3 replies to this topic

[judithpiffner]

i am unable to take the TKI's anymore. I am now on Synribo. Best thing is that it only requires 1 week per month of chemo. worst thing is the side effects are difficult at best. Looking to find out how others have felt after using Synribo.

 

[Trey]

Judith,

 

The Synribo (aka omacetaxine mepesuccinate or homoharringtonine or HHT or Chinese pine tree sap) is not a good idea.  They give it to you for a while and then it stops working.  We already had this discussion:

http://community.lls...bo/#entry195241

 

You stopped the TKIs because of the side effects.  I know the side effects can be difficult.  But as you see, the Synribo side effects also are bad.  The difference is the TKI drugs were keeping you MMR, and now the Synribo may only keep you CHR for a while until it stops working.  Then all is lost.

 

I do not enjoy telling you this so directly.  The Synribo (the name makes it sound like it is actually something worth taking, but it is only a "salvage drug" to extend life for a short time) will fail after a rather short time.  It is a drug for those who have given up.

 

I would highly suggest you return to a TKI drug.  They worked for you, but had side effects.  The overall side effect of Synribo is that it leads you down a road to no return.  It is your choice. 

[judithpiffner]

Hi Trey,

 

     I appricate your candor. It is difficult to get that information without all the fluff. My doctor who determines my treatment works at the moffit cancer center in Tampa. My Dr there is Dr. Pinella. . After your last response, I did go back on sprycel, when my side effects became severe (heart function dropped to 33%) the doctors pulled me off that drug. Then they put me on Bosulif. When my blood work came back with increased liver enzymes, they pulled me off that tki. I went to Cancer center of America in Atlanta for a second opinion. The doctor there made the same recommendation to go on synribo. I was very upset about this because I do feel like the doctors have given up on me. The only bright spot was when the DR in Atlanta told me that he has a patient that has been on the synribo for 7 years with good success. As far as it coming from a tree, this is not concerning after all aspirin came from a shrub. 

 

You did hit the nail on the head as far as I do feel like I am on the road of no return. Many days it is difficult to not give up.

 

I will go back to my doctor to discuss other options including TKI.

 

Thank you for your candor. 

[Trey]

Often a TKI drug will induce side effects such as increased liver enzymes, but that should not result in taking the patient off the drug.  These drug-induced enzyme reactions (liver, pancreas, etc) are often not actual harm to the organ, but if real can usually be reduced or eliminated by taking a short drug break.  Your docs were far too quick to pull you off Bosulif.  I would restart Bosulif, if it were me. 

 

I realize it is difficult to ignore so many doctors.  But if it were me, I would.