Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Jul 28, 2009, 05:03 PM
knstone knstone is offline
Member
 
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Kirby Stone's Personal Profile

Hi to all my MDS Colleagues.

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

http://www.marrowforums.org/profiles/Kirby_Stone.html

Keep a positive attitude as you fight these diseases.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
Reply With Quote
  #2  
Old Tue Jul 28, 2009, 09:45 PM
launch launch is offline
Member
 
Join Date: Mar 2009
Posts: 193
Kirby,
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!
Cindy
Reply With Quote
  #3  
Old Wed Jul 29, 2009, 04:39 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Thumbs up 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.

http://abstracts.hematologylibrary.o...urcetype=HWCIT

http://abstracts.hematologylibrary.o...urcetype=HWCIT

Kind regards
Birgitta-A
Reply With Quote
  #4  
Old Fri Jul 31, 2009, 04:27 PM
knstone knstone is offline
Member
 
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
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.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
Reply With Quote
  #5  
Old Sat Aug 1, 2009, 04:59 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Thalidomide

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
Birgitta-A
Reply With Quote
  #6  
Old Sat Aug 1, 2009, 09:39 AM
knstone knstone is offline
Member
 
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Promacta

I was able to obtain Promacta thru an arrangement with PromactaCare.com.
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.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
Reply With Quote
  #7  
Old Sun Aug 2, 2009, 06:16 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Promacta

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 ."
http://www.nplate.com/
Kind regards
Birgitta-A
Reply With Quote
  #8  
Old Sun Aug 2, 2009, 08:58 PM
knstone knstone is offline
Member
 
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Promacta information

Biritta,
Can you send a link to the Promacta info that suggests it might help leukemia patients? Thanks again for all your help .
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
Reply With Quote
  #9  
Old Sun Aug 2, 2009, 09:25 PM
knstone knstone is offline
Member
 
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Smile 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!!!
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
Reply With Quote
  #10  
Old Thu Feb 18, 2010, 06:07 PM
koyotekathy koyotekathy is offline
Member
 
Join Date: Jul 2007
Location: Phoenix & Flagstaff, Arizona
Posts: 12
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Alyse Booth's Personal Profile alyse Tell Your Story 20 Sun Nov 29, 2015 07:23 PM
Birgitta Alexius' Personal Profile Birgitta-A Tell Your Story 11 Sat Mar 28, 2015 12:40 AM
Andrea Pecor's Personal Profile Andrea Pecor Tell Your Story 4 Mon Feb 23, 2015 04:05 PM
New Member Profile: Kirby Stone Marrowforums Site Announcements 0 Tue Jul 28, 2009 07:57 PM
Ruth Cuadra's Personal Profile Ruth Cuadra Tell Your Story 0 Tue Aug 1, 2006 01:57 PM


All times are GMT -4. The time now is 04:54 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2019 Marrowforums.org