AA/MDS Patient Conf in Las Vegas was Great!!

[knstone]

The 2007 AA/MDS conf in Las Vegas was the first one my wife and I attended. It was very encouraging and informative. The doctor's presented much information which was informative. Meeting so many other patients with MDS, AA and PNH was encouraging, patient forums were informative and one could talk with others on how their treatments were working. You meet newly diagnosed patients and also some who are successfully living with these diseases for several years.

Next year will be in Washington, DC. We will definitely be there.

We would encourage any bone marrow failure patients to attend if possible.

Kirby Stone, RAEB-2, On Revlimid for 8 months with great success.

[Zoe's Life]

Kirby,

Thanks for sharing. What was your favorite part? How about some details?

DC next year, huh? Maybe I can actually go.

Zoe

[knstone]

Hi Zoe,
It's hard to say what was the favorite part. Meeting other patients was one of the best parts. The Patient forums allowed you to hear others experiences, treatments, etc. Then you could ask them questions later or encourage ones who were newly diagnosed.

The Doctors parts were also good. Dr. Gore from Johns Hopkins was not only informative but entertaining. He could add humor to a difficult subject.
He is working in a trail of Vidaza with a 2nd substance called MS275, it seems to help some advanced MDS patients. Another trial of Vidaza with Revlimid was mentioned, but no details.

There were several Revlimid patients who are having a good response, including myself. One man has responded for 48 months, I'm shooting to go that long or longer. Many of these patients were not -5q, yet they responded to Revlimid, I'm in that boat.

Have you considered Revlimid, you seem like a good candidate. It's side effects are minimal and it can raise the Hgb. Mine is currently 14.5.
I feel great.

The Conf provides 3 meals a day where you can meet others easily.
IT was very professionally presented.

Hope to see you next year.

[Zoe's Life]

Kirby,

Revlimid will be my next drug of choice. Currently Aranesp is keeping my hgb in the 11 range. I like my afternoon break every day, but I function pretty well in this range. I am not sure how I will pay for it though. Because I get my Aranesp injections at the hospital my insurance covers it. But once I go on pills I am not sure they will cover it as my perscription plan is horrible, non-formulary only.

Zoe

[ccartbmw]

Hi Everyone that attended,
It was a great conference. Had alot of questions answered that I did not know. Now, which is the answer to go with. If you have a match sibling for the transplant,would it be the answer?(Do not know how much of a match) Or another round of ATG. My levels are heg 8.5 plat. 44 white 2.5 netophil .09. I did not know ATG was not a cure until the conference. Have had the diease since 2005, came out of remission 5 months ago. Doctor uped cyclosporine to 250 at that time. No response yet. Should medicine have started working by now. Forgot to say had ATG in March of 2005 hospital did it wrong.

[breitenr]

Regarding Zoe's concern that an oral Rx may not be covered by the plan...

Most companies have patient assistance plans to cover patients whose payers don't cover certain drugs. In many instances it is easier to get free drug than it is to get help making a copay. IE - if it is not covered you get if for free but if it is covered but you can't aford it more documentation (income etc) may be required. Also, when receiving drugs in the office as an infusion or injection you may be able to get the drug for free from the manufacturer but there is still the administration costs as well as the cost of the supplies (esp if it is an infusion - chair time, rn time, tubing, bags, saline etc.) Sometimes offices cannot aford to eat these costs and a patient may miss out on a particular rx. With an oral, there may be less resistance to helping get you onto therapy because free rx does not cost the office anything. This is not meant to be negative towards physicians but some small private practices cannot provide free support services even when they want to.

Bottom line - the drug companies want you to use their drug. If you do and it works (even if the drug was free) it may help your doctor become more comfortable with the product and eventually s/he will prescribe it to a patient whose plan will pay for it. This is even more true when a rx is new to the market! Ultimately it is up to you to ask for the help. The nurses are great but always overworked, the doctors know the clinical stuff but have no idea how to get the drug and the office manager is often tied up with the "big picture" issues. All mean well, but you have to take charge. Good luck!

[Zoe's Life]

breitenr,

Thanks for the info. The cancer clinic I go to is actually pretty good about helping me with some of this. They were really helpful is hooking me up with the Healtwell Foundation who awarded me $5000 towards my Aranesp. Also, the local hospital where I get my injections has picked up the cost after the insurance that I can't afford. Right now, since my medical bills have topped 10K this year, I have no deductible until January. Then the Healthwell Foundation will pick up for a few injections, then I will be back to finding more aid. I do have a list of foundations which help when they have the money.

I did find that Amgen has a program that would have helped with Aranesp if I had no insurance, but they turned me down for co-pay assistance.

Sometimes, getting assistance for medical bills feels like a full time job.


Zoe

[koyotekathy]

I went home and immediately incorporated the functions you had used on your Excel spreadsheet and it makes much better spreadsheets. Simplifies the data and makes it easily understandable.

If any of you out there have not tried to track your blood tests on a spreadsheet, I would encourage you to do so. It really helps showing trends.