[Terri]

Hi June, I am sure any of the doctors would tell your Dad to stop smoking even without the MDS. Can’t imagine that it would not be putting him more at risk. Bob smoked prior to being diagnosed, we both did, He was so devistated by the diagnosis he quit cold turkey I don’t know how he did it because he smoked more then I. But MDS really scared him, Even when he had a Small TIA years ago it did not stop him.
It was harder for me even though I knew I shouldn’t be for Bob’s sake but the nerves etc just got me. Especially at the beginning So I understand how hard it is for your dad . It is a terrible addiction.
I finally went to a hypnotist and stopped, However you really have to want to stop for the hypnosis to work.

Now if someone passes us that is smoking it really bothers Bob. I hope you can convince your Dad, however they are the ones battling this disease and sometimes no matter what we say it has to be there decision.
God Bless, I will keep you both in my prayers.

[Terri]

Alex, My prayers are with you, I know that there are no words I could express to make you feel better right now. My Mom passed away this January not from this disease but it still is so hard, I stil miss her. I have to agree with Russ and believe that we al will go to a better place.
May God Bless you

[Terri]

Here is info from the AA/MDS International Org page on this Looks like final decision could take til end of this year but for now all should be covered. Hopefully it is overturned for those that need these drugs.
Changes in Medicare
In March, the CMS opened a National Coverage Analysis (NCA) to evaluate the uses of ESAs in off-label or non-approved indications. CMS accepted all public comments submitted by April 13 (the end of the 30-day period), including those comments submitted by the Foundation on behalf of all bone marrow failure patients. On Monday, May 14, CMS issued its proposed decision memo in which it recommends, much to the surprise of the hematology community, not covering ESAs for anyone with MDS. The Foundation is now thoroughly examining the proposed policy and preparing its comments on the proposed decision memo. The Foundation intends to reiterate the scientific literature that shows the limited risks of and the valuable benefits of ESAs for people with bone marrow failure. In addition, AA&MDSIF will determine what additional actions will be most appropriate to help all with bone marrow failure get the treatment they need. All comments to CMS are due on June 13, and CMS will then review the comments and issue its final decision, possibly not until the end of 2007. Until a final decision is issued, Medicare policy remains the same, and Medicare beneficiaries with MDS should have any ESA treatments covered by Medicare.

[Terri]

Good site, however The link did not take me there directly just a little meneuvering. But excellent info
Thank you

[Terri]

prayers will continue

[Terri]

Maureen Dr tried to spread out the time in between at one point for Bob and it did not work, They put him back on the cycle of 4 weeks as called for and he got response. We have our ups and downs. but he is still on Vidaza and actually they just increased his dose he had one round at the higher. Our Dr thinks Dacogen or Decitibine is much harsher? Bob however is in a dilemma due to low plts. They can’t get them high enough to put a port in and he is running out of room for Shots, he has had to have some transfusions and everytime they put an IV in he gets large sores/blisters on his arm. His one arm is totally covered in blood blisters and can not be used. We have had large discussions on trying to get a port and it is just to risky for him.

[Terri]

Sandy, WBC’s are never low enough on Bob for that concern, He is just the opposites. The whites are always elevated. It is the is the plts and hgb they watch. They do watch the Granulocyte count whichi is connected to the whites and neutrophyls but so far he is ok on that end. Sorry I am not much help.

[Terri]

Thanks for the Info JS- I am almost positive they will be putting a port in before his next round only for that as well as any needed transfusions. He needs plts occassionally that is usually his problem and sometimes red blood as well. But we were excited when the IV was first approved and at the time the dr did not want to risk the Procedure to put the port in since Bob has had so many steps backwards, the Brain bleed (he recovered fully, I thank everyone for prayers, The intesttinal bleed and now He gets blood blisters from the Vidaza shots on his arms and on the areas where they insert IVs for Transfusions. So I am positive the doctor will be opting for the Port and he has guaranteed us he will boost the plts up before the procedure.

[Terri]

My prayers are with you, I can not even think how hard it is for a 15 month old and for you as a Mother. As the others suggested Billy’s page is a good start, Billy has come through wonderfully and his father I am sure can answer a lot of questions if you have them.
I will continue praying that you find that bmt match quickly. Does she have any siblings/
God Bless you and your family.

[Terri]

Bob has been on Vidaza since End of 2003 and a short period of 7 months off since but Just recently had his dosage increased as his Bone Marrow was getting packed and the disease progressing. We have so many ups and downs but the doctor still feels this is the drug of choice for Bob. The higher dose he definately felt a diference on his body, However His counts held enough for us to take a week vacation. We enjoyed it so.
We go Monday to see his counts again his Whites have come back down near 20 the Plts are the concern and I plan on direct donating as Single doner plts are much better but sometimes OUr hospitals can not provide it.

[Terri]

interesting reading, Thank you

[Terri]

Bob’s eyes Actually got a Hemotoma a bruise he woke up and his whites looked all bloody. I was a wreck. The doctor looked at it, Checked his plts and they were down to 29 for Bob when he gets under the 30 mark with plts he starts having problems even though some people do fine at that level. They transfused plts. His eye is clearing up now and Actually we just came back from a week of relaxing vacation (After the dr gave us the Ok).

[Terri]

[Terri]

Bluej, I am a caregiver, But my Husband Bob has been on Vidaza for several years. Its a mtc for him. If you see my user name and search some of my post I have documented on and off his updates which include so many ups and downs but He keeps fighting through them so Just keep a positive attitude, This forum has given me so much information.

[Terri]

Thanks all for the Support, My Bob is a Fighter His counts hung on today HGB 10.4 and Plts 41, Whites are down to 29 which is great for him. Doctor was very pleased with how he is doing at the higher dose. He said we may have to bite the bullet and Try putting in a Port so the Vidaza could be given iv. Patti he already said he would bombard Bob with plts, that is why he never considered it but if you saw the blistering he has where the IVs for the tx are his whole lower arm is covered. I take special care. And as the Doctor said Bob has been extremely fortunate that over the years he has not fought infections, (I have to knock on wood) I fear saying things that they may happen but he is on Levaquin all the time and he takes a lot of supplements for the Immune system. We are not changing a thing as far as the supplements at this point.
Look forward to a relaxing week. We will go in Monday for his Counts and away we go. Doctor said to Enjoy and we will
Thanks all

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