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.
Moving treatment-free remission into mainstream clinical practice in CML
#21
Posted 11 April 2016 - 01:53 PM
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
#22
Posted 11 April 2016 - 05:03 PM
#23
Posted 11 April 2016 - 05:16 PM
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.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#24
Posted 15 April 2016 - 09:56 PM
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.
#25
Posted 23 April 2016 - 10:43 PM
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.
#26
Posted 26 April 2016 - 07:11 PM
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.
#27
Posted 26 April 2016 - 07:31 PM
#28
Posted 26 April 2016 - 07:44 PM
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.
#29
Posted 26 April 2016 - 08:04 PM
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.
#30
Posted 26 April 2016 - 10:36 PM
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
#31
Posted 26 April 2016 - 10:56 PM
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#32
Posted 27 April 2016 - 02:07 AM
Frogiegirl, you should be getting tested monthly once you stop as per the guidelines for the TFR trials.
#33
Posted 27 April 2016 - 08:19 AM
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#34
Posted 27 April 2016 - 09:10 AM
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.
#35
Posted 27 April 2016 - 09:40 AM
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)Shown Here:There is one summary for H.R.3061. Bill summaries are authored by CRS.
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.
#36
Posted 27 April 2016 - 10:18 AM
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.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
#37
Posted 27 April 2016 - 11:28 AM
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.
#38
Posted 27 April 2016 - 11:30 AM
AllTheseYears, sorry about your loss of PCRU
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#39
Posted 27 April 2016 - 12:37 PM
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.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#40
Posted 27 April 2016 - 03:01 PM
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)Shown Here:There is one summary for H.R.3061. Bill summaries are authored by CRS.
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.
Senate Health, Education, Labor, and Pensions Committee http://bit.ly/11EEmWL
House Oversight and Government Reform Committee http://bit.ly/1L7Qek9
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
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