Cancer drug Gleevec being used to treat PH

[Nancy]

The cancer drug Gleevec is being used to treat intractable pulmonary hypertension in Stage 4 patients who have failed to respond to Tracleer, Flolan, Viagra, Remodulin and other PH drugs. It is being used at this point as a drug of last resort.

The patients are in Germany. Gleevec works by blocking the overproliferation of vascular tissue which is a cause of PH. In this respect it is quite different than other current drugs.

One man who was is very serious condition went from Stage 4 to Stage 2 within 6 months. And it is being used on twenty other patients in Germany.

It seems to hold much promise for those in end stage PH.

 

[bvdr]

Nancy, that makes sense that Gleevac could work with PH. From what I read it is the over proliferation of tissue that ends up making PH no longer manageable.

How long has Joe known about his PH? Was it from symptoms or from pressures noted on echoes (or maybe pluralized ECHOS....neither one is a recognized abbreviation so maybe it doesn't matter ) and caths. How far back do you have his records. Geebee and I have had some questions about PH as of late and whether it can ever go away. I think we agree that if it is secondary PH and the offending cause is removed than it might well go away for good. But, what if it doesn't? Is it then regarded as PPH?

I've been researching the PH specialists here in NC and it seems we have 6 or 7 and I have found one that I'm thinking of making an appointment with for an evaluation. I wonder if there are any trials with Gleevac being conducted in the US. Is Gleevan a drug that is less costly than some of the others used for PH?

Thanks for being knowledgable in this area and willing to share with us.

 

[Nancy]

Joe has had PH for a lot of years, I do believe. Way back when, when I was not so savvy, we didn't ask for copies of anything and trusted all medical people to be all knowing. I'm not sure anyone would have known what PH meant then (his former card. as well). I've since learned that we are all human beings, and some make mistakes, or just don't know. It became life threatening in 2001 and that's when we were told how severe it was, and in the same breath, we were also told that there was a specialist nearby, but because Joe's was secondary, there would be no treatment for him, and this guy wouldn't take the case.. Fortunately, I don't believe in the "no treatment" phrase, and preferred to have the "man" himself face us and say that he couldn't do anything.

I emailed this doctor, and got an appt within the week. At the first appt. Joe was admitted right into the hospital. He was in a wheelchair at the time. I had all of his records with us. It took a long while and lots of testing to rule out any causes. Sure, he has heart and lung problems, but they were not contributing to the PH in a major way, since they had been fixed up. So the PH was deemed primary, since there were no obvious culprits. And believe me, they looked very, very carefully. And yes, this doctor COULD and WOULD help Joe. So much for listening to nay-sayers.

So, I urge anyone here who is in any doubt at all about your PH diagnosis, and the fact that it's "secondary" to hear it from someone who sees PH patients all the time. They may have a very different view of things, and yes, there are treatments available which will make you feel much better.

The Gleevec, at this time, is being used in Germany as a drug of last resort. But it is quite an interesting thing. And something to keep our eyes on.