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cyanSquirrel
Multiple Myeloma Discussion • February 14, 2024
Experiences with Mezigdomide in a Trial?
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Do we have in this group a member that gets Mezigdomide insteads Rev (in a research) . Together with Daxa and Valcaid . If yes, will glad to learn if it helps . Is it 1mg ? And what are the side effects ? Thanks
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fuchsiaBear
Multiple Myeloma Discussion • February 13, 2024
High IgG/Kappa With Otherwise Normal Labs?
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Hello! I was diagnosed with Smoldering Myeloma a couple of years ago. Bone marrow had 12% bad cells and my IgG has always been slightly high. Other than that, my blood work has been normal. I had my blood work done and a follow up tomorrow afternoon. I just reviewed the numbers all is in the normal range besides, IgG is 1699, Keppa 3.98 and Kappa/Lambda is 2.65. Has anyone else experienced normal range on all other blood work but these? Just need some reassurance. Thanks, Julie
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SetyBlue
Multiple Myeloma Discussion • February 13, 2024
Success Managing Velcade Skin Reactions
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I just wanted to revisit the conversation we had about the skin reaction at the site of the Velcade injection. Many people provided very good suggestions. I tried two of them and they both worked beautifully. The first one, was the advice to ask the nurse to put an air bubble into the syringe, then go at 90 degrees angle, straight in and as deep as possible into pinched skin. I did exactly that, and the result was close to miraculous - there was no skin reaction at all. I waited several days before posting this result just to make sure. This is the first time I had no skin reaction. From now on I will be asking every nurse for this technique. The air bubble worked! The 2nd suggestion was to use Arnicare gel on the older areas that had discoloration after the initial rash has subsided (I used Benadryl cream for the initial reaction). Arnicare gel really helps to remove the discoloration, at least in my case. Thank you everyone!
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MotherBetty
Polycythemia Vera Discussion • February 12, 2024
Exploring a Family Connection to PV
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hello everyone, My name is Betty, Im from Az. My Son has Polycythemia Vera. We found out he had it about 3 yrs ago, Hes under a doctors care, we dont know why he has this, we think his Dad had thick blood.
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Danielswanson
Multiple Myeloma Discussion • February 10, 2024
Seeking Locations for 10^-6 MRD Testing?
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I am looking to find facilities that do NGS flow cytometry where the sensitivity of the MRD testing can detect 1 cell in a million (a threshold of 1 × 10-6). I am in Florida and have been to the University of Miami Sylvester where this testing has not been successful twice now. My specialist at Moffit in Tampa wasn't aware of other locations for this testing. I'd be interested in any suggestions or information.
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Kvance6
Multiple Myeloma Discussion • February 10, 2024
Managing Stomach Pain After Eating? Tips?
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Hello everyone. My dear sister was diagnosed with MM 3 months ago. She has been doing chemo (3 weeks on and 1 off). She is experiencing a lot of side effects. We finally got the nausea under control but lately she has stomach aches/cramps after she eats anything. U am concerned she is not eating because she is so afraid her stomach will feel awful. Anyone else deal with this? Any suggestions, ideas, etc. would be greatly appreciated!
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violetTiger
Multiple Myeloma Discussion • February 9, 2024
Live MMR Vaccine Post-ASCT: Experiences?
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Hello from the UK. Hope you are all doing well. I had an autologous stem cell transplant 2 1/2 years ago for myeloma. I'm not sure if it's the same in the US but 24 months post AT I have been asked to have the LIVE MMR vaccine (measles,mumps and rubella) by my consultant but my nurse is concerned that with low immunity I'm at risk of being ovewhelmed by the live virus with serious consequences. My neutraphiles hover around .7 to 1.2 due to the lenalidamide/Revlimid treatment but I am generally very well. Has anyone else come across this dilemma? Would very much appreciate any experiences people have had. Unfortunately measles is on the rise here. Thank you.
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NKP64
Multiple Myeloma Discussion • February 9, 2024
Vaccines and Cold/Flu Prevention Tips?
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Hi all. After first month of VRD treatment, visited the doctor. He mentioned about a few vaccinations that would be helpful. Can I learn from others' experience, the importance of them and how quickly they need to be administered? Also, coming to common cold/ flu due to a weakened immune system, I would appreciate it if you can share some do's and don'ts from your experiences. Thanks all!