Hi,
I was recently approached by a nurse at my hospital, who asked if I'd be interested in participating in a Phase 3 clinical trial for a shingles vaccine they're developing that would be suitable for those with multiple myeloma and others with impaired immune systems who can't get the regular "live" shingles vaccine.
I'm already in a Phase 3 trial for myeloma and was not crazy about the idea of starting another, but on talking it over with my doctor and a doctor friend, I think I'm going to do it. I didn't realize that I wouldn't be able to get the regular vaccine and I really don't want to get shingles. The trial includes a placebo so there's a chance I won't get the real thing, but I'd be no worse off than I am now, and the nurse did say that eventually I would most likely be able to get the vaccine if I didn't get it during the trial.
I'll need to go in for four separate shots a month apart (and they'll have to be coordinated with my Revlimid, which is 21 days off/7 days on - they want me to get the vaccine on the "off" week), plus one more follow-up visit, plus check-ins after that for as long as five years.
Anyway, was just curious to know if anyone else was doing this or had heard of it. It would be great if this vaccine does become available (the nurse said they're getting close to sending it for FDA approval).
Forums
Re: Clinical trial for shingles vaccine
My oncologist talked about me being on the study a couple of years ago before i had my transplant. Afterwards he decided that it wasn't a good idea for me. I would have participated if he had suggested it again. Since then I did develop shingles and am now probably on Acyclovir and a steroid drop for my eye forever. I had the shingles on one side of my face and in my eye. It wasn't fun so if you can possibly avoid developing it, I would do anything to do so.
My oncologist said that about 50% of the people with multiple myeloma develop shingles at some point.
Nancy in Phila
My oncologist said that about 50% of the people with multiple myeloma develop shingles at some point.
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: Clinical trial for shingles vaccine
Yes, I did participate in a clinical study for the shingles vaccine. I had my SCT at the University of Chicago. The shingles vaccine study people always came to find me when I had my treatments or a follow-up appointment. I had the 4 vaccines, without any significant side effects. I never had an issue with shingles.
The doctor in charge of the study told me that the risk for shingles is something like 200 times higher for patients after a SCT. I needed two blood collections after my follow-ups for the transplant were complete, and the U of C technician came to see me on both occasions (about 90 miles away).
I make a five minute phone call to an automated answering system once a month (toll-free). That is the long-term follow-up. I have no regrets.
The doctor in charge of the study told me that the risk for shingles is something like 200 times higher for patients after a SCT. I needed two blood collections after my follow-ups for the transplant were complete, and the U of C technician came to see me on both occasions (about 90 miles away).
I make a five minute phone call to an automated answering system once a month (toll-free). That is the long-term follow-up. I have no regrets.
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Marcia - Name: Marcia K
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2010
- Age at diagnosis: 55
Re: Clinical trial for shingles vaccine
Hi everyone !
Is there any updated information/additional information about this shingles vaccine ?
Thanks so much.
Dana H
Is there any updated information/additional information about this shingles vaccine ?
Thanks so much.
Dana H
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Clinical trial for shingles vaccine
I had shingles a few years before my diagnosis. I think I already had multiple myeloma, or smoldering or something then.
How many times can you get it? if you already had shingles does that mean you have protection from having it again?
How many times can you get it? if you already had shingles does that mean you have protection from having it again?
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Clinical trial for shingles vaccine
I had a stem cell transplant about a month ago and will be taking part in a shingles virus vaccination study. I will either get the shingles vaccination or a placebo about 60 days post transplant. The study is being done to see if there would be any benefit to people who have just undergone a transplant. The vaccine is different than the one that most people get in that it contains a non live version of the virus.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Clinical trial for shingles vaccine
I'm very glad that I happened upon this forum subject while looking for a different topic. I was unaware of a shingles vaccine and was surprised that all post BMT [bone marrow transplant / stem cell transplant] patients were not taking acyclovir as a preventive measure. My oncologist has had me on it since the completion of my BMT. I think I am to go off of the acyclovir and antibiotic regimen at my one year BMT anniversary, which is March 11 of this year.
Re: Clinical trial for shingles vaccine
I was on acyclovir post transplant for about 1 month. At that time I developed an all over body rash and my doctor took me off of all medications in case I was having an allergic reaction to one of them. That didn't help.
I developed shingles on the left side of my scalp and face with it going into my eye more than a year after my transplant. I have been on acyclovir 800 mg 2 times per day for 3 years now as a prevention. I still have recurring problems in my left eye and use a steroid based eye drop daily to control that. My ophthamologist says that I will be on both medications for the rest of my life because shingles in the eye rarely completely resolves.
Nancy in Phila
I developed shingles on the left side of my scalp and face with it going into my eye more than a year after my transplant. I have been on acyclovir 800 mg 2 times per day for 3 years now as a prevention. I still have recurring problems in my left eye and use a steroid based eye drop daily to control that. My ophthamologist says that I will be on both medications for the rest of my life because shingles in the eye rarely completely resolves.
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: Clinical trial for shingles vaccine
I also took acylclovir for at least year after my HD chemo with auto stem cell rescue. Fortunately I did not experience any rashes or reaction to that, as Nancy did. When I started to get my childhood vaccinations again, I took the chickenpox vaccine (Varicella) which may also protect against shingles. It was taken in two jabs one month apart, two years after 'transplant', since it must be a live vaccine.
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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: Clinical trial for shingles vaccine
Hey Kent (Dallas 55),
It sounds like a similar non-live shingles vaccine study that the original poster, Karen and perhaps Marcia as well, referred to in their posts back in June, 2012.
Good luck with it, and thanks for the update!
All the best to you,
Dana H
It sounds like a similar non-live shingles vaccine study that the original poster, Karen and perhaps Marcia as well, referred to in their posts back in June, 2012.
Good luck with it, and thanks for the update!
All the best to you,
Dana H
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
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