Still in Remission

[ChristiYo]

I am just a 44 yr old woman who had a plasmacytoma, causing a spontaneous beck fracture; diagnosed with multiple myeloma II, at 37, did induction chemo, radiation, then 2 autologous stem cell transplants in 2013. Stopped all Dex, Revlimid and other treatments in 2016. Remission still holding, but residual myeloma still present in my blood. I see my oncologist at Johns Hopkins every 6 months for blood work, check ups, and a yearly bone marrow biopsy. I meditate daily and use cannabis to combat bone pain, Ptsd, and depression. I have no secret, but my faith in self care and god, and keeping myeloma in the back of my mind, eating healthy and to intentionally focusing on being grateful. Changing perspective does not heal immediately always, but helps me cope and enjoy whatever time I am blessed with. I am hopeful that I will still be here a decade from now, in spite of statistics telling me otherwise. I pray for all of touched by this beast of a disease. I wish for your comfort and peace.

[Hidden]

Hi ChristiYo,

I have just joined this MM community & your post was one of the 1st I read, being diagnosed @ 44 must have been one hell of a shock all round but it sounds like you are holding steady & who cares what that is down to just so long as it continues.

My SCT went exceptionally well, no mouth or throat sores, no infections, a lot of diarrhea but came home the same weight I went in with, I was told to expect to be in for approx. 14 to 21 days, I went home on day 10.

As it turned out I was in remission for approx. 6mths before my Paraproteins began to rise again, my squatters as I refer to them.

Oh well, it is what it is but your SCT seems be working well still, good.

For just about 2yrs I have been on Rev/Dex as maintenance therapy & its has done a pretty good job of holding of me at a plateaued level of 2.0 to 2.5.

I am not religious but I believe in being a good person who puts family & friends 1st while helping those that need & or deserve help a very close2nd.

In these relatively short lives of ours it comes down to whatever gets us through those testing times & thats very individual.

ChristiYo, respect to you for coming through such an early diagnosis which must have been really tough on so many levels.

I also hope you are here in a decade from now, as do all of us MM, some will be but realistically most of us won’t be, it’s the nature of the beast.

Best Wishes & Regards,

PlymouthBoy.

[ChristiYo in reply to Hidden]

This disease definitely turned my life upside down at 37, and even still, just everyday wondering when the numbers will start to change. I’m sorry to hear about your symptoms with the current treatment. Do you have an MM specialist? I have been told that is the most important step in finding something that works for a remission. I’m afraid to even call mine one, because technically I am not cancer free. I mostly try to ignore the disease, so it doesn’t steal from my present days peace. I live in Maryland. If you ever need to vent, you can email me anytime. I will do my neat to catch your message and respond. I have been bad about staying up to date on most websites. Take care, Christina

[Hidden in reply to ChristiYo]

Apologies, diagnosed at 37 not 44, reading your treatments/experiences again you have been through an awful lot. Yes, I have a very good Consultant who I get on with really well, she listens, she’s honest & genuine. It’s always nice to know there is somewhere to turn to vent, both positively & negatively, thank you.

You take care also. PlymouthBoy UK.

[holly440 in reply to ChristiYo]

hi ChristiYo

my 37 year old sister was just diagnosed with High Risk IgA Lambda MM, I read your post and I know this is an older thread and I wanted to see how you are doing?

Holly from Ohio

[ChristiYo in reply to holly440]

I was the same age at diagnosis and they told me I was high risk. I’m still doing well. No treatment since 2016.