I am sorry i missed your survey on pain My nerve pain is controlled very effectively Through capsicum ointment. It is extremely hot and confuses the messages to the brain. My pharmacist says it does not work for all people but for me it is a godsend CAUTION the ointment is very hot and can burn the skin. Start with the lower. Strength. Be CAREFULL The brand i use is zostrix, you may need to use it for s couple of weeks before it becomes effective

I see you have a meet up on7/28 , how do I find out where there are more. I really just can't make this one due to being in Md.

This is a post I made on Facebook from the Parks on the Air group a few minutes ago. Thought you might enjoy…. ~~~~~~~~~~~~~ My Triumphant First Solo POTA Activation! Yesterday marked a significant milestone for me: my very first solo Parks on the Air (POTA) activation! Despite challenging band conditions here in the Pacific Northwest, I had an absolute blast. More than just making contacts, this outing was a personal victory, proving I could manage a full setup on my own. For those in the amateur radio community, POTA is more than just making contacts; it's about the adventure of portable operations, pushing your limits in the field, and exploring new parks. It's the thrill of setting up a station from scratch, testing gear in real-world conditions, and the camaraderie between activators and the "hunters" who chase us from their shacks. Each activation offers a unique challenge and a chance to earn awards, making it a highly engaging aspect of the hobby. Living with Multiple Myeloma (which is the #2 blood cancer in the world) and a secondary disease called AL Amyloidosis presents daily challenges. Neither has a cure, but I'm incredibly grateful to have been in remission for 8 and a half years! However, these conditions also bring congestive heart failure and other amyloid issues that severely limit my ability to stand or walk for long periods. Even walking up the stairs in my four-level house makes my heart pound, and with the amyloid in my heart, it takes considerable time for it to return to what, for me, is a normal rest state—I'm actually never truly at "normal" rest, always in A-fib and A-flutter. This means that any exertion, like putting up all my radio gear and antennas, significantly stresses my heart and severely affects my orthostatic hypotension. I constantly had to sit and rest, waiting for my heart to settle before I could tackle the next task. So, getting everything set up was a true test of perseverance and felt like a huge victory, regardless of how many QSOs (contacts) I made. Adding to my purpose, I'm also a life coach with HealthTree Foundation, specifically a Multiple Myeloma coach. It's incredibly fulfilling to help other patients navigating the difficulties of their cancer journey, offering support and sharing insights from my own experience. I want to tell my coachees to get out and enjoy life we necer know how much time any of us have, healthy not like my coachees The bonus was achieving a "2-fer" – activating two parks in one trip! It took a bit longer than expected, so long in fact, I even forgot my lunch – live and learn! But the absolute highlight? While I was calling "CQ POTA," on the air, a couple walked by and asked, "Are you calling airstrikes on Iran?!" Without missing a beat, I shot back, "You bet! Going to blast the &)#£ out of them!" We all shared a fantastic laugh. It was moments like that, combining the joy of radio with a good chuckle, that made the whole experience unforgettable.

Prepping for ASCT in July. Looking to connect with anyone who has gone through it recently. What to expect? what to bring? I’ll be at RUMC

HealthTree Connect community events… For those who’ve gone to one before, are they for those with just MM (& their family/friends/etc)? Or is it open to the precursors also? Thanks

Where do I find list of specialists in my area?

My husband has high risk MM. He has his SCT last May, but after 10 months relapsed. He was heading to CarT treatment, but the day the cells were supposed to be returned to the clinic, we learned that the T cell modification had failed. His cells were slow growing, did not respond well to the growth factor treatment, and failed transduction with the virus. He’s currently on Xpovia, dexamethazone, and carphilsamide. However, the side effects have been hard to deal with. I’m wondering if anyone has had a similar reaction. Can he move to bispecifics relatively soon, or does he have to wait for the current treatment to fall? Because as far as he’s concerned, it’s not worth doing as it stands.

A friend shared this article with me. It is a wonderful story. today.https://www.bbc.com/news/articles/ckg4kj2nxjgo

What financial concerns do you have? Are you stressed over possible changes to healthcare coverage?

Help Us Bring Hope to Andrés Bracho — A True Survivor Fighting Myeloma in Ecuador My name is Andrés Paredes, and I want to share the story of my father-in-law, Andrés Bracho — a resilient and honorable man, currently fighting multiple myeloma in Ecuador, where access to advanced treatment is practically unavailable. Andrés has already endured a malignant plasmacytoma, which was surgically removed. He now lives with a second inoperable tumor on the opposite side of his back, which, if removed, would likely leave him unable to move. Despite the pain and complexity, he remains on his feet — a testament to his strength and will to live. But his fight is even greater: Andrés is a heart attack survivor with a history of hypertension, only one functional artery, and multiple pre-existing conditions, including chronic pain and prostate issues. And yet, despite it all, he walks every day with dignity, refusing to give up. His current treatment is limited to what the public system can offer: cyclophosphamide, dexamethasone, and bortezomib, with tramadol, gabapentin, and acetaminophen to manage the pain. Advanced treatments like lenalidomide, carfilzomib, or stem cell transplants are simply not available or are priced far beyond what a regular Ecuadorian family could ever afford. We are reaching out to HealthTree Foundation because we believe Andrés deserves a chance. We need guidance, medical orientation, and any possibility of international support or care pathways. He’s not yet a grandfather — but he dreams of becoming one. And he has earned every opportunity to keep dreaming. Please help us bring light to a story that still deserves a hopeful future. With gratitude, Andrés Paredes & Family

Hi I had my SCT in September last year and doing okay on the Revlimid. I was wandering what supplements most people are taking after their treatment. Thank you!

Has anyone been treated by a neuropathy specialist for peripheral neuropathy? If yes, has it been effective?

Hello! I was diagnosed Dec 2024. I am 46 years old. I am on month 5 of treatment. I am high risk. My numbers had been going down pretty steady except for 1 month in the beginning when they kept stopping my treatment due to my low neutrophils. But since that is under control I have been consistently getting treatment. Just today my M protein came back higher. 6 weeks ago it was at .3 and today it was .4. I haven’t talked to my doctor yet it usually takes her some time to review and contact me. Doctor reduced my steroid last month from 40mg once a week to 20mg once a week. It was not letting me sleep. Could this be the cause of the increase? Is this a sign medication is no longer working?