Jump to content


Photo

Big Day today ... I stopped taking Sprycel for 30 days to test remission


  • Please log in to reply
26 replies to this topic

#1 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 09:27 AM

My latest PCR result is in:

 

After 30 days of not taking any Sprycel - my PCR test came back today the same as the last two tests - undetected!

 

I can't begin to describe how I feel. After almost five years with this disease and assorted problems - failing Gleevec - developing myelosuppression so severe I was put on emergency infection alert, I have achieved a remarkable milestone: PCRU without any TKI.

 

My red blood cells are coming back (inching upward toward normal) and I feel great.

 

For what it is worth - this is my regimen:

 

1. Take enough vitamin D3 to get my blood level over 60 ng/ml - goal is 70 ng/ml. (currently at 15,000 I.U.'s).

2. 8 grams Curcumin C3 per day.

3. 300 mcg vitamin k2 per day

4. 1000 mg vitamin C per day.

5. lots of wine ... per day (except during Lent).

6. Debating with Trey - per day.

 

I suspect that getting my vitamin D level up is what did it and pushed CML out of the way. The Sprycel was needed to eliminate the majority CML population and buy time while my immune system was restored. That is my working hypothesis.

 

I have no delusions. I will continue my test without Sprycel for another 30 days and then take a PCR test again. If that test shows the same result - I am going to find a Chateau Margeaux and drink it. For now - I am drug free. And I just may be .... CML - free!


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

Louise1403989338

    New Member

  • Members
  • Pip
  • 8 posts

Posted 16 March 2015 - 09:30 AM

Scuba,

 

So happy for you.  Truly you have worked very hard for this and your information has helped many people including myself.

 

Congratulations.  Such incredible wonderful news for you.

 

 



#3 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 09:52 AM

Scuba,

 

So happy for you.  Truly you have worked very hard for this and your information has helped many people including myself.

 

Congratulations.  Such incredible wonderful news for you.

 

Thanks - we'll take 30 days at a time. The next two PCR tests will tell.


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 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 16 March 2015 - 10:14 AM

You need to be very careful about interactions with those last two items on your regimen.  Taking #5 first can significantly decrease your ability to absorb #6.  Taking #6 before #5 though may lead you to take far too much of #5.



#5 August1

August1

    Advanced Member

  • Members
  • PipPipPip
  • 69 posts

Posted 16 March 2015 - 10:24 AM

Wow, that's really great news, Scuba. Congratulations!

Thanks also for sharing your regimen. I fell as well that response has a lot to do with general immune system function. So you take 15,000 IU of D3 per day? Do you have to request that your oncologist run blood work specifically for that or is there a panel that we can request that would monitor D3 and maybe some others as well? 

 

Take care,



#6 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 10:46 AM

You need to be very careful about interactions with those last two items on your regimen.  Taking #5 first can significantly decrease your ability to absorb #6.  Taking #6 before #5 though may lead you to take far too much of #5.

 

You are absolutely correct - it's all about the order of #5 and #6. 

 

Beating CML is easy compared to debating Trey - but I half suspect that Trey is thinking about his own cessation trial. Taking Gleevec every day and trying to avoid nausea when deep down, he's probably cured has got to weigh on him. But I would not encourage anybody to stop taking their drug without making sure their blood vitamin D level is above 50 ng/ml and preferably 70 ng/ml.

 

I don't think Trey gets much sun. He's a dark figure, as you know - lurking in the shadows, behind closed doors mumbling. Exposure to the sun might cause him to ....


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 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 10:53 AM

Wow, that's really great news, Scuba. Congratulations!

Thanks also for sharing your regimen. I fell as well that response has a lot to do with general immune system function. So you take 15,000 IU of D3 per day? Do you have to request that your oncologist run blood work specifically for that or is there a panel that we can request that would monitor D3 and maybe some others as well? 

 

Take care,

I had to request that they do a vitamin D test (25 - Hydroxy) specifically. The vitamin D test  result is what led me to increasing my vitamin D3 vitamin intake so I can get my level up further. In the summer, I will cut back how much vitamin D3 I take as I plan on being in the sun more.

 

This is the panel I ask the Lab to take each time I go:

 

1. CBC

2. bcr-abl (PCR)

3. Lipid panel

4. Vitamin D test

 

Number 1 and 2 above are requested by Dr. Cortes for CML monitoring. I added number 3 and 4 for my own tracking and they had no issue with putting them together in one visit using the various color tubes Trey has described in other posts.

 

Vitamin D testing is very important if you decide to supplement because you want to be sure you don't take too much. 


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"


#8 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 16 March 2015 - 11:15 AM

Interesting theory about Trey and might explain a lot about his obsessive interest in blood.

 

Regarding the Vitamin D, I've never been tested for levels, but it's interesting that my own sudden drop in PCR comes after a year when I've changed over to cycling as my main form of local transport and also spent many hours outdoors chopping wood for my new woodburner.  I had been wondering if all the exercise might have been a factor, but I suppose t could have been the increased exposure to sunlight.  Interesting.  We probably won't know for sure until someone does a study finding a correlation between depth of response and incidence of skin cancer (says he, cheerily)



#9 ChrisC

ChrisC

    Advanced Member

  • Members
  • PipPipPip
  • 39 posts

Posted 16 March 2015 - 11:25 AM

Hearty congratulations on your continuing PCRU results, Scuba! Must be doing something right, right?

Here is more support re curcumin:

http://medicalxpress...ing-cancer.html

Carry on!

ChrisC

Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#10 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 11:55 AM

Hearty congratulations on your continuing PCRU results, Scuba! Must be doing something right, right?

Here is more support re curcumin:

http://medicalxpress...ing-cancer.html

Carry on!

ChrisC

 

My thinking is that Curcumin interfered with CML cells functioning (down regulated the various cancer pathways). Not so much a 'cure' as a 'brake' on expansion. It is more a prevention mechanism and augmented Sprycel impact so I didn't have to take as much. To achieve PCRU while on only 20mg was remarkable.

 

Vitamin D, however, causes cells - even leukemic blast cells - to differentiate and in some cases normalize ( and at the same time activates NK and T cells to recognize leukemia cells). It is the immune system improvement that I believe is giving me this result. Not where CML is zero, but where it can't grow and expand. CML is "checked". No doubt I still have CML stem cells. And for all I know, they are quiescent hence my response. But - should the CML stem cell 'niche' start dividing and try to expand - I have Curcumin and lots of Vitamin D circulating. That's my thinking. Instead of having to take a toxic drug that may be doing damage in other ways in order to keep CML in check, I take natural elements that may be doing the same.

 

There's no doubt that a TKI was needed when the CML was at a danger level unknown to us (i.e. fever, Spleen enlargement, blast cells). But once the bulk of the population was brought under control - taking the drug forever may truly not be necessary.

 

And the good news is that even if my PCR heads back up, I can always go back on the drug and check CML again. I am testing whether taking Sprycel or some other TKI will ever be necessary. Cross your fingers.


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 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 16 March 2015 - 12:56 PM

Great news, scuba. I'm surprised at how much research and self directing are needed with this big disease. It's frustrating, rewarding, exhausting, and interesting all at once. Maybe true of all big illnesses. Just my first experience with this. Hope your levels continue to stay low! Regardless, it sounds like this is working for you!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#12 acl

acl

    Advanced Member

  • Members
  • PipPipPip
  • 142 posts

Posted 16 March 2015 - 03:08 PM

That's great news, Scuba. Congratulations!


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#13 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 16 March 2015 - 03:22 PM

Awesome, I am going home and eating mustard! Mustard contains tumeric! LOL

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!


#14 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 03:30 PM

Great news, scuba. I'm surprised at how much research and self directing are needed with this big disease. It's frustrating, rewarding, exhausting, and interesting all at once. Maybe true of all big illnesses. Just my first experience with this. Hope your levels continue to stay low! Regardless, it sounds like this is working for you!

 

Dr. Ben Williams, UC San Diego, Dept. of Psychology is a Glioblastoma survivor. He was told his disease was "terminal" and that there was not much more they can do. He should go home and plan with his family rather than try and "cure himself'. Instead, he decided to go cure himself. Below is a link you might enjoy reading on his journey.

 

http://www.virtualtr.../surviveben.cfm

 

My approach to CML was to learn as much as I could. And then apply what I learned. One step at a time. If I had simply followed "doctor's orders" I would be taking full dose TKI with STIM shots and probably lead to some advanced stage because I would have so many drug interruptions. As long as there was no real harm in trying - I tried alternatives focussing on the immune system itself. So far - my efforts are succeeding. I am drug free. God it feels great.


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"


#15 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 16 March 2015 - 05:09 PM

Hey scubs! I'm at my appointment right now and asked if I could add curcumin.....they said no. ...wth? I want to copy u! Something about the enzymes? What's your thoughts? I'm on tasigna and I asked about sprycel and they said no even on sprycel. Typical.

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.


#16 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 08:32 PM

Scubs?  hmmm. Wait until Trey sees this ... 

You probably meant Scube's (with an "e").

 

I have been taking 8 grams of Curcumin for years. Years. 

Apart from starting to speak with a sub-asian accent, I have no ill effects (Trey will disagree).

 

I view my Oncologist as an advisor and collaborator - not my boss. My wife is my boss. Cross her and life ends - CML would be the last of my worries.


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"


#17 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 16 March 2015 - 08:36 PM

Wake me up in a year....then I will just begin to take notice of your PCR results......zzzzzzzzzzzzzzzzzzz 



#18 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 16 March 2015 - 08:46 PM

Nope I meant scubs like scooobs. Lol I'm going to do more research but i want to give ita try:) yes I Beleive us wives are much more dangerous then cml tehehe

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.


#19 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 08:52 PM

Wake me up in a year....then I will just begin to take notice of your PCR results......zzzzzzzzzzzzzzzzzzz 

 

Agreed. Go back to sleep. If I can continue month by month with no PCR increase - then perhaps you might consider same.

(I half expected a PCR expansion should occur off Sprycel that is measurable. It's possible it's building back up, just slowly. We'll know soon enough. It won't take a year. I expect six months. If after six months, I continue with no PCR expansion. I know I am on to something. In the meantime, Mr. Trey - get your vitamin D checked and eat some Curry.) 


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"


#20 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 16 March 2015 - 08:54 PM

Nope I meant scubs like scooobs. Lol I'm going to do more research but i want to give ita try:) yes I Beleive us wives are much more dangerous then cml tehehe

 

I don't mess with my wife. I say, "yes dear". 


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"





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users