revlimid

[bhanson]

As I understand it, Revlimid was approved by the FDA on October 7, 2005. According to the statitstics, low risk MDS patients had a 60% improvement rate as compared to a 20% for low risk patients. However, my doctor wants to wait until I get worse to treat with this drug. Right now I am low risk. I have been able to keep my RBC up with the use of Aranesp, but my whites are at 1.9 and my platelets are at 49. No abnormality in chromosomes. Has anyone had experience with when to start treatments with the newer drugs? I appreciate your response. Thanks, bhanson

[Naomi]

Hi Bhanson:
I am on revlimid and it is my understanding that when it comes on the market it will be offered to people with 5q- and currently receiving rbc txs. It is supposed to be strictly monitered.
I am sorry to be a “wet blanker”. So many people are wishing this to be the drug to help all of them and I wish it was, but from what I have heard it will not be that.
Sorry it isn’t better news.
Naomi

[bhanson]

Dear Naomi, Thanks for the heads up. I guess the revlimid is now supposed to be on track for Jan. 2006. I am so glad that it can help you, and perhaps they will soon get it okayed for more of us. Thanks again. bhanson

[Sandy L]

bhanson
We are all waiting for the approval of Revlimid. It gives us hope that there is another drug out there that might be more effective.
Juice for the platelets…………. and for the WBC you can take Neupegen Shots

[PhyllisA]

Hi Sandy

I have been doing injections of procrit (20ml)since 8/15 daily the highest my RBC has got was 3.68,RBC@3.07,HCT now 25.8 &plallet down to 66
FRI I started the neupogen injections but twice a week and low dose @ .25 your husband is the only other person i have been able to find on this forum thats doing these two injections wishing you both good health

Ron from MI

[patti]

Ron,

My MIL takes two neupogen shots a week. They actually wanted her to take 3 but because we live so far from the doctor he relented to just two. If she gets sick at all he said he’ll make her take it daily for a week or so. Mom’s neup. shots are 480mg.

Patti

[PhyllisA]

Hi Patti

Between my wife & myself we do our own injections at home of both the procrit & neupogen now my neupogen has 300mcg on the box and the syringes are pre filled w/.50 so I have to drain 1/2 of it out

Dose your M I L do her own injections or someone else in her home? or go to the doctors? How far away is the Drs?

I get to go in tomorrow for a TX made it 31/2 wks this time

Well GOOD HEALTH to your M I L & you & your family

Ron

[patti]

Hi Ron,

Moms neupogen must be 480 mCg. Not mg. Sorry. I would LOVE to do mom’s injections at home. We’ve been trying all year. Her medicare plan only covers them being done in a doctor’s office. We drive an hour each direction on tuesdays and fridays. The shots cost us nothing when we do this. We did find out with the new prescription drug program that they will cover for her to give the shots at home. The only thing is that the shots are so expensive she’d end up putting out $15K a year in deductibles and copays to do them at home. Although she can afford this (fortunately) my husband told her no way because it’s still too expensive. I of course, would rather she put the money out so I don’t have to be away from home and my kids so much. It’s a little difficult to homeschool when you’re only home 3 days a week! I’m making it work but it still would be much easier if I could give them to her at home.

I’ve been wanting to ask someone how much these shots cost from a pharmacy? We were told the neupogen is $1000 a shot and the procrit is around $500. Is that right? That’s what we’re basing our out of pocket expenses on.

Mom usually goes 4 weeks between transfusions but she is going in this friday. Only been 3 1/2 weeks.

Ron, it must be very hard to have been transfusion free for so long and now have to have transfusions again. I guess it’s good at least transfusions are available, huh?

Best Wishes,

Patti

[PhyllisA]

Hi Patti

One hour is not to bad at all thats what mine is appx and dont forget you can also deduct so much per mile on your medical expenses for the year

The pharmacy receipt shows $7,750.00 for the last 30 days supply of 20000/ML procrit I got and the 10 preloaded syringes of neupogen shows $2,211.00
BUT I have a 18yr old BCBS medical plan that has just $10.00 copay so I am very very lucky even if I do have to make those $595.00 a month INS pymts

[patti]

Phyllis,

I just now saw your answer to my question. Sorry it took me so long to get back to you. Thank you for the information on cost. That’s a huge help. Man alive, mom would never pay the $7750 out of her pocket for the procrit when she could get it done for free at the doctor’s office. It’s nice you have insurance for that. Also her procrit is 60,000/ml shots so it’s probably even more spendy. Oh well. As usual, we’ll never be able to take advantage of one of those darned entitlement programs.

thanks again.

patti

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