What Is Causing All Of The Fatigue With Us MM Patients? Thanks, Curt | MyMyelomaTeam

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What Is Causing All Of The Fatigue With Us MM Patients? Thanks, Curt
A MyMyelomaTeam Member asked a question šŸ’­
posted March 15, 2023
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A MyMyelomaTeam Member

All of the MM Meds - both Induction and Maintenance Meds will cause fatigue. Once you get to MRD Negative at 10 -6 as per the clonoSEQ testing method, work with your Doc to Stop All MM Meds - see the MRD-SURE and MRD2STOP Reports (links at my Story).

I've been off all MM Meds since June 2022. My recent Labs have all CBC elements as completely Normal and the rest of my Labs are excellent - easily the best in over 30 years.

I do still have low Ig Values making getting over a cold a bit more of an effort but I don't wear a mask, I go grocery shopping, mall shopping, to restaurants, air line travel again, the gym, indoor golf range, etc., etc. - I'm living my life.

When I was diagnosed in Sept 2021 (at 68 years), I was around 200 lbs at 5'7" with a 40" waist. Now, I'm 165 and a 34" waist due to continued exercise and a better diet. I have plenty of energy to hit 300 - 500 golf balls daily - 5 days a week. Prior to the 4-1/2 months at the golf range, I spent 3 months 7 days a week at the gym to regain my legs and arms again. MM beat me up quite badly - once the Meds got me back to Normal Labs, I've fought like crazy to take my life back. I'm healthier now than at least the past 30 years.

All of this was from a starting point of 80% bad plasma, a 3.3 MSpike and one high risk factor. No SCT and stopping all MM Meds at my first MRD Negative results.

There is a way out - just fight for it.

posted March 15, 2023
A MyMyelomaTeam Member

I use the analytic graph tool on my digital blood test results (courtesy of Life Labs in Canada) to show individual parameters, The best indicators I equate with fatigue are the red blood cell counts and the hemoglobin. I am in my 7th year since I was diagnosed and am now on my third line of treatment. My best quality of life was in my 2nd year, when I went off Revlimid maintenance due to a rash, I was able to stay off the drugs for 18 months before I relapsed. During that time I had a lot of energy and was able to run and bike ride again. But the various drugs that have been helping me to combat MM, do take their toll, and I have found quite a few ups and downs in the fatigue cycle. My RBC's tanked steadily downward for 8 months last year and I became much less active. I am happy to stay I am on the upswing again. Yeah.

posted July 5, 2023
A MyMyelomaTeam Member

Curt,
Myeloma cells take up a lot of room in the bone marrow, leaving less room for the red blood cells, white blood cells and anything else that produces energy. The result is being tired. Then add chemo! More tired.

posted March 22, 2023
A MyMyelomaTeam Member

I guess I look at that my body is using energy to fight this monster as much as it can, so that means less energy for me over all. My numbers are always good. But, to me that doesn't mean I still couldn't have fatigue.

posted March 15, 2023
A MyMyelomaTeam Member

Curt,
I don't have MM yet, just MGUS. I have no energy. My legs feel heavy all the time and they are thin, not heavy. I read that Leucine helps provide energy to muscles and improves mitochondrial function. It's in salmon, chickpeas, brown rice, eggs, soybeans, squash, almonds, beans. All the healthy foods.

posted March 15, 2023

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