17 replies to this topic

[jamietoftum@hotmail.com]

Im just curious if your doctor has ever deemed you as intolerant to TKI's.  THEY have reduced me twice on Sprycel and I have exhausted both Gleevec and Tasigna.  I am hoping the Sprycel continues to work on the lower dose.  WHO is on a lower dose and how long has there been NO change in WBC's and BCR/ABL?

[hannibellemo]

Jamie,

Your first mention of this intrigued me. I seem to be running through them as well. I developed severe liver toxicity with G at 8 months, it was working well for me. Switched to Sprycel and at 2 1/2 years I develop a nasty pleural effusion, have been MMR for nearly 2 years. The jury is out on how we will deal with that; switch or lower doseage. With my history of hitting the rarer side effects I'm a little concerned to go to Tasigna.

I'm thinking maybe I can just cycle through them all over and over again.

Pat

[jamietoftum@hotmail.com]

Next step is I hope Ponatinib is available by year end.  I think that is what Greg at the NCMLS says..  Ive read up on the trials and the studies look good for those on it for either intolerance, resistance or mutation. 

[hannibellemo]

I think Bosutinib may be approved sooner that Ponatinib so that is another possibility.

Good luck!

Pat

[jamietoftum@hotmail.com]

My Doctor is one of the ones doing the trial on Ponatinib so I think I can get into the 2nd study.  Will know next time I go back.

[hannibellemo]

Good luck! I hope you do get in!

Pat

[jamietoftum@hotmail.com]

My PCP just called I have to go in the morning and repeat my CBC...NOW my RBC, Hglbn, and HCT are elevated..UGH..  I want to get off of the CML merry go round.

[Susan61]

Hi:  I know of two people who have done well on the Ponatinib, and failed everything else.  It was two women, and they felt it was their last effort to get something to work.  The good thing was that one of the women has had CML for 16 years, and has just been stable with a Ccyr all this time.  I am sure treatments will only get better as time goes on.

They also both said they had no side effects.  They could not believe how great they felt.  One has gotten to PCRU, but the other lady is hoping to get there also.

[jamietoftum@hotmail.com]

That is everything I have read thus far also.  SAW my PCP today, WBC, Lymphocytes and Baso's are elevated..shes going to call on. UGH I hope a BMBisnt in my future...

[pammartin]

Hey Jamie, let us know how you are doing.  I sent you request on facebook, just in case you were interested.  Thanks for the tip for the site.

Pam

[jamietoftum@hotmail.com]

Doc called me monday night late to come back and re-do labs yesterday morning.  whites are elevated as well as basos and lymphocytes...I put in my formal resignation at work...worked two 3.5 hour days and Im exhausted...tired...and just not feeling well.

[pammartin]

Hi Jamie, I am sorry you are feeling so poor.  I love the Lego Fund drive for kids, awesome program.  Sent you request on Facebook so don't worry if you thought someone was lurking about your site, it was only me.  I want to do something, work wise but am afraid I would just get started then not be able to continue.  On good days I put in resume's and then I worry on bad days they are going to call.  Please keep us posted, and thanks for the update, I have been wondering about you. take care

Pam

[Sneezy12]

Have you been tested for mutations? Frank

[jamietoftum@hotmail.com]

I do not know.  My PCP alerted my ONC and they are watching it closely.  I go back in 4 weeks.  If in a week or so the whites are still elevated then I assume they will do a BMB.  At this point, I am thinking positive thoughts.  FOR 9 monthes my whites were pretty much the same in the 6 range.  I had achieved MMR, so it could be a freak thing, a cold, or something brewing.  I am not going to worry or stress.  Realistically the odds are in my favor and if its the lower dose of the Sprycel, then I guess we up my dose again and I will just have to "suck-it-up" and deal with the major issues..

[Susan61]

HI:  IT sounds like you might have something brewing, but if not the increase in the Sprycel could do it.  I hope you do not have to get a BMB, and that your blood work just comes in the way it should.  You sound very positive in your outlook, and its encouraging to a lot of others who are going through similar problems.  Thats why we are all here to support each other.

[Trey]

On lower dosage you need frequent (probably 3 month) FISH and/or PCRs.  Hope you have been monitored closely.

[jamietoftum@hotmail.com]

I have only been on the lower dose for 2 months.  I was prescribed 70mgs, while  was waiting for insurance approval took 50's for 17 days..then on the 70s for 6 then got really sick so my ONC said to stay on the 50s.  I have my blood monitored every 6 weeks.  Due to some other issues I had a CBC and CMP.  A week following my labs..  Then when my PCP called to tell me my RBC, HCT, and Hgbn was elevated she wanted a repeat CBC.  Thats when it was discovered that my WBC, Basos and Lymphos have been continuously rising over the past 3 weeks.  SO I go in 2 weeks for a followup CBC then see my onc on the 23rd of Apr.  If they are elevated on the 2nd then they may schedule a BMB to look for a mutation??  I slept 15 hours last night and am running a fever and having spleen pain (very similar as my sx upon diagnosis)  BUT I really cannot change anything and will be okay with whatever comes my way.. 

[pammartin]

Great attitude Jamie, I wish I could be that positive all the time.  Hardest part for me with this disease is I cannot do any real self help to control the CML.  What you wrote is one of my greatest struggles, 'I cannot change anything and will be ok with whatever comes my way'  Nice, I need to take some lessson from you.