Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I would like to publicly express my deep concern for any ASPS patient that is taking Pazopanib or Dasatanib!

I am NOT a doctor! I am an ASPS patient an have lost loved ones that took these medications within less then a year! I can now count five… Some do not post here sadly you would have loved them also!

Many had similar situations happen

PLEASE read about these meds do NOT take them without looking into them deeply! Question your Onc's about other drugs an options… I pray i am wrong… But, this is what my uneducated eyes have seen an have drawn concern from not just myself but others!

I love my brothers and sisters that also sadly have ASPS an would expect them to share there feelings also an warn myself if they saw what these meds may have done to their loved ones!

Though everyone's experience is medically different with each drug it stood out to me an i had to inform others even if i am wrong...

This is what happened to one loved one...

http://www.cureasps.org/forum/viewtopic.php?f=59&t=723

Amanda, are you saying that multiple patients have died due to the side effects of the drugs rather than ASPS?

Can you provide more details please.

I think i was pretty clear...

I am saying that there have been a few patients that MAY have passed from what maybe the side effects of these drugs a few months after taking them..
Stability then no stability an then there is a lung problem.
Patients need to NOT just listen to the Onc they need to look into these possibilities an make an educated decision!
But, should be armed with as much information as they can ...
Three people that had ASPS died within a few months... I knew all three
Some maybe fine!
But, i wouldn't be a good person if i didn't share my feelings an the concerns of these drugs that others also share..

Yes, I have read Bonni's post about that one pneumonia death. However, you are saying there are now more such cases? Any more details on what happened to them? That would mean a very high side effect rate, as we simply don't have that many ASPS patients on these drugs as far as I understand.

We also have to keep in mind that people jumping on these could already be in a desperate situation having probably been disqualified from surgery, already been on cediranib, sunitib, etc with disease growth almost unimpeded for years and years. They could already suffer from poor lung function, which in itself could predispose them to pneumonia or other lung conditions.

What I also think is important is to go ahead and get the pneumonia vaccine as a preventative measure. I did!

Again this is to make sure that everyone knows to look into this drug before use! An understand that this maybe a problem...
I dont think the shot will help sadly!
I saw what this did to one person! For me this is my last choice in drugs...
Thats how strongly i feel! I want others to read look into it ask 1000 questions... then decide. For some it seems to be ok :/

Thanks Amanda for the kind reminder.

Ivan,
looks like a wise approach to have the pneumonia vaccine in advance. Do you have any concerns of the pneumonia vaccine impacting the lung mets? What kind of pneumonia vaccine did you have? As I know, there are many kinds of pneumonia vaccine.

Jorge wrote:Thanks Amanda for the kind reminder.

Ivan,
looks like a wise approach to have the pneumonia vaccine in advance. Do you have any concerns of the pneumonia vaccine impacting the lung mets? What kind of pneumonia vaccine did you have? As I know, there are many kinds of pneumonia vaccine.

I was not aware that there are different types. Olga advises that diff. types are given to diff. age groups and based on whether you already had the vaccination as a child. I took whichever one I was offered. Why would it have an impact on the mets? I wouldn't worry about that.