MrMike,
It would be really nice to know what we have. It has taken me years to figure out what my FISH, Karyotype, Cytogenetic results are. I thought I finally had them figured out, asked the doctor to confirm, when she told me I was looking at the probes. She told me to ignore the probes and just look at the Results. Problem was, I didn’t understand the results either. I would love to just get a card with what I have, not all the things I have mixed in with the things I don’t have. They also don’t test again for something they have already found, so you have to look at 2 or 3 different bone marrow biopsies. Knowing what I have can help me connect with others who have the same characteristics. I have t(14;16) with 16q deletion, Monosomy 13, and +5 (extra Chromosome on 5). My results say I’m high risk but my doctor says you are only high risk once you have MM, not SMM like me. Why do they make it so hard to understand! Also, looking at all the research, there’s not much on t(14;16) because people who have it die quickly, so no study. There is great feedback from patients on this site, like Larry2, who is trying to understand his MM, and use his knowledge to find ways to fight back and heal. It’s hard to find that information again,. It would be great if it was compiled somewhere. Doctors have videos on therapy, but not healing therapy, like supplements, healthy diet-lotions for itchy skin, etc.
Paula🌹

Yes. To have professionals involved in our discussions. Someone of authority to confirm or dispel our questions and concerns.

Basically for info. And how others are coping. While there are similarities to my case with some members the differences are quite significant. Everyone seems to be in different stages, different longevities, different protocols and different levels of discomfort. What I find fascinating is the degree of technical knowledge some have about this disease (e. g., IgG Kappa light chain, p38 deletion, etc) and the enormous and varied therapies that are being used. I am only 1 year (exactly) into this but have been blessed with a team that, in my opinion, has not made a wrong decision. So when I read someone is in pain it distresses me. If your meds are working properly there should be no pain and limited impact to normal life activities. That said, we know the meds aren’t perfect so there will be some side effects that can not be easily overcome. I get winded easily due to low red blood count which carries the oxygen. Why can’t I get the count back up to normal? I live with it and make the mental as well as physical adjustment. So when I read someone else’s posts I think “if only they had my doctors and team they would be better off.” That is simplistic but that’s how much confidence I have in them. And having confidence in your team is a large part of your mental wellbeing! Hope this diatribe helps!

MrMike,
I would probably eat better and take my supplements regularly if others were doing it with me. The same goes for exercise.
Paula

Thank you, Mark. I truly appreciate your response. Is there anything that would make your support group experience even better?