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#41 Billie Murawski

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Posted 02 March 2015 - 11:00 PM

I have never been so confused in all my life! What am I supposed to be seeing or not seeing or getting a glimpse of.

Wheres Geppetto?



#42 Antilogical

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Posted 03 March 2015 - 04:49 PM

That was scary.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#43 PhilB

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Posted 03 March 2015 - 05:24 PM

okay, but I really don't know what an algorithm is.

That's easy.  It's one of the famous sayings of your former Vice President.



#44 Antilogical

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Posted 03 March 2015 - 06:14 PM

Which one was that?  The one that invented the internet?  BAHAHAHAHAHA!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#45 gerry

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Posted 03 March 2015 - 07:02 PM

Hi Pin,

Are you on probiotics as well? That will help with your tummy.

keeping my fingers crosses that that is the problem and once fixed you'll be back on track as you were in the beginning.



#46 Billie Murawski

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Posted 04 March 2015 - 02:53 AM

That's easy.  It's one of the famous sayings of your former Vice President.

  Thanks PhilB, that clears that up for me if a politician uses that word it has no meaning at all.



#47 Tedsey

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Posted 07 March 2015 - 04:23 PM

Hi Marnie,

 

Nice to hear from you too!  Sorry for the late response (I have been overwhelmed by school, family crisis--my MOL died and we are working out taking care of my husband's bro who lived with her--I also got sucked into local politics).  I have been reading from time to time, but not commenting.  Nice to hear the voices of old BIFs.

 

Crazy.  We never know if the sympoms we have are the meds or not.  The only way to know is by going off.  And that option is often looked down upon (unless of emergency).  Wish the docs were more on the same page.  Hope the 50mg is working well for you.  Since you can have PE and PAH without symptoms for quite a while (until it gets real bad), it is frustrating.  I have never had a test done on my heart for anything.  When should this be done?  I have been on Sprycel just shy of 5 years...better late than never I guess.

 

I just had a horrible reaction to Keflex (cephalexin) for a little thumb infection.  I felt like I was dying after the first dose.  But since I had such an unusual reaction (such is my life), the doc suggested I stay on it.  Big mistake!!!!  Anyway, all is well now since I stopped.  I wonder if it was the Sprycel, but there shouldn't be any interaction.  Anyway, one of my biggest reactions was soaring heart rate, severe headaches, nausea and tight chest.  All heart-like symptoms.  Now I am scared that it may have affected a PAH I may already have due to Sprycel (see, always worried--catastrphic thinking).  I will beg my oncologist to recommend a cardiologist next visit.

 

Maybe this is in our heads.  After having PE, I would only fear it is back and that I also I have PAH.  Why not?  You got one "rare" thing. Why not another?  (see, knowing too much can have a big downside, and I know I am not helping--sorry!).  At least you checked out OK.  I wonder what it could be?  If you feel uneasy, I would keep on it.  Never ignore your gut (I mean instincts, since gut can mean many things to a CMLer).  Maybe your muscles (organs?) have a kinesthtic memory that takes a while to go away.

 

Keep posting how you are doing.  Hope the PCR goes to 0 on 50!

 

Best of luck,

Teds

 

 

 

 

 

 

 

 

 

Hey, Tedsey. . .sorry that you've been having such a rough time of it.  It's nice to hear from you again.

 

I'm having some similar issues with Sprycel, though to a lesser degree.  I'm currently taking 50 mg, after two pleural effusions.  I was off TKIs for about a month and have lost PCRU and MMR and can't seem to regain it, which is a frustration.  Lately, I have the chest tightness and wheeziness that you talk about.  I had a chest x-ray about a month back and it showed nothing.  My onc can't hear anything when I breathe, though my PCP heard the wheeziness.

 

Like you, I'm just not sure what to do about it.  I had a full battery of lung tests and they saw nothing.  I had an echocardiogram and they saw nothing.  I'm left wondering what is going on or if it's all in my head. 

 

I go in for bloodwork today (ugh. . .the roads and traffic are going to be awful with the snow that was just dumped on us!).  It will be interesting to see if my PCR has dropped at all. 

 

Anyway. . .I think I understand a bit what you're feeling.  It's so interesting to see the huge range of responses that people have.  For some, getting to a deep response and keeping it is so easy.  For others, not so much. 

 

Good luck and stay in touch.  We've missed you here.

Marnie



#48 Billie Murawski

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Posted 08 March 2015 - 12:15 AM

That's easy.  It's one of the famous sayings of your former Vice President.

Do you mean good ol Al?  There is no good ol politition anywhere.



#49 Pin

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Posted 11 March 2015 - 09:49 PM

Hey Gerry,

I've finally taken your advice!! I've started probiotics, I decided it didn't matter what happened last time I took them, this is getting to crisis point! I didn't notice anything at first, but I started feeling a bit better after about 5 or so days...we'll see if it keeps up...


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


#50 gerry

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Posted 12 March 2015 - 12:32 AM

Hopefully you will keep getting better, which in turn will keep the Gleevec around long enough to be absorbed. Would like to see you get to a stable PCRU by the end of the year. :)



#51 Pin

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Posted 07 April 2015 - 12:33 AM

I would love that too. I was stable MR4.0 for over a year, close enough is good enough? But then this happened...we'll see.

 

Funnily enough, I am mostly upset that I signed up for a study that interviews people in MR4.0 or lower about their attitudes to stopping treatment. I was really looking forward to that interview, super interested in the questions they were going to ask me. But your last test had to be verified as MR4.0, which it was....until a month ago :(


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


#52 gerry

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Posted 07 April 2015 - 01:56 AM

Pin you and I are going to be positive about you getting to PCRU. :)  Sending you some virtual hugs. ( ) ( ) ( ).



#53 Pin

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Posted 07 April 2015 - 02:58 AM

Thanks Gerry, you're such a champ :) Always encouraging! xx

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


#54 scuba

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Posted 07 April 2015 - 06:09 AM

Today I visit the Lab for another PCR test - monthly now. This one came up fast since I stopped taking Sprycel on February 10th.

I can't believe it's been two months without Sprycel. My last test on March 10th had me 30 days post Sprycel PCRU. If this test comes back the same - that would make it 60 days PCRU - and my confidence that I'm on to something will increase.

 

Lets cross our fingers on my big - break all of the rules - experiment.

 

Trey: This will be two months down on our 12 month wager. I hope you're still rooting for me even if you lose the bet. I'm still 50-50 this will work.

 

(Where's my Curcumin and vitamin D ???)


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"


#55 Pin

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Posted 07 April 2015 - 07:46 AM

Good luck Scuba!! You are a pioneer :)

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


#56 Frogiegirl

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Posted 07 April 2015 - 07:56 AM

Yay scoobs!!!!! You've got this!

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.


#57 Louise1403989338

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Posted 07 April 2015 - 12:12 PM

Scuba,

 

I really hope your pcr comes back "0".  You really deserve this.  Please post as soon as you hear the results.

 

Best of luck, I will keep my fingers crossed.



#58 rcase13

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Posted 07 April 2015 - 12:34 PM

I think everyone is hoping this works out. We seem to have a cancer that never seems to use the words remission and/or cure. Let's change that!

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!


#59 scuba

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Posted 07 April 2015 - 01:11 PM

O.k. - back from M.D. Anderson - pretty fast blood draw. Clock is now ticking. I'll get the CBC results later this afternoon.

I expect them to continue ticking upward into the normal zone (for red blood). My new normal is going to be the true normal.

 

And then I wait a few days (probably next week) for the PCR result. Pretty exciting doing this.

 

My thinking remains:

 

1. My immune system was compromised because of low vitamin D and impressive lifestyle.

2. A CT-scan in 2003 triggered the bcr-abl translocation. My body could not deal with it at the time - and so CML started.

3. A few years later - I began not to feel good - low grade fever, heart beat accelerating, light headedness. Assumed it was just aging. My wife insists I go to a cardiologist. Cardiologists insists I see a hematologist.

4. I see a hematologist - Diagnosed with CML - borderline accelerated phase (lots of blasts, but not blast crisis) - started on Gleevec 400mg immediately.

5. Wonder drug - WBC's came down quickly - I felt much better - fever disappeared, heart beat lowered. Mild nausea when taking gleevec, solved that with oatmeal. Started chasing my wife again. (not that I stopped).

 

6. PCR = 155%, FISH = 100% - all sorts of bad things in my bone marrow (dysplasia, monosomy 7, trisomy 8, horrible). Gleevec did not seem to go after the genetics, but symptoms are gone.

7. After several months, FISH barely moved, now 70%, PCR still high at 90+% - but myelosuppression kicking in big time. WBC's crashed, platelets crashed, RBC's falling. My wife thinks I'm dying. I tell her, we're all 'dying' - just some sooner than later. First Oncologist wants to increase my Gleevec dose from 400 to 600 and stim shot me. I decided to take charge myself and not rely on just one doctor.

 

8. Did lots of reading during this time - learned about Curcumin, read up on Trey's CML primer by coming here to this forum. Continued to learn, learn, learn. Read up on biochemistry, genetics, research papers. Started to form opinions, hunches, and ideas. Began debating Trey. What a rush.

 

9. Decided to seek a research professional in the field - Dr. Cortes was selected.

10. Started Taking Curcumin, started to modify my lifestyle (i.e. burning at both ends because I like to burn at both ends).

11. Visited Dr. Cortes and he stopped Gleevec and switched me to Sprycel 70mg. No stim shots due to concern about stimulating cancer.

13. Visited Dr. Cortes one week later for CBC - disaster, ANC crashed to 0.1 - Sprycel stopped.

14. Learned my wife really loved her husband - me  - she cried on the ANC news. I told her - I still don't need Cialis. She cried some more.

15  Blasts decreased and told risk was small at this stage for expansion (into accelerated phase). Come back in a week. Stay off Sprycel - but I continued Curcumin. 

12  Came back in a week - no change. Puzzle because Doc expected a bump up. I told him Curcumin - he told me, "whatever'.

 

13. Continued this way for 3 months. Little change - but slowly came to low normal. FISH actually DROPPED even though I had no TKI. Doc asked about Curcumin.

14. Dr. Cortes starts me on 20mg. Sprycel. No side affects that I could feel. WBC's dropped but stayed out of danger zone.

15. Big change - in 3 months FISH goes to Zero, PCR goes to 1%

16. 3 months later - PCR drops to 0.1% = MMR, but funny things in bone marrow. RBC dropping to 25% below normal, ANC holding at low tolerable.

17 PCR continues to drop 0.05%. Stays there and bounces around. Trey plateau sets in. For the next year or so PCR bounces around this level, blood counts become rock solid at new "low normal". At least only on low dose. Start to think less of CML and more about heart health.

 

18. Go for physical before getting back in shape - find out vitamin D is very very low. Learned all I could on vitamin D. And its impact on immune function espeically T-cells and NK-cell activation. 

19. Increased vitamin D to over 50ng/ml from low of 17. Goal is 80.

20 Next PCR goes undetected for first time following increase in Vitamin D. Bone Marrow at last BMB shows no sign of dysplasia - cells normal. Trisomy 8 still present. Zero blasts. Still 20 mg Sprycel. Still don't need Cialis - but thought about it.

21 Decide to stop Sprycel and test remission durability. Dr. Cortes tells me, "what...are you nuts?" (not really but seemed that was his response). I tell him, I have a hunch, I must check it out. Risk is low after all based on the STIM trials. He agrees to watch me and monitor monthly - but does disagree with my approach.

 

22 On February 10th, 2015, I stop Sprycel - no TKI - continued Curcumin and Vitamin D3, K2, A (carrots).

23. On March 10th, PCR tested and comes back undetected after 30 days. of no TKI. Dr. Cortes suggests we go another month and see. We're month to month now.

24. Today April 7th - PCR tested again  .... almost 60 days.... now I wait and see.

 

Target remains to go 4 months with no PCR change and then I will switch to a 3 month testing program. If I remain PCRU, I will go six months testing. and If I continue PCRU - I will go once a year for the rest of my life. And consider this ordeal closed. My plan, my decision my life. 

 

What a rush.


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"


#60 JPD

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Posted 07 April 2015 - 06:43 PM

Scuba - how long did you go total before MMR?

 

 

 

 

ps - you are a fuckin warlord.  Hats off.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%





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