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stuck at .28 (aka WAAAHHHH)


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#1 JPD

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Posted 19 April 2016 - 08:13 PM

Soooo bummed.  Stuck at .28.  Gonna talk to Onc about medicine switch if I dont get a very good result in 3 mos.  The only thing that keeps me from suckin the end of a .45 (kidding, not kidding) is that there are so many people on here that were turtles and finally got PCRU.

 

Gonna STOP drinking since my best response yet came when I was not drinking.  Last three months I've been drinking waaaay too much.  That, of course, doesnt help with the depression (see above).  I dont THINK alcohol can mess with the absorption/effectiveness of the Tasigna - I'm not so sure.

 

This just sucks.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#2 scuba

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Posted 19 April 2016 - 08:18 PM

Stop drinking ... just stop. 

Drink water.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 tiredblood

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Posted 19 April 2016 - 08:53 PM

I just want to thank the turtles that keep JPD going. Definitely stop drinking if you can. :) You're one of my favorite posters.

 

IIRC, you and I are on the same med and were diagnosed about the same time.  I reached PCRU quickly, but my WBCs and neutrophils remain slightly elevated (never really changed) and no one can pinpoint why. So I always have that looming out there to think about. I try not to dwell on it though, but that fact leaves me unsure as to where I stand with CML.  

 

Is 0.28% too bad though if you've been able to avoid accelerated or blast phase?  I'm still learning about all this and don't think it is as cut and dry as we'd all like it to be. I personally, don't think these current TKIs alone will ever be considered cures.  I know this may not set well with the TFRers. Like I said, I'm still learning and my thoughts could change at any time.



#4 tiredblood

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Posted 19 April 2016 - 08:55 PM

Stop drinking ... just stop. 

Drink water.

 

LOL. Water is good.



#5 JPD

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Posted 19 April 2016 - 09:16 PM

My Onc - who is a published researcher of CML (Luke Akard) says that the under 1.0% club is sorta "new" territory.  In that "they" dont know what to do with people at that level of response.  I don't remember exactly what he said, but the gist of it is that there is a school of thought that suspects it might be okay to let someone remain under 1% even if they dont go much lower... or something like that.   I suspect, however, that if my next test doesnt come in a lot lower, he'll want to go to the next level... or maybe just try Sprycel.

 

And, yes, I gotta quit the drinking - I binge waaaay too much & it just makes me a miserable fuck, even if it doesn't have anything to do with the lack of response. 

 

Also, gonna get my vitamin D checked next visit.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#6 rcase13

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Posted 19 April 2016 - 10:32 PM

Yeah, I quit drinking alcohol the day I got diagnosed. I also quit caffeine at the same time. No alcohol and no caffeine makes me a miserable f ck...

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#7 gerry

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Posted 20 April 2016 - 02:06 AM

I just want to thank the turtles that keep JPD going. Definitely stop drinking if you can. :) You're one of my favorite posters.

 

IIRC, you and I are on the same med and were diagnosed about the same time.  I reached PCRU quickly, but my WBCs and neutrophils remain slightly elevated (never really changed) and no one can pinpoint why. So I always have that looming out there to think about. I try not to dwell on it though, but that fact leaves me unsure as to where I stand with CML.  

 

Is 0.28% too bad though if you've been able to avoid accelerated or blast phase?  I'm still learning about all this and don't think it is as cut and dry as we'd all like it to be. I personally, don't think these current TKIs alone will ever be considered cures.  I know this may not set well with the TFRers. Like I said, I'm still learning and my thoughts could change at any time.

 

 

Tiredblood,

The TFRers I know don't consider the TKI is a cure, particularly those that still have CML popping up in their tests. I also don't believe in cell death for it. In my case I believe the immune system has gotten control of it - will it always have control, don't know. I continue to be tested until they come up with a cure for everyone.



#8 gerry

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Posted 20 April 2016 - 02:12 AM

Yeah, I quit drinking alcohol the day I got diagnosed. I also quit caffeine at the same time. No alcohol and no caffeine makes me a miserable f ck...

 

Does alcohol and caffeine have an effect on Tasigna - or was that a personal choice?

I still had both in moderation on Gleevec.

Tasigna would not be an option for me anyway if I have to return to a TKI, I've had at least 10 minor strokes according to an MRI, doc has advised me that I wouldn't be put on it. 



#9 scuba

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Posted 20 April 2016 - 07:01 AM

Yeah, I quit drinking alcohol the day I got diagnosed. I also quit caffeine at the same time. No alcohol and no caffeine makes me a miserable f ck...

 

Hmmm... in your case, Rcase - have a drink (scotch) and a cup of coffee.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 rcase13

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Posted 20 April 2016 - 07:03 AM

I figured my liver needed a break since the TKIs are so hard on it. It was a personal choice. I will say my life is much better off caffeine. No more midday slumps.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#11 Lisa Lisa

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Posted 20 April 2016 - 07:05 AM

Yes I also quit alcohol the day I was diagnosed. I have not had caffeine from that day forward either. I am wondering how many people adhere to this. My onc mentioned sparkling cider when I got to PCRU. I was really wanting that glass of wine but did not want to take that risk. When it comes down to it I'd much rather be undetectable than have a drink if there is the slightest chance of that changing my PCR. I cluck like a chicken when it comes to this. How many of us on here still drink?

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#12 scuba

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Posted 20 April 2016 - 07:23 AM

Every day. Two glasses of red wine (preferably Cabernet) before and during dinner.

Coffee in the morning to get things going.

Scotch and cigar on weekends with friends. Sometimes a martini, Gin, (or vodka if Patricia is around).

 

Cutting out packaged food (i.e. carbs) will do more for your liver than cutting small amounts of alcohol does to your liver. In JPD's case, he needs to cut out alcohol completely - it's not his friend. But for many of us who drink with food and limit intake, alcohol, especially red wine is o.k. and will not interfere with your TKI. And that's a good thing.

 

I have not - nor will I ever - allow CML to interfere with living and loving life, especially with friends, colleagues and sometimes family.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#13 JPD

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Posted 20 April 2016 - 07:59 AM

Scuba is 100% right in my case.  I'm an addict/obsessive... and oddly (or perhaps not), abstinence is as easy for me as moderation is hard.

 

I DO NOT think that alcohol has an effect on the meds - Ive never had any Onc mention that it might.  That said, we're still in new territory with TKIs so maybe they dont actually know.

 

Me and booze is more about me being a glutton with it - being a self-hating fatty because of it - and it contributing to my depression.  It's just not good.  Scuba nailed it, its not my friend.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#14 JPD

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Posted 20 April 2016 - 08:00 AM

wow :o

I think you should call the WAAAAAAmbulance


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#15 r06ue1

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Posted 20 April 2016 - 08:17 AM

Alcohol is bad for your liver, so is the TKI, double whammy, not good.  

 

I actually quit drinking years ago, haven't missed it a bit.  I quit Caffeine not long after my diagnosis, not good for the heart and TKI's are rough on that organ also.  Basically, any type of drug (alcohol (depressant), cigarettes (upper), caffeine (upper) and any other illegal and legal drug) is going to be bad for you when taking this toxic drug.  I've been exercising, eating right (avoiding those toxic foods and drinks which probably lead me here) and I actually feel better now than I have in years, which is odd since I am taking this toxic drug.


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


#16 kat73

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Posted 20 April 2016 - 10:02 AM

JPD - I think Dr. Skinner all those years ago proved an important point about animal response:  we will return again and again to something that gives us a reward, and avoid something that gives us punishment.  When this particular coin finally dropped for me, I realized that cutting calories was not a deprivation or painful drudgery, but rather was delivering me the reward of losing weight and looking tons better.  It was only when I began to see eating right as something good I was doing for myself that it became easy to say no to the glass of wine, or the bread, or the dessert, whatever.  The usual reason for overdoing the alcohol is that it makes you feel comforted in the short run.  Rewarded.  Intellectually, of course you know that it really doesn't work out that way long-term (for you right now, at least.)  CML and its accompaniments often makes us confront the feeling of powerlessness.  One extremely useful benefit of quitting drinking is the sense of self-control.  YOU are doing the choosing; YOU are making your own rules for the game;YOU are forgiving yourself for slips.  No punishment.  All reward.  As soon as that gets firmly put in place in your head, your path is clearly before you.  All you do is start walking on it.

 

As to your number - it's a whole lot better than it was last year, right?  Yes, talk to the onc about your concern, but don't get discouraged - it's going down, just in fits and starts and slowly.  A LOT of us have had that pattern and have gone on to get lower numbers at last.  In addition to getting as healthy as possible, you might review any possible absorption scenarios.  I decided to isolate my Sprycel-taking time from the rest of my meds, for instance.  And there's other things you can do that have been mentioned here over the years.

 

Hang in there, JPD, and throw that metaphorical .45 away.  I wish I weren't quoting L'Oreal, but - you're worth it.


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.


#17 Red Cross Kirk

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Posted 20 April 2016 - 10:09 AM

Soooo bummed.  Stuck at .28.  Gonna talk to Onc about medicine switch if I dont get a very good result in 3 mos.  The only thing that keeps me from suckin the end of a .45 (kidding, not kidding) is that there are so many people on here that were turtles and finally got PCRU.

 

Gonna STOP drinking since my best response yet came when I was not drinking.  Last three months I've been drinking waaaay too much.  That, of course, doesnt help with the depression (see above).  I dont THINK alcohol can mess with the absorption/effectiveness of the Tasigna - I'm not so sure.

 

This just sucks.

 

I'm bummed too.  A year ago I reduced from Gleevec 400mg to 200mg per day because I was tired of the foot cramps and small hemorrhages on my hands.  Before that my PCR had been going down every time. My March 2015 PCR was .045 and this March it was .041.  I recently asked my onc if maybe I should go up to 300mg per day or maybe change meds.  He hasn't responded yet.  I guess I should just be happy to be where I am.  I don't feel like a turtle anymore, I feel like a slug.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#18 Buzzm1

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Posted 20 April 2016 - 10:20 AM

I'm bummed too.  A year ago I reduced from Gleevec 400mg to 200mg per day because I was tired of the foot cramps and small hemorrhages on my hands.  Before that my PCR had been going down every time. My March 2015 PCR was .045 and this March it was .041.  I recently asked my onc if maybe I should go up to 300mg per day or maybe change meds.  He hasn't responded yet.  I guess I should just be happy to be where I am.  I don't feel like a turtle anymore, I feel like a slug.

Red Cross Kirk, what is your history?  .041 is a very low level.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#19 Melanie

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Posted 20 April 2016 - 10:29 AM

JDP - remember turtle power wins the race! Your trend is down and you may have hit a little platue, but you've made good progress from where you started. At two years in, I was still trying to find a TKI that I could stay on longer than 30 days. You're doing well and although you're not progressing as fast as some, you are headed in the right direction!

As to drinking...you alone know what you need to do. Although I was never a heavy drinker, I decided to stop having my nightly glass or two of wine about a year ago. Thought I would try to be as intentionally healthy as I could to give my TKI the best possible environment to succeed. Have no idea if that really helped me finally to reach MMR, but I felt better both physically and mentally. My little way of contributing to my own health along with the TKI. I now have an occasional glass of wine or cocktail socially, but I find even that small amount has a negative effect on me. Just don't think the liver can tolerate the extra toxin in my case.

Maybe sustaining would be good for you. Make you feel more in control. I hope so! Stay strong! Keep us updated on how you're doing!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#20 tinman1939

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Posted 20 April 2016 - 11:08 AM

Great discussion about alcohol use. I only weigh myself at the quarterly oncologist appointment and my last visit was a rude wake-up call. i had gained 10 pounds in three months and my blood pressure was elevated, even while on a blood pressure medication. That was in February. I haven't had a drop of alcohol since (versus having a beer after work most nights and a cocktail or two on the weekend), and have avoided foods/snacks with an abundance of sodium (so long, pretzels).

 

The opening thread by JPD mentions turtles; I am one. I was diagnosed nearly 10 years ago and the latest PCR test was 3.85. I have never been under 1.

 

My next PCR test is in late May.  It will be interesting to see if the alcohol stoppage has any impact on my results. Will let you know.






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