Hello,
My partner - I posted his full story earlier here in the forum -- since April has developed several soft tissue manifestations of the multiple myeloma Some were treated by radiation and disappeared therefore. But these soft tissue manifestations became more and more. Velcade failed; he had it the third time. Revlimid he had to stop because he had a bad rash on his whole body,
Our doctors didn't know what to do except bendamustine, but it would help only a little time. They gave him only a few months, because these soft tissue manifestations show, his multiple myeloma became very aggressive.
Then we went to Würzburg in Germany and they told us about the pomalidomide [Pomalyst] CC-4047 trial. He fulfilled the inclusion criteria and got it. After five days - really only five days - the soft tissue manifestations around his left eye (was completely swollen) and at his left breast were disappeared. We and the doctors were very happy.
But - he developed a rash, especially at his legs and arms which is very itchy. Cortison salve, water with vinegar, antihistamine medications only helped for short time. He thinks he gets crazy because of the itchiness.
Now we are really afraid, he has to stop with that medicament, which can save his life because of that damned rash.
Has anybody here an idea, what we can do about it? Or is it possible, the rash disappears when he takes the pomalidomide for a longer time ? Is it only a symptom of the beginning?
We a really despaired about that, it seems it is his last chance to live a little longer.
Caro
Forums
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Pomalyst - what can we do against the rash?
My doctor told me to take Claritin and the rash/itching stopped. Before that I nearly tore my scalp to shreds, my head itched more than anywhere else.
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Tara
Re: Pomalyst - what can we do against the rash?
Hi Caro,
A recent study published in the journal Blood of pomalidomide (Pomalyst) in patients with relapsed / refractory myeloma reported that only one patient out of seventy had to stop pomalidomide because of a moderate rash.
There are many ways to manage a rash, but your oncologist / hematologist must do this. Because your partner is on a research study, it is very important that the research physician be alerted to these symptoms. The research physician will do everything they can to get the patient through the itching and to keep them on the pomalidomide, especially given the dramatic response to the drug that you described. Yes, the itching may calm down or even go away after awhile. Another outcome could be that you learn how to manage the symptoms but keep taking the pomalidomide.
Some things I have used to manage itching include an increase in steroids, topical steroids, hydroxyzine, cimetidine (Tagamet), doxepin and gabapentin. Many forms of itching can be worsened by dry skin and may improve with treatment for dry skin. Consider the use of a humidifier, maintaining a cool environment, avoiding hot baths/showers, and using only mild soaps. In addition, frequent lubrication of the skin is recommended. Topical antipruritics such as a camphor-based lotion or oatmeal baths may offer temporary relief.
Hang in there and keep talking to the study doctor regularly. We WANT to know how our patients are tolerating the study drugs. I wish your partner the best of luck with the pomalidomide. It is exciting to hear about such a dramatic response.
A recent study published in the journal Blood of pomalidomide (Pomalyst) in patients with relapsed / refractory myeloma reported that only one patient out of seventy had to stop pomalidomide because of a moderate rash.
There are many ways to manage a rash, but your oncologist / hematologist must do this. Because your partner is on a research study, it is very important that the research physician be alerted to these symptoms. The research physician will do everything they can to get the patient through the itching and to keep them on the pomalidomide, especially given the dramatic response to the drug that you described. Yes, the itching may calm down or even go away after awhile. Another outcome could be that you learn how to manage the symptoms but keep taking the pomalidomide.
Some things I have used to manage itching include an increase in steroids, topical steroids, hydroxyzine, cimetidine (Tagamet), doxepin and gabapentin. Many forms of itching can be worsened by dry skin and may improve with treatment for dry skin. Consider the use of a humidifier, maintaining a cool environment, avoiding hot baths/showers, and using only mild soaps. In addition, frequent lubrication of the skin is recommended. Topical antipruritics such as a camphor-based lotion or oatmeal baths may offer temporary relief.
Hang in there and keep talking to the study doctor regularly. We WANT to know how our patients are tolerating the study drugs. I wish your partner the best of luck with the pomalidomide. It is exciting to hear about such a dramatic response.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Pomalyst - what can we do against the rash?
I have experienced the rash from Revlimid several times. It is always on the scalp and yes it can make you crazy when it happens. I control it with Allegra and Ketocanazole Shampoo 2% prescribed by my regular doctor. The redness does not go away but the treatment seems to control the itch.
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jean
Re: Pomalyst - what can we do against the rash?
Caro,
What Dr. Libby says is very good advice. Your partner has gotten a really great response to pomalidomide (Pomalyst, Imnovid). He should do everything possible to stay on the drug, so work with his doctor and the nurses at the treatment center to find a solution to the itching / rash.
What Dr. Libby says is very good advice. Your partner has gotten a really great response to pomalidomide (Pomalyst, Imnovid). He should do everything possible to stay on the drug, so work with his doctor and the nurses at the treatment center to find a solution to the itching / rash.
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Dr. T
Re: Pomalyst - what can we do against the rash?
Thank you so much for your answers,
my partner takes now Tavegil (clemastine fumarat) [U.S. brand name - Tavist; available over the counter] and the rash became much better. We also tried the Claritin (loratidine), but it made him so tired, he could only lie in his bed.
At the end of the 1. cycle the rash became much better and he had to take only 1-2 pills of the Tavegil. Now the 2. cycle has begun and the itching came back, but only a little and he can manage it.
Today I got the labs from the 1. cycle and the results are really fantastic. IgA, kappa free light chains, beta2 microglobulin went down in only one month to a completely normal level.
Seems like a wonder.
Now happy regards from Germany
Caro
my partner takes now Tavegil (clemastine fumarat) [U.S. brand name - Tavist; available over the counter] and the rash became much better. We also tried the Claritin (loratidine), but it made him so tired, he could only lie in his bed.
At the end of the 1. cycle the rash became much better and he had to take only 1-2 pills of the Tavegil. Now the 2. cycle has begun and the itching came back, but only a little and he can manage it.
Today I got the labs from the 1. cycle and the results are really fantastic. IgA, kappa free light chains, beta2 microglobulin went down in only one month to a completely normal level.
Seems like a wonder.
Now happy regards from Germany
Caro
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Pomalyst - what can we do against the rash?
Hi all,
I am on my 17th Darzalex infusion. My doctor added Pomalyst two months ago. The first month I had to stop Pomalyst because I was having breathing trouble, but continued Darzalex. My doctor reduced Pomalyst to 2 mg from the 3 mg I was taking.
Now this month so far I had taken 13 of my Pomalyst pills and here is where the trouble started. I developed a rash on both ankles – bright red from my ankle to about 4 inches (10 cm) up my leg,
Has anyone else had a rash like this, or anyone have any ideas?
My doctor is on vaction and a back up oncologist has no idea what it is. Any ideas I would appreciate.
I hope 2017 brings us a myeloma cure and all cancer cure. Thank you all,
joe
I am on my 17th Darzalex infusion. My doctor added Pomalyst two months ago. The first month I had to stop Pomalyst because I was having breathing trouble, but continued Darzalex. My doctor reduced Pomalyst to 2 mg from the 3 mg I was taking.
Now this month so far I had taken 13 of my Pomalyst pills and here is where the trouble started. I developed a rash on both ankles – bright red from my ankle to about 4 inches (10 cm) up my leg,
Has anyone else had a rash like this, or anyone have any ideas?
My doctor is on vaction and a back up oncologist has no idea what it is. Any ideas I would appreciate.
I hope 2017 brings us a myeloma cure and all cancer cure. Thank you all,
joe
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