Slowly raising my hand...I'm a T315i CMLer...I need to start my own thread...thanks for posting this info Trey.

Hi Mic,

This is the Omacetaxine mepesuccinate (semi-synthetic homoharringtonine, HHT) Trey refers to in his post above - if you follow his link it contains some detailed results on how well it's been doing - promising, but a long, long way from a 100% treatment.

Survival rates for transplants have improved greatly in the last few years, but it's definitely not a walk in the park.  Have you talked to your doctor about why he doesn't want you 'wasting time' with any more drugs?  Are you still in chronic phase?

You're faced with a difficult decision between going straight to transplant or trying a clinical trial first, but it is still a decision.   The key questions you need to ask your dr are:

• What clinical trials are currently available in NSW and how promising are they? (If your dr doesn't know then get a second opinion!)
• What are the risks of delaying transplant to try a clinical trial - can you afford to give one a try with transplant as a fallback position?

Best of luck and keep fighting

Phil

Hi Mic

I'm not aware that we have anyone on here who has any direct experience of Omacetaxine and I'm not a doctor so I can't advise you one way or the other. All I would say is that even though you have the offer of the drug that's no use unless you can find a medical team who you trust that are prepared to give it a go and monitor it closely whilst you search for a donor.

If you do get to try the Omacetaxine and get positive results then there will be a constant series of decisions to be made on whether the results are good enough to keep postponing transplant. You'd need to be confident in your team and to weigh up the likely success rates very carefully.

Whichever route you end up going I wish you the very best of luck and please keep us informed.  Sorry I can't be of more help.

Phil

Hi Mic,

I can understand your concerns, but the point in the article about it not being applicable to blood cancers (like CML) does make sense.  If you do end up needing a BMT the whole point is to completely eradicate any vestige of your current stem cells as the only way to get rid of the CML.  This means you won't have any immune system left to do any rejecting of the new cells.  Post transplant you should be 100% donor immune system.

With BMTs the key problem is not to stop your old immune system from rejecting the donated cells, but to stop your shiny new immune system from 'rejecting' the rest of your body - GHD.  Fortunately they are getting much better at this!

All the best and keeping my fingers crossed that the drugs mean you never need a BMT anyway

Phil

Interesting to see that Omacetaxine is now being referred to by a trade name 'Omapro'.  Could be a sign it's about to go mainstream.  If so that's great news for people with this mutation.