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Update - My numbers are getting better

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#1 CML2012


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Posted 04 December 2016 - 04:28 PM

If you check out my signature you will see that I lost PCRU this past spring and am in the process of regaining good results. My oncologist wanted me to switch from Sprycel to Tasigna but I said no. I told her it would get better! I was dealing with a huge amount of stress (which is very much under control now) and I was in the middle of menopause. My oncologist and obgyn both said neither should cause my PCR numbers to go up but I told them "how many of your patients are dealing with stress and menopause....do you really know if it affects the TKI or the CML? Well now I am almost through the menopause and the stress is greatly reduced! Look at the numbers in my signature ๐Ÿ˜Š Just a note, even though my oncologist did not agree with me she was willing to support me as long as I stayed below 1%. Now she says I should be a case study!!
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#2 hannibellemo


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Posted 04 December 2016 - 05:19 PM




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#3 Melanie


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Posted 04 December 2016 - 06:50 PM

Congrats! I too believe menopause and stress have an effect. Can't believe they don't think it does. Crazy! Anyone who has gone through menopause and a great deal of stress knows the effect it has on our bodies, let alone our mental health. It's too bad it's not understood better. Way to hang in there with your own intuition!
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)

#4 gerry


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Posted 04 December 2016 - 06:59 PM


We've seen a year of high level stress affect one of our members who had been TFR and negative for over 4 years have the CML return. My personal belief is that for a small number of us stress was the key factor in CML making an appearance. There are a number of ex carers in the TFR group.

I have discussions with my doc about this, he isn't exactly on board, but then again he doesn't dismiss my theory outright, since he doesn't have a better one to explain it. :)

I don't think it is the reason for most CMLers, as something else may have gone wrong with their immune response to the mutant cells.

#5 kat73


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Posted 05 December 2016 - 11:01 AM

It seems plausible.  We know stress affects the immune system - this is a documentable fact - and we think the immune system may be implicated in the onset of cancer.  It's plausible.  We wander in the wilderness of mystery.  Even with all our science, I suspect we will never solve the death thing.  A mystical force or intelligence - God?  Mother Nature? - demands that all things living must die.  I am continually amazed at the trillion different ways (he/she/it) finds to accomplish that.  We discover TKI's, but the stem cells remain impervious. The unintended consequences of hitting healthy cells for decades may also turn out to be lethal, eventually.  We try chemo - cancer mutates.  We try immunotherapy - people die of autoimmune crisis.  And no one can figure out how to prevent cancer because cancer itself is tied too closely to how all cells are created and live.  But back to stress - I do wonder about people who get to 102 - are they perhaps blessed with a body that doesn't process stress like the rest of the population? 

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.

#6 gerry


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Posted 05 December 2016 - 05:10 PM

Good genetic makeup for some should be included. My folk are heart attack and stroke people, on maternal and paternal sides, but cancer is rare in our families. Perhaps we all drop dead from the heart issues prior to it eventually happening. On the news this morning they talked about the success they are having with immunotherapy treatment (on mice) for aggressive breast cancer. Lung cancer is also being looked at for immunotherapy treatment. I also saw an excellent show on the research they are doing regarding stress levels on breast cancer sufferers and whether this allows the cancer to escape into the lymph nodes.

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