didn't give me the last two treatments because my white blood cell count was so low, but I was so close to being done she decided to give them to me anyway. Afterwards I had to get a shot of something evey day to bring it all back up. I don't remember what it was.
One thing to remember is that whenever a food you like starts to taste bad give it up until you finish chemo. My oncologist told me that some people keep trying to eat them enyway and end up not liking them later. With me it was mainly apples and anything made from them. Much as I love anything with apples I gave them up, wasn't difficult because it all tasted so bad. Now it's fine.

Posts: 1
Joined: Jan 2004

Hi Shelby,
I finished my chemo treatments the day after Thanksgiving. I am 38 and was stage 3A.I was able to work during my treatment and never lost my hair. I also felt the treatments were going to be so terrible, but the were not bad at all.I was on abvd for 6 cycles. It is so scarey at first to hear the C word, but you will find that you will be a different person after going through this and will have strength you never could imagine.Amy

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