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!

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.

Where are all the other posts?

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.

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!

I am having a stem cell retrieval in a couple of weeks Was just curious of what to expect.

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.

Video Clip on Multiple Myeloma CBS Evening News | Feb. 8, 2024 (https://youtu.be/NZbPgtoFTqg?si=W-OO9acb8G7d-NYw&t=980)

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!

I am on Medicare using Anthem Blue Cross HMO and this year 2024 my co pay has been reduced to $10 per month. 21 pills on an 28 day cycle. I hope others will experience reduced co pays. Bristol Myer Squibb did provide me my pills in 2023 free directly from them. There was no hassle to apply. My Cancer Hospital assisited with a form that asked almost no info.

Fatigue and chemo brain are a big part of MM maintenance, for example with Revlimid. I do all the helpful stuff from exercise to plant-based diet to meditation to yoga, and each helps some. I have recently tried Provigil (Modafinil), which has been used by other cancer patients and also in multiple sclerosis. A pharmacist told me it is huge for his wife with MS. Here is one report: "Conclusions: Modafinil provides significant improvements in attention and speed of memory for breast cancer patients following their treatment of cancer." (link below) But overall, studies are mixed. There are quite a few results saying it does nothing. All I can say is, for me it has been very helpful, so far. Modafinil affects multiple neurotransmitters. It is not well understood. Patients struggle to describe what it is like, and for different people it is a different experience. It is stimulating, sort of, in a way, but it is not a stimulant. I would say it is "activating" - I get stuff done. Modafinil usually does not cause sleep, cardiac, and other other problems of stimulants like Ritalin, and also amphetamines. For most people, it keeps them going but then lets them sleep. This is big. It's why the military uses it for pilots, etc. I also tried the amphetamine Adderall and it gave me severe stomach cramps. Ritalin wires me for days. Armodafinil is a "cleaner" version that can reduce GERD and other side effects that some people experience. It also has a longer, smoother effect. I have used Apotex Modafinil and Sandoz Armodafinil. The cheaper brands probably have differences with fillers, etc. that can cause more side effects. None of them are cheap. As a poorly understood psychotropic med, Provigil / Modafinil may have long-term risks to memory and other brain functions. For example, there are concerns about students using Provigil (or fake Provigil) to cram for exams, and ER docs using it to stay awake. I am proceeding cautiously under the supervision of the prescribing psychiatric nurse. I found him by looking for ADHD clinics. I don't take it all the time, which may reduce tolerance and other long-term problems. Myeloma patients face lots of risks, including the effects of fatigue and chemo brain. So it might be worth discussing Provigil / Modafinil with your hematologist. There does not seem to be much awareness in the myeloma community, so do some homework on the research studies. As always, beware of all kinds of misinformation on the web. Start with Google hits on the science journals and then branch out cautiously. Hope this info helps https://ascopubs.org/doi/10.1200/jco.2007.25.18_suppl.9004

Hi all! As you know, we work hard to get you important and relevant information in your myeloma journey. What do you want to learn more about? What kind of articles and what topics do you want to see more on the website? We value your input and I'll do my best to deliver the most important myeloma information to you! I look forward to seeing your comments. Check out what we currently have here: https://healthtree.org/myeloma/community