Hi Larry,
I have gradually been classified from partial to complete response for over 2 years and 10 months in remission without an SCT.
Prior to my remission I was treated on RVD for 8 months, to RV gradually reducing the frequency and dosage of Velcade for another 1 1/2 years timespan. I am now on maintenance with Revlimid between 10-15 mg. I had a Stem Cell harvest in the spring just in case of relapse as an option. I never had an MRD test, but am certain I am MRD positive since my Kappa and Lambda light chains are roughly double the top limit. My M spike is zero for an extended time with no change. My Beta2microglobulin 2.7 on a 2.2 mg/l upper limit. I have not had a relapse. I am no longer considered high risk with new standards in FISH testing specifications.
I have a healthy diet with nothing extraordinary. I take vitamins and calcium again nothing extraordinary. I drink wine periodically with dinner and have a cocktail now and then.
I have a top Multiple Myeloma Specialist and have typical struggles with MM variations in neuropathy, fatigue and gastrintestinal issues. Multiple myeloma has been a roller coaster of side effects from medications.
I exercise at the YMCA 2/week and walk with my dog often as weather permits.
Every MM case tends to be very individual so I do not compare myself to others. I discuss my symptoms and review my labs with my local oncologist and MM Specialist on scheduled basis. I follow my healthcare teams recommendations which work out well for me. I have had very stable lab results since I have been in remission. No issues in Petscan and extensive testing performed for my stem cell harvest. If you read my story you will understand that I have been fortunate to not have required extensive treatments to date. Can I relapse, if and when ?? I will deal with the issue when my health experiences , symptoms, lab results and healthcare team recommendations indicate. Meanwhile, I work toward improving my quality of life through my habits of sleep, diet and exercise.

Amen to that! My husband has been in remission for 8 years. Stem cell harvest only. Dr's push the transplant, but we decided against it. No guarantee with a transplant. Dr's never discuss the statistics. Transplant Is a grueling lengthy procedure , with extended recovery time, then you are on the same maintenence routine afterwards. There are new meds every day. We are confident with the decision we made.

MM is a very complicated illness to know in great detail. Even though I spend a lot of time researching it, I’m sure I’ll continue to learn plenty more.

For sure, it’s important to be concerned about all of your infections. The maintenance drugs can drive your levels down making it easy to get bad infections that are hard to get rid of.

After my treatment, within a year I had three cases of bronchitis. They all required antibiotics and cleared without becoming pneumonia. I had never had bronchitis prior.

As for your leg cramps, try taking 400mg magnesium glycinate daily. This should help.

For myself I don’t take Zometa or Xgeva. I take Strontium Citrate. It strengthens bone from the inside and without the side effects.

Sorry but if you have low platelets and your getting plenty of infections, your Docs have nothing to be happy about.

I’d recommend you consider a Consult with Dr Brandy (info at my Story). He was diagnosed with MM 6 years ago. Changed to a plant diet and key supplements. Revlimid & Dex only for 6 years and has been able to maintain All Levels as Normal. I’ve had a Consult and use his monthly email Support. I send Labs and request info for improvement to avoid future infections. I feel I’m getting very good advice towards these goals.

Instead Zometa, Dr Brandy increased his bone density 8% in 6 months with Strontium Citrate at the start of his treatment and continues to take it daily.

You mentioned type two diabetes. I take a Pre & Probiotic to help my MM but the MegaPre & Pendulum Glucose Control is also helpful with type two diabetes.

At my Story @A MyMyelomaTeam Member, I've posted plenty of details about the items I take daily.

Notes from my Story
Key Minerals and Vitamins for Bones to help Strontium Citrate.

Vit D3 10000 IU - very important to have high blood level Vit D
Vit C 1000mg 2x
Calcium Carbonate 1500mg (2 Tums) - First thing in the morning
Vit K2 200mcg
Vit K 120mg
Magnesium Glycinate 400mg
Magnesium Citrate 200mg (for constipation)
Multi Vitamin for trace minerals

Pre and Probiotics for bone building to aid Strontium Citrate

Microbiome MegaPre - Prebiotic

Pendulum Glucose Control 2x daily - shuts down IL-17 to boost osteoblast activity for rapid lesion repair ( for general needs, you can consider Metabolic Daily instead of the more expensive Glucose Control )
Provided adequate Calcium, Vit D, Vit C, Magnesium, etc. are consumed

Mentioned Users

A MyMyelo...

Hi Jen,
I was reviewing my case in October at Dana Farber and during the discussion with my specialist and a visiting specialist from Estonia they both stated that my high risk status had been changed by the International system. Either way my maintenance continues. Relapse when…… remains in the future. My Revlimid dose ramped back to where I used to be and daily variability is my issue. My neuropathy is improving, gastrointestinal issues gone, fatigue largely from insomnia. I never had insomnia like this while on Revlimid so this is my current struggle. I am able take our cocker spaniel for walks ,weather permitting ,and work out at the YMCA when I get sufficient sleep rest. I keep fighting, never quit, never give up. 🙏🙏

@A MyMyelomaTeam Member Hi, Glad you're doing well and remaining active! I have my mm care at Mass general in boston. You are in great hands with Dr R at DF. you said you were not considered high risk anymore, but your story said you had aggressive MM with trans locations. what mutation/s did you have that aren't considered high risk anymore? thx I have t4;14.

Mentioned Users

A MyMyelo...