9 replies to this topic

[tlb3868]

We just got a call from his Onc he says he is gleevec resistant and is switching him to Iclusig. I'm confused by what I'm reading about it. I guess I'm just wondering why he has not tried sprycel. He did try tasigna for a short time but had uncontrollable blood pressure and was taken off it. His onc said he was putting him on sprycel after he got an ultrasound on his heart which he did and it came back fine. Now his doc switched him to iclusig instead. Does that sound normal?

[Billie Murawski]

Maybe it's because of his blood pressure, I'm on Sprycel and I am having bp problems for the first time in my life. I'm down to 20mg S a day but I still have to take 2 different bp meds a day. Hope the Iclusig works out for him.  Good Luck Billie

[Trey]

In previous posts you have described how your husband has heart and lung problems.  Your Onc is probably correct to avoid Sprycel due to its potential for pleural effusion (fluid build-up around the lungs), and maybe Tasigna if the heart issues are a certain type.  It sounds reasonable.

[PJM]

I have been taking Iclusig since January after experiencing suboptimal response rates on both Tasigna and Sprycel.  I have to say that I have felt better on this TKI than the other two.  According to BIologics, the only pharmacy in the US pharmacy carrying the drug, there are only 1,000 of us on this TKI.  Only 20 patients at City of Hope take it.  I started off at 15 mg and it has been raised to 30 mg recently because of a slight upturn in my  BCR-ABL. At diagnosis I was 145% and  over 40% when I started Iclusig.  The 15 mg dose lowered my BCR-ABL to 9%, the lowest ever, but it rose to 12.26% and my dr increased the dose to 30 mg.  I have another PCR next week.  Iclusig has had a dramatic impact on my blood counts, however, and this is the only side effect I am experiencing.  My platelet counts have been so low (down to 12,000) that I have received 2 transfusions.  I also continue to receive weekly neupogen injections and I had a blood transfusion last week.  Dr said that once the Iclusig lowers the BCR-ABL, my blood counts should start to slowly return to normal and I am anxiously waiting for that to happen.  There isn't much on the internet about Iclusig that is positive and most that is there is very scary.  I was scared to start it too especially after failing two previous TKIs and with the knowledge that Iclusig has had dangerous side effects in some patients. My doctor monitors me closely and I have my blood tested twice a week at present.  Good luck to you. 

[tlb3868]

Thank you all for responding. I feel better now. I worry about him all the time. This is a new onc for him since his previous one went to prison! I guess I'm slightly paranoid.

[Lisa Lisa]

My former primary care physician is no longer practicing due to prison time for kickbacks from a specific lab.! (I am on the east coast) So much for that referral.

[tlb3868]

Okay..husbands onc called today he has the T3151 mutation and thats the reason for the iclusig. His surgery is scheduled on the 7th. He has been instructed to not take it until after it.

[Lucas]

hi, tlb 3868. i'm sorry about the mutation. T315I is very rare - i'm in this forum for over a year and searching here i only found a few people with it. i think less than 10. The good think is that there's ponatinib and probably axitinib - a drug for kidney cancer that seems to work on this particular mutation. There will probably new drugs soon too. hope your husband do well on the surgery and on ponatinib. good luck

[tlb3868]

We are seeing the onc on Wednesday. I don't think he is going to allow surgery now. We will find out I guess. In the meantime I feel so bad for my husband. He seems to be so out of it. I worry he won't take the iclusig if he does not get his stomach fixed. He hurts everywhere he says. Walks hunched over like he's 90 yrs old. Sleeps most of the day. I'm really worried.

[Trey]

Iclusig is the ONLY TKI drug that will work for T315i.  It is also a "difficult" mutation so it is important to take the drugs right away and stay on them.  He needs to understand that the other issues may be painful and debilitating, but the CML will be deadly without the Iclusig.