Little Chemo in Slumberland
May 23, 2005 1:15 PM Subscribe
Anyone with Hodgkin's Disease out there? Have a question about the wonders and side effects of ABVD chemotherapy.
So here's the deal. I was diagnosed with Hodgkin's (stage 4b, so far) a couple of weeks ago and my first chemo treatment is on this Wednesday (first of 12). I'm getting the ABVD treatment and was wondering if any of you have had this particular cocktail and if so, what were those first couple of treatments like?
I'm getting a port put in just before the first treatment, so that's supposed to help with some of the really bad things that can happen, but that still doesn't deal with nausea, hair falling out, etc. I talked to a soon-to-be relative last night about his chemo experiences, but he has different cancer, and thus different chemo. He did mention some bizarre side effects like food cravings. Anything weird I should be watching out for like that?
I've tried googling, but I get distracted by other Hodgkin's stuff and wind up scaring the fuck out of myself. My blog and various written journals keep me mildly sane, or at least let me freak out in public. SheisMighty and I have made a vow to not read anything else about Hodgkin's until after my first treatment, but I think AskMe is a loophole :)
And please, only ABVD or Hodgkin's chemo stories only. If you have/had a different cancert, you might have gone through a chemo run much worse than I'm about to (like my soon-to-be-cousin) and I really don't need to freak out more right now.
So here's the deal. I was diagnosed with Hodgkin's (stage 4b, so far) a couple of weeks ago and my first chemo treatment is on this Wednesday (first of 12). I'm getting the ABVD treatment and was wondering if any of you have had this particular cocktail and if so, what were those first couple of treatments like?
I'm getting a port put in just before the first treatment, so that's supposed to help with some of the really bad things that can happen, but that still doesn't deal with nausea, hair falling out, etc. I talked to a soon-to-be relative last night about his chemo experiences, but he has different cancer, and thus different chemo. He did mention some bizarre side effects like food cravings. Anything weird I should be watching out for like that?
I've tried googling, but I get distracted by other Hodgkin's stuff and wind up scaring the fuck out of myself. My blog and various written journals keep me mildly sane, or at least let me freak out in public. SheisMighty and I have made a vow to not read anything else about Hodgkin's until after my first treatment, but I think AskMe is a loophole :)
And please, only ABVD or Hodgkin's chemo stories only. If you have/had a different cancert, you might have gone through a chemo run much worse than I'm about to (like my soon-to-be-cousin) and I really don't need to freak out more right now.
A good friend of mine went through chemo for Hodgkins about four years ago. I am not sure what drugs. While he experienced the traditional side effects of nausea, weight loss and some hair loss it was not particularly debilitating for him. He was in good shape and in his late 30's. Although his hair thinned, he did not lose most of it. It did leave him exhausted but he kept working throughout the treatment, with a few days off here and there. I don't know how well that translates to what you might experience. Your oncologist is probably the best source of information. Of cancers, Hodgkins is one of the most treatable. We hope to be seeing you around here for a long time. Good luck to you.
posted by caddis at 2:02 PM on May 23, 2005
posted by caddis at 2:02 PM on May 23, 2005
I'm sorry if this is a distraction, but I had Hodgkins 1A. Radiation. Everything went well, then I had a couple things that were worse a few years later. So my stage and treatment are not really relevant, but I'd like to add that my doctor's told me I came through amazingly and in great health because I was in great shape at the time.
I can't give you advice on how to handle the chemo, except to say that as a general rule, if you can stay as physically fit as possible and eat as healthy as possible, it will help you out.
My deepest empathy on what you've gone through and what you're going to go through. Do everything you can to occupy your mind and stay positive. It makes a huge difference. As caddis said, we'll be around whenever you need us.
posted by the_savage_mind at 2:39 PM on May 23, 2005
I can't give you advice on how to handle the chemo, except to say that as a general rule, if you can stay as physically fit as possible and eat as healthy as possible, it will help you out.
My deepest empathy on what you've gone through and what you're going to go through. Do everything you can to occupy your mind and stay positive. It makes a huge difference. As caddis said, we'll be around whenever you need us.
posted by the_savage_mind at 2:39 PM on May 23, 2005
I completed treatment for Hodgkin's a little over a year ago. I too had 12 treatments of ABVD over a 6 month period, and then 4 weeks of radiation. Overall, I handled the chemo treatments pretty well. The first was the worst, but that's only because I was not taking a strong enough anti-nausea drug. Ask your doctor about Emend, as it did the trick for me. I actually gained weight during my treatment. I was able to work during the whole time, taking fridays off for treatment, and then back to work on Mondays.
Also, watch out what you're doing while you are getting your treatment. There are certain songs I have trouble listening to now because they remind me of the actual treatments.
Good luck with your treatment. There's no reason to freak out. As Larry David would say, "You have the good Hodgkin's".
posted by 3rdDegree at 2:51 PM on May 23, 2005
Also, watch out what you're doing while you are getting your treatment. There are certain songs I have trouble listening to now because they remind me of the actual treatments.
Good luck with your treatment. There's no reason to freak out. As Larry David would say, "You have the good Hodgkin's".
posted by 3rdDegree at 2:51 PM on May 23, 2005
My wife will hopefully be able to better answer this later tonight. She finished ABVD treatment for Hodgkin's about 2 1/2 years ago. 6 months of chemo plus 4 weeks of radiation. Off the top of my head (and we could really spend days talking about this stuff), avoid roast beef sandwiches on the first treatment, expect to be knocked out for a few days afterwards, with gradual improvement through the 5-7 day, and be sure to drink plenty of water.
My wife's hair started falling out after the second or third chemo session. Instead of freaking out about it, she just had it shaved off and never regretted it. She actually looked stunningly beautiful bald, a look that I couldn't quite match when I shaved my head to match.
She was in stage 2b, with a large mass crossing across the front of her neck, causing breathing difficulties. The tumor itself was noticibly shrunk after the first treatment. I am happy to say that she is completely healthy now (except for some lingering thyroid issues that are easily dealt with), and is as energetic and successful as ever.
If you would like even more detail, email me at the link on my profile page. In the meantime, I will see if my wife can post this evening.
posted by xorowo at 3:59 PM on May 23, 2005
My wife's hair started falling out after the second or third chemo session. Instead of freaking out about it, she just had it shaved off and never regretted it. She actually looked stunningly beautiful bald, a look that I couldn't quite match when I shaved my head to match.
She was in stage 2b, with a large mass crossing across the front of her neck, causing breathing difficulties. The tumor itself was noticibly shrunk after the first treatment. I am happy to say that she is completely healthy now (except for some lingering thyroid issues that are easily dealt with), and is as energetic and successful as ever.
If you would like even more detail, email me at the link on my profile page. In the meantime, I will see if my wife can post this evening.
posted by xorowo at 3:59 PM on May 23, 2005
This response is from Mrs. Irontom....
I was diagnosed w/ stage 3b/4a/4b- there was always some discussion.... in 1993 and had 9 cycles of ABVD which lasted about 9 months. I had a large tumor behind my sternum, several on my spleen and liver and many, many tiny ones throughout my lymph nodes in chest and neck. Like the post above- there was a noticeable change in my neck lymph nodes after the first treatment- i was 'cancer free' after the 6th and had the extra 3 to make sure. I did not have any real secondary symptoms (nightsweats) until after treatment started, and it only happened once or twice. I never had radiation treatment.
What I recall about the treatments is that I was hugely sensitive to odors- especially cooking scents- I could hardly stand the smell of anything cooking- we went out a lot. I also had weird cravings- everything had to have jalepeno's on it- more so towards the end of treatment as i lost some sense of taste.
I got a lot of tooth/gum pain- the only thing that seemed to help was ice cold water and milkshakes. Ben, Jerry and I got very friendly...
I did not get a lot of nausea- i was given a lot of benedryl and compazine. I would highly recommend getting the port put in- i did my first treatment intravenously and it took about 6 hours- with the port- the treatments were usually 2.5-3 hours- plus no burning in the veins.
I started to lose hair after the 2/3rd treatment, I also went the totally bald route. The one thing that did surprise me was that i lost all of my hair. everywhere- eyelashes, eyebrows, etc.... For some reason I had only mentally prepared for the loss of hair on my head.....
The main thing i recall after the first treatment, was just being tired (and the sensitivity to odors). I had my treatments on thursday, and after the 1st one was up and about normally on thursday night and friday was business as usual. As the treatments progressed it did take longer to recover and sometimes i might not feel good till the monday prior to the next treatment (I had biweekly treatments).
The main 'negatives' I went through were I did wind up with some lung damage and had to stop the vinblastine (I think) prior to finishing treatment. I had trouble going up a flight of stairs. Once I was done with treatment, that totally reversed- I even ran a 1/2 marathon. Also, my blood counts dropped and i had to go on daily shots (zophran?) to keep them up in order to continue with treatment- which I was too much of a pansy and Tom did for me. I had one bout with fou (fevers of unknown origin) and wound up hospitalized for 10 days.
Another thing that struck me was how people reacted to me, not just the bald broad thing, but while most people were amazingly supportive, some had no clue and were awfully dense. I went to a work picnic that happened to be at Kings Dominion- I was in line to ride one of several roller coasters and a co-worker thought it was a bad idea as i was 'sick'. One of the best times was when my husband and I were grocery shopping and a little boy of about 4 was just staring.... he finally asked if i was a boy or a girl, and we started this huge conversation about having to take medicine and my hair falling out.... he summed up the whole thing with his own anecdote about how he had diarrhea and took medicine, but his hair did not fall out....
All in all, it was not bad, and ten years and 2 kids later, it was certainly worth it.
I just realized i was writing a book. If you want to chat contact me via tom's email.
posted by Irontom at 6:15 PM on May 23, 2005
I was diagnosed w/ stage 3b/4a/4b- there was always some discussion.... in 1993 and had 9 cycles of ABVD which lasted about 9 months. I had a large tumor behind my sternum, several on my spleen and liver and many, many tiny ones throughout my lymph nodes in chest and neck. Like the post above- there was a noticeable change in my neck lymph nodes after the first treatment- i was 'cancer free' after the 6th and had the extra 3 to make sure. I did not have any real secondary symptoms (nightsweats) until after treatment started, and it only happened once or twice. I never had radiation treatment.
What I recall about the treatments is that I was hugely sensitive to odors- especially cooking scents- I could hardly stand the smell of anything cooking- we went out a lot. I also had weird cravings- everything had to have jalepeno's on it- more so towards the end of treatment as i lost some sense of taste.
I got a lot of tooth/gum pain- the only thing that seemed to help was ice cold water and milkshakes. Ben, Jerry and I got very friendly...
I did not get a lot of nausea- i was given a lot of benedryl and compazine. I would highly recommend getting the port put in- i did my first treatment intravenously and it took about 6 hours- with the port- the treatments were usually 2.5-3 hours- plus no burning in the veins.
I started to lose hair after the 2/3rd treatment, I also went the totally bald route. The one thing that did surprise me was that i lost all of my hair. everywhere- eyelashes, eyebrows, etc.... For some reason I had only mentally prepared for the loss of hair on my head.....
The main thing i recall after the first treatment, was just being tired (and the sensitivity to odors). I had my treatments on thursday, and after the 1st one was up and about normally on thursday night and friday was business as usual. As the treatments progressed it did take longer to recover and sometimes i might not feel good till the monday prior to the next treatment (I had biweekly treatments).
The main 'negatives' I went through were I did wind up with some lung damage and had to stop the vinblastine (I think) prior to finishing treatment. I had trouble going up a flight of stairs. Once I was done with treatment, that totally reversed- I even ran a 1/2 marathon. Also, my blood counts dropped and i had to go on daily shots (zophran?) to keep them up in order to continue with treatment- which I was too much of a pansy and Tom did for me. I had one bout with fou (fevers of unknown origin) and wound up hospitalized for 10 days.
Another thing that struck me was how people reacted to me, not just the bald broad thing, but while most people were amazingly supportive, some had no clue and were awfully dense. I went to a work picnic that happened to be at Kings Dominion- I was in line to ride one of several roller coasters and a co-worker thought it was a bad idea as i was 'sick'. One of the best times was when my husband and I were grocery shopping and a little boy of about 4 was just staring.... he finally asked if i was a boy or a girl, and we started this huge conversation about having to take medicine and my hair falling out.... he summed up the whole thing with his own anecdote about how he had diarrhea and took medicine, but his hair did not fall out....
All in all, it was not bad, and ten years and 2 kids later, it was certainly worth it.
I just realized i was writing a book. If you want to chat contact me via tom's email.
posted by Irontom at 6:15 PM on May 23, 2005
This is Mrs. Irontom again...
By he way.... Best of luck with treatment, we'll send happy thoughts your way, and as my doctor told me, if you have to have cancer, this is the one to have.....
posted by Irontom at 6:22 PM on May 23, 2005
By he way.... Best of luck with treatment, we'll send happy thoughts your way, and as my doctor told me, if you have to have cancer, this is the one to have.....
posted by Irontom at 6:22 PM on May 23, 2005
Howdy fellow Hodgkin..ite...I guess....
Anyway, last year, after the shit growing in my neck became the size of a baseball, I had it bioposied and it came back positive for Hodgkin's, stage 3a. I, too, got 12 hits of ABVD, and, I gotta be honest with you, it was hell. From what I understand, it hit me pretty hard, so I can't say you'll have the same experience, but... I basically had what felt like a terrible case of the flu for 6 months. I went through about 6 different anti-nausea drugs and none of them really did the trick. Compazine tended to work the best, though when the drug wore off it sure seemed like the nausea was even worse than before. I heard a lot of people say Zofran is a miracle drug, but I just didn't do a damn thing for me. It's great that you're getting a port put it. Really, it won't shorten your chemo visits or lessen the side effects, but you'll avoid the poking and proding when they try to find a vein. Even if you have huge veins now, after a few visits they'll be so beaten and worn that they just won't be able to take it anymore. I went for about 4 sessions before I got my port and by the end my vein in my left arm was almost the texture of plastic. So yea, yay for ports. The actual chemo session itself took around 3 hours, and, for the first 6 sessions or so, I was perfectly fine. After two weeks I was getting to the point where I could function somewhat well, so going into the doctors wasn't a hassle, and the drugs didn't really hit me until a couple hours later. After that, though, they started to get worse, not because of the drugs though, but because of what I associated the doctors office with. The taste of my port being washed out with saline (you'll see....you can start to taste whatever they inject in your port. I'm not sure of the scientific explanation, but it's an almost universal experience), the smell of alcohol swabs, the sterile smell of a the office, the taste of their disgusting flouridated water ...it was a lethal combination and I started to became sick before they even gave me the drugs. But the nurses did come up with an ingenious solution: Ativan. It's a sedative and anti-anxiety drug that also does wonders for immediate post chemo nausea. My last few sessions I was passed out in happy drug land, and it made all the difference in the world. If you having any trouble making it through the chemo sessions, don't hesitate for a second to ask for something to deal with the anxiety. You don't need to suffer anymore than is absoluetly necessary. What else.... If you haven't had a bone marrow biopsy yet, and they order one for you, for god's sake, TAKE THE GENERAL ANESTHETIC. I made the mistake of thinking I only needed a local, and my god the pain. My hair did fall out nearly completely, which I think is fairly common for people with 6 cycles of ABVD. Be aware that chemo tends to bring out some of your recessive genes, so be prepared for something completely different from your current hair to grow back next year (most people can't even recognize me anymore my hair came back in so different). I only lost about 5 pounds and quickly gained it back before I even finished. One last thing, and please don't disregard it (I did and I'm still dealing with the choice today)...Vincristine (the V in ABVD) will make your more constipated that you can possibly imagine. Pay attention to your bowel movements. Take a laxative when needed (though never for more than a couple days in a row, you can get addicated). Stay super hydrated (drink double the water a normal person should...It's much better to pee too much than poop not enough), start taking a fiber sublement, stay away from greasy foods (though the chemo will probably make them seem disgusting for you anyways, so easy enough).
I'm sorry if this all doesn't sound that reassuring, but, as a reality check, Hodgkin's is considered one of the most curable cancers out there, and most who do succumb to it are already very, very old and weak. Except for a pretty nasty case of IBS (which is a direct result of not paying enough attention to my poop...don't make my mistake!), I'm as healthy as any other 21 year old. The chances of your being in remission this time next year are great. But that doesn't mean that it's gonna be a fun year for you. And don't let people tell you that you're lucky, or that hodgkin's is a good cancer, etc. etc. They have a point, but GOD does that talk start to become so fucking annoying when you're shiting bricks, vomitting your lunch and having your hair come out in clumps (Though I'll admit to laughing hysterically at Larry David when he said that...and I believe I was on my 4th shitless day and hadn't been able to eat for a day). You're going to join the elite club of people who've gone through chemo, and don't let people minimize the psychological strength that takes. If you have any more questions, feel free to email me, Asteinhebel@gmail.com, I'm more than willing to talk about it, and it always helps to talk to those who've been through it. Also, checkout the mailing list at hodgkinsdisease.org. The archives were a god send for me. Good luck!
posted by MostHolyPorcine at 6:39 PM on May 23, 2005
Anyway, last year, after the shit growing in my neck became the size of a baseball, I had it bioposied and it came back positive for Hodgkin's, stage 3a. I, too, got 12 hits of ABVD, and, I gotta be honest with you, it was hell. From what I understand, it hit me pretty hard, so I can't say you'll have the same experience, but... I basically had what felt like a terrible case of the flu for 6 months. I went through about 6 different anti-nausea drugs and none of them really did the trick. Compazine tended to work the best, though when the drug wore off it sure seemed like the nausea was even worse than before. I heard a lot of people say Zofran is a miracle drug, but I just didn't do a damn thing for me. It's great that you're getting a port put it. Really, it won't shorten your chemo visits or lessen the side effects, but you'll avoid the poking and proding when they try to find a vein. Even if you have huge veins now, after a few visits they'll be so beaten and worn that they just won't be able to take it anymore. I went for about 4 sessions before I got my port and by the end my vein in my left arm was almost the texture of plastic. So yea, yay for ports. The actual chemo session itself took around 3 hours, and, for the first 6 sessions or so, I was perfectly fine. After two weeks I was getting to the point where I could function somewhat well, so going into the doctors wasn't a hassle, and the drugs didn't really hit me until a couple hours later. After that, though, they started to get worse, not because of the drugs though, but because of what I associated the doctors office with. The taste of my port being washed out with saline (you'll see....you can start to taste whatever they inject in your port. I'm not sure of the scientific explanation, but it's an almost universal experience), the smell of alcohol swabs, the sterile smell of a the office, the taste of their disgusting flouridated water ...it was a lethal combination and I started to became sick before they even gave me the drugs. But the nurses did come up with an ingenious solution: Ativan. It's a sedative and anti-anxiety drug that also does wonders for immediate post chemo nausea. My last few sessions I was passed out in happy drug land, and it made all the difference in the world. If you having any trouble making it through the chemo sessions, don't hesitate for a second to ask for something to deal with the anxiety. You don't need to suffer anymore than is absoluetly necessary. What else.... If you haven't had a bone marrow biopsy yet, and they order one for you, for god's sake, TAKE THE GENERAL ANESTHETIC. I made the mistake of thinking I only needed a local, and my god the pain. My hair did fall out nearly completely, which I think is fairly common for people with 6 cycles of ABVD. Be aware that chemo tends to bring out some of your recessive genes, so be prepared for something completely different from your current hair to grow back next year (most people can't even recognize me anymore my hair came back in so different). I only lost about 5 pounds and quickly gained it back before I even finished. One last thing, and please don't disregard it (I did and I'm still dealing with the choice today)...Vincristine (the V in ABVD) will make your more constipated that you can possibly imagine. Pay attention to your bowel movements. Take a laxative when needed (though never for more than a couple days in a row, you can get addicated). Stay super hydrated (drink double the water a normal person should...It's much better to pee too much than poop not enough), start taking a fiber sublement, stay away from greasy foods (though the chemo will probably make them seem disgusting for you anyways, so easy enough).
I'm sorry if this all doesn't sound that reassuring, but, as a reality check, Hodgkin's is considered one of the most curable cancers out there, and most who do succumb to it are already very, very old and weak. Except for a pretty nasty case of IBS (which is a direct result of not paying enough attention to my poop...don't make my mistake!), I'm as healthy as any other 21 year old. The chances of your being in remission this time next year are great. But that doesn't mean that it's gonna be a fun year for you. And don't let people tell you that you're lucky, or that hodgkin's is a good cancer, etc. etc. They have a point, but GOD does that talk start to become so fucking annoying when you're shiting bricks, vomitting your lunch and having your hair come out in clumps (Though I'll admit to laughing hysterically at Larry David when he said that...and I believe I was on my 4th shitless day and hadn't been able to eat for a day). You're going to join the elite club of people who've gone through chemo, and don't let people minimize the psychological strength that takes. If you have any more questions, feel free to email me, Asteinhebel@gmail.com, I'm more than willing to talk about it, and it always helps to talk to those who've been through it. Also, checkout the mailing list at hodgkinsdisease.org. The archives were a god send for me. Good luck!
posted by MostHolyPorcine at 6:39 PM on May 23, 2005
I'd just add, that please use your doctor as much as possible as a resource for side effects that you're having. The typical things - nausea, hairloss - you'll certainly be asked about. But other side effects - shortness of breath, asthma-like symptoms, sleep disruption and nightmares, tingling or numbness in fingers and toes, trouble walking (especially a "draggy foot" that catches on the ground), etc. - should also all be reported to your doctor. In some cases they may indicate the need for a dosage adjustment.
posted by ikkyu2 at 9:44 AM on May 24, 2005
posted by ikkyu2 at 9:44 AM on May 24, 2005
Response by poster: Thanks for all the help, good tips, personal stories and support, Mefiers. Tomorrow's the big first treatment, so we'll see what happens to me. I'll post afterwards (once I can make it back over to the computer) to add my post-chemo side effects for future browsers.
Thanks again!
posted by Moondoggie at 12:25 PM on May 24, 2005
Thanks again!
posted by Moondoggie at 12:25 PM on May 24, 2005
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posted by Moondoggie at 1:17 PM on May 23, 2005