tag:blogger.com,1999:blog-7107951278396437262.post4898884529861562032..comments2024-02-08T05:22:14.082-06:00Comments on Myeloma Hope: Life is GreatDonhttp://www.blogger.com/profile/03923592545983795350noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-7107951278396437262.post-76118346163421689192011-09-11T10:38:30.906-05:002011-09-11T10:38:30.906-05:00Caro,
I do not recall hearing of a rash with poma...Caro,<br /><br />I do not recall hearing of a rash with pomalidomide, but I do have a story which may be related. <br /><br />Some years ago I was given thalidomide as a single agent, to see if it would hold back the myeloma. After a couple of weeks I got a horrible, itchy rash, especially on my arms. It was worst on skin that was exposed to the sun. <br /><br />Doc said "thalidomide doesn't cause a rash," but I learned later that it can, and I'm absolutely certain that it was the cause. Pomalidomide is a descendent of thalidomide, of course.<br /><br />I stopped the thalidomide because of neuropathy, and after several weeks the rash went away. Later we tried the thalidomide again, as a single agent again, and the rash reappeared but only a little, as if my body had become accustomed to it.<br /><br />Suggestions: (1) Avoid direct sunlight on the affected skin; (2) Use as little steroid cream as possible - it gave relief, but permanently damaged my skin. Perhaps the salve you are using is not as bad; (3) Call the IMF hot line for more information, 01.818.487.7455, or go to http://myeloma.org and start up a chat.<br /><br />DonDonhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-47277045678847021682011-09-11T09:57:53.804-05:002011-09-11T09:57:53.804-05:00Dear Don,
it seems to me, you have the most expe...Dear Don, <br /><br />it seems to me, you have the most experience in taking pomalidomide in the CC-4047 trial in Germany.<br />My husband takes it since nearly two weeks and most of his soft tissue manifestations of the MM disappeard within 5 days. We were very happy, also our doctors.<br />But now he has serious problems with rash. The itchiness drives him nearly crazy. Cortisond salve and antihistamines help only for a short time, so we are afraid, he has to stop with the Poma, which could save his life.<br />Do you have experience in Poma caused rash and what to do about ?<br /><br />I would be very thankful for any tip about that. The doctors in Germany do not have much experience with the Poma, it is too new here.<br /><br />Kind regards from Germany<br /><br />CaroCarohttps://www.blogger.com/profile/18228475763581256651noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-79681256042625722132011-07-18T10:12:44.661-05:002011-07-18T10:12:44.661-05:00Hello Liz,
I submitted an email address to ihadca...Hello Liz,<br /><br />I submitted an email address to ihadcancer.com, but wasn't able to do anything else except submit more (other people's) email addresses. I'll be more interested when it becomes an interactive site.Donhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-56423999556049330082011-07-18T09:50:57.959-05:002011-07-18T09:50:57.959-05:00Hi Don,
My name is Liz and I have been following ...Hi Don, <br />My name is Liz and I have been following your blog for a few months now. I am happy to see that you are doing well, eating healthy and still running. It is great to see that you are still giving out recipes and food ideas, some of them I have even followed. <br />That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey. <br /><br />Either way, thank you so much for your writing. Take care and best regards.<br />-Liz@ihadcancer.com <br />If anyone would like info about I Had Cancer please email me.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-52511147900265580002011-07-11T14:58:47.295-05:002011-07-11T14:58:47.295-05:00Hi - I have read all of your blogs and absolutely ...Hi - I have read all of your blogs and absolutely love them. I just found out I have MGUS and I will be checked every 3 months. I am just turning 60, am very overweight, and am starting to exercise and improve my food choices. I love your appreciation of life and I am learning so much about healthy foods from your pictures - Hope you don't mind that I will be copying many of your beautiful displays of healthy foods. You are amazing and a wonderful example for us all. You are my new role model! Sherrillbluemom51https://www.blogger.com/profile/12605469528074965035noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-13377380049292707742011-07-06T06:35:02.699-05:002011-07-06T06:35:02.699-05:00Good to hear this wonder drug is working so well!
...Good to hear this wonder drug is working so well!<br />I noticed L-Arginine is one of your new supplements. I used to take 2000mg of this a day and developed shingles. I did some research and saw links to L-Arginine and shingles. Clearly you are well under this dose but I thought worth passing along if you were curious to look around a bit.<br />Take care Don!aaronhttps://www.blogger.com/profile/07923166477399254965noreply@blogger.com