17 replies to this topic

[scuba]

http://www.medpageto...ematology/61857

 

In an interim analysis of the phase II DASFREE trial, 63% of patients who stopped taking dasatinib (Sprycel) were still without loss of major molecular response (MMR) a year after discontinuing medication, said Neil Shah, MD, PhD, of the University of California San Francisco, and colleagues.

 

"These data build upon the growing body of evidence supporting the feasibility of TFR in patients with CML-CP and demonstrate that with frequent monitoring of BCR-ABL1, patients treated with dasatinib in the first and second line can successfully discontinue treatment. Longer-term follow-up is ongoing," the authors concluded.

 

... probably would have had higher rates of success if they followed my formula as recommended by Trey:

 

1. Omega 3- (krill oil)

2. Cinnamon with chromium (sugar control)

3. Zinc / selenium

4. Magnesium (at least 400 mg sometime 600-800 per day)

5. Only grass fed beef.

6. Curcumin (lots of it)

7. Garlic (4 grams per day or food)

8. Nuts (almonds)

 

I so look forward to my next cessation trial. Maybe as soon as January!

[gerry]

That is good news on the increase of percentages for stopping with the sprycel.

[kat73]

I see the study defines DMR at 0.0032.  What if your lab only reports to "less than or equal to 0.01"?  How do you qualify for a formal or informal cessation trial?

[scuba]

I see the study defines DMR at 0.0032.  What if your lab only reports to "less than or equal to 0.01"?  How do you qualify for a formal or informal cessation trial?

 

There is debate in CML research regarding this value. The sensitivity of the test is in question at these low levels. At M.D. Anderson, they report deep molecular response as borderline undetected at < 0.01% (M.D. Anderson scale). This number corresponds to 0.0032% International scale. I am allowed to try cessation at any value less than MMR (0.1%). 

[janne]

http://www.medpageto...ematology/61857

In an interim analysis of the phase II DASFREE trial, 63% of patients who stopped taking dasatinib (Sprycel) were still without loss of major molecular response (MMR) a year after discontinuing medication, said Neil Shah, MD, PhD, of the University of California San Francisco, and colleagues.

"These data build upon the growing body of evidence supporting the feasibility of TFR in patients with CML-CP and demonstrate that with frequent monitoring of BCR-ABL1, patients treated with dasatinib in the first and second line can successfully discontinue treatment. Longer-term follow-up is ongoing," the authors concluded.

... probably would have had higher rates of success if they followed my formula as recommended by Trey:

1. Omega 3- (krill oil)
2. Cinnamon with chromium (sugar control)
3. Zinc / selenium
4. Magnesium (at least 400 mg sometime 600-800 per day)
5. Only grass fed beef.
6. Curcumin (lots of it)
7. Garlic (4 grams per day or food)
8. Nuts (almonds)

I so look forward to my next cessation trial. Maybe as soon as January!

[janne]

Scuba, you forgot one...Vitamin D3 with K2.

[Dona_B]

Thank you for re-posting supplements. Saving this time around.

[gerry]

They are also doing a stop trial in the UK for people with very low levels of CML - under MMR. In the end it still comes down to the individual, Scuba chooses to try cessation, he is under the care of a very good doctor and his results contribute to the doc's knowledge. If some of us don't try to stop, then we will never know whether it is successful or whether there are long term consequences in stopping.

[scuba]

Scuba, you forgot one...Vitamin D3 with K2.

 

Darn - you are so correct - and these are the most important ones! 

[kat73]

There is debate in CML research regarding this value. The sensitivity of the test is in question at these low levels. At M.D. Anderson, they report deep molecular response as borderline undetected at < 0.01% (M.D. Anderson scale). This number corresponds to 0.0032% International scale. I am allowed to try cessation at any value less than MMR (0.1%). 

Well, OK, that's for MD Anderson's 0.01.  But Hopkins only reports to <0.01 International Scale.  I doubt a study would accept that as an equivalent to 0.0032.  Maybe they just talk amongst themselves and decide if they'll let a person in anyway . . .

[VickiW]

Just happened across this. 

Hi Scuba!  remember me???

 

Had not seen the supplement list before, thank you for re-posting.  Already doing most of it, just started the curcumin and was already taking the D3 combo but my PCP just upped my dosage after a bone scan showed early stage osteoporosis.  

 

I'm at 8 month TFR after being on only 20mg every OTHER day of Sprycel for more than a year.   Not in an "official" trial.  I qualified for the LAST but couldn't work out the travel logistics, etc.  I am still being VERY closely monitored by a great Onc anyway.

[gerry]

Spoke with the naturopath a couple of weeks ago and I have started a blood glucose supplement with cinnamon etc, also have a spray vit D & K2, plus upped the dosage of the tumeric and some Q10 for the side effects of the ezitrol, though it isn't a statin. CML blood test in a week, so will see if it starts to make any difference to the cholesterol. Fingers crossed.

[scuba]

Just happened across this. 

Hi Scuba!  remember me???

 

Had not seen the supplement list before, thank you for re-posting.  Already doing most of it, just started the curcumin and was already taking the D3 combo but my PCP just upped my dosage after a bone scan showed early stage osteoporosis.  

 

I'm at 8 month TFR after being on only 20mg every OTHER day of Sprycel for more than a year.   Not in an "official" trial.  I qualified for the LAST but couldn't work out the travel logistics, etc.  I am still being VERY closely monitored by a great Onc anyway.

 

Hi Vicki - Great to learn you're doing great! I just had my 3 - month blood draw at M.D. Anderson. If my results are the same, I'll switch to 10 mg every day of Sprycel until next test and if that is the same - I'll start my own cessation trial again. My CBC came back and showed my vitamin D level at 54 ! I was amazed how low given that I take 5,000 IU's of vitamin D3 alternating with 10,000 IU's every day. I will be increasing my vitamin D3 intake to get my level back up to 70. 

 

All the best

[JLS]

(gerry's Photogerry
11 Dec 2016
Spoke with the naturopath a couple of weeks ago and I have started a blood glucose supplement with cinnamon etc, also have a spray vit D & K2, plus upped the dosage of the tumeric and some Q10 for the side effects of the ezitrol, though it isn't a statin. CML blood test in a week, so will see if it starts to make any difference to the cholesterol. Fingers crossed.)
Hi gerry,
Been battling high cholesterol especially high triglycerides since taking sprycel. Im now 3 months on the LAST trial but still nothing has changed. What do you take for cholesterol issues?
Scuba
Thank you for the supplement list.
My vitamin D is very low still even though I take 5000 a day, I will be increasing that as well.

[scuba]

JLS - Take your vitamin D3 with food that has some fat in it. Vitamin D3 is only absorbed during fat digestion. I make sure to take mine when I am eating foods like eggs, or an avocado or some almonds. Any food with fat will do.

 

A friend of mine took his vitamin D3 with oatmeal and had no change (also 5,000 IU's per day). Once he switched to taking it with fat his vitamin D levels improved quickly.

 

I take 5,000/10,000 alternating days and my vitamin D level fell to 54 ng/ml. I try to keep it around 70. Winter does have a dramatic impact of vitamin D stores in the body (lack of sunshine). I have since increased my own intake for the next week or so.

[gerry]

JLS,
At the moment I am on Ezetrol for the cholesterol, statins started giving me muscle issues. I am taking supplements as well to see if I can reduce it through them. I haven't got my results back yet. But have noticed I feel less sluggish since starting them, not sure which of the new supplements is assisting with that.
If no change, I will try two eggs a day.

I am not entirely convinced about cholesterol, but due to the fact I have evidence from an MRI that I have had at least 10 minor strokes in my brain, I will continue to try to reduce it. Weight / diet is not the issue for me, but genetics is.
When I see my results I will report. :-)

[VickiW]

Scuba - I take my D3/K2 at the same time as my krill oil.  That works for the fat, right?

Also, I am on a very low dose statin to keep the cholesterol under control after knocking it down and everything is within the norms except my triglycerides which have actually shot up.  ????  My PCP just laughed and said I've been snacking too much.  He's not been with me very long (my old PCP retired) and I don't believe he knows much about TKIs.  (I chose him because his specialty is diabetes which I developed last year because of TKI damage to my pancreas which was one of the reasons I decided to go TFR.)

[gerry]

Got my results back (still PCRU) thankfully.
Cholesterol now back in the "good" range, this was a non fasting test, so pretty good so far. I will continue with the supplements for another two months, if my cholesterol continues to drop I will look to halving my Ezetrol. Doc will be surprised I continue with his two monthly monitoring, but it is handy for me at the moment.