[Jburton]

Father starts Revlimid next week

by Jburton on Wed Oct 07, 2015 3:07 pm

Hello,

My father was diagnosed with multiple myeloma in March 2014. So far he's doing good, he will be starting the medication Revlimid next week. He's 77 years old.

My greatest fear is that he will refuse to take the Revlimid because he feels great at the moment and may feel no need to take it.

[Grizlump]

Re: Father starts Revlimid next week

by Grizlump on Thu Oct 08, 2015 7:43 am

Sorry to hear about your dad. I am 69 years old and had a plasmacytoma in my rib about 5 years ago. After 25 hits of radiation therapy, it was taken care of and I went into a holding pattern, getting regular bloodwork every few months.

I know where you are coming from with your fear that he will not take his medicine. I never knew I was sick until they told me. It was originally based on blood numbers and that led to x-rays and bone marrow biopsy and all that led to chemo therapy.

I did the usual rev, vel, dex thing until the side effects of the rev (extreme diarrhea) caused me to loose 45 lbs over 4 months. If your dad does not suffer bad side effects, or if he is a lot tougher than I was, there may not be much of a problem.

I resented the intrusion into my life all for something I could not detect on my own.

Eventually I came to realize that if I waited for the usual symptoms to appear, I would have been a lot worse off. Many patients tell of how they discovered they had this curse. Like driving along and having their spine collapse or bouncing the grandbaby and feeling their ribs crack. I have been lucky enough to avoid all that so far and am now on a shot of Velcade every two weeks. I decided against the stem cell transplant and decided to play the quality of life card. Hell, I have 2 stents in my ticker and only one kidney as it is.

Bottom line is you may need to convince Dad that the eventual results of not taking the medicine can lead to an early trip down the wrong road. In the end, it is still his decision. My mom was 80 years old when she got honked off and threw away all the pills (12 a day) she was taking. She lived another 13 years but then, she didn't have this disease either.

Charlie in Illinois.

[Joneman]

Re: Father starts Revlimid next week

by Joneman on Thu Oct 08, 2015 9:49 pm

A wise man once said to me: If the fire in you house is just smoldering, do you wait to call the fire department until it's raging?

Translation: Since multiple myeloma is incurable, the best thing one can hope for is to slow it down. Multiple myeloma is easier to manage if the numbers are low rather than when the numbers are high and in the panic zone.

[cjwells]

Re: Father starts Revlimid next week

by cjwells on Fri Oct 09, 2015 8:19 pm

I too felt good and was reluctant to start any treatment, then my labs were so high my multiple myeloma specialist told me if I don't do something soon, I am going to end up in my own ER (I am an ER nurse manager) in kidney failure and needing dialysis. That scared me more than the multiple myeloma.

I started in 2013 with Revlimid and dexamethasone with minimal results, so switched to Velcade (shot), Cytoxan (cyclophosphamide) and dexamethasone. Numbers went down ( partial remission), so my oncologist put me just on Velcade maintenance, then had to add the dex back as my numbers started to rise again. I am anxious to see this month's tests, which I have drawn on the 19th.

So – best not wait too long for treatment. I still work full time as the ER nurse manager and have missed work only for the stem cell harvest. I have not given in, yet , to the transplant. I see my multiple myeloma specialist at Mayo on November 6th.

God's speed to you and your father and wisdom to make the right choices for him. Each of us are different, so no cookie cutter treatment or decisions. All are individual choices.

Connie