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Long term side effects of melphalan/busulfan
I am 125 days post an auto stem cell transplant. My high dose chemo regimen was busulfan and melphalan. My appetite is still very poor, food doesn't taste good, have dry mouth, and still suffer from diarrhea. I have lost about 40 lbs. Has anyone had these side effects for this long? On the plus side, my energy has improved and I am able to exercise moderately and take part in my daily activities. I am getting very frustrated with the poor appetite wondering when (if ever) it will improve. Thanks for listening!
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elizabethmwm - Name: Elizabeth M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 8/20/2012
- Age at diagnosis: 57
Re: Long term side effects of melphalan/busulfan
I had nausea for a good 4 months and wasn't able to face many foods for at least 9 months. I was extremely sensitive to sun and heat for at least 9 months until my m-spike went to 0 and my other blood values normalized. It took me a long time to recover from the insult of the chemo, but I did. Remember that the 100 days is an average. I certainly wasn't average by any stretch of the imagination.
Eat what you can, do what you can and gradually you will return to almost normal.
Nancy in Phila
Eat what you can, do what you can and gradually you will return to almost normal.
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: Long term side effects of melphalan/busulfan
I am 1 and 1/2 years post transplant and I have not recovered. I still am very fatigued, spacey, not hungry, and as I read from another who has experienced the same, "The fire has burned through and I am just a shadow of my once former self". They tell you that you should recover in 3-12 months. I believe that we don't recover, it is our brain that adapts to a New Normal.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Long term side effects of melphalan/busulfan
My transplant was on November 13,2012. I felt so crappy for so long and when I asked when I would feel normal, I was told 6 months I would feel like I did before transplant. It has been 7 months and I do feel better but my appetite is not great and I take a lot of sit down breaks during the day, I lost over 30 pounds and am very slow putting on weight, but I must say I do feel much better than I did in January, so hang in there and try to latch on to something you like to do. A friend got me reinterested in sewing and now I am making I Spy quilts for new babies,
I can sew sitting down and my brain gets to be creative. It's been a push but it is working improve my attitude.
I can sew sitting down and my brain gets to be creative. It's been a push but it is working improve my attitude.
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Maryka - Name: Mary Karnick
- Who do you know with myeloma?: Teaching associate, new friend
- When were you/they diagnosed?: 2010
- Age at diagnosis: 59
Re: Long term side effects of melphalan/busulfan
I went into my SCT with food already tasting like cardboard, not eating much other than Ensure, and having lost 45 lbs already. Velcade most likely did all this. I did not have a problem with nausea that was keeping from eating, just no hunger or appetite. My digestive track was nearly shut down from opiates so I had the opposite problem from diarrhea. I was slowly recovering from the effects of Velcade after being off it for nearly 4 months but losing weight still every week. I was maintaining a very good partial remission with my myeloma in these 4 months though. The SCT did not seem to really make any of these problems worse except for lot more fatigue. After the SCT I recovered much quicker than I ever thought I would. It seemed I was not making much progress health and stamina wise in the four months between stopping Velcade and Dex and having my SCT, yet is seemed after the SCT I started recovering rapidly, regaining my appetite and muscle mass quickly.
When I was not eating I had a lot of people suggest I should look into medical marijuana, and since I live in California it would not have been difficult to obtain. I have never been a user of recreational drugs, except maybe alcohol. That does not mean I do not believe there might be some merit in some of the claimed benefits for cancer patients. But I work as a weapon systems analyst and engineer for the Navy and my job requires a security clearance and drug testing. As long as I had a prescription for anything they found in my urine I would be fine but the feds do not recognize a California doctor’s prescription for medical marijuana. I did learn though about Dronabinol and Marinol, which are essentially synthetic THC, one of the main active ingredients in marijuana. These drugs are also FDA approved and I could get them from my Kaiser, my health care provider. I asked my doctor about them and thought it was worth trying to see if would help my appetite. I took Dronabonol for about two months but it did not seem help me much with my appetite. I also never felt a buzz or any sense I was getting high either but my girlfriend did say it seemed to make me noticeably calmer and mellow. Maybe they should prescribe this drug to counter the effects of Dex, being on both would be interesting. I also no longer felt any effects from the morphine I was taking then. I was taking both drugs while I was still working part time some and doing just fine. Others have reported though that marijuana or the FDA approved Dronabinol and Marinol did help them with appetite and nausea in particular and there was a long thread discussion on this subject a while back on the Beacon.
When I was not eating I had a lot of people suggest I should look into medical marijuana, and since I live in California it would not have been difficult to obtain. I have never been a user of recreational drugs, except maybe alcohol. That does not mean I do not believe there might be some merit in some of the claimed benefits for cancer patients. But I work as a weapon systems analyst and engineer for the Navy and my job requires a security clearance and drug testing. As long as I had a prescription for anything they found in my urine I would be fine but the feds do not recognize a California doctor’s prescription for medical marijuana. I did learn though about Dronabinol and Marinol, which are essentially synthetic THC, one of the main active ingredients in marijuana. These drugs are also FDA approved and I could get them from my Kaiser, my health care provider. I asked my doctor about them and thought it was worth trying to see if would help my appetite. I took Dronabonol for about two months but it did not seem help me much with my appetite. I also never felt a buzz or any sense I was getting high either but my girlfriend did say it seemed to make me noticeably calmer and mellow. Maybe they should prescribe this drug to counter the effects of Dex, being on both would be interesting. I also no longer felt any effects from the morphine I was taking then. I was taking both drugs while I was still working part time some and doing just fine. Others have reported though that marijuana or the FDA approved Dronabinol and Marinol did help them with appetite and nausea in particular and there was a long thread discussion on this subject a while back on the Beacon.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Long term side effects of melphalan/busulfan
Thank you for your responses. It's comforting to know that it can take much longer than "average" and there is light at the end of the tunnel. Nancy, I really related to your use of the word "insult" when referring to the chemo. That is so true! So, I'm taking one day at a time and maybe by Christmas my taste buds can enjoy some Christmas cookies!
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elizabethmwm - Name: Elizabeth M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 8/20/2012
- Age at diagnosis: 57
Re: Long term side effects of melphalan/busulfan
I hope so, for you...(about the Christmas cookies)...
Now me, I'm just finishing up the induction chemo, and headed for the SCT. I'm just hoping that someday I'll like chocolate again. How can one not WANT something, and still MISS it?
(sniff)
Now me, I'm just finishing up the induction chemo, and headed for the SCT. I'm just hoping that someday I'll like chocolate again. How can one not WANT something, and still MISS it?
(sniff)
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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