4 replies to this topic

[JJR]

Hello,

It has been awhile. Just wanted to narcissistically lick my wounds in a public manner.  I have passed my 2 year mark from diagnosis, still have Ph+ present at 22% and my BCR-ABL/ABL ratio is 2.5578 with 5.9689 representing the median for newly diagnosed per the lab used.  I have been on Dasatinib (Sprycel) for 9 months since switching from Gleevec.  A mutational analysis did not produce results b/c of a lack of RNA amplification.  Still working with my doc to see why the testing did not produce a result. It may be sample size more than anything else. I finally saw a national expert, Dr. Shah at UCSF for a 2nd opinion (paid 500 bucks out of pocket) and saw the Standford BMT docs to see what they thought.  Plan is to see if I can get to less than 7/20 Ph+ by year mark (September) or a 2 log reduction. If I mutational analysis identifies a mutation, it is considered a good thing in my case since there is now coverage for most mutations.  No mutation = greater likelihood of BMT, or clinical trial with hedgehog signaling drug, or Ponatinib (Ariad).  Feeling down/anxious but also appreciated and encouraged by Beth G's great results and 2 year mark.  I hope this info is useful to some.  BMT mortality rate of 15% is scary but perhaps a bit better than what I previously thought it was.  20% of those that survive after 100 days from BMT will get chronic Graft-Versus-Host-Disease which is also a bit scary.  Given all of this, it is wise to play with drugs as long as I can but somehow try to avoid disease progression. 

On the positive front, I just rode 100 miles around lake Tahoe in the freezing rain to help raise 6.8 million dollars for LLS.   It was a bruiser but what a wonderful event. I will now ride for Livestrong in Davis, CA in July to also raise funds.  Got to keep exercising and keep hope alive for all.

I wish all the best in CML land.

JJR

[Samcerly]

JJR,

Just wanted to say I'm sorry your not getting the results you want and need!  Saying prayers something starts to change in the right direction for you or they can find something that will get you those results.  I am on Sprycel and will have a BMB on wed (3 month mark), so I will have my first real look at how things are going "in there" as well.  As far as your riding, way to go!  That is impressive and inspirational!  And thank you for helping to raise funds that we will all benefit from.  Best wishes with your next ride!  Please keep us updated on your progress, hang in there!  Samcerly

[Trey]

Last I knew you were taking 50mg per day of Sprycel.  Is that still the case due to low ANC?  If still 50mg, any way to get the dosage higher?  Neupogen, etc?  Maybe Sprycel twice per day?

If you are back on higher dosage, then the plan you outlined seems reasonable.  But if you can get to a higher dosage, that could be beneficial.

[JJR]

Samcerly,

Thanks for the response and the best of luck to you on your 3 month result.  Most people do great on this med, I hope to still be on it as long as I can.  Take care.

JJR

[JJR]

Thanks Trey,

I started at 100mg, took a med break with an ANC of 200, went to 50mg for several months then alternated 100mg w/ 50mg for about one month and now have been on 100mg once daily for 2.5 weeks.  I agree that I may need to give it more time at 100mg although the research has suggested that the dosages for Dasatinib are more critical when it comes to side effects vs. remission.  Still, I am trying to remain hopeful.  My ANC is holding steady at 1000 or above for now.  Perhaps a dose of 140 may even be a possibility.  I finally convinced my onc w/ research and Dr. Shah's input that avoiding medication breaks is critical; this may or may not involve neupogen.  If my ANC approaches 500, I will go that route.  I have a BMB scheduled in two weeks to see if I am making any headway.

Thanks for the comments, hope all is well with you.

JJR