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jazzmom Member
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 As I have mentioned before, my mom is 63 diagnosed on 7/4/08. She started DEX on 7/18/08 and Thalidomid on 7/21/08. Her initial Beta2 Immu. was 12.2, which was stage III pretty advanced I guess. After the first dose of DEX and taking the low dose thalidomid, she was extremely tired and ill. After only 20 days of 20 mg a day of DEX, the doctor pulled her off it for a while. She doesn't seem to be able to handle coming off it. She is only taking 100 mg of Thal. and when she increased to 150 mg, she can hardly move? A port was put in 3 weeks ago, and her lower leg and feet swell huge..... The doctor here is somewhat perplexed, which does not make us feel to secure. Here is the funny thing.... Her last BETA 2 blood test came back at 5.2?? Her kidney function is back to almost normal? Now what? It's working but she feels lousy and can barely get out of bed. Anyone with similar experience? We are going to begin the process of sending her info to Huntsman's for a second opinion. She worries this will jeapardize her care with her doctor here. He is good with her, but doesn't seem to know what to do as he treats many different kinds of cancer not just myeloma. thanks for any light you can shed on this situation? |
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DougC Member
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I had swelling while on Dex/Thal. My doctor has switched me to Dex/Rev and we'll see how that goes. However, it sounds as though your mom's swelling is much worse. It may or may not be related to the drugs....the doctor should be able to figure that one out...I would think. BTW, 20mg of dex per day for 20 days is a lot of dex in my book. I was diagnosed stage III as well and I've never been scripted that much dex or thalomide so I can't really comment on the side effects....not to mention, we all respond differently. Here's a great article about being treated for myeloma far from home. http://online.wsj.com/public/article/SB119188193697252668.html Good luck to your mom and your family. |
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jazzmom Member
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I must clarify, she was 40 mg for 4 days, 4 days off, then she was reduced to 20 mg 4 days on 4 days off, then 20mg 4 on, and has been off since. she had a terrible time coming off the DEX, felt lousy on it, and even lousier off it. However, she wants to do it all again, because she is afraid she won't be able to have a stem cell transplant if she goes on any other treatment plan. She is feeling alot better just being on the 150 mg thal, however as I mentioned the swelling is tremendous. We feel like we are spinning our wheels and shoud be doing more. When is a person o.k. to look at a transplant. Her numbers are better, she just feels lousy. thanks for responding. |
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Annick Member
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Hi Jazzmom, Thanks for posting. Regarding your question about when a person is well enough to go to transplant: as long as your mother has good organ function, sufficient white blood cell and platelet counts, and she doesn't have any other medical complications that would make it unsafe for her to proceed with transplant, she will be able to have a single or tandem transplant. There are no magic numbers that make someone eligible, and it's decided on a case-by-case basis. Regarding the swelling in your mom's leg(s): if the swelling is only in one leg, your mother should have a doppler ASAP in order to rule out a DVT, which is a blood clot that could travel to the lungs and cause death. If she has swelling in both legs, it's probably fluid retention from the dexamethasone, and thalidomide can aggravate that. There are treatments that can counteract this fluid build-up. Again, I would suggest having her come here for an evaluation and second opinion since you are not too far away from HCI. |
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