25 replies to this topic

[tinman1939]

Elsa -

Tonight will be Day #8 on Iclusig (15 mg tablet).  The general achiness I had has gone away.  My oncologist prescribed hydrocodone last week to deal with the achiness and lack of sleep; that has worked well.  Now I am thinking of weening myself off of the hydrocodone.  At some point, I have to ramp-up to 30 mg of Iclusig. I hope that doesn't cause me much distress.  We shall see.

Thanks for your note.

Wayne

[susanlathers]

Elsa,

In reply to your question re: Bosulif.  I have been on it for 4 months.  In past 8 yrs -I tried Gleevec, Sprycel, Tasigna, never attained a sustainable neg PCR.  Tasigna gave me diabetes so switched to Bosulif in Jan.  The nausea is pretty bad and took about 2 months to go away.  I found taking it at night, I sleep thro the worst of it.  Appetite has not returned but the only problem that causes is now a very low blood sugar probably because Bosulif is hard on the liver.  For me, once past the nausea and diarrhea, this drug has the least side effects.  My PCR came down from 60% to .027 in 3 mo.

  By the way, some days it's ok to jump in bed and pull the covers over your head and pretend there is no such thing as CML.  I have to look at it like I do my high blood pressure,  it can kill you if you don't treat it so thank God there is a treatment. Keep praying.

Susan L.

[elsaprays]

Hi Pat,

First of all, the Sprycel gave me horrific migraines; It may have collided with another medication that I take for migraines, but every single bone in my body ached and throbbed like no pain I have ever felt.  I felt like my bones were going to burst into flames at any moment.  I am on some pain meds for some other health problems and nothing was touching this pain all over that the Sprycel seemed to be bringing on.  On day 5 I woke with my face all swollen and distorted and my hands so swollen I could hardly bend them.  I decided no more.  I told the doc I would rather die that feel this way.  So he put me back on Gleevec but he is not happy and wants me to try another newer TKI.  I am so sensitive (like Wayne above) I was on 1/2 of the dose and was going to ramp up...but couldn't even handle 1/2,  I don't know if migraines and bone pain and swelling and depression are what Sprycel did to you or others, but that's pretty much it in a nutshell.  I am cruising thru the blogs here at LLS and other websites trying to find out all that I can about the CML meds and see if I can find one that will agree with me, me with it, and still give me some quality of life.  Thanks Pat for the encouragement.

[Marnie]

Wow!  That sounds pretty awful.  Good luck in your search to find what will work best for you.

Marnie

[hannibellemo]

Wow, Elsa, that does sound pretty awful. Bone pain, I think must be the worst. I have it occasionally on Sprycel in one femur but nothing like what you described. The headaches are pretty typical with most at the beginning, I had one the first day but that was it. My main concern after the first night with tremors and vomiting (the tremors continued on a diminishing basis over the first month alond with other irritating but non-threatening side effects) was general malaise and crushing fatigue that began a little over one month in. My heart would pound with any effort and I was really afraid I would die at times just walking upstairs to the bedroom. During all of this my vitals remained normal and my counts were just slightly low normal, as they are today.

Then one day it was like a veil lifted and I felt normal again. No gradual improvement, just poof, I was back. A couple of times I thought I might be heading back there to that dark place but it only lasted a day or two and for the past couple of years I've been fine.

These are very weird and powerful drugs!

I can certainly see why you didn't want to stay on Sprycel. The newer TKIs are, just that, newer. For some they are life savers - for those who couldn't tolerate or didn't respond to Gleevec or wouldn't have responded to any of the drugs because of the T315i mutation. If it were up to me, I would have stayed on Gleevec because I felt great and it was working for the time I took it. Unfortunately, my liver took exception and I had to be switched after 9 months.

I'm glad you found this site and I'm glad you've found us helpful and encouraging!

Pat

[Happycat]

Wayne,

Glad to hear you feel sorta okay on Iclusig.  A friend of ours works at Ariad.  He said that the cardiovascular issues were known at the Phase 1 and 2 trial stage, but that the European Medical Agency still approved the drug, believing the risks to be manageable.  When the higher incidence rate appeared after approval, Ariad felt the FDA went a bit overboard taking the drug off the market.  They felt vindicated when doctors began petitioning the FDA to allow them to use it, in essence saying, "we know the risks, but these patients still need the drug."   The EMA released a report on managing the risks in December 2013.  I have attached the link below if you are interested.  It seems to be a summary statement, not the entire report.  It pretty much sounds like contraindications for use or when not to prescribe.  But they do suggest monitoring patients on it carefully for cardiovascular issues.

http://www.ema.europ...WC500148271.pdf

HTH,

Traci