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Had achieved MMR but lost it

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Hi all, 

Short history

DX Aug 1 2017     PCR 100    IS    Dasatinib 100mg for 1 month, then 1 week drug break due to suppression, then 100mg every other day for 2 months

Nov 3 2017           PCR 35.96 IS    New Onc. Dasatinib 50mg daily for 2 weeks then 70mg daily until mid Sept. 2018 (297 days) 

Nov 30, 2017        PCR 14.8   IS

Jan 4. 2018           PCR  2.64  IS

April 12, 2018        PCR  0.17  IS

July  19, 2018        PCR  .23    IS

Sept 7, 2018          PCR  0.1    IS  MMR and dose reduction to 50mg daily ( I really enjoyed the reduced dose)

Nov 14, 2018         PCR  0.15  IS

My journey was scary and bumpy at first. Taking 100mg every other day for two months was my old Oncs idea of how to use up the 30 x 100mg tablets I happened to have on hand at the time. I found a new Onc and got on a pretty long run of 70mg daily. (297 days). 

I was very happy to achieve MMR at 13 months and was grateful for the dose reduction to 50mg. 

Now 8 weeks later, my PCR has bumped up to .15      My Onc is not too happy that I'm now above MMR. 

My Onc and I agreed on a new dose regimen of 50mg and 70mg on alternating days. This is an attempt to get extra drug into the battle without having to take 70mg every day as my quality of life was somewhat diminished on the 70mg daily dose. I battled draining fatigue most days.  My next PCR is in 8 weeks.

My Onc has said he wants to try a new TKI if this approach is not successful. 

Curious what you all think about this dosing approach, the idea of switching drugs and the fact that I've had two upward blips in my PCR history. 

I visit this site regularly and am grateful for all the info and support. 

Thanks, 

Riggered

 

 

 

 

 

 

 

Your dosing approach is reasonable.

I also suggest nutritional support for your immune system so you give your TKI an added assist.

Do you know your vitamin D level?

It needs to be between 50 - 80 ng/ml so your T-cells are activated against CML. Low vitamin D is helping CML avoid your immune system.

Also consider vitamin K2 which helps your overall cardio health (and enables a higher vitamin D level)

http://www.nutritionaloutlook.com/article/vitamin-k2%E2%80%99s-promising...

Take both vitamin D3 and K2 on the same day.

 

Note: Once I increased my vitamin D blood level, my PCR plummeted. I am PCRU on 20 mg Sprycel.

I am religious about taking 5,000 IU's one day and 10,000 IU's the next (in winter). I maintain a blood level ~70 ng/ml with this dose.

 

Riggered, no need to get upset over the difference between .1 and .15 - statistically insignificant!  It is in the nature of the test to produce upward (and downward, but of course, we always love those) blips, all along the way.  Nobody has a history of a straight downward trajectory here.  If you tested the same day, it would be a different number.  The trend is everything.  Keep doing what you're doing and see what the next 2 or 3 PCR's look like.

Thanks Scuba....

I had my Vitamin D level checked about 3 months ago. It was 74  ng/ml

My daily supplement list:

  1. "Liquid Vitamin D3 with K2".  125 mcg D3 (as Cholecalciferol), 50 mcg K2 (as Menaquinone-7 (MK-7)) mfg: Ortho Molecular Products
  2. "Q-Evail 100"    CoQ10         2 x 100mg caps.  mfg: Designs for Health Inc. 
  3. "Theracumin HP"                1 x 600mg cap.  water dispersable tumeric rhizome providing 30% curcumin  mfg: Integrative Therapeutics. 
  4. "Coriolus"         Coriolus mycelium and fruiting body (Chinese Mushrooms)  3 x 300mg caps. mfg: Myco Herb
  5. "Marrow Plus"  Ji Xue Teng contains Spatholobus stem, Ho-shou-wu root, Salvia root, Codonopsis root, Astralagus root, Ligusticum root, Rehmannia root, Tang Kuei root, Lotus seed, Citrus peel, Red date fruit, Oryza sprout, Gelatinum asini. 

Pretty sure I picked up the idea to take D3 and K2 along with the tumeric-curcumin from reading your posts along the way (Thank you!)

 The CoQ10, Coriolus and the Marrow plus were suggested my acupuncturist who I see weekly. She is savvy on the Eastern approach to healing and her treatments have helped to keep be balanced in body and mind.

My Onc looks askance at the Marrow Plus but he has not prohibited it. 

I take all the above stuff with my Dasatinib in the morning in an effort to not forget. 

I've also been taking a dropper full of CBD oil before bed and have enjoyed better sleep, no grog in the morning. 

No alcohol since DX. Always trying to get more exercise. Rowing, walking, hiking, etc. 

I know you're deep into the details on all this so I appreciate any tips on how to tweak my regimen. 

Thanks to all...

 

 

 

 

 

 

 

  

 

Hi Kat,

Yes we sure do love the trend....when its downward. Like you say.....will see what the next couple of PCR's look like. 

Onward to .00000 

 

 

 

 

 

 

 

 

 

 

 

 

 

as i said in my thread 

maybe this will be useful for other patients , especially if they were just searching just pcr results for a relief like me months before . i will update after every test.

her(my mother's dosage and PCR results ) 

reading just the results will be enough , dont bother to read all :D 

https://www.cmlsupport.org.uk/thread/11381/18th-month-pcr-result-blip-an...

 

hope you will get better results ...

FYI the pharmacist at Sloan suggested I stay away from any mushroom supplements, don’t know to if that is only with Gleevec. You might want to check it out.