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Re: Stem cell transplant - hair loss + nausea questions
goldmine I didn't, but wish I had. It turns out to be pretty messy overall with hair everywhere for a couple of days. If i ever have another treatment i wont's hesitate.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Stem cell transplant - hair loss + nausea questions
My own SCT was in October...I had to deal with nausea in the hospital, but I was given zofran, compazine and ativan to combat it. I did lose what was left of my hair from the cytoxin, so I had the folks at City of Hope give me their patented buzz cut before I was admitted for the transplant, Because of this, I don't know if the melphalan would have finished it off or not. 
I had a bout of C-diff while in the hospital, and that will mess you up pretty good in the nausea department; shoot, I didn't eat anything for a solid week, and stuck with plain mashed potatoes and watered down lemonaide for the rest of the time. The nausea was constant, but low-grade.
Then, about, oh, twelve weeks post transplant something in my body went 'hello!' It was like a switch was turned, it was that instantaneous: (and just before Christmas cookie season, too) I could suddenly taste things, the nausea went away, my appetite came roaring back and my hair began growing. It's grown not quite half an inch in about three weeks. Yahoo! CHOCOLATE!
COOKIES!
Life is good. "Course, I have to see my oncologist today and he's going to put me on, I think, Revlimid/dex for maintenance (I have the p17 deletion), so I don't know what sort of digestive side effects are going to start with that, but for right now?
Woohoo!
I had a bout of C-diff while in the hospital, and that will mess you up pretty good in the nausea department; shoot, I didn't eat anything for a solid week, and stuck with plain mashed potatoes and watered down lemonaide for the rest of the time. The nausea was constant, but low-grade.
Then, about, oh, twelve weeks post transplant something in my body went 'hello!' It was like a switch was turned, it was that instantaneous: (and just before Christmas cookie season, too) I could suddenly taste things, the nausea went away, my appetite came roaring back and my hair began growing. It's grown not quite half an inch in about three weeks. Yahoo! CHOCOLATE!
COOKIES!
Life is good. "Course, I have to see my oncologist today and he's going to put me on, I think, Revlimid/dex for maintenance (I have the p17 deletion), so I don't know what sort of digestive side effects are going to start with that, but for right now?
Woohoo!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Stem cell transplant - hair loss + nausea questions
I began losing my hair about 10 days after the Cytoxan infusion and had it shaved off. Since I knew that it was going to happen and about when, I had scarves and hats ready to wear when it did come off. I had my transplant in January so knew that I would want something to keep my head warm. If it had been in the summer, i probably would have gone without any head covering since being bald didn't bother me.
I had significant nausea in the hospital and for about 6 weeks after I got home. None of the medications they gave me seemed to help. The only things that I tolerated while in the hospital were water, tea, plain yogurt and chicken broth. Once I was home I gradually was able to add other foods, but nothing with strong tastes or smells. Even now 4 years later there are a few foods that I can't tolerate the thought of. I lost quite a bit of weight because nothing stayed down, but unfortunately I gained it all back and then some within the following year.
Don't worry about your hair. It grows back and you save money on haircuts for several months. I hope that you don't experience the level of nausea that I did. Many people have minimal problems.
Nancy in Phila
I had significant nausea in the hospital and for about 6 weeks after I got home. None of the medications they gave me seemed to help. The only things that I tolerated while in the hospital were water, tea, plain yogurt and chicken broth. Once I was home I gradually was able to add other foods, but nothing with strong tastes or smells. Even now 4 years later there are a few foods that I can't tolerate the thought of. I lost quite a bit of weight because nothing stayed down, but unfortunately I gained it all back and then some within the following year.
Don't worry about your hair. It grows back and you save money on haircuts for several months. I hope that you don't experience the level of nausea that I did. Many people have minimal problems.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Stem cell transplant - hair loss + nausea questions
You are the second person to mention Cytoxan [cyclophosphamide]. I don't think that is part of my regimen. What is it used for? As I mentioned above, I am not concerned about the hair loss, just trying to time the shave.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Stem cell transplant - hair loss + nausea questions
In my case I was not eating and had already lost about 45 lbs before my stem cell transplant. I had started losing my appetite about 4 months before my SCT and food was starting to lose all taste. This was not from nausea but from nerve damage from Velcade. I simply had no appetite and could go for days without feeling any hunger and only felt nausea if I tried to force myself to eat. The first time I felt nausea and threw up was they administered the Cytoxan chemo for stem cell harvesting just a few weeks before my SCT. I had nausea when I was in City of Hope for my SCT but only threw up a few times from it. Because I was not eating much they were feeding me through IV. The menu looked pretty good, it was too bad I was not able to eat much of the food. I used a combination of Zofran, Compazine and Ativan to combat the nausea. The nurses offered these three choices and I was free to choose which one I wanted or seemed to work the best for me. These drugs, and in particular Compazine, also helped with the Morphine and Dilaudid withdraw symptoms I was experiencing. I was taking these opiates to help with neuropathy pain but no longer needed them after the Velcade was stopped 4 months earlier. After about two weeks the nausea subsided and my appetite started returning after being of Velcade for 4 months and I was able to be discharged.
On the subject of hair loss, I started losing some when the Cytoxan was administered during the stem cell harvesting period. I got a real short haircut before going in for the SCT and during the SCT my hair started falling out completely. I had City of Hope shave it all off completely to try and keep things clean. I lost not only the hair on my head but nearly all my body hair as well, except my eyebrows, they are pretty thick. I found that I did not need to shave for about three months afterward and I have a thick beard. Eventually as others have said the hair grew back and darker and thicker than before initially. Two years later my hair seems to be exactly the same as it was before.
Velcade side effects hit me harder than most but it worked really well on my myeloma. I would not let my experience with it scare anyone away from trying it. I am sure if I had not been taking it or Revlimid I would be dead already.
On the subject of hair loss, I started losing some when the Cytoxan was administered during the stem cell harvesting period. I got a real short haircut before going in for the SCT and during the SCT my hair started falling out completely. I had City of Hope shave it all off completely to try and keep things clean. I lost not only the hair on my head but nearly all my body hair as well, except my eyebrows, they are pretty thick. I found that I did not need to shave for about three months afterward and I have a thick beard. Eventually as others have said the hair grew back and darker and thicker than before initially. Two years later my hair seems to be exactly the same as it was before.
Velcade side effects hit me harder than most but it worked really well on my myeloma. I would not let my experience with it scare anyone away from trying it. I am sure if I had not been taking it or Revlimid I would be dead already.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Stem cell transplant - hair loss + nausea questions
So, reading this prompts a few questions for me. First, why the Ativan for the nausea? I ask because my husband has had serious problems with any of the benzodiazapines in the past. Secondly, I am confused about the high dose chemo during the harvest/transplant process. So, you receive chemo during the harvest and then before the transplant? I have been trying to clear this confusion up in my head for months now! Thanks for the help.
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guest
Re: Stem cell transplant - hair loss + nausea questions
The anti-nauseant that I was given about an hour before chemotherapy, by infusion, was Kytril (granisetron). It is a 5-HT3 receptor antagonist (I do not know what that means actually!). One had to also take a laxative such as Senekot, since the Kytril slowed one's digestive system down a lot.
Also did receive two sessions of high dose chemotherapy. The cyclophosphamide was given before the stem cell harvest. Even though i had induction therapy with Velcade/dex, the cytoxan was also given to further destroy any cancer cells. I lost my hair at this point. Then, the day before the rein fusion of my stem cells (auto transplant), I was given Malphalan, a very high dose chemo drug, which wiped out my bone marrow. I had to sign a waiver stating that I would accept the rein fusion of my stem cells, for the malphalan without the 'salvage' would leave me with no circulating blood cells eventually. So in effect , one does have two doses of HD (high dose) chemo, but with two different drugs.
Hope that helps. There are probably different variations on this theme also, as in other areas of treating myeloma.
Also did receive two sessions of high dose chemotherapy. The cyclophosphamide was given before the stem cell harvest. Even though i had induction therapy with Velcade/dex, the cytoxan was also given to further destroy any cancer cells. I lost my hair at this point. Then, the day before the rein fusion of my stem cells (auto transplant), I was given Malphalan, a very high dose chemo drug, which wiped out my bone marrow. I had to sign a waiver stating that I would accept the rein fusion of my stem cells, for the malphalan without the 'salvage' would leave me with no circulating blood cells eventually. So in effect , one does have two doses of HD (high dose) chemo, but with two different drugs.
Hope that helps. There are probably different variations on this theme also, as in other areas of treating myeloma.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Stem cell transplant - hair loss + nausea questions
Actually, I don't think cyclophosphamide is given before stem cell harvesting primarily to treat myeloma, although that is one of the beneficial effects of using it.
Instead, I think it's given primarily to help mobilize stem cells for harvesting.
See this information for more on the subject (sorry for the long URL):
http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1104449342194.html
Key part:
"Chemotherapy (cytoxan or cyclophosphamide) is given to make your bone marrow more ready to move stem cells into the blood. It will also treat your cancer. About 10 - 12 days after cytoxan is given, your white blood cell count will be very low. The goal is that your body will move stem cells into your blood as your white cell count recovers."
Instead, I think it's given primarily to help mobilize stem cells for harvesting.
See this information for more on the subject (sorry for the long URL):
http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1104449342194.html
Key part:
"Chemotherapy (cytoxan or cyclophosphamide) is given to make your bone marrow more ready to move stem cells into the blood. It will also treat your cancer. About 10 - 12 days after cytoxan is given, your white blood cell count will be very low. The goal is that your body will move stem cells into your blood as your white cell count recovers."
Re: Stem cell transplant - hair loss + nausea questions
Thanks Cheryl, that is interesting! Somehow I thought that the cytoxan was just yet more chemo, which seemed quite a lot already after going through 'induction' chemo. But the explanation makes sense.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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