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Gleevec 400mg @ 2.5 years - Results


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#1 LivingWellWithCML

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Posted 16 October 2013 - 05:28 PM

Hi everyone,

Just a quick update from my case ... input and feedback is always helpful.  After flattening out on the edge of MMR at 18 months, I started a slow, but steady, downward trend that is continuing.  It's just taking a long time to beat my CML down.  I wish I knew why, but hey - at least it's going down, right?

Date         Result (International Standard)

9/2012      0.12%

11/2012    0.12%

4/2013      0.08%

10/2013    0.04%

Questions for others:

  • I'm becoming increasingly curious about combo-therapy options, because I think that marrying up Gleevec with something additional could be the secret sauce for cases like mine to eventually reach a treatment-free remission (I don't think I'm going to get there on Gleevec alone).  Is anyone currently in a combo-therapy trial or treatment plan?  If you'd be willing to share a little bit of info about it and how it's going, I would really appreciate it.  I'm still considering @Scuba's circumin 8g/daily plan - I'm just a little worried that my whole body will start turning a burnt shade of yellow!
  • Have any of you followed a similar journey to mine and eventually reached PCRU after several years of a slow, gradual drop?  If so, how long did it take?

The Latest on my Routine:

  • At the advice of others on this board, I started a probiotic with breakfast to try and keep the gut feeling good.  I now take Gleevec later in the morning with a protein snack bar and some water, and it seems to settle in pretty well.  I still have some GI problems in the early morning, but it very well could be due to the 2 delicious cups of coffee that I enjoy around 5:30am daily.   I don't feel any GI issues when I take Gleevec.
  • I started taking a 500mg Vitamin C supplement with Gleevec several months ago (one of Trey's many excellent recommendations) .... and PCR is dropping ....... hmmmmmm?
  • I tried dissolving the 400mg dose in an 8oz glass of water one time, just to see how my stomach would feel -- it was pretty gross and a big hassle.  I wouldn't recommend it.  For me, I don't think it really made a difference.
  • Endurance exercise continues to be my Gleevec fatigue-buster.  I've been blessed with good health and big lungs, so I've taken up road cycling and put between 60 - 120 miles weekly into riding.  However, I do wonder if my fast metabolism and light weight might be negatively impacting the plasma concentration of Gleevec in my bloodstream.  It's total speculation, and I don't think there's anything I can do about it anyway.  What can I say -- I love biking and running, and it just feels great to be healthy and in shape!  The folks I cycle with have no idea that I'm dealing with CML - I think they would be pretty surprised.

Some observations:

  • Over the first 5 months of Gleevec 400mg treatment, I lost an eye-popping 30 pounds from my already-thin frame.  It was alarming!  Not sure if it was due to the TKI/GI interactions, an aggressive exercise routine, or anxiety (or perhaps a factor of all three).  Although I take in a lot of calories daily, I've only gained back a few pounds over the past two years.  I do burn a lot of calories on bike rides, but I had ankle surgery a year ago and while I was rehabbing I wasn't getting any real exercise at all -- and I still didn't gain weight.  I don't have an answer for it, so I'm just dealing with it and continuing to replace clothes that don't fit anymore.
  • It's possible to have detectable levels of CML, but still be healthy and active.  The body has the ability to adapt to its "new normal".  For example, my CBC/CMP numbers are all in the normal range except for RBC and Hemoglobin levels, which continue to hover below the normal range.  Why is this I wonder?  Fortunately, my body has adapted to this and it's having zero impact on my breathing and endurance ability.
  • I still get ringing in the ears (I hear it right now actually -- ringgggggg) that surfaced into the second year of treatment.  Others have mentioned something similar, so I wonder if it's an annoying side effect, or just hearing loss from years of drumming.  My doc is going to give me a blank stare when I ask him about it.  "Just keep taking your Gleevec" he will say ........

Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 GerryL

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Posted 16 October 2013 - 07:00 PM

Hi Dan,

I get GI issues usually first thing in the morning and I take my Gleevec about 3/4 of an hour later. Perhaps it is just the body trying to flush the last of the Gleevec out, from the day before.  



#3 LivingWellWithCML

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Posted 16 October 2013 - 07:29 PM

@GerryL - Fun, isn't it?  Do you drink coffee first thing in the morning, like I do?


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#4 mwaters50

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Posted 16 October 2013 - 08:56 PM

Hi Dan!  I don't have a lot of answers for your questions, but I can tell you this.  My mom was diagnosed 3 years ago with CML. She is taking the same dose of Gleevec that you are (along with her vitamins and something called transfer factor.) So in some areas of your journey, we can relate. But what I feel is the most important thing to tell you, is that my mom's BCR finally went down to zero after maybe 2 or 2 1/2 years. When she hit 18 months, she was really starting to get worried. She started doing what you are doing...looking for answers from other people with CML.

I wish I could offer you more than this, but I hope this helps you in some way!  If you want, you can check out transfer factor http://www.mskcc.org...transfer-factor (you may have to accept their disclaimer before being able to read up on it.)

I wish you good health and to continue your journey in a positive light! I truly believe that our expectations and moods can alter our well being!

Megan



#5 GerryL

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Posted 16 October 2013 - 09:57 PM

Hi Dan,

Nope haven't started on coffee prior to the morning's episodes. I did avoid coffee for a number of months in the beginning, but it isn't as much of a problem on the reduced dosage.

The GI can depend on where I buy my coffee from, when I'm at work etc nowadays the majority of the time when I do get the GI from the coffee, it is more gas occurring, I liken it to snap, crackle and pop having a party along my intestines.



#6 LivingWellWithCML

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Posted 17 October 2013 - 11:04 AM

Lovely description .......... yes, I can relate!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#7 LivingWellWithCML

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Posted 17 October 2013 - 11:12 AM

Thanks @mwaters50 - I wish your Mom the same and am happy to hear that she reached PCRU.  Could I ask you a few follow-up questions?

  • What prompted the introduction of Transfer Factor into her treatment plan, and when was it introduced?
  • Does she have any side effects from Transfer Factor?

I've never heard of it, so I'm curious....


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#8 mwaters50

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Posted 17 October 2013 - 11:25 AM

Dan -

My mom works in a hospital and one of the nurses she works with introduced her to it. It is basically cow colostrum, and she has had zero side effects. One reason why my mom takes it is to boost her immune system. It seems that whenever she gets sick, it affects her much harder and longer than people who are not "immune compromised."  My sister also takes it for her acid reflux and it has worked miracles for her. It is in the medical pharmaceutical book, and it should be able to get paid for by your insurance if your dr writes a script for it.

Let me know if you have any specific questions as I can ask my mom to get answers!

Megan



#9 LivingWellWithCML

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Posted 17 October 2013 - 11:33 AM

Very helpful - thank you!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#10 Trey

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Posted 17 October 2013 - 06:27 PM

I assume the Transfer Factor she is taking is from milk or eggs, not cow blood?  I would hope so.  Overall TF is one of those unproven remedies.  The theory is to introduce antibodies to boost immunity, so instead of getting a vaccine with dead virus (like a flu shot), TF directly substitutes the antibodies made by the lymphocytes of a cow after it has vaccines or  actual viruses.  So you introduce anti-flu and anti-whatever antibodies into the body from a cow or chicken. 



#11 Pin

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Posted 20 October 2013 - 07:56 PM

Hey Dan- Great news that you are still dropping - I'm very happy to hear this

With the hemoglobin/RBC thing - have you had your iron stores checked lately? Mine seem to keep dropping (RBC and hemoglobin was fine at last test, but stores were getting low again), so I take iron supplements every now and then to try and keep them normal. I wonder if it's possible that you could be running low on stores and it might be impacting the hemoglobin? Just a thought.

Question for you - you do weights as part of your routine don't you? Have you found it harder to lift weights since Gleevec? I have enormous trouble trying to do weights - I have good cardio, still get fatigued, but it's not too different to before - but I have a lot of trouble lifting a heavy pot off the stove so I think I need to work on my muscle strength. It just feels like I make very little progress in strenght and I'm wondering what other people may have experienced.


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


#12 GerryL

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Posted 20 October 2013 - 09:15 PM

Hi Pin,

I noticed I had less strength on 400mg, it has improved since my dosage dropped to 300mg and have been able to go back to lifting light weights as part of my exercise regime.



#13 LivingWellWithCML

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Posted 21 October 2013 - 09:35 AM

Hey Pin,

I haven't been doing as much weight training recently, but when I was, I reached a weight plateau pretty quickly and didn't make much additional headway in building strength beyond that initial plateau.  Is Gleevec a factor?  Perhaps, but I attributed it to my thin frame (I really just toned up and didn't get a lot stronger or bulkier) and lack of a disciplined routine.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#14 GerryL

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Posted 21 October 2013 - 06:10 PM

Hi Dan,

One thing you could try is drinking grapefruit juice, as long as you don't suffer from too many side effects. It might help improve Gleevec's performance for you as the Gleevec will hang around in your body for longer.

The other thing I've read, which you probably don't need is the Statins for cholesterol can also make the Gleevec hang around for longer.



#15 LivingWellWithCML

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Posted 22 October 2013 - 05:30 AM

Thanks @GerryL - I've never considered it, but now that you bring it up ... it might be worth a shot in my case, especially since I have such a fast metabolism.

BTW, I had my f/u with the onc on Friday and we had a productive conversation.  We discussed the pros/cons of Gleevec dosage increase vs. TKI changes vs. current quality of life.  After discussing for a few minutes, he convinced me that staying on Gleevec 400mg is the right decision for my case, because rigorous endurance exercise is such an important part of my well-being and it works my heart very hard, and my MMR is stable on the standard dose.  We simply have no idea what would happen if I tried to switch to Tasigna or Sprycel (e.g., PE and QT prolongation side effects are real risks, as we all know).

Given that I have limited side effects now, I believe that keeping Gleevec in my bloodstream a little longer wouldn't be dangerous for my case, so maybe grapefruit is a safe way to accomplish the same effect.  My bilirubin was running a little high (1.7 in Oct, but was 1.2 and 0.7 in Apr and Jan, respectively), but I imagine this would still be safe to try anyway.  What do others think?

We also discussed the possibility of a combo-therapy trial where Gleevec would be coupled with a natural supplement.  Not sure what's being considered just yet; he said he's got a couple of trials that are still awaiting approval, but I might actually get an opportunity to participate in one.  I don't think he's looking at Circumin though...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#16 GerryL

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Posted 22 October 2013 - 08:06 PM

Keep us up to date with what he is considering trialing. I take a few additional supplements well away from the Gleevec, most of them I was taking before Gleevec.



#17 Pin

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Posted 23 October 2013 - 06:39 AM

Hi Gerry, yes for me the lack of strength is very noticeable - it makes it very difficult for me to do weights and lift pots! Perhaps one day I will be able to reduce my dosage...not yet though...


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


#18 Pin

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Posted 23 October 2013 - 06:45 AM

It's possible that it's the Gleevec - I guess I just feel very weak overall. Perhaps I just need a bit more discipline!

That's a very interesting conversation you had with your doctor - I am scared of both of those things too in relation to my sport, and I really value my ability to exercise - it's one of the reasons I was considering a switch as fatigue is an obvious issue for me. But your doctor makes a good point, that perhaps the risk is not worth it.


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


#19 GerryL

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Posted 24 November 2013 - 07:05 PM

Hi Dan,

Just thought I'd let you know, I stopped the Gleevec on Wednesday 20th November. Had GI issues for about three more days, things seem to have settled down now. No Snap, Crackle and Pop, yeah.



#20 Kbruce4

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Posted 26 November 2013 - 06:51 PM

I have found that there are many medications that have serious reactions with grapefruit juice, I would check with your pharmacist before adding grapefruit juice to your routine






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