47 replies to this topic

[r06ue1]

Mr.Tee, not sure if there ever will be a test for that, since I have read that normal people even show positive on PCR tests, but they don't have CML.  Something about our immune systems makes us unlucky I guess but maybe those people that have gone undected and stopped taking the medicine is cured?  Only time will tell.

[gerry]

You can't know - you have to always keep this in the back of your mind. I have continued to be negative even when they upgraded the testing equipment. Though I know my body is controlling the CML, who knows what might happen down the track. I would love to believe in Trey's theory of cell death, but can't. I also know of the disappointment for people when they do attempt to stop and are on the wrong side of the 50%. In the end stopping is something you have to really want to do, plus be prepared for it to possibly not work. Hopefully the stop trials give them pointers on a cure.

[Buzzm1]

there is this old Guy with CML that I know that started with Interferon, then imatnib. He could be cured, yet he suffers through the medication year after year. He even told me that he takes weeks off at a time because he is tired of the nausea. 

tell the old Guy to tell his Onc that he is going to reduce his Imatinib dosage to 200mg immediately.  there will not be awards given to those who take the most TKI for the longest period of time.  he can cut his pills in half to do this. in another six months he can go down to 100mg.  the odds against a relapse for him by doing this are probably 20 to 1.  

[minu]

I think reducing doses and finding the maintenance dose is a pragmatic approach. My onc started with 600 mg nilotinib saying that the trial where they set the standard at 800mg was done for large built Caucasians. I am small and he thought that the lower dose would be appropriate. After my first pcru the next result was.002% after 4 months and I thought that was pretty close and within the error range of pcru and reduced my dose to 400 mg. After 3 months at that dose my result remains at.002%.There is a minor risk and I was ready to go back to 600 if it didn't work out. The reduction have improved my quality of life significantly. My blood sugar is finally under control and the severe cramps are gone.
The exuberant cost of tasigna even through the co-payment system always made me think if I could afford it in the long run. There is no insurance in Bangladesh where I come from and I hear a lot stories about people quiting the drugs because of affordability. People who are suffering from serious side effects or financial difficulties, dose reduction is a viable option worth trying.

[tiredblood]

tiredblood, to the best of my knowledge CML is a slow progression disease.  From everything that I have read I would be willing to bet that at least one of your readings is incorrect.  CML doesn't progress at that rate.

 

cml leukemia PCR BCR-ABL rate of change

 

l welcome any and all education on the issue

Turns out the doctor said the 0.575% was from the bone marrow whereas the others were serum.  Just had a visit with the hem/onc and asked him about this one.

[JRsBoo2]

Hey all, 

 

It has been a few years since I chimed in, but this happens to be current with me now.

 

I had been undetectable from 2010 to 2015.  I rose slightly in 2015, but managed to make it into the current LAST trial, which is a stop trial here at Fred Hutchinson.  Sadly, I have relapsed faster than they thought.  At one month i was .03.  Two weeks later, I called in to report all kinds of pain, fatigue and nose bleed (super odd for me).  They redid all tests, and the pcr came back at .3.  Huge and fast.

 

I am back on Sprycel, 80 mg................ugh.  

 

I only got about 4 weeks off with 2 weeks feeling great.

 

Six weeks off total.

 

I had been on 20 mg for the past 2 years, looks like I need to stay at the higher rate for now.  A bone marrow biopsy is coming in a week or so, they need to get permission for sedation--and I am NOT doing it without.  My onc wants to look deeper and see if I have a mutation or resistance.

 

Rats.

[Marnie]

Please keep us updated on your progress.

[tiredblood]

Hey all, 

 

It has been a few years since I chimed in, but this happens to be current with me now.

 

I had been undetectable from 2010 to 2015.  I rose slightly in 2015, but managed to make it into the current LAST trial, which is a stop trial here at Fred Hutchinson.  Sadly, I have relapsed faster than they thought.  At one month i was .03.  Two weeks later, I called in to report all kinds of pain, fatigue and nose bleed (super odd for me).  They redid all tests, and the pcr came back at .3.  Huge and fast.

 

I am back on Sprycel, 80 mg................ugh.  

 

I only got about 4 weeks off with 2 weeks feeling great.

 

Six weeks off total.

 

I had been on 20 mg for the past 2 years, looks like I need to stay at the higher rate for now.  A bone marrow biopsy is coming in a week or so, they need to get permission for sedation--and I am NOT doing it without.  My onc wants to look deeper and see if I have a mutation or resistance.

 

Rats.

JRsBoo2, thank you on behalf of the CMLers out there for your participation in clinical trial(s) and also for sharing your experience with us.  Do keep us posted.  I wish you well.  I won't have another BMB without sedation either.

[Trey]

My onc wants to look deeper and see if I have a mutation or resistance.

 

 

Very unlikely.  It just comes back faster than many people would believe.  Your results are probably fairly typical for most cessationists.  Success is the rarity.

[JRsBoo2]

Thanks for the positive feedback.  I did question the decision to go into the trial when things headed south.  But I don't have children, and this was one of the ways I could give back to the community.  

 

I knew that long term success was not going to be in the cards for me, but I had a tiny spark of hope.  

 

Ah well, luckily I have taken up watercolor as a way to pass the time.  Tiny little squares......over and over again.  Very relaxing.

 

--Caroline

[Frogiegirl]

I'm sooooo confused. I thought cml was a slow progressing disease??? Maybe checking my progress at one month before getting preggers is a better option, see if it starts rising quickly after tki cessation? Trey?

[gerry]

Dr Hughes (Australia) commented "If the CML is going to show up in the initial six months, it returns at the speed of Blast Phase, note it is not Blast Phase, it is just means how quickly it returns.

Frogiegirl, you should be getting tested monthly once you stop as per the guidelines for the TFR trials.

[Frogiegirl]

Gerry my doc will be testing me monthly but if it rises that quick I would hate to be right in the middle of my pregnancy. He wants me to get pregnant as soon as I go off tasigna, but I'm wondering if waiting a month to see if I lose response quickly will be an indicator of wether or not I could make it through the whole pregnancy without interferon? Awwwww the tangled webs we weave:(

[Trey]

Very few women who have stopped TKIs for pregnancy have remained PCRU.  Most relapsed within 2 -3 months and the relapse often accelerates quickly from there. 

 

You will need to be prepared to relapse (lose MMR) within 3 months and spend the following 6 months on interferon.  Interferon will make you feel like you have the flu for the entire next 6 months.  That interferon will barely keep your CML in check, if it does at all.  If it fails, you will need to restart a TKI and hope it does not affect the fetus.  This is what you must be prepared for.  If you are not prepared for this, you should think again about your plan. 

 

CML is not a slowly progressing disease -- it is an unpredictable disease which does whatever it wants on its own schedule.

[AllTheseYears]

Yes, I can attest that after TKI cessation, CML can return in a "blast-like" way. That is my case.  Under my onc's guidance, I stopped Gleevec last September after about 14 years PCRU.  Felt very optimistic. But four months after cessation, my numbers rose; after seven months, too high to ignore.  I restarted Gleevec yesterday.  Will get checkups monthly. Cessation failed for me; yet, for a few months I felt like my old self. Grateful for that. Now,  I'm totally bummed...and as a Medicare recipient in a state that refuses to have drug parity (meaning I do not pay for my TKI at the price of the old intravenous chemotherapy), I face a $3,000 per month co-pay for my TKI, even with Part D Rx insurance.  Still, the government won't negotiate with drug companies as many middle-class Americans go bankrupt paying for their drugs.  

 

Please notify your congressional rep to back the current bill to end this ridiculous practice regarding Medicare (H.R. 3061). Maybe in an election year, our reps will want to appear like they care for the little guy and not Big Pharma. Here's info:

 

 

Summary: H.R.3061 — 114th Congress (2015-2016)All Bill Information (Except Text)

Listen to this page

There is one summary for H.R.3061. Bill summaries are authored by CRS.

Shown Here:
Introduced in House (07/14/2015)

Medicare Prescription Drug Price Negotiation Act of 2015

Amends part D (Voluntary Prescription Drug Benefit Program) of title XVIII (Medicare) of the Social Security Act to direct the Secretary of Health and Human Services to negotiate with pharmaceutical manufacturers the prices that may be charged to Medicare part D prescription drug plan (PDP) sponsors and MedicareAdvantage (MA) organizations for covered part D drugs for part D eligible individuals who are enrolled under a PDP or under an MA-Prescription Drug plan.

[r06ue1]

AllTheseYears  

 

After 14 years you would think that all of the CML cells would have been killed by now.  

 

With Part D, is there an out of pocket max?  That co-pay is insane, kind of like mine from last year; I had to pay 75% of cost but my out of pocket max went against our family health insurance so it hit max immediately and I didn't have to pay anything else for the rest of the year.

[AllTheseYears]

R06ue1:  I'm still calculating the eventual yearly cost for my TKI - based on current price (and keeping in mind that Novartis keeps raising the price of Gleevec).  After I climb out of the Medicare "donut hole," which will be after spending about $6,000 under North Carolina law, the monthly co-pay will be about $560.  Estimated yearly out-of-pocket cost:  between $10,000 and $12,000 - under current TKI pricing.    

 

Let's hear it for Novartis' predatory business practices, which Congress apparently applauds.  

[Buzzm1]

AllTheseYears, sorry about your loss of PCRU

 

While In the Medicare Donut Hole, Consumers pay:

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

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

 

Once you exit the Donut Hole for the year (likely on the first fill of your Rx), and enter the Catastrophic Phase of Medicare, from then on you will pay 5% of the Rx cost for the remainder of the year.

 

Medicare is a Federal program and a state's drug parity law plays no part in it.

 

As of August 1, Sun Pharma loses it's six-month sole proprietorship of a Imatinib/Gleevec generic.  There should be a substantial drop in the price of the generic.  

[rcase13]

So basically those of us that are not rich and have CML can not retire. I would not be able to pay that amount in retirement.

[Buzzm1]

Please notify your congressional rep to back the current bill to end this ridiculous practice regarding Medicare (H.R. 3061). Maybe in an election year, our reps will want to appear like they care for the little guy and not Big Pharma. Here's info:

 

 

Summary: H.R.3061 — 114th Congress (2015-2016)All Bill Information (Except Text)

Listen to this page

There is one summary for H.R.3061. Bill summaries are authored by CRS.

Shown Here:
Introduced in House (07/14/2015)

Medicare Prescription Drug Price Negotiation Act of 2015

Amends part D (Voluntary Prescription Drug Benefit Program) of title XVIII (Medicare) of the Social Security Act to direct the Secretary of Health and Human Services to negotiate with pharmaceutical manufacturers the prices that may be charged to Medicare part D prescription drug plan (PDP) sponsors and MedicareAdvantage (MA) organizations for covered part D drugs for part D eligible individuals who are enrolled under a PDP or under an MA-Prescription Drug plan.

 

Congress 

 

Senate Health, Education, Labor, and Pensions Committee http://bit.ly/11EEmWL

 

House Oversight and Government Reform Committee http://bit.ly/1L7Qek9