I’m on the train from Washington DC to back home in Poughkeepsie, NY after attending the 106th live performance of Bruce Springsteen since 1980. And I just saw this news. Bruce’s life and music has been an inspiration for whatever personal and professional success and happiness I’ve been able to bring into my life since being exposed to him at the age of 16 in 1976. I grew up 30-minutes from his hometown of Freehold, NJ. (This will explain my Healthtree community profile name, my name is Skip, not Bruce!). I have conflicting feelings right now. I’m both sad and glad. Sad because it sucks anyone has to suffer from this disease, And I wish Patti didn’t contract it, but glad to have another connection to Bruce’s world and to be able to connect with him and his family outside of his music and fan community and in much different context. His wife has been part of his E Street band since 1984 but from 2016 through this year she has rarely performed with the full band’s concerts. During his broadway show she did sing two songs with him each night in 2018. Questions about Patti and speculation on her absence on the tours around the Bruce fan community have been many, and many not so nice. often conspiratorial in nature about the state of their relationship and his family life. This answers a lot. This can only help our cause in terms of exposure and resources, I believe and maybe I’ll get lucky to be at a fund raising event with him and Patti (not like I’m prone to stalking him LOL). https://variety.com/2024/film/news/patti-scialfa-cancer-diagnosis-bruce-springsteen-e-street-band-1236137754/

So guys and dolls. As some know I went to get my results from my blood test last week. Anyway the usual of waiting around for half an hour and their was no hot chocolate this time so I had to settle for coffee. But hey beggers can't be choosers. I got shouted by my chemo nurse, we went and sat down and my consultant said "Your Paraprotein is zero which we like, and your light chains are excellent, which we love even more". So I'm still classed as in full response, I'm happy to report, I have felt tired over the past few weeks and so it left me asking myself if the beast had returned, I did discuss this with my consultant and the Dr's have taken me off Ferris aka iron, so she thinks it could be down to that so has suggested taking either an iron supplement or multivitamin until my bloods are done in November and to stop taking it a week before so if I'm low on it then it will still show up. I agreed. Anyway of course I'm happy to still be in remission but I'm also mindful that one day I won't be and that there are others who aren't this currently or have already relapsed, my thoughts of course are with you guys because I know it's not easy and the chemo etc aren't nice to go through. This isn't meant to be a rubbing your face in it thing and so I just want to make it clear on closing but I did want to let people know the results as I said I would. :-)

Hello all! I'm preparing for a SCT in about a month. That means I will be missing all of the holiday season. Faith and traditions are very important to me, and I'm sad to be missing all the gatherings with friends and family. What have you done to stay connected to people during your 100 days of isolation?

My Myeloma worksheet after 6 yrs on the journey... The main thing is, don't die from preventable causes. More myeloma patients die from infections than from myeloma (can't find the reference). Dr. Siddhartha Ganguly: "Myeloma is a cancer of the immune system” Avoid dying of COVID. “The COVID-19 mortality rate in these (CAR-T) patients was about 34%, he said. That’s comparable to the COVID-19 mortality rate in patients with hematologic malignancies undergoing other cancer treatments. For comparison, the COVID-19 mortality rate in the general U.S. population is 1.8%, Dr. Baird said.” https://www.patientpower.info/navigating-cancer/why-car-t-can-make-infections-more-serious One in three, 17X the general population. Put this on your wall as a reminder. Avoid getting even "mild" COVID because evidence is trickling in that it damages the immune system, specifically two types of T cells. https://www.dailykos.com/stories/2023/12/25/2213619/-Covid-is-not-done-with-us-It-s-just-getting-started-We-really-should-be-paying-attention Most patients are not aware of this and nobody wants to talk about it, including most hematologists. Hemos are focused on myeloma and have limited understanding of the territory around the disease. You really have to watch out for yourself and do your own reading of authoritative sources like those above. Myeloma science moves fast. If at all possible, go to a national center to get the latest treatments. I have been in remission for 6 years post-transplant. I got all the re-vaccinations, and I'm up to 9 covid vaccinations. mRNA vaccines might have long term issues, but better than being dead. Everything has risks, you have to balance them. Vaccines are essential, but may only be 50% effective compared to other people. That's why masking and other layers of protection are needed. https://www.myelomacrowd.org/more-data-on-myeloma-patient-responses-to-covid-vaccines-1/ Shingles is beyond awful. Get Shingrix on schedule and take Acyclovir (Dr. Derman, University of Chicago) If diarrhea persists on Revlimid, this is typically bile salt disruption. Try Colestipol (Dr. Paul Richardson, 2016). Also try a "Low FODMAP" diet. Many hemos and gastros don't know about these things, even though they are game changers and widely documented. Get the Low FODMAP app directly from Monash University because most of the info on the web is wrong. Portion sizes are key. https://www.monashfodmap.com/ For chemo brain and fatigue, consider Provigil or Armodafinil. The research on cancer patients is very mixed but Provigil has been life-changing for me. Again, few hemos know anything about this. https://healthtree.org/myeloma/connect/view-post/6SuGEaV6wxCNufCIbRif Watch your labs to assess your immune system status, such as IgG and IgM. When your immune system is down, raise your shields up. More masking, more avoidance of aerosols carrying germs. Eat an anti-inflammatory diet, exercise appropriately, and do breath work, meditation, yoga etc. to reduce stress. Consider an Integrative Medicine or Functional Medicine consult. Sleep is when the immune system recharges and adapts. I have been finding Muse headband neurofeedback and the OmniPEMF devices to reduce stress and improve sleep. I would never have believed it, but they work for me. The sleep data is clear. I wear a P100 respirator with a cloth mask over it whenever I go into shared air with more than two people. At a minimum, wear a genuine N95 (does not leak like KN95) whenever you are in clouds of germs. Even if you don't want to wear these effective masks, keep them handy in case you have to suddenly go into the ER for something or to help someone else. Sometimes people look at me funny, but that is better than being dead or crippled by covid. MM is a very complex disease and the road is winding. Keep a notebook. Participate in a support group. Even if you say nothing, you will learn tips and tricks and get team support.

Anyone has an idea what brand of protein powder should I take after my SCT to improved my white cells and immune system. Thank you

Hey all I am getting my Covid shot and Pneumonia shots today follow up with Tylenol. Anyone had there shoot with any side effects. Imine was Kappa IGa Oh this morning every joint in my body is on fire. Won't do all 3 again they added RSV

I am having hyperparathyroidism - high blood calcium, lots of aches, high parathyroid hormone etc. The increased general aches are the most troublesome side effect so far, but doing nothing risks kidney, bone and heart health so I have to act. My doctor tells me that she sees this often in people who have had upper body, neck and head radiation in their pasts. I had this as a child, radiation to shrink my adenoids. I am wondering whether any other MM patients here who have had radiation in their upper bodies or necks to deal with spine pain or for some other reason have developed hyperparathyroid issues. I am scheduled for surgery in early November - they have visualized one of the four parathyroid glands that is enlarged so will take that out, then while I am on the table they will test my parathyroid hormone level - if it has come down they will close me up - if not, they will take the rest of the glands, leaving only one half of one of them which I am told is sufficient to produce enough hormone. So - has anyone else faced this?

Anyone on kyprolis? Side effects? Also Sarclisa? 6 hour infusion!

I've been recently with diagnosed high risk mm and am on the quad therapy (DRVD) through two cycles and so far have seen my key cancer markers dropping very well. I'm now trying to decide where to have the SCT done in mid November. I live in Chicago and deciding between University of Chicago Hospital (Dr. Derman) and Mayo in Rochester (Dr. Dingli). My initial treatment has been through U of C but received a consult at Mayo. Has anyone here been treated at Mayo or U of C for SCT or otherwise for myeloma? Would appreciate any feedback!