Hi,
My husband Paul is having an autologous stem cell transplant in mid Dececember. We have been told that he may suffer from mucositis and from our reading on the Beacon have learnt that Kepivance may be of use. If you've used it, would you recommend it, or not (and why or why not)?
Thanks in advance,
Sharyn
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Sharyn - Name: Sharyn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2009-Plasmacytoma/ 2011-Multiple Myeloma
- Age at diagnosis: 52
Re: Kepivance for mucositis during stem cell transplants?
Hi Sharyn,
I can't say anything about Kepivance, but I can tell you that I continually sucked on ice for almost 7 hours the day I received melphalan, and I had NO mucositis problems at all. Not one sore. I had my auto stem cell transplant back in June.
I wish you and your husband the best!
Scott
I can't say anything about Kepivance, but I can tell you that I continually sucked on ice for almost 7 hours the day I received melphalan, and I had NO mucositis problems at all. Not one sore. I had my auto stem cell transplant back in June.
I wish you and your husband the best!
Scott
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Kepivance for mucositis during stem cell transplants?
I had an autologous stem cell transplant in January of this year and I did suck on ice during the melphalan administration. However, I developed severe mucositis anyway. Sores in my mouth and all through my digestive system. I had to be fed by IV for weeks and weeks. It was not fun.
I am not familiar with Kepivance, but as I mentioned, ice did not work for me.
I am not familiar with Kepivance, but as I mentioned, ice did not work for me.
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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: Kepivance for mucositis during stem cell transplants?
I had a transplant in August, 2011. The drug Kepivance was not offered. I sucked on ice almost continuously for 10 hours, When I would nod off, my wife or son would wake me to keep the ice cubes coming. I had no mouth or GI tract sores, Another patient who was going through the process at the same time and used minimal ice had terrible mucositis.
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Kepivance for mucositis during stem cell transplants?
Hi Sharyn,
I would also recommend sucking on ice chips for hours. My husband and the transplant nurses kept me doing that. My stomach felt like it was frozen by the end of it, but I also did not have mouth sores, although later I did get a terrible sore throat!
It's not easy going through all of that, but at least in my case I am still well, although I cannot be sure which of the treatments helped the most (the novel agents Velcade and Revlimid. plus dex with the Velcade, OR the stem cell transplant, or some combination of all). I am grateful that I am remission now.
I don't know about Kepivance. Perhaps you could use that plus ice chips?
Wishing you and Paul all the best!
I would also recommend sucking on ice chips for hours. My husband and the transplant nurses kept me doing that. My stomach felt like it was frozen by the end of it, but I also did not have mouth sores, although later I did get a terrible sore throat!
It's not easy going through all of that, but at least in my case I am still well, although I cannot be sure which of the treatments helped the most (the novel agents Velcade and Revlimid. plus dex with the Velcade, OR the stem cell transplant, or some combination of all). I am grateful that I am remission now.
I don't know about Kepivance. Perhaps you could use that plus ice chips?
Wishing you and Paul all the best!
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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: Kepivance for mucositis during stem cell transplants?
Hi Sharyn,
I don't know about Kepivance, but I did suck on ice while the melphalan was being administered, and I didn't get any mucositis.
All the best with your husbands treatment.
Libby
I don't know about Kepivance, but I did suck on ice while the melphalan was being administered, and I didn't get any mucositis.
All the best with your husbands treatment.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Kepivance for mucositis during stem cell transplants?
Hello Sharyn,
I want to wish both you and Paul the best.
I had not heard of Kepivance before now, so unfortunately have no insight into it's use. I have however had two transplants, and both times used ice to prevent mucositis.
During the first transplant, I had no issues with musositis. However, during the second one, I had a terribly sore throat. My mouth had no issues, but within a day or two, my throat and esophagus were very painful. I sucked on ice before, during, and for a short time afterward with the second transplant. Maybe 1-2 hours. I think that if I'd eaten ice longer, I may have prevented it, but I guess there's no real way to know.
I would talk to the doctors and nurses and see how successful the Kepivance has been with other patients. If you choose to use the good old fashioned ice chewing method, I would suggest chewing on it for a few hours before and several hours after receiving the melphalan. Ask Paul to swallow as much really cold ice as possible.
I hope this helps, that he does well during his treatment, and has many, many years of good health. Don't forget to take care of yourself also. Caregiving can be stressful as well.
I want to wish both you and Paul the best.
I had not heard of Kepivance before now, so unfortunately have no insight into it's use. I have however had two transplants, and both times used ice to prevent mucositis.
During the first transplant, I had no issues with musositis. However, during the second one, I had a terribly sore throat. My mouth had no issues, but within a day or two, my throat and esophagus were very painful. I sucked on ice before, during, and for a short time afterward with the second transplant. Maybe 1-2 hours. I think that if I'd eaten ice longer, I may have prevented it, but I guess there's no real way to know.
I would talk to the doctors and nurses and see how successful the Kepivance has been with other patients. If you choose to use the good old fashioned ice chewing method, I would suggest chewing on it for a few hours before and several hours after receiving the melphalan. Ask Paul to swallow as much really cold ice as possible.
I hope this helps, that he does well during his treatment, and has many, many years of good health. Don't forget to take care of yourself also. Caregiving can be stressful as well.
Re: Kepivance for mucositis during stem cell transplants?
Dear Sharyn,
As you can gather from the other posts, ice is what is typically used, and, in most cases, substantially cuts down on the severity of the mucositis. It is not perfect, though, as George can attest to.
After FDA approval of palifermin (Kepivance), a phase 3 randomized study was done to determine the efficacy of Kepivance with high dose melphalan. A total of 281 patients were randomized to 3 arms: Kepivance before melphalan on days -6, -5, -4 and atfer melphalan on days 0, I, and 2 (pre-post) (n=115); Kepivance before melphalan on days -6, -5, -4 (pre) (n=109); or placebo (n=57).
The main outcome of the study was maximum severity of mucositis. The incidence of Grade 3 and 4 mucositis in the Kepivance pre-post arm was 38%, compared to 37% in the placebo arm. There were no significant differences between either of the Kepivance regimens and the placebo arm in the incidence of severe oral mucositis.
Based on this information, the FDA label suggests not using the drug when using high-dose melphalan as your conditioning regimen (the standard regimen used in myeloma transplants).
Hope this helps and good luck to your husband!
Pete V.
As you can gather from the other posts, ice is what is typically used, and, in most cases, substantially cuts down on the severity of the mucositis. It is not perfect, though, as George can attest to.
After FDA approval of palifermin (Kepivance), a phase 3 randomized study was done to determine the efficacy of Kepivance with high dose melphalan. A total of 281 patients were randomized to 3 arms: Kepivance before melphalan on days -6, -5, -4 and atfer melphalan on days 0, I, and 2 (pre-post) (n=115); Kepivance before melphalan on days -6, -5, -4 (pre) (n=109); or placebo (n=57).
The main outcome of the study was maximum severity of mucositis. The incidence of Grade 3 and 4 mucositis in the Kepivance pre-post arm was 38%, compared to 37% in the placebo arm. There were no significant differences between either of the Kepivance regimens and the placebo arm in the incidence of severe oral mucositis.
Based on this information, the FDA label suggests not using the drug when using high-dose melphalan as your conditioning regimen (the standard regimen used in myeloma transplants).
Hope this helps and good luck to your husband!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Kepivance for mucositis during stem cell transplants?
I did the ice thing, but unfortunately had moderate / severe mucositis. My whole tongue and throat sloughed off, and I had this gagging feeling for about three weeks (sorry, ew, lol). Well, maybe the ice helped because my palate and gums were ok.
In the hospital my transplant doc told me I would develop diarrhea based on what he was seeing in my throat, since mucositis affects the entire digestive tract. And sure enough, about a week in, I did (not fun!)
I have very sensitive skin though, so I think that might be one reason. I even had my mouth peel after my first Velcade infusion, and apparently that is very rare.
In the hospital my transplant doc told me I would develop diarrhea based on what he was seeing in my throat, since mucositis affects the entire digestive tract. And sure enough, about a week in, I did (not fun!)
I have very sensitive skin though, so I think that might be one reason. I even had my mouth peel after my first Velcade infusion, and apparently that is very rare.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Kepivance for mucositis during stem cell transplants?
Thank you everyone for your replies.
It sounds quite obvious that ice and keeping the mouth and throat very cold is the key, so that will be my job – feeding him lots of ice
Regards, Sharyn
It sounds quite obvious that ice and keeping the mouth and throat very cold is the key, so that will be my job – feeding him lots of ice
Regards, Sharyn
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Sharyn - Name: Sharyn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2009-Plasmacytoma/ 2011-Multiple Myeloma
- Age at diagnosis: 52
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