Cost of Revlimid!!!!!!!!!!!

[JSRN]

Mom is currently on Vidaza. She will begin her 6th course next week. Her oncologist doesn’t think it is working. Her Hgb falls rapidly and last week she said she would rather die than feel the way she did. He did a BMB last month and said he didn’t get enough to run the chromosome analysis. He wants to see if she can take Revlimid. Well we looked at the cost and it is outrageous! $260 per day. She has Medicare and AARP. Her SSI is $2000/month. So what does she chose, food or meds?
Anyone on this drug, can you tell me how it is covered?
He also wants her to take Ex-Jade. Her ferritin level is 5000, but that is actually a decrease. She gets Desferrol whenever she gets a transfusion. That will cost her $3000 a month. And now after reading side effects and warnings, we don’t know if she should even try it. And the oncologist at my work said it is “nasty” stuff. He also said he has only had “some” success with Revlimid. It is one thing to pay these prices it is another if there isn’t much chance of them working. At this point I am not even sure if it is worth doing the BMB again. He wants to do it in the sternum. Ugh, I remember that as being so painful when I assisted. Younger oncologists won’t even attempt them there.
If she choses to go ahead with the Revlimid, should she wait a while to “rest” her body after just doing Vidaza for 6 months? She has not felt good ever since starting all this chemo. At least before the chemo she had some good days and her whites and platelets were okay.
And suggestions from the group?

[lillian1919]

Hello
I am new to this site. My Mum will be 88 this year and has MDS, she was diagnosed 4/07. She has been having transfusions and Aranesp injections but this past week the oncologist stopped the injections as they were not helping. Now she is having labs every other week and transfusions as needed. In the beginning the MD talked about Vidaza but now he is not. My mother has many other issues and because of a complicated illiostomy, she is not able to be nausea without getting very sick. So far her medical costs have been covered by Medicare, her secondary insurance has not had to pay yet. I was wondering if the insurance companies stop paying ( they seem to have a lot of rules about elders) but was afraid to ask the question.

[Zoe]

If she goes to the hospital for the meds, the hospital may pick up some or all of the cost. I have to do this with my Aranesp. No way could I afford it. My insurance picks up most of it, and the hospital covers more. It is the only way I can do it. It means filling out forms every month, but at least I can get my meds.

Zoe

[JSRN]

I checked into mom’s AARP plan Medicare D. After all the initial costs, the gap payments, she will have to pay close to $10000 and then the cost would be $375 per month. Come January, it would start all over.
The cost is ridiculous but how can one not give it a try when it is showing to be so effective!

[JSRN]

Mom’s BMB came back to show she does have -5Q chromosome abnormality. So she is a candidate for Revlimid. She just finished her 6th cycle of vidaza. Her HGb was hanging there at 10.9, 10.7, 10.2 then dropped in one week to 9.2. She is not sure she wants to start the Revlimid. She told me the day of her BMB that she was thinking of stopping all treatments. She is tired of feeling tired and sick of being sick. Her life is going to doctors and hospitals, getting blood work, blood, chemo then coming home to sleep. Her oncologist had a fit, as I knew he would and said why, your counts are doing okay. She keeps dwelling on the cost of the Revlimid and the side effects.
Maybe the Vidaza will kick in and she won’t have to make the decision.

[LuAnn]

Hi,
Sorry you and your mom are going through this. My dad has MDS/RARS and has been treated with initially neupogen and procrit shots, then Vidaza and is about to start Revlimid (5mg every other day). While the Vidaza did bring up his HGB level it also increased the frequency of transfusions and made him very sick and tired. So there was a decrease in quality of life. Following that the dr. stopped neupogen and procrit because they enlarged his spleen to a dangerous size so for a while he has been on nothing but transufsion dependent, one every two weeks or so. He was He just started 5 mg of Revlimid every other day. He is not 5q but we have a friend who also has MDS and is not 5q and the Revlimid has made him transfusion free. My concern is it’s so toxic and dad is frail it can really affect him. We haven’t worked out the insurance yet as we are trying this for a few weeks to see if he can tolerate it. In Jan he was on 10mg Revlimid daily but it was too much for him and he had to stop. Hopefuly the reduced dosage will help. While I’m not a doctor, I believe we are the patients advocates and I recommend waiting a while to get the Vidaza out of your moms system before stating the Revlimid. We waited till my dad’s CBCs were almost normal and he was feeling better. We spoke to the dr. and he was in agreement with us waiting. Good luck and keep us informed.

[Teresa]

You are right the cost is staggering. My Mom received both Vidaza and Revlimid. We were given the names to different foundations that help pay for for the treatments. Then Mom Medicare picked up the rest. You need to as your Dr or their assistant for the foundations that are available for aide.

Good Luck

Teresa

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