[hfilipiak]

Rash and Swelling from Thalomid

by hfilipiak on Thu Sep 13, 2012 4:22 pm

Hi, I hope some people who have already experienced my treatment regime can help me. I am on the VTD regime for my induction therapy. I have been taking the Thalomid since Aug.31st (today is Sept. 13). Yesterday I broke out with hives over much of my body, my throat was swollen and I felt like I was gagging all the time. This morning my lips are huge and my mouth is sore (no actual sores in my mouth, though). I couldn't sleep last night, because every time I tried to lie down, I had pain in my chest. The doctor said to stop taking the Thalomid and to wait a few days. My worry is about how this may affect my total treatment progress. Did this ever happen to anyone else and, if so, were you able to take the Thalomid after that? Will my body adjust or always be allergic to this drug? I would appreciate any information you can provide to me. Thanks.

[Cindylou]

Re: Rash and Swelling from Thalomid

by Cindylou on Thu Sep 13, 2012 4:40 pm

Did your physician explain why he put you on Thalomid? It's common to use Thalomid / thalidomide outside of the U.S., but in the U.S. it seems like almost everyone uses Revlimid instead.

Is your physician a myeloma specialist? If not, I'd definitely suggest getting a second opinion from someone at a well known cancer center who regularly treats myeloma.

[blueridgegirl]

Re: Rash and Swelling from Thalomid

by blueridgegirl on Sat Sep 15, 2012 1:46 pm

hfilipiak, My husband has been on Revlimid and prednisone for 2 weeks and developed a rash yesterday. We will check with our doctor on Monday and I'll let you know what he says. I think you need to call your doctor though, to make sure this isn't a serious side effect. The chest pain you mentioned doesn't sound good.

[hfilipiak]

Re: Rash and Swelling from Thalomid

by hfilipiak on Thu Sep 20, 2012 3:16 am

I had checked with the doctor and he had taken me off of the Thalomid immediately. That was a week ago. My throat has healed, as are the sores in my mouth. The rash has turned into red scabby areas. I went to the Cancer Center on Tuesday to begin my second round of treatment. This had started during my week off of Dex and Velcaid. But I was concerned because the last Velcaid injection had left a big red circle on my arm that was not fading. So I really wanted to see the doctor in person before beginning further treatment. Luckily, he was in the building. Although it turned into a 2 hour visit, I did get to see him and he went onto the computer and did searches about possible rashes associated with Velcaid as well as Thalomid. But the decision was that it was probably the Thalomid causing the reaction. So I am still off Thalomid, but began the Dex and Velcaid for the second round. I really seem to have no adverse affect from them, but had severe constipation, extreme fatigue and then the awful rash, throat swelling, mouth sores from the Thalomid. It would be nice if I could just stay on Dex and Velcaid--at least until he does my blood work after Round 2 and we see if my numbers are going down satisfactorily. It is a lot easier on me. I am also taking Tumeric -Curcumin 3 with bioperine (2-4 grams a day). I hope that helps the Velcaid. Also reservatrol (my nightly glass of red wine, plus grapes and a resveratrol capsule everyday. The doctor suggested B vitamin complex to help prevent peripheral neuropathy. So I am also adding those. I usually take a lot of other supplements, but cut out a lot when research showed they interfere with Velcaid ( green tea, Vitamin C and other antioxidants.) Since I don't know what others do (MSM, some multi mixes) I have just eliminated most of them until I am in remission. Then I will resume their use. I thought I had to take Thalidomide--but I have read that some paitents are treated with just Dex and Velcaid--so it is possible. Maybe not as effective, but the Thalomid was killing me --at least that was how it felt--I was dizzy and, if I bent to pick something up, it felt like I was falling forward onto my head. I would have to grab some furniture. Just really hard on my body.

[hfilipiak]

Re: Rash and Swelling from Thalomid

by hfilipiak on Thu Sep 20, 2012 3:37 am

TO answer CindyLou, I am a patient at Hillman Cancer Center in Pittsburgh, PA. I really feel I am in good hands. I had horrible medical care from several doctors for about 4 years while I was in horrible pain from breaking and healing ribs. I even went to an emergency room, where they ignored my symptoms of not being able to breathe very well and of pain in my right chest and back and proceeded to keep me for $13,000 worth of heart tests. They took a chest x-ray and said nothing was wrong---the doctors recently had the x-ray reread and they should have seen all "numerous broken and healed ribs". So I am so happy to get the feeling that I am finally in competent medical hands. I have seen efficiency, professionalism, kindness, competence, and all the characteristics I would hope to find in medical personnel caring for me. Now I have to find a new PCP. I don't know where to start with that. As someone who has become cynical and disillusioned by doctors and medical care, it is hard for me to have trust and put my life into the hands of doctors and medical facilities. It is ironic that now I have little choice. So I am grateful that I can feel this level of trust.