Connect with others who understand.

sign up log in
About MyMyelomaTeam
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 Therapy After Stem Cell Transplant

Maintenance Therapy After Stem Cell Transplant

What is the standard maintenance therapy after a SCT? I am on 10 mg Revlimid every 28 day cycle. What do they prescribe to those who cannot tolerate Revlimid? Just curious what others are doing.

A MyMyelomaTeam Member said:

Wendym, Your regular dentist would see the beginnings of osteonecrosis on an X-ray,
My dentist sent me to a very well know oral surgeon in my area. He told me nothing could be done for it and prescribed a rinse to put on a cotton ball and apply to the area twice daily.
It was about 10 months later that I started having pain in my jaw and, at that time I mentioned it to my oncologist. She immediately sent me to a cancer oral surgeon, however, the damage had been done and surgery was necessary. My surgery consisted of removing
1 1/4” of my upper jaw bone and a molar and
3 teeth. Luckily, the necrosis was on my upper jaw and it did not cause any disfigurement. It is a possibility that if it is your lower jaw is involved, you could have a facial disfigurement. I am still being followed by the oral surgeon who does not want me to get a partial until he is positive he removed all of the necrosis. Therefore, my next visit with him will entail an X-Ray.
Believe me, this is a nightmare! And that is why I encourage anyone on this medication to see their dentist more that every 6 months.
The bottom line is, if your regular dentist sees signs of necrosis, immediately ask your oncologist for a referral to a cancer oral surgeon. In this case a regular oral surgeon may not be able to help.
Gail❣️

edited, originally posted 12 months ago
A MyMyelomaTeam Member said:

I couldn’t tolerate the 10 mg Revlimid but I had diarrhea and led cramps with other muscles cramping up they tried to counteract all this but after two months the doctor asked me what I wanted to do..I told her cut it to 5 mg.
She did and I have no side effects at all... I believe our bodies will tell us what it can handle..we just need to listen.

posted 11 months ago
A MyMyelomaTeam Member said:

Hi Wendym, I go to MD Anderson at Houston. My oncologist did not start any maintenance until 100 + days after my SCT. I had great news yesterday. I have no detectable myeloma at this time. For maintenance I am on Pomylist 28 day cycles. Also dara a shot every week for 2 months, then twice a month for 2 months, then once a month for I don't know how long, maybe for ever. The doctor chose pomylist because I did not respond well with the revlimid previously. I receive 20 Mg of dex only on the days I get the shot.
I wish you the best.

posted 12 months ago
A MyMyelomaTeam Member said:

I tolerated for over 5 years,my side effects were deep veins blood clots twice,and severe diarrhea every day,but my onoglist gave meds that worked

posted 12 months ago
A MyMyelomaTeam Member said:

Praying that your WBC count starts increasing. Make sure you eat alot of protein.

posted 11 months ago
Already a Member? Log in