Javascript Disabled Detected

You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.

I did not expect to hear this at my specialist visit recently

Started by mdszj , Jul 19 2016 07:15 PM

Please log in to reply

12 replies to this topic

#1 mdszj

Advanced Member

Members
80 posts

Posted 19 July 2016 - 07:15 PM

Hi all

Just to update, I had my 4-month visit with my local guy on 7/11 and he said I could stop taking sprycel if I want. However I decided to reduce to 50 for a while and see how that works out. Then on 7/12 I had my annual visit with my specialist. When I told him of my dosage switch, I was surprised when he said that he is not a big fan of reducing dosage because you can build up a resistance to it. I am under the impression that some of the other cml "thought leaders" such as Cortes at MD Anderson are ok with reducing dosage, which I thought was pretty standard thinking nowadays. In fact I know scuba here is on 20 mg sprycel and sees Cortes. Was wondering what other peoples' specialists have to say about this issue??

dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16

Back to top

#2 r06ue1

Advanced Member

Members
426 posts

LocationEarth, Solar System, Milky Way, Local Group, Virgo Supercluster, Laniakea

Posted 20 July 2016 - 06:03 AM

I think my Oncologist also has that bad or outdated information as he doesn't recommend dosage reduction unless there are bad side effects. He is on board with me trying to stop however so not completely out of touch with what is currently going on. I think Oncologists just are more conservative in their approach as they have the potential for a big malpractice suit if they recommend something and it turns out bad for the patient. If more research is done and documented on dosage reduction I think more oncologists will get on board.

He did say it was my decision to make but he didn't recommend it. Not that I will be trying anytime soon, not undetectable yet.

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

Back to top

#3 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 20 July 2016 - 08:28 AM

The low dose resistance theory for TKI drugs never made any sense. Many of us are on lower dosage, and it is becoming the standard for long term maintenance after PCRU. Your Onc should read about CML a bit more.

Back to top

#4 rct

Advanced Member

Members
77 posts

Posted 20 July 2016 - 09:06 AM

Some people can reduce their dosage by quite a bit. Some people can only go down a little. And some people can't at all. It's a pretty simple concept that everybody is not the same, and just because a dozen people here and my Mrs have had some measure of success with lower doses doesn't make it the norm. Remember, the first dose of gleevec was 800 a day, practically killing people with chemo.

Send Druker an email, you don't have to believe me.

rct

Back to top

#5 kat73

Advanced Member

Members
884 posts

LocationWashington, DC area

Posted 20 July 2016 - 09:34 AM

My CML specialist believes dose reduction can trigger resistance. "How do you think we induce resistance in the lab, when we want to study it?" he says. He will reduce dosage only when a patient is seriously bothered by side effects.

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

Back to top

#6 tazdad08

Advanced Member

Members
141 posts

LocationTennessee

Posted 20 July 2016 - 11:03 AM

Mine was a little hesitant at first. 4 years later and only 1 hiccup... He is okay with it now. I was down to 20% Tasigna when I lost CCrY. I went back to 100% for 2 weeks and then to 50%. and was CCrY at my 3 month check up. From the things Ive read it seems that people have a quick response to increased dosage if/when that becomes needed. I am not saying to try that...just giving my story.

Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!

Back to top

#7 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 20 July 2016 - 01:47 PM

"How do you think we induce resistance in the lab, when we want to study it?" he says.

It is done by buying a resistant strain sold by genetic suppliers and testing it, not by making it resistant.

Back to top

#8 CallMeLucky

Advanced Member

Members
216 posts

LocationCT

Posted 22 July 2016 - 11:46 AM

There is a sense of "What-if" with many doctors based on years of seeing cancer spread after thinking it was stable. So they are reluctant. Others want to push the limit and see what happens; if they have willing and eager patients to be testers, all the better.

The bigger question for me, and I think should be for anyone who goes down this road, is what is your tolerance for risk? If you lower dosage and your numbers climb (like mine did) are you comfortable with that? While it seems in almost all cases increasing dosage gets you back, what if it doesn't? Can you be at peace with your decision? Does your family support this decision? I believe these are the questions that are more important and the ones you need to answer for yourself based on your own values.

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

Back to top

#9 tazdad08

Advanced Member

Members
141 posts

LocationTennessee

Posted 22 July 2016 - 12:23 PM

The bigger question for me, and I think should be for anyone who goes down this road, is what is your tolerance for risk? If you lower dosage and your numbers climb (like mine did) are you comfortable with that? While it seems in almost all cases increasing dosage gets you back, what if it doesn't? Can you be at peace with your decision? Does your family support this decision? I believe these are the questions that are more important and the ones you need to answer for yourself based on your own values.

That is probably the best advice I've read on this post!

Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!

Back to top

#10 mdszj

Advanced Member

Members
80 posts

Posted 23 July 2016 - 05:27 AM

Thx to everyone that responded to my post. I am satisfied that I made the correct decision in going lower from 80 to 50, and that the accepted thinking these days is there is no problem in optimizing or lowering dosage.

dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16

Back to top

#11 kat73

Advanced Member

Members
884 posts

LocationWashington, DC area

Posted 23 July 2016 - 12:00 PM

It is done by buying a resistant strain sold by genetic suppliers and testing it, not by making it resistant.

mdszj, I'm glad you feel good about your decision and I'm hopeful for you to have great success!

Trey - my onc said, in answer to the question, "how do we induce resistance in the lab when we want to study it" that they reduce the dose again and again and again and what leukemic cells that survive have become resistant to that TKI.

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

Back to top

#12 gerry

Advanced Member

Members
1,035 posts

Posted 23 July 2016 - 04:21 PM

I wonder if the thing missing from the lab is the immune system.

Back to top

#13 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 24 July 2016 - 09:26 AM

Trey - my onc said, in answer to the question, "how do we induce resistance in the lab when we want to study it" that they reduce the dose again and again and again and what leukemic cells that survive have become resistant to that TKI.

Researchers cannot do it that way because they cannot guarantee the purity of the end result, and research testing requires that all samples must be fully understood. Researchers BUY the resistant strains then test them.