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TimJohnson
Multiple Myeloma Discussion • July 12, 2025
Sharing a Great Resource for Men: Reel Recovery
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I recently returned from a retreat for men with cancer put on by Reel Recovery. It's a two day activity of fly fishing at top-flight facilities, relaxation, and camaraderie. Fly fishing skills or experience not required and they provide the gear if you don't have any. They also have a 1-1 ratio of fishing buddies to attendees (many of the buddies have also dealt with cancer themselves or with family members). There are sessions scheduled all around the US, UK, and Australia. I cannot recommend it enough for any men here or that you know who've joined the Big C Club. I put my name in to be a volunteer fishing buddy for other attendees. This has been going on for over a decade and ours was the first time that they had more than one MM patient (there were three of us) at an event. We had plenty of time on the water, good food, great roundtable discussions with a licensed counselor, and great scotch and bench fishing in the evenings. Here's the link. Please spread the word. www.reelrecovery.org
Reel Recovery | Cancer Support for Men | Group Fly-fishing/Travel | US

Reel Recovery | Cancer Support for Men | Group Fly-fishing/Travel | US

Reel Recovery offers free Fly-Fishing Retreats for men living with all forms of cancer. Helping men cope with impacts of cancer through the healing powers of the sport of fly-fishing & supportive group environment.

https://www.reelrecovery.org
Thumbnail for A Gentler Approach for Treatment of Younger Patients With AML? | Amir Fathi, MD | EHA 2025 #AML
Playlist: EHA 2025

A Gentler Approach for Treatment of Younger Patients With AML? | Amir Fathi, MD | EHA 2025 #AML

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TrishF
Multiple Myeloma Discussion • July 12, 2025
Managing Hyperpigmentation on Maintenance?
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Hi everyone! I am now in the maintenance stage of my myeloma journey. The maintenance includes Velcade (bortezomib) injection every two weeks + revlamid daily. I’ve been noticing hyperpigmentation on my palms and face. My complexion has literally changed on my face. wondering if anyone else has experienced significant hyperpigmentation and how you treated it.
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Samantha
Multiple Myeloma Discussion • July 11, 2025
Feeling Unheard: How to Get a Proper Diagnosis?
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I very strongly believe I have a myeloma/blood cancer. My doctor dismisses my concerns or argues with me. Everything is fibromyalgia to him - I know this is not. I’ve asked him to send me for a PET scan and he’s told me he would be the laughing stock of his colleagues if he sent me for one. He has also ‘educated’ me on 2 occasions that he has ‘been doing this’ (practicing family medicine) for 20 years and would know cancer if he saw it. In the interim, my left leg hurts every single night for the last 18 months, my spine and now my hip/buttocks. I suffer from daily headaches for the last year in the frontal area of my forehead bone. This is my second doctor. I feel that I am not believed. I am judged by how I appear on the outside - not what I am on the inside. My bloodwork usually comes back fairly normal (not entirely). I’m too young to die. I have a daughter who depends on me and an elderly dad with Stage 4 cancer. I desperately need an oncologist to examine me or a bone biopsy or a PET scan… I’m tired of being in pain, and tired of the fear of what is happening to my body while I sit on the sidelines and just wait. I pray that I finally will be listened to. This isn’t right. Not in this day and age. Is there a doctor out there who can help me, please? Samantha, Toronto, Canada
Thumbnail for Single-agent selinixor vs physicians choice in #myelofibrosis | Alessandro Lucchesi, MD | EHA 2025
Playlist: EHA 2025

Single-agent selinixor vs physicians choice in #myelofibrosis | Alessandro Lucchesi, MD | EHA 2025

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