21 replies to this topic

[Buzzm1]

Ideally, in lieu of successfully ceasing TKI treatment completely, while knowing that TKI's are toxic drugs, we would all hopefully want to be on the lowest TKI dose feasibly possible, only that dose absolutely necessary to keep our CML under control.

 

Excluding being forced to lower our TKI dose due to unbearable side-effects and aside from being directed to do so by our Oncologist, what factors would induce you to argue your case for a TKI dosage reduction, and when would you lower your TKI dose, realizing that we can always increase our TKI dose if containment is lost.  

[Buzzm1]

In my own case, wanting to reduce my dosage, arguing against the opinion of my oncologist, was an act of desperation to try to regain some quality of life and rid myself of some of the disabling side-effects of Gleevec 400mg.  Even then, unsure of the outcome, I waited until six weeks prior to my next PCR, before reducing from 400mg to 300mg, and then stayed on 300mg for another full PCR cycle before further reducing down to 250mg.

 

Despite currently being down to 100mg I'm still attempting to regain some quality of life, or make that life itself (it has been an argument with my Onc, at every juncture), as I still feel almost completely immobilized, be it from the medication, the CML itself, or likely, my age.  My favorite pastime is sleeping.  My immediate plans are to reduce down to 50mg as of my next PCR, and then remain on Gleevec 50mg for two PCR cycles; the purpose being to find out if I can hold PCRU on Gleevec 50mg in advance of, if, and when, it turns out that I relapse after discontinuing the TKI as of my October PCR.  That, and if I lose PCRU, it would be early 2017 before I begin paying through the nose for my med up through the Medicare donut hole.  Lucky me, I haven't had to fill a Gleevec Rx this year, and won't have to, as I have more than enough Gleevec on hand to fulfill my remaining 2016 need.

[tazdad08]

I took it into my own hands and reduced my dosage. I reduced to 75% for 3 months to see what my numbers showed.. I had no climb in numbers. I then went to 50% for 3 months with no rise. I then gradually went to 20%. I stayed there for almost 3 years before I became detectable. I went back to full dose for a month and then back to 50%. Still doing good. My main goal was a balance of life. I told my oncologist what I was doing after 2 years of doing so... He was actually somewhat okay with it. His words was "There are no clinical trials showing that such a low dose will maintain you...You are conducting your own trial" We agreed that I would increase dose if my numbers was ever off. I agreed and was happy with  his support. 

[Buzzm1]

tazdad08, thanks for posting; please post your history/status in your Signature, so we can all understand which TKI you were on and how long you were PCRU before attempting dosage reduction.  I thought I had previously read that you were only dosing once a week, or something like that, when you relapsed.  Thanks for any clarification.

[hannibellemo]

Buzz.

 

If Gleevec is so difficult for you why don't you switch? That is a strange question coming from one who is loathe to switch from Sprycel 50mg even though I think I have occasional low grade pleural effusion which my body seems to be able to resolve so far.

 

Since I have accumulated 3 extra months of Sprycel for whenever - maybe my first 3 months on medicare, I would be really pissed if I had to switch right now.

 

But, I digress, this was supposed to be about you...would you consider switching to a low dose of one of the other TKIs?

[Buzzm1]

Buzz.

 

If Gleevec is so difficult for you why don't you switch? That is a strange question coming from one who is loathe to switch from Sprycel 50mg even though I think I have occasional low grade pleural effusion which my body seems to be able to resolve so far.

 

Since I have accumulated 3 extra months of Sprycel for whenever - maybe my first 3 months on medicare, I would be really pissed if I had to switch right now.

 

But, I digress, this was supposed to be about you...would you consider switching to a low dose of one of the other TKIs?

Pat, with regard to Gleevec being difficult, that is ancient history now that I down to 100mg.  But if I should relapse after ceasing Gleevec in Oct., I am contemplating a restart on low dose Sprycel, the reason being that Sprycel has a higher efficacy than Gleevec

 

As of Feb., 2017, you will have been PCRU for two full years; you have options ... either reducing your Sprycel dose to 25mg (splitting a 50mg), or attempting cessation; both are good options for you.  With Medicare and a Medicare supplemental insurance, there is considerable annual expense up through the Medicare donut hole ... my copay in the catastrophic phase is only $12, but that is insurance dependent, so know your Medicare supplemental plan in advance.  

 

In my 12th year of Medicare and (due to company subsidized Medicare plan which ended 06/2015) haven't as yet experienced any of the financial burden of it ... hoping 2017 doesn't bring it.  

 

While In the Donut Hole, Consumers pay:

2016: 45% for brand-names and 58% for generics

2017: 40% for brand-names and 51% for generics

2018: 35% for brand-names and 44% for generics

2019: 30% for brand-names and 37% for generics

2020: 25% for brand-names and 25% for generics

 

For 2016, the Medicare Donut Hole will be $3,310 to $4,850.

For 2017, the Medicare Donut Hole will be $3,700 to $4,950.

[VickiW]

HI everyone! (Hi Pat, long time gone, do you remember me?)

My onc has been slowly reducing my Sprycel dose for years for a variety of reasons and now I have been on the absolute minimum dose of Sprycel (20 mg every other day) for a year and a half (my decision) and have recently qualified for the LAST trial (where you quit entirely).  I find out next week when I begin and I am so excited!  Been a long journey for me (dxd 3/5/2007) with a lot of ups and downs and I can't wait for this next chapter.

 

eta;  forgot to add that it took me 2+ very rough years, then totally failure on Gleevec, switched to Sprycel and then another couple years to reach PCRU.   My onc did not begin reducing my dosage until I was in PCRU and then the first time was because of developing pleural and pericardial effusions.  Since then it was a mix of reasons, each time I was asked what I wanted to do.  I never once lost PCRU.

[Melanie]

I always said that if I ever reached MMR, I would ask my onc to reduce my dosage of Bosulif from 400 to 300 mg. My purpose is that the lower dose would hopefully help my blood counts improve and I could get off the trial drug I've been on for over 2 years for my platelets. I don't hold much hope of ever reaching PCRU, so MMR is when I want to start. I truly believe there's no reason to continue taking full dosage when the burden of leukemia is so much less. At that point the damage being done to my organs from the TKI is scarier than the CML. Just want to take the lowest dose possible to control the CML.
Now that I've finally reached MMR today, I've emailed my onc asking to reduce my dosage. I'm awaiting his response, which I'm sure he'll go along with since we previously talked about it and he was in agreement. He thinks my PCR will continue to decline or at least remain stable. Of course, we'll be monitoring my PCR carefully.

[gerry]

Hope this is a success, I dropped my dosage of Gleevec down originally. Since CML, this is also my outlook for the other medications I now have to take, i only want to be on enough to keep in the high end of normal. 

[Buzzm1]

I always said that if I ever reached MMR, I would ask my onc to reduce my dosage of Bosulif from 400 to 300 mg. My purpose is that the lower dose would hopefully help my blood counts improve and I could get off the trial drug I've been on for over 2 years for my platelets. I don't hold much hope of ever reaching PCRU, so MMR is when I want to start. I truly believe there's no reason to continue taking full dosage when the burden of leukemia is so much less. At that point the damage being done to my organs from the TKI is scarier than the CML. Just want to take the lowest dose possible to control the CML.
Now that I've finally reached MMR today, I've emailed my onc asking to reduce my dosage. I'm awaiting his response, which I'm sure he'll go along with since we previously talked about it and he was in agreement. He thinks my PCR will continue to decline or at least remain stable. Of course, we'll be monitoring my PCR carefully.

Melanie, others here are proving that it isn't necessary to continue taking a heavy TKI dosage to reach the desired goal, much less to maintain, PCR status.  Hopefully the future of TKI treatment will be to reduce dosage earlier because, as you mentioned, there is high risk to our organs with longterm heavy TKI dosage.   That risk increases with age; hindsight being close to 100%, I only wish I would have started my own dosage reduction earlier; I might not be having some of the problems I am currently experiencing.   In lieu of successful cessation, I am a proponent of being on the lowest dose of TKI possible, and as soon as possible, to maintain a "CML under control" status.  

[VickiW]

I agree.  Even tho my dose is now down to minimum and soon (hopefully) zero, I too wish I had begun the reduction within the first year (or at least two) that I reached PCRU and BEFORE I developed the complications like thin skin, sun sensitivity, pleural and pericardial effusion, advanced peripheral neuropathy (both motor and sensory, tremors) and now  T2 diabetes.  Thankfully, after continued dosage reduction, the complications either disappeared or were greatly reduced, tho it took a lot of time, in some cases literally years.  The only two that haven't eventually disappeared completely were the neuropathy but this has improved to the point that I no longer have balance issues, (but not before I took a fall bad enough to shatter my leg, ankle, get me some new internal hardware and put me in a wheelchair for several months) have regained most of the sensation in my feet, now only occasionally bothered by tremors and have not needed to increase the gabapentin dosage to control pain for a long time.  The diabetes (which is now known to be caused by the long term use of the TKI's potentially damaging the pancreas) is what led to my final dosage reduction to the minimum a year + ago. My Onc told me this is another potential complication that was previously unknown but is now showing up in a percentage of long term users like myself who have no prior family history or other "markers" for developing T2.  Fortunately mine was caught quickly when my blood glucose took a sudden dramatic jump from pre-diabetic to ouch!.  My original PCP did not take it seriously but after a fast switch my new PCP coordinating with my onc, quickly got things under control.  There is no such thing currently as reversing diabetes once you have it (no matter what the commercials say) but with the reduction in my Sprycel limiting further pancreas damage and my PCP working with me to quickly get my blood glucose levels under control, we've probably pushed the likelihood of my developing serious complications well down the road.

[Buzzm1]

Vicki, you are a walking, talking, billboard for reducing TKI dosage as early as possible.

added it in: Reducing Dosage

[VickiW]

Vicki, you are a walking, talking, billboard for reducing TKI dosage as early as possible.

added it in: Reducing Dosage

AMEN! From your mouth to all the onc's ears!!!

[Melanie]

Wow Vicki, exactly why I'm such a proponent of lower dosage ASAP. I guess the real question is when is it safe? Since there's no real studies, we'll have just share our experiences and learn what we can.
I heard back from my Onc and he's good with me reducing down to 300 mg. So, I'm starting now. As we monitor my PCR, I'll post if there's any change.
It's great to know there's so many who support this idea. I really believe it's the right path.

[VickiW]

So do I Melanie!!!  I think waiting until you are stable @ or near PCRU is prudent, but the waiting until something goes wrong (like developing pericardial effusion like in my case) is probably not necessary.  The good news I guess is that what us "old hands" have helped the pros learn will be a benefit to the ones just starting their journeys behind us.  That is as long as we all do our part to make certain the information gets passed along.  That's what this LAST trial is all about.  The  European trials have all shown some truly great promise.

 

ETA:

now 4/16/2016

Tho I qualified for the LAST trial, we were unable to work out the logistics of roadtrips, lodging, animal care while away, etc. etc. so we finally had to pass.  HOWEVER, I finally got my onc to agree to let me go ahead and take a break (hopefully permanent) anyway after my latest QPCR came back undetectable again so tomorrow is my last dose of 20 mg Sprycel.  I am convinced that if TFR can work for anyone at all, it would be me.   Except for the length of time it originally took me to reach PCRU, I am textbook.

[Buzzm1]

Odds of Successful Cessation (Compiled from Stop Studies)

Dasatinib DMR/PCRU of 1 year ... 49%

DMR/PCRU median duration of 2.3 years ... 54%

DMR/PCRU median duration 26 months ... 56% ... <45yrs. old . 10%; 45-64 . 62%; >65 . 72%

*imatinib only; DMR/PCRU  >2 years duration ... 61%

3-4 yrs. of DMR/PCRU ... 67%

 

*some distortion is created by participants having been on TKI for 8-9 years 

[Calvink669]

Hi All,

 

I was diagnosed in Oct. of 2013 with 550K WBC and 7% Blasts.  Went on 100mg sprycel right away and was .19 IS scale after 1 year and .08 IS scale at 2 years.  

 

During my second year I moved from Chicago to Houston and to MDA with Dr. Kantarjian.  In Jan of 2016 I was down to .15 MDA scale (.05 IS scale) however had developed a plural effusion and my BP was high.  Dr. Kantarjian reduced my sprycel to 20mg after which I felt 10 times better (no fatigue or sore joints anymore and back to working out 6 days a week)  In May my PCR was .28 MDA scale (.098 IS scale) and was worried that 20mg wasn't going to be able to maintain control.  However, Dr. Kantarjian wanted to stay the course and kept me at 20mg.  I just went on 10/31 and got the results yesterday and my PCR was .20 MDA scale (.07 IS scale)

 

So it seems 20mg is enough to continue keeping my CML under control and hopefully drive it into deeper remission.

 

Just wanted to add my data points to this discussion.

 

Regards,

 

Tim

[tazdad08]

Just saw my Dr today. I have been on one 200mg daily dose of Tasigna since the first of the year. It is still keeping me undetectable. Side effects seem to be just as bad, but I figure that true damage to my body has to be a little less that full dose. I am really considering dropping lower again. 20% held me for 3 years. Anything to help offset my pain is a consideration for me.

[Gail's]

Pain is a good reason to decrease dose. I'm so glad my onc believes me when I tell her I have pain. She whipped out a prescription for narcotics even though I didn't ask for it and rarely use it. Surprised me because I know Kaiser is really cracking down on narcotic prescriptions due to much overuse or addiction.

[ROM1212]

You don't need to argue your case if you feel you are justified in your decision - just do it.

 

I stayed on 400mg G for 5 years, after which I reduced my dosage to 200mg, without my onc's knowledge or approval.  I felt very comfortable making the change based on the informed input of people on this board and elsewhere.  After remaining PCRU, I informed them of the change after one year.  Beginning in year 7 and up to now, I alternate taking 200mg on even numbered days, and 100mg on odd numbered days.

 

Every once in a while I fancy cessation, but I stay active and manage to limit problems to cramps.