Introducing Myself

[KimMarr]

Hi, My name is Kim Marrelli. I was diagnosed with Myeloma 4 years ago. I am considered high risk with t(4:14) (MMSET/FGFR/IGH). To be honest, I only partially understand what all that means. In the past, I have been teated with Revlimid, Velcade, Kyprolis, Pomalyst and the ever popular, Dexamethasone. Currently, I am in a clinical trial taking Panobinostat, MLN9708 and Dex. We hope to get my numbers down so that I can proceed to a RIC Allogeneic stem cell transplant.

I would be happy to share my experiences with any newly diagnosed patients who might need guidance or old timers like me who just want to share ideas.

[alexaundria44]

Hi Kim. My name is Saundra, I'm 70, and in spite of the fact that I generally feel pretty good in spite of some unexplained hair loss and on-going pains in my calf muscles and shoulders on walking or doing daily routines around the house...I walk a lot...that didn't deter me. I almost feel like I've gotten the run-around in some ways, the oncologist I saw just diagnosed me and pretty well sent me home, then the GP who's taking my regular docs places while she's home on maternity leave told me what I had wasn't the threatening kind, which was a relief to hear. But the Oncologist gave me a prescription for some statins, which I haven't filled because they are said to made muscle and joint pain worse unless you also take that enzyme, Q10 I think it's called, and she didn't prescribe any of that so I don't want to go on statins until I know more. But without talking to her and asking why she wouldn't prescribe the hormone as well, I decided the statins would just aggravate the pains I already have and I'm not going to do that until I get more information. I have NO idea what my prognosis is, what stage I'm at, why I've got this, what they intend to do for treatment, or even what the meds and tests are that you are talking about. ..I just don't know what questions to ask yet so guess I could say I'm more than a little lost... but so far I haven't been too upset about my diagnosis. What age are you, and have they talked to you much about what Multiple Myeloma is and why you have it....

[alexaundria44]

Hi Kim. I'm Saundra, I'm 70 and I was diagnosed with MM about 3 months ago. Still have a lot to figure out yet, especially when I feel I was left kind of hanging by my Oncologist, and then my family doctor told me the MM I have wasn't the 'dangerous' kind, whatever that means! You're right, it's confusing...I don't understand any of the terms you're talking about above either, but then being new to this I guess I don't know the right questions to ask either doctor or Oncologist yet. All I know is that so many times doctors seem to recommend things...or don't write prescriptions for things you need to alleviate the negative results of the meds they are already prescribing for you, and then when your system gets too far out of whack because of the lack of Potassium or the raise in calcium levels caused by the meds you take, even more medications or procedures are prescribed or said to be necessary. Sounds like that other fellow on here...can't remember his name right now...has been through hell because of the chemo and other stuff he's been through. When my younger sister and I saw what our Mom and sister went through we both decided we wouldn't ever do chemo and I plan to stick with that....at least at this point in time, haha! Gotta always reserve the right to change one's mind, huh... Anyway, sounds like you're doing fairly well 4 years into this....keep us posted on how it's going and lots of warm hugs and best wishes to you!