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knstone Tue Jul 28, 2009 05:03 PM

Kirby Stone's Personal Profile
Hi to all my MDS Colleagues.

I've written my Personal Profile regarding My Journey with MDS.

Keep a positive attitude as you fight these diseases.

launch Tue Jul 28, 2009 09:45 PM

Thank you so much for such a wonderful & detailed profile. I'm so happy you're doing so well! You are an encouragement to all patients & caregivers!

Birgitta-A Wed Jul 29, 2009 04:39 AM

Epival or Zolinza
Hi Kirby,
Thank you for a very interesting Personal Profile!

I wonder if your doctor has proposed some of the histone deacetylase inhibitors (HDAC inhibitors) perhaps together with Vidaza or Dacogen. There are HDAC inhibitors lika Epival (valproic acid) and Zolinza (vorinostat) that are approved for other diseases so you can get them "off label". Some members of this forum had very good results with these drugs.



Kind regards

knstone Fri Jul 31, 2009 04:27 PM

Hi Birgitta
Thanks for your post of the information. Dr. Macejewski at the Cleveland Clinic mentioned the use of Valproic acid with Vidaza and said we might add it to the Dacogen if I responded to either drug.

Unfortunately I have not responded well to either Vidaza or Dacogen, each lowered my blood counts with no real recovery after each cycle that was sustained. While both seem to help many MDS patients I think around 50% do not respond and I may be in that group.

I had such a good response to Thalidomide in my initial treatments that my doctor here in Cincinnati, OH, decided to try it again. It has shown some slight improvement in the Hgb. We are hoping for it to work again, perhaps it's a long shot but worth a try.

I'm also taking Promacta (elthrombopag) for my platelets. It seems to have helped somewhat but no major gains, I'm stable in the mid teens on platelets with no bleeding.

I hope you can get treatments for you MDS soon, we all appreciate your insightful comments.

Birgitta-A Sat Aug 1, 2009 04:59 AM

Hi Kirby,
Thank you for the kind words!

Hopefully Thalidomide is a good decision.

Very interesting that you are treated with Promacta - I thought that they have strict rules for Promacta (and Nplate) so that only patients with Immune Thrombocytopenic Purpura could get these drugs. It must be much better to take Promacta than having platelet transfusions.

You know I told my doctor initially (May 2006) that I only wanted supportive therapy as long as possible since I am so afraid of adverse reactions. I am asymptomatic with transfusions, iron chelating therapy (Desferal) and Neupogen for my low white blood cells.

I tried the iron chelating drug Ferriprox (not approved in the US) but it decreased my white blood cells (a well known adverse reaction) so I had to stop taking that drug. Perhaps I am going to start with Exjade since Desferal isn't working so well after 2 years - I have received 94 units of blood.
Kind regards

knstone Sat Aug 1, 2009 09:39 AM

I was able to obtain Promacta thru an arrangement with
A multi page form is filled out by the patient and the doctor, it is somewhat like a mini-drug trial. The doctor is required to FAX some info on the patients response at 6 months, blood tests for liver functions are required. GlaxoSmithKline has made this available which is very nice, Nplate by Amgen cannot be obtained for MDS patients. Promacta is a capsule that is taken daily making it convenient.

I had to purchase the drug which is quite expensive, Medicare part D is my drug plan so I ran thru the "donut hole" of approx $4500 with the first Promacta and thalidomide prescription.

The results are not conclusive at the moment, some indication that it is helping. I've seen no side effects from the Promacta which is taken at night.

Birgitta-A Sun Aug 2, 2009 06:16 AM

Hi Kirby,
Thank you very much for the info about the possibility to receive Promacta when you have MDS. Promacta can decrease leukemia cells in tubes so it can be a positive drug for MDS patients :).

FDA is warning patients with MDS to get Nplate since the drug can increase blast cells:
"Worsening of blood cancers. Nplate® is not for use in patients with blood cancer or a precancerous condition called myelodysplastic syndrome (MDS). If you have one of these conditions, Nplate® may worsen your cancer or condition and may cause you to die sooner :(."
Kind regards

knstone Sun Aug 2, 2009 08:58 PM

Promacta information
Can you send a link to the Promacta info that suggests it might help leukemia patients? Thanks again for all your help:) .

knstone Sun Aug 2, 2009 09:25 PM

Hi Brigitta
Sorry about name error on the last post.
I did a Google search and found info from you to an ITP forum with
the info on Promacta so you can ignore the prevous request.

Can you obtain Promacta since it is from a British drug firm?

Thanks for your help and information, you are great!!!

koyotekathy Thu Feb 18, 2010 06:07 PM

Kirby's One of the Best!
Paul and I are so grateful to have met Kirby and Nancy at an AA/MDS conference in Las Vegas a few years ago. We are from Phoenix and were so surprised to hear there was a wonderful cancer center in our very own state. We were very unhappy with the hematologist we were using and thought we would have to travel to Stanford's MDS Center for help.

We went down to the Arizona Cancer Center and found the kind of care we were looking for. I might add that we have a friend who was found with stage 3+ ovarian cancer a couple of years ago who credits the ACC for saving her life.

Kirby has been so very generous with whatever information he has on hand. His spreadsheets recording his progress are amazing. I have encouraged him to prepare a small booklet for others on how to duplicate them for their own use.

Thank you, Kirby and you, too, Nancy. You make the world a better place!

Kathy & Paul Ulrich

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