[Victor L]

Migraines & other pain during off week of treatment?

by Victor L on Sun Feb 26, 2017 4:08 pm

Hello everyone,

As many of you know, I am currently being treated with Pomalyst, cyclophosphamide, and dexamethasone for my relapsed multiple myeloma. I've been sharing my experiences during the treatment regimen in the forum thread:

"Pomalyst, cyclophosphamide & dexamethasone treatment" (started June 29, 2016)

My treatment cycle is 28 days, with the final 7 days being a rest period. In recent months I have experienced symptoms such as migraine type headaches lasting around three days combined with aching neck muscles and general aching of joints and skin sensitivity which do not respond well to the painkillers prescribed by my hematologist for this purpose.

All of this seems to start around day 24/25, roughly 3 days after the last day of treatment. It is quite tiring and continues until day #1 of the next cycle, when I take the three medications in the morning and the aforementioned symptoms will fade completely by early afternoon.

During an extended 'rest' period, for example due to infections, the withdrawal symptoms seem to clear up unaided within about 10 days, presumably by which time the body has cleansed itself of undesirables produced by the previous treatment ?

I have heard very little about problems of withdrawal symptoms and wonder if others had come across this.

Best Wishes,

Victor L

[DallasGG]

Re: Migraines & other pain during off week of treatment?

by DallasGG on Mon Feb 27, 2017 11:39 am

I'm on a 28 day maintenance cycle. I take 10 mg Revlimid per day, 21 out of 28 days, and 8 mg dexamethasone once a week, 3 out of 4 weeks. 95% of the headaches I get (which aren't very severe) are on my off weeks, usually the last 3 days of that week.

I'm fairly certain that I experience some sort of withdrawal simply because almost all of the head­aches I get are during my off week. I'm guessing that going off the dexamethasone for one week causes the headaches. I suppose that I could be experiencing some sort of withdrawal from the Revlimid, but I haven't been able to find any information that links headaches to Revlimid with­drawal.

[marett]

Re: Migraines & other pain during off week of treatment?

by marett on Mon Feb 27, 2017 4:23 pm

I am sure you are experiencing dex withdrawal. My husband is on dex for 4 days every 2 months; 4 pills every day. He never gets headaches except when he is coming off of dex, and his headaches are wicked.

[Margie C]

Re: Migraines & other pain during off week of treatment?

by Margie C on Mon Feb 27, 2017 8:32 pm

My oncologist has always had me on dex every week. I take Revlimid 21 days but always dex every week. I still feel a little worse the first 3 days of no Revlimid

[Victor L]

Re: Migraines & other pain during off week of treatment?

by Victor L on Sat Mar 04, 2017 9:01 am

Thank you DallasGG, Marett and Margie C for sharing this information, it has certainly cleared up a little mystery for me. Best Wishes from Victor L