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#1 scuba

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Posted 16 November 2015 - 09:18 PM


As many here know I decided to try cessation once I achieved  < 0.01% M.D. Anderson scale - which is below detection at some labs and noise in others. 

I first achieved this result in June 2014 while taking 20mg. Sprycel. In February this year, I stopped taking Sprycel. Below are the monthly results:

PCR history 2015:

February < 0.01 (M.D. Anderson scale)
March < 0.01
April = 0.01
May = 0.10
June = 0.02
July = 0.04
August = 0.05
September = 0.17
October = 0.20

My latest result following re-start:

 

November = 0.04 (M.D. Anderson Scale ~ 0.01 I.S. Scale).

 

It took over six months for my PCR to slowly rise to 0.04 after I stopped Sprycel and one month to drop back down to the same level after I re-started. I am pleased that re-starting dropped my PCR back down.

 

I will try again next year at cessation. I will keep trying - and re-starting as needed.

 

Thanks all for your support,

 

Michael


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"


#2 Louise1403989338

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Posted 16 November 2015 - 09:43 PM

Good news. Happy to hear. So you are trying another cessation in a year?

#3 scuba

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Posted 16 November 2015 - 09:48 PM

Good news. Happy to hear. So you are trying another cessation in a year?

 

Almost certainly. When my PCR falls below 0.01% then I will consider trying again. I won't be month to month testing, so it will be quarterly review. At least no more driving monthly to M.D. Anderson. 


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"


#4 DebDoodah22

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Posted 16 November 2015 - 10:09 PM

Thank you for your pioneering ways - and for leading discussions from a strong desire to live the most healthy TKI free life, while pressing the limits to understand how this disease works in you.

#5 survenant

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Posted 16 November 2015 - 10:45 PM

In my case, I want to add Pioglitazone to the Sprycel (50mg) for one year. But my family doctor is afraid to prescribe Pioglitazone because it could be harmful to the heart.  In France, there is a second clinical trial with 25 patients who don't have diabete. The first clinical trial was with 3 patients with diabete. 

 

Link:   Adding Pioglitazone to Imatinib May Improve Treatment of Chronic Myeloid Leukemia

           Targeting Stem Cells in Chronic Myeloid Leukemia with a PPAR-γ Agonist

 

 

Clinical trial

EudraCT Number: 2009-011675-79 Sponsor Protocol Number: ACTIM Start Date*: 2009-07-10 Sponsor Name:CH-Versailles Full Title: A PHASE II STUDY TO ASSESS EFFICACY AND SAFETY OF PIOGLITAZONE (ACTOS®) AS ADD-ON THERAPY TO IMATINIB MESYLATE (GLEEVEC®) IN CHRONIC PHASE CHRONIC MYELOGENOUS LEUKAEMIA (CP-CML) PATIENTS IN MAJOR...

#6 scuba

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Posted 17 November 2015 - 03:50 AM

Update: I heard back from my Oncologist and he is thrilled with this drop in PCR after re-start. Usually reversal mirrors ramp up. He told me that if I stay on 20mg. I only need to be monitored every six months. So ... do I stop therapy - test every month? or stay on therapy - and test every six months as he recommended?

 

If any of you have driven to Houston's medical center you know this is a tantalizing choice.


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"


#7 Frogiegirl

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Posted 17 November 2015 - 02:25 PM

Yikes Scoobs that's a hard decision, on one hand it makes your life just a bit easier not having to test constantly and on the other your making interesting personal CML data, that may come in handy one day??? Congrats anyhooooo :D  I just need a progression free 9months.......uhhhggggg.


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.


#8 scuba

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Posted 17 November 2015 - 02:50 PM

Yikes Scoobs that's a hard decision, on one hand it makes your life just a bit easier not having to test constantly and on the other your making interesting personal CML data, that may come in handy one day??? Congrats anyhooooo :D  I just need a progression free 9months.......uhhhggggg.

 

I have enough data that confirms CML is a slow disease when in chronic phase for me. And that I respond very favorably to re-start as the data in other trials suggests. It's just too bad I can't stay off Sprycel completely like I had wanted. But at least I know that if I stopped, I can go for many months - almost a year and stay within MMR. For me, stopping (or missing a dose here and there) is no longer a big deal as it was when I first decided. I'm hopeful that keeping the pressure on CML will ultimately burn out the top level stem cells. Or something will come along to accelerate the process. I'm likely to go one year (instead of six months) next time before I stop again - although I am pondering a one month on, one month off strategy. The benefit of stopping in the summer is to not burn in the sun. This past summer was fantastic because staying off drug enabled my skin to tan and not burn at all. We'll see.

 

Since you want to have a baby, you might consider testing how your body responds to stopping your TKI. It's possible you will either have a quick jump in your PCR which will require you go back on drug and hold off getting pregnant or it might be that you maintain your current level for months.


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"


#9 Frogiegirl

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Posted 17 November 2015 - 02:58 PM

My Doc and I now have a plan, I have to go 3 more tests(9months) PCRU then I go off TKI cold turkey and we hit the ground running. I asked if we should test my "durability" to see if I hold response after a month off and he said no. we are going to literally hit the ground running. scares me a bit but I really want my last one.  I might feel more comfy waiting a month off drug and  then testing,may have to push for that. I would hate to orphan my boys trying to have another :( 


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.


#10 scuba

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Posted 17 November 2015 - 03:16 PM

My Doc and I now have a plan, I have to go 3 more tests(9months) PCRU then I go off TKI cold turkey and we hit the ground running. I asked if we should test my "durability" to see if I hold response after a month off and he said no. we are going to literally hit the ground running. scares me a bit but I really want my last one.  I might feel more comfy waiting a month off drug and  then testing,may have to push for that. I would hate to orphan my boys trying to have another :( 

 

what happens if you get pregnant and your PCR starts to climb?


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"


#11 Frogiegirl

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Posted 17 November 2015 - 03:43 PM

He said we do nothing until I lose mmr. Then we start interferon. I heard that drug is like death. Makes you sooo sick. But it's the only drug that doesn't cross to the baby......

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.


#12 rcase13

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Posted 17 November 2015 - 04:46 PM

So in 18 months we will have a little frogiegirl or boy running around!

Good luck!!

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!


#13 CallMeLucky

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Posted 17 November 2015 - 08:56 PM

I suggest staying on with 6 mo. tests. From the studies I have read cessation only seems practical after a sustained deep molecular response. In my opinion you are not waiting long enough. Go to 6 mo testing, do 2-3 tests and if your numbers stay way down, then try to go off.
Good luck
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%
 

 


#14 pammartin

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Posted 17 November 2015 - 09:19 PM

I have been waiting for your result after returning to the 20mg of Sprycel.  Although your journey is a personal one, it gives those who are recently diagnosed and long term diagnosis individuals hope for a future free from TKI.

 

Thank you for your courage, detailed information, and sharing of your personal journey.  Whatever you decide to do it will be your choice and your plan, something that is not always possible with CML. 

 

Like you have stated many times, I do not advocate stopping a TKI without the support and guidance of professionals. That being said, I will be TKI free two years in March 2016.  I am still being tested every 3 months via Cleveland Clinic but I believe I am going to change insurance the first of the year and move everything to UPMC in Pittsburgh where I have to go for the pulmonary hypertension.  I am hoping to advance to 6 month testing in the future and after next year I would be comfortable with annual PCR tests.  As long as the PH stays under control, I consider myself one lucky individual, actually I am one lucky individual even with the PH.

 

Best of luck with your continued journey. 



#15 scuba

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Posted 17 November 2015 - 10:15 PM

Michael, glad to know your PCR result. That is encouraging.

I have watched an old movie "Lorenzo's Oil" last week. The movie reminded me of you and Trey in a way.

 

Me and Trey in a movie? I'm the good lookin' one.


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"


#16 Melanie

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Posted 17 November 2015 - 11:16 PM

Congrats Scuba on quickly regaining 0.04. Totally understand the drive into MDA and would avoid it too if at all possible. I'm down to every 6 months, but have been trying to convince them to once a year. They're not going for it yet.

If you do decide to stop again, anyway you can have your PCR test done local and sent to MDA lab? I've had to do that a couple times and it's worked out okay.

On another note, how do you convert the PCR result from MDA to IS and why don't they use the IS? Been meaning to ask Dr Cortes, but seem to always forget to.

Thanks for being the pioneer you are and keeping us updated on your experience. It's encouraging!
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)

#17 Widgeonus

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Posted 18 November 2015 - 08:29 AM

Congrats Scuba on quickly regaining 0.04. Totally understand the drive into MDA and would avoid it too if at all possible. I'm down to every 6 months, but have been trying to convince them to once a year. They're not going for it yet.

If you do decide to stop again, anyway you can have your PCR test done local and sent to MDA lab? I've had to do that a couple times and it's worked out okay.

On another note, how do you convert the PCR result from MDA to IS and why don't they use the IS? Been meaning to ask Dr Cortes, but seem to always forget to.

Thanks for being the pioneer you are and keeping us updated on your experience. It's encouraging!

I was told that .28 MD Anderson is equivalent to .1 IS. So, if you take MD Anderson's results, and multiply by .35 you should get a rough calculation of IS.



#18 scuba

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Posted 18 November 2015 - 09:18 AM

Congrats Scuba on quickly regaining 0.04. Totally understand the drive into MDA and would avoid it too if at all possible. I'm down to every 6 months, but have been trying to convince them to once a year. They're not going for it yet.

If you do decide to stop again, anyway you can have your PCR test done local and sent to MDA lab? I've had to do that a couple times and it's worked out okay.

On another note, how do you convert the PCR result from MDA to IS and why don't they use the IS? Been meaning to ask Dr Cortes, but seem to always forget to.

Thanks for being the pioneer you are and keeping us updated on your experience. It's encouraging!

 

Widgeonus' answer above is correct on doing the conversion. It's not a true conversion however, just an approximation, but close enough for interpretation. M.D. Anderson reports using their own scale because they are M.D. Anderson.  I.S. was developed so different labs can compare results between them. It's not perfect however given the way the tests are done somewhat uniquely in each lab (have to grow RNA from samples). I do know that M.D. Anderson prefers their patients to have tests done by their lab. My previous lab work was for the most part discarded and new tests taken before Dr. Cortes would diagnose and prescribe. 

 

For more detailed info on I.S. scale:

 

http://www.whereareyouontheis.com/#Q3

 

Regarding my testing - I am being told that if I want to move to six month testing, that's fine (up to me). There is a move now (after years of TKI experience the professional community is gaining) for patients who have achieved MMR having quarterly testing is not necessary. This is true only while on continuous therapy. Should I stop again, I have to go back to monthly testing (actually - every other month because of my history). Since I have now resumed my 20mg daily program, I will test every 3 months until I reachieve so-called PCRU and then I'll go every six months for a year. At that time, I will stop again and see if I can maintain remission. Only this next time, I won't let the PCR rise before re-starting. As soon as I get a positive reading, I'll go back on. It seems to take 3 months for that to occur. I just want summers without Sprycel. I'll be o.k. with that.


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"


#19 Trey

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Posted 18 November 2015 - 07:54 PM

"My Doc and I now have a plan, I have to go 3 more tests (9months) PCRU then I go off TKI cold turkey and we hit the ground running."

 

Does the "hit the ground running" thingy refer to trying to get pregnant?  Never heard it put quite that way before.  Interesting mental imagery. 

 

Also interesting that this is within the context of a post titled: "Cessation Interruptus".  Hmmmmm.  I could get a warning point here....must be very, very careful.....

 

"That's all I have to say about that."  -- Forrest Gump


Edited by Trey, 18 November 2015 - 08:00 PM.


#20 pammartin

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Posted 19 November 2015 - 12:09 PM

Trey, although it is often apparent what you are eluding too, I always want to see you write it anyway.  Warning points?  I think you are immune.






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