Connect with others who understand.

Sign up Log in
Resources
About MyMyelomaTeam
Powered By
Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Maintenance Treatment

A MyMyelomaTeam Member asked a question 💭
Macomb, IL

My oncologlogist has had me on Revlimid 25mg (7days on, 7 days off), dexamethasone 20mg and Velcade injections every two weeks. I am curious if anybody else is on all three. I spend 6 months in Illinois and 6 months in FL. My FL oncologist seems to think all three is a little unusual but is reluctant to overrule the Illinois oncologist. I went through a successful stem cell transplant 9 years ago and was considered to be in a higher risk staging rating at the time. Would love to hear anybody in… read more

February 8
•
View reactions
A MyMyelomaTeam Member

Hi I received 6 months of quad induction therapy RVD+D and reached full response remission Oct 2023. Now on 1 shot per month of Daratubamab maintenance. So far so good 😊

February 11
A MyMyelomaTeam Member

Don,
Wow your maintenance is the same as my initial treatment, except my velcade was an infusion, 1st weekly, then after several months, bi weekly then once a month. Revlimid was a lower dose than yours, cut back initially because I had a bad reaction the first several doses.
Then an SCT after 8 months of infusions.
I am in remission with no detectable disease after a bone marrow biopsy 3 months after the SCT. I had Daralex fast pro injections along with the Dex steroid for one year, monthly for maintenance.
Then in October of 2023 I was given a drug holiday. I’m still on it and my blood is checked every 3 months. I asked my oncologist/hematologist in October if he was putting me back on maintenance just to keep it tamped down and he said no not unless I show signs of relapse.
This disease is the cause of 2 severely broken/shattered upper arms, both my femurs were very weakened before this was found also. I never knew I had this until I broke my arms in a fall. I was 65 and thought I was doing well in spite of two artificial knees, one artificial hip and severe arthritis and pain issues since I was in my late 30-s. I worked hard most of my life.
Now I have severe neuropathy from the velcade and revlimid, I hurt but I love God for giving me more time. I love my family. I walk most days and can do a lot on a work bench still even though my legs and arms hurt. I’ve modified my diet too as sugar free and low carb as I can get it. I still drink an occasional beer but do not drink hard alcohol anymore since my transplant. The funny thing is I had one or two shots of whiskey and water all throughout my chemo period. I told the doctor and he said as long as you’re moderate. I have modified since the transplant to a glass of wine most evenings. I take a long list of supplements including curcumin 4 grams, D3, garlic, magnesium, cranberry and others. My prescriptions are just mobic, omezerole, gabapentin and bystolic for BP control.

February 11 (edited)
A MyMyelomaTeam Member

I get the light chain bloodwork done every 2 months and they are in the normal range.

February 11
A MyMyelomaTeam Member

I have not relapsed. I had my Sct done 9 years ago. This is a maintenance program they have me on to keep me in remission. My oncologist says I have Trisomy11, monosomy13 with deletion of P53 witch apparently puts me in a higher risk category.

February 11
A MyMyelomaTeam Member

My maintenance is 10mg Revlimid 21 on 7 off. Daratumumab (Darzalex FasPro) monthly injection and 15 mg monthly of Dexamethasone. I took Velcade during the 16 week indoctrination period every week with the above.

After the ASCT I’m in “remission” and MRD negative.

I don’t know why some people get monthly Dara and some people get monthly Velcade. Perhaps it’s the kind and risk one has. I had IgG Kappa light chain. Now the doctors say all of my chromosomes have repaired themselves (no additions, no deletions, no translocations).

So we’re hoping to be in remission for 8 years (lol) as long as this keeps working.

I wouldn’t override any regimen now if it’s working. You’re lucky you’re a snowbird. Looks like we in Philadelphia are going to get whacked with 3 snow storms in the next 2 weeks totaling 23 +/- inches. Oh boy!

February 8

Related content

View All

Maintenance Therapy After Stem Cell Transplant

A MyMyelomaTeam Member asked a question 💭
Oceanside, CA

I Need A Partial Knee Replacement But Scared About Going Off My Maintenance Meds Before And After The Surgery. Comments If You’ve Done It??

A MyMyelomaTeam Member asked a question 💭
Prescott Valley, AZ

Can People With Multiple Myeloma Taking Maintenance Therapy Get The Covid 19 Vaccine?

A MyMyelomaTeam Member asked a question 💭
Cincinnati, OH
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in