25 replies to this topic

[tinman1939]

How's that for a  subject header?  Seriously, after reading for weeks about all the  warnings associated with this relatively new TKI (which was on the  market, pulled, then brought back), I was more than a bit hesitant to  start treatment with Iclusig.  But, like any good explorer looking for  the promised land, I bit my lip and agreed to give it a go - with one  condition, however. That condition was to start out at a lower dose -  15mg per day vs. the generally prescribed 45mg. 

Having  been on Gleevec for most of my more than seven year battle with CML,  and after some brief failed attempts to try Sprycel and Tasigna, I  decided to roll the dice with Iclusig at the recommendation of my new  oncologist (whom I had sought for a second opinion).  My forays with  Sprycel and Tasigna both began by taking the full prescribed dosages.   My body didn't tolerate the drugs well at all.  I won't go into the  details here, but I believe giving your body a chance to react to a new  drug is important.  I didn't have a chance to start out at a lower dose  on the other TKIs, but I was bound and determined to at least ask my  oncologist about starting Iclusig more slowly.  He agreed, thank  goodness.  He also told me to take a baby aspirin along with my Iclusig  pill (a nod to the heart risks associated with Iclusig).

In  the weekend before delivery of the Iclusig to my home, I was extremely  nervous (again, from reading all the literature I could find about  Iclusig).  So, to relieve the anxiety of what might happen should I  experience some life-threatening side effects, I went online to  legalzoom.com and arranged to get a living will, along with providing  power of attorney to my wife.  Then, later that night, to further  relieve my anxiety, I went to see Bruce Springsteen and the E Street  Band at the free NCAA March  Madness-related concert here in Dallas. If I was going to go, I wanted  to go out on a high note. It was a great concert.

After  getting home from work last night, the Iclusig pills were already  there.  I took a baby aspirin. Then I took out a 15mg pill. It was so  small, I remember thinking. How can something so small have so many side  effects?  I washed the pill down with some water. Then I had dinner -  and waited for any signs of the drug being in my system.

The  first "sign" may not have been a sign at all.  I felt some pain on the  top of my left hand.  It stayed that way for about 15 minutes, then went  away.  What was that, I thought? Then I got tired, which wasn't  surprising given my night out with Bruce the night before.  So, I went  to bed.  When I awoke this morning, still groggy, I saw that there were  more "bags" under my eyes than usual.  Was it a sign of water retention?  Or was I just still tired?  I don't know at this point. 

So, I  went off to work (note: my workday begins by leaving the house around 6  a.m. and returning around 6 p.m. This contributes to my feeling tired at  night, too).

I don't have nearly as much dread about taking my  Iclusig pill this evening, but rest assured, I will be monitoring for  any side effects. I won't be belaboring you with my daily trials and  tribulations, rather, pledge to let you know how I am doing on this  drug.  This might help those of you who end up trying Iclusig some day.

Thanks for listening.

Wayne

[hannibellemo]

Wayne,

Glad you're still among us and I really like your style!

Pat

[KerriD]

Bruce is the best medicine!! I'm a big fan.  I have been to 17 shows over  the last 30 years.  I think it is a great sign that you got to see Bruce right before you started your new med.  Sending love and light your way!

Kerri

[GerryL]

Hi Wayne,

Good luck with the Iclusig, hope it works really well for you.

I also got to see Bruce in February when he was touring Australia, great way for you to start your new TKI.

[Susan61]

Glad you did well with your Iclusig, and I know our attitude is half the battle.  Sounds like your going to be just fine.

Susan

[Trey]

I like Bruce, Wayne.  He has a nice car.

[pamsouth]

That is less than 1/2 the standard dose. How did u talk ur doc Into that.

Pamsouth

[hannibellemo]

[tinman1939]

Pam -

The 15mg per day of Iclusig is how I am starting on this TKI; my oncologist asks that I then take 30 mg per day after a week or two. I am easing my way into this new TKI to give my body an opportunity to react to its presence and, perhaps, limit the potential side effects as a result.  At least that is my hope.  We shall see.

[tinman1939]

Gerry -

Bruce gave me "High Hopes" that Iclusig was going to be my "Secret Garden" to a CML-free future.

[tinman1939]

Hanna (or Hannibellemo) -

Thanks! 

[tinman1939]

Kerri -

You've got me beat on Bruce shows.  I have been to half as many as you - but enjoyed everyone, especially the first - 1976 at the Philly Spectrum for the Born to Run tour.  My awakening, so to speak.

[tinman1939]

Susan -

Thanks for your encouragement.

[tinman1939]

Trey -

Of course you mean the Pink Cadillac.

Thanks for the note!

[Antilogical]

I think Trey was referring to the Batmobile....

[GerryL]

You could go Racing in the Street to the Cadillac Ranch in that Pink Cadillac.

Crushed velvet seats. Riding in the back, oozing down the street.- The song is now stuck in my head. .

[mike43147]

Wayne,

Good luck with your use of Iclusig.  Hopefully it will work as well for you as it did for me.  I was lucky enough to start at 45 mg a day in July and stayed on that until the FDA pulled the drug in October.  Iclusig got me to undetectable which none of the other TKI's (all 3 of the originals) failed to do.  My doctor switched me to Bolsulif, 500 mg.  I remain undetectable so far. 

Saw my first Bruce concert in the old Philly Spectrum back in my younger days.  Wasn't lucky enough to get tickets for the Born to Run tour, but did get tickets to 3 nights of the Born in the USA tour.  All 3 nights down on the floor front and center of the stage.  No way today do I have the energy to do those 3 nights over again.

Hope everything works as well for you as it did for me.

Mike

[elsaprays]

Wayne,

First I have to compliment you on your bravery!  I read about these meds and get so scared I want to jump into the bed, pull the covers over my head and just pretend that I don't have CML and if I click my heals together and say ...there's no place like home....that I will wake up from the nightmare (and night sweats at times) of CML.  I wanted to post so I guess this is a good place to start.... I was on Gleevec for 5 years, I tried Sprycel for 5 days and it was the worst experience ever.  By day 5, I decided this was no way to live and I would rather just die than continue on.  When I told my Oncologist this, he freaked out and said "that is not an option", so I am back on Gleevec.  However, I am starting up all the side effects I had before and my doctor thinks I should be brave and try one of the other CML meds.  I am so very sensitive to meds, he also will start me on a lighter dose (like Sprycel, I was only on 1/2 of the dose and it nearly killed me).   So I want to ask anyone out there with CML that has tried, or is taking ANYTHING other than Gleevec - for some feedback.   

Also, Wayne I wanted to ask you, I noticed your "Day 1" post was only April 8th, but this is the 13th (5 days later), so how ya' doing?  I hope you are still feeling good!  Hang in there!

All the best,

Elsa

[elsaprays]

Hi Mike,

Sounds like the Bolsulif is working good for you....what sort of side effects have been the worst for you?   I am looking for a new TKI med and my Oncologist wants me to help decide what we switch to, since I am very sensitive and I tend to get weird side effects,  Also did it take long to get used to it?

Appreciate any help or info!

Thanks!

Elsa

[hannibellemo]

Hi, Elsa

I've heard a few people say that Spryel "almost killed them", Could you be more specific about your side effects? I've been on Sprycel for all but 9 months of my CML life (5+ years) and the first several months were truly horrid but I got past it. I just wonder if we experienced the same things.

Good luck in your search for a TKI you can tolerate.

Pat