Advanced Member
Posted 28 December 2012 - 09:23 AM
I just received my latest PCR results: 0.006% IS scale. Limit of detection is 0.001
My last report three months ago had me at 0.01% IS scale. Not quite another log drop and within the error band, but still heading in the right direction.
What a painfully slow process. But as I am only on 20mg. Sprycel (plus 8 grams Curcumin), I should be thankiful.
We'll celebrate tonight with a Chateau Latour (yep!) and an Arturo Fuente "work of art".
Happy New Year to all!
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"
Advanced Member
Posted 28 December 2012 - 12:19 PM
Awesome results!
Happy New Year
Advanced Member
Posted 28 December 2012 - 01:37 PM
Hi: Great results. I have had computer trouble for over 8 weeks now, and I am still having trouble getting onto this L&L website. I probably missed a lot of things going on, but I hope I can get back on here now.
I am still trying to get my doctor to let me cut back on the Gleevec. I see her in January, and I am also going for my PCR test before I see her. We are going to have a serious discussion about my dose at this appointment.
So happy for you. I know you have a goal you want to meet in your fight with CML, and your going to do it.
Happy New Year
Susan
Advanced Member
Posted 28 December 2012 - 03:59 PM
wow amazing! i am still waiting for my first three month results. bloods are all good though lowish platelets. bone marrow looking much healthier than at diagnosis but waiting for cyto genetic results - not sure what would be good. you must be so thrilled!
alex
Advanced Member
Posted 28 December 2012 - 10:18 PM
Thanks Susan! Great to see you back.
You know how I feel about your situation. You're CURED. You don't have CML anymore. After 10 years (especially following Interferon) with most of your years at PCRU - there's not a single CML stem cell left. I am puzzled why your doctor doesn't at least let you reduce dose (as Trey has done) to lessen the side affects.
In my case - I had severe mylosuppression and other issues and had to reduce dose - and still was able to have a dramatic drop to where I am now. There is - admittedly - some discussion whether the Curcumin I take is augmenting the performance of 20mg Sprycel. Some at M.D. Anderson believe the Curcumin is definitely having a positive impact. Others are not sure without a scientific trial. My response on only 20mg. is considered significant. I am still experimenting with different Curcumin's and will try a different combination for these next 3 months (I change every 3 months to keep with the PCR cycle).
One thing I have decided not to do is not take Curcumin. I just don't want to chance seeing the PCR number go up a log or two. In that sense, I fully understand why you and Trey continue to take Gleevec - even though you probably don't have to. Something about letting snakes sleep.
Happy New Year
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"
Advanced Member
Posted 29 December 2012 - 07:53 AM
Congratulations, Scuba! I, too, keep slowly going down on my 50 mg. (perhaps the PE was a gift in disguise). 1/2 a log from MMR and it's been 7 months since the PE resolved. Keeping my fingers crossed for you and me!
Susan,
I've missed you! So glad you were able to get back to the site, it's so frustrating (and scary) when we can't communicate with our peeps! Good luck with your onc. You may just have to give an ultimatum because you could find someone else who will work with you to lower your dose. Perhaps a phone consult with one of the biggies in the field could be persuasive enough for her, It's tough cause you have a history with her and I'm sure there are loyalty issues. Good luck!
Happy New Year!
Pat
Pat
"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>
Member
Posted 30 December 2012 - 05:16 PM
Congratulations Scuba ! You are almost there !
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 9/2012.
12/2012 Detectable.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Advanced Member
Posted 31 December 2012 - 03:06 PM
Thanks Scuba and Pat: Something needs to be done. My platelet count is dropping steadily, and I was hoping to reduce the dose to possibly help my kidney functions. Yes, we are definitely going to have a long visit. I think she might listen to me at this point. She said I am her longest patient being on a TKI drug with a good response. She told me she used my case at a few of her conferences.
With our finances right now I am concerned over cost. I need a refill on my Gleevec right now, and that would be the 400mg. dose. I think if she would just cut me back to 300 first I would have to get some 100mg tablets and then break my 400 in half to get the 300mg. Unless she will even agree to the 200mg. I feel we can just run my blood work sooner if I cut back to see how I am doing. I am ready to take a chance. The curcumin would not be for me, as its also a blood thinner, and I do not want to try that route right now.
I will post what happens after I get my blood work results along with my VISIT.
I am glad to be back also. Seems like the board is not too active right now, probably due to the holidays.
Happy Healthy New Year
Susan
New Member
Posted 31 December 2012 - 07:39 PM
Hi Susan,
I dropped to 300mg after a year of being negative and so far have maintained that. In the beginning I would take 300mg during the week and then use up my remaining 400mg tablets on the weekend. I've found I have more energy now I'm on the 300mg and also that my strength has now returned. I still get fluid retention and muscle and joint issues though, so haven't lost all side effects. When I first started seeing my doc he was adamant that you had to keep hitting the CML hard, but as my figures got to negative, he agreed that I could drop to 300mg. He has even agreed that I could have a go at stopping in October, though for him it is just a drug holiday. LOL
Stay strong with your doc and get her to agree to drop you to 300mg and if you continue to do well, as you should, look to drop to 200mg as your maintenance dose.
Advanced Member
Posted 02 January 2013 - 11:48 AM
Cheers! Glad to hear the great news!
Hugs,
Tedsey
Advanced Member
Posted 02 January 2013 - 07:51 PM
Wonderful news! Congratulations!
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
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