16 replies to this topic

[pammartin]

Each of us travels our own CML journey and what is good for one might be very wrong for another. I do not suggest anyone stop taking TKI or change treatment plans without support or at least continued monitoring from an oncologist. My results and choices are my own and should not be used as a comparison to another. I believe the disclaimer is important and necessary.

My last 100mg Sprycel was taken the first week of March 2014 because I had PE and later diagnosed with PH. I have been off treatment for 11 months. I have had three PCR's drawn since stopping treatment; the last was February 18 and the oncologist called this morning, I remain undetectable.

Perhaps one of the important facts for my journey includes my maintaining the undetectable result for two years before stopping Sprycel. The oncologist initially pulled the drug because of PE issues, this was before the PH was diagnosed.

Although unsanctioned by my oncologist, I am choosing to stay off Bosulif as long as I remain undetectable. My oncologist has decided he is uncomfortable with my choice and recently referred me back to Cleveland Clinic. He believes they are knowledgeable concerning patients who have stopped the drug because of health issues and/or newer trials for patients who are considering lower maintence doses or treatment free breaks. I do not qualify for current trials because I was not monitored by trial standards upon stopping Sprycel.

I believe it is important to add I did not choose to stop the drug because of side effects, instead I am afraid of the PH returning to a life threatening level. Right now the PH frightens me above the CML, my last echo still reads higher than normal internal pressures. That being said, one detectable result for CML and the playing field changes.

As long as I remain undetectable, I will stay off the TKI. If I see an upward trend of an kind in the future, there will be no choice and I will return to TKI treatment.

I am hoping to set up monthly labs and quarterly PCR testing to monitor my journey via Cleveland Clinic.

My journey with CML and no TKI continues with three months at a time reprieves. I can live with that.

[Darlene_Jack]

Pam,

 

Congrats on the continued PCRU.  I am hopeful that one day I too can stop the TKI's.  Best wishes on a continued PCRU.  I hope you continue to keep us all posted on your progress.  You give me hope. 

 

I too had to stop Sprycel due to Pulmonary Hypertension.  I attempted Busolif for the 2nd time last night and amazingly this time no side effects except for a lil headache, unlike last week when I was vomiting with diarrhea. 

[hannibellemo]

Pam,

 

I know this is a double edged sword for you but I am so pleased for you anyway! Since no one knows what the future will bring, living it 3 months at a time seems like a reasonable choice to me.

 

I don't know if PAH caused by drugs acts differently than PAH from other causes, I'm not even sure what "other causes" would be. It makes sense to me though that the longer you can stay off a TKI the better off you will be, obviously assuming no relapse.

 

Good luck, I've got all my body parts crossed for you!

 

Pat

[gerry]

Hi Pam,

Good news on the undetectable. I have my fingers crossed for you that you get a doc you can work with at the Cleveland Clinic. I've been lucky with my doc, in that he is on board for my cessation, if he hadn't been I would probably have still been thinking about stopping.

Just wish they could come up with an answer why some of us can stop and others can't. Knowing that, they might be able to find a cure quicker.

[pammartin]

Appointment for Cleveland scheduled. I have looked long and hard to find similarites or differences, I am medical terminology challenged, I still do not totally understand CML. I didn't comment on the Vitamin D thread but mine has always been normal. I do have a high tolerance for any drug, I seem to need higher doses and mg for most prescription drugs and I wake to full alertness by the time I hit recovery room after a procedure.

I spoke with Cleveland Clinic today, they are not currently sanctioning any trials for stopping TKI. They will redo the PCR test, they still do not trust the lab Dr Mullins uses. They did my last BMB and aspiration, cannot see how that would gain any insight but mentioned they might want another. With my results it would reveal little information.

Thanks for the support everyone, the journey continues.

[gerry]

I have to assume my vitamin D has been normal all along, I live in a sub tropical city and get at least 20 minutes of sun everyday, which is supposed to be what everyone needs.Similar to you when waking from anesthetic, except I'm usually starving and looking for something to eat. lol

Though they are not sanctioning trials, are they still okay to sign your paperwork off for all your tests and also keep an eye on you?

[Pin]

That's so great to hear Pam! I am relieved that you can continue to stay off TKIs, even if for an indefinite period of time. Let's hope it's forever! xx

[pammartin]

Gerry, will let you know what they will do or not do after visit. The PH doctor called me again today, just checking in. Nice to know they are keeping up with me. I too wake up ravenous from anesthetic, asking for ginger ale and crackers (all they give) in recovery.

Thanks Pin. How are you doing?

[pammartin]

Mike,

 

I would have to look up exact dates, but thinking I received my first undetectable around Feb or Mar of 2012, diagnosed on Oct 7, 2011.  I had a rough start with response, my platelets were very high although the rest of my numbers were fairly regular.

 

I have been undetectable since 2012 so a good guess would be 2 years.  I have never had the blips many have experienced and every PCR has been undetectable since.  I had a few breaks from TKI over the last years, they were usually no more than a few weeks to allow my body to recover or to address a side effect that was particularly horrid.

 

That is why I wrote the huge disclaimer at the beginning of my post. Although unplanned or sanctioned I have been off TKI for a year now. 

 

Pam

[SUE]

Congratulations, Pam.  I wish you continued success on your journey.

 

Sue

[pammartin]

Thanks everyone, I am hoping we all have those undetectable results in the near future.

[Billie Murawski]

Hey Pammie,

Here you go again, giving the oncs another paper to write, and taking all the credit, for what?you did all this on your own! 

You have had serious problems since your dx. I'm so against going off tkis  but to each his own. It sounds like you just don't have any options. You have the bosulif and you are undetectable, I think in your case you're doing the right thing. Your body can keep healing and you don't have tki inside you to interfere with that. If you do lose pcr you have the med right there. Sounds like a good plan to me.

[pammartin]

Hey Billie!  I will drink to that

[gerry]

Hi Pam,

Just keep an eye on the dates, I've been hanging onto my box of Gleevec just in case, but I think the use by date is sometime this year.

[pammartin]

I noticed that Bosulif does not have nearly the shelf life Sprycel has.  I was surprised. Thanks for the reminder.  I have three months stocked now, not sure if I will get more or not. 

 

With my luck they will put me on different one. 

[Pin]

Hi Pam! I'm ok, been pretty bad for a while, but hopefully things are starting to look up...for a bit maybe? My neck/back/arm pain is starting to reduce, so that's one thing - I'm trying to get my tummy under control too, as my last pcr wasn't ideal so we think it might be an absorption issue again...fun!

[pammartin]

Pin, feel better soon. You have had a rough time lately, hoping things settle for you.
Take Care