Moffitt Suggests Procrit

[Florida Gal]

I had another BMP at Moffitt last month and saw Dr Bruno for a follow up consult regarding my MDS RCMD-RS 20%. He is recommending Procrit to increase my red blood cells. This will be my first treatment since being in a watch and wait mode from July of 07.

I would like to hear from others about their experiences with Procrit. I will have treatment in the Orlando, Fl area.

Thanks so much for being there for me.

My positive thoughts and prayers go out to all of you.

[Dick S]

I too am 77 and I live in Florida about 80 south of Orlando. I've had the same problem, MDS RCMD, and been on wait and watch since 2006. I go to the VA in West Palm and they have told me Procrit will help me, but are reluctant to start it because of a mild heart conditions. I'm about to throw in the towel and head for Moffitt myself.

[Florida Gal]

Dick, good luck to you. I do believe in second opinions.

I see my local hemotologist on April 12th. She may or may not concur with Moffitt. I do believe I need to do something as my counts keep dropping.

I'll let you know if I learn of any other options.Fortunately, I do not have a heart condition.

All the best

[Dick S]

F. G., like you my numbers ever so slowly keep dropping down and yet I must "wait and watch." Here's why.

Even though I am with VA, I found out that if you're over 65 they (VA) can bill back Medicare for re-imbursement to keep their (VA) budget low and therefore Medicare can then dictate to VA what they can and cannot do and they must follow the Medicare standards. Medicare has no budget and gets new money every month from paychecks. But, as you know, Medicare is in trouble and trying to save money everywhere.

Eventually you and I will probably end up on Vidaza or Dacogen (not Revlimid it is mostly for 5q deletion) and then it gets real expensive real fast, tens of thousands per month. So you see, it's a numbers game and how they can get out this with the least cost to them, not us. Keep a close eye on Medicare and whatever insurance company you have and make sure they don't play games with your health for their own interests, not yours. It's our lives and we have to keep fighting for it.
Regards..........................Dick

[milliken2]

Dick;
Have your hematologist order the dose of Procrit he thinks you should have - and then take the scrip to the V.A. My husband - unfortunately - has been recently diagnosed with Stage 4 MDS. He just began tratment with Dacogen. But - our Hema ordered the Procrit long ago - before the MDS was actually diagnosed - and as long as he thinks it is needed - the V.A. said they will provide. I know it is VERY expensive to pay for outright - we couldn't have afforded it, even with the insurance he had when we was working. Another option is to see if the Hema would give it to you directly in his office - but don't hesitate to push all the buttons. Good Luck to You.

[Dick S]

Thanks Beth. My problem is my hematologist is in the VA. As I explained in a PM to Florida Gal if I don't get some relief from them soon, I'm just going to go to Moffitt Cancer Center on my own with Medicare and let the chips fall where they may.

[Florida Gal]

I was informed by my hemotologist that for medicare coverage of Procrit, my HGB count has to be under 10 when I start treatment.
.However, if I stop treatment of Procrit, I would need to go through the same procedure again.

[Dick S]

Originally Posted by Florida Gal

I was informed by my hemotologist that for medicare coverage of Procrit, my HGB count has to be under 10 when I start treatment.

F Gal, that's the same run around I'm getting. My numbers hover just a hair over 10 by a tenth or so right now, but one time it went below 10 and they told me the limit was changed to 9! Bet if my number ever gets to 9, they'll change it to 8. They hate parting with money as long as you can still make it around in one piece. Now you know my frustration.

[Rich D]

I was told I had MDS back in 2007. It was by a doc who was not an oncologist, and I basically ignored him. In 2011, I had a CBC ordered by my PCP. He referred me to FL. Cancer in Spring Hill, FL.

I took Procrit 20,000 for about three months, got discouraged and stopped.
Near the end of 2011, I was again referred to FL. Cancer, had a bone marrow aspiration (Not the most fun you'll ever have) take the knock out drug, I didn't and it's very painful.

Started Procrit again at 40,000 level, then 60,000 for about six months. Nothing much happened, although many of my blood counts were up and down and all over the place. Even my body temp went all over, which had never happened except with sickness, and my blood pressure jumped around.

My hemoglobin fluctuated between 10.5 and 8.8. Usually in the nine somewhere.

I felt fine taking it once a week, but it was not effective for me. I just started my first week of Vidaza, but that's another story I'll get into in future posts.