[bodumene]

Is very low-dose dexamethasone effective?

by bodumene on Sat Jul 08, 2017 1:45 pm

Hi All,

I have been on an RVD protocol (Revlimid, Velcade, dexamethasone) for 5 months for multiple myeloma. After the fourth month, the kappa free light chain, which was 53 in January, went down to about 2, very close to the normal upper limit. As of June 30, the M-spike had disap­peared. So now the oncologist wants me to go on "maintenance".

Velcade was suspended a month ago due to developing neuropathy, so I won't be taking that.

Of the initial 3 drugs I was taking, dexamethasone created the most distressing side effects. I became extremely agitated, couldn't sleep, lost my mental sharpness, experienced aphasia, and my personality seemed to change (moods and emotional responses). I was not "me" anymore.

Each month I had a "drug holiday" for one week. At the end of that week, I would feel and act more normal. So for the maintenance, I wanted a decrease in the dexamethasone dosage. (The oncologist wants me to continue also taking the 25 mg Revlimid that I had been taking.)

He said for people 60 years old, 40 mg was a typical dose of dexamethasone. At 70 that dropped to 20, which is what I was taking. I had just become 80, so I suggested 12 mg (to be practical; I have 4 mg pills). He said OK, but I think he was a little uncomfortable, probably because I don't think there are studies using 12 mg, and he is an "evidence-based" physician.

Anyway, I find that 12 mg acts like 20 mg regarding the side effects, but to a satisfactory lesser degree. But I wonder if this dosage is strong enough to be effective against the cancer.

Thanks for your thoughts and any information you have about this.

Bodumene

[kerrirunnergirl]

Re: Is very low-dose dexamethasone effective?

by kerrirunnergirl on Sun Jul 09, 2017 4:13 pm

Hi Bodumene,

My husband had 6 rounds of RVD and light chains went to normal. He has been on maintenance of Revlimid 10 mg (21 days on/ 7 off) and has stayed in remission. He has never been on dexa­metha­sone during maintenance, only induction..

Hope this helps.

Kerri

[Janet1520]

Re: Is very low-dose dexamethasone effective?

by Janet1520 on Sun Jul 09, 2017 5:08 pm

I'm on 12 mg of dex for maintenance dose. Been on that for over 2 and 1/2 years. Previously, during induction, I was on 20 mg four times a week. Didn't like that.

[marett]

Re: Is very low-dose dexamethasone effective?

by marett on Wed Jul 12, 2017 7:45 pm

My husband takes 20 mg of dex every 2 months. He's been doing this for several years now and his blood work shows complete remission. He had a stem cell transplant about 7 years ago, then 3 years drug free and since then dex. The doctor isn't sure if he would come out of remission if he stopped dex but he feels it would be better to stay on it.

[torimooney]

Re: Is very low-dose dexamethasone effective?

by torimooney on Fri Jul 14, 2017 12:52 am

I asked for 12 mg of dex four times per month (instead of 40 mg) along with Doxil (doxo­rubicin lipo­somal) and Velcade for my induction therapy. I achieved a stringent complete response (sCR) after 8 months . My main­tenance therapy was 24 mg of dex plus Velcade twice a month, and I did that for two and a half years. I decided to discontinue the dex and now, 18 months later, I remain in sCR. So low-dosage dex was effective for me. Quality of life is my #1 priority, not length of survival.

[Little Monkey]

Re: Is very low-dose dexamethasone effective?

by Little Monkey on Sat Jul 15, 2017 8:43 pm

Congrats, Tori, on 18 months of stringent complete response.