11 replies to this topic

[Floa7]

I have had CML since Jan 2012. Been on 400mg of Gleevec. The past year my tests have gone up every 3 months from 0.5% to this past Friday to 2.6% The oncologist left it up to me to switch to another TKI. Since I don't have much for side effects, we are increasing the Gleevec to 600mg/day. I hate to switch the Gleevec since its going generic next year.

 

I am in good health only take the Gleevec and a calcium D and mineral pill a day. My blood pressure is 112/69. That sounds low to me for my age. My age, well I get Medicare next year.

 

I asked doc about my legs cramping and my joints jolting. I step just right and it feels like my knee was going out from under me. last for a second. My shoulders and elbows also do it. The doc said it was from Gleevec. Well lets see what I do now increasing it. I get blood tested at 3 weeks and 6 weeks.

 

 

[Trey]

That is a reasonable approach.  Don't take the calcium or mineral pill within a couple hours of the Gleevec since they can hinder Gleevec absorption.  But try taking a Vitamin C along with the Gleevec which may help Gleevec absorption.

[carrie]

Floa7,

I seem to be in the same boat.

I was diagnosed in 2007. I went on Gleevec 400, went up to 500 for awhile,  then even 600, nothing changed so back down to 400.

After 7 years on Gleevec, I have never gotten to 0.

Here are my Quantitative PCR Numbers International Scale.

August 2012             0.166

December 2012        0.038

March 2013              1.155

April 2013                 0.798

July  2013                 0.104

Oct. 2013                 0.099

Jan. 2014                 0.701

April 2014                1.986

May  2014               1.063

Sept. 9, 2014           1.799

Sept. 24, 2014         2.817

 

If my blood draw in December goes up from the 2.817, then my doctor wants me to try a new chemo. I am scared about switching as I have to teach school and I don't want worse side effects from a new drug. Gleevec has kept me low, but never got me to 0.

Not sure why I stayed on Gleevec for 7 years. I have had the mutation test run 4 times and they can NOT find a mutation so they think something is going on but not sure. I wish I knew what to do!!!!!!

Carrie

[Marnie]

Hi, Carrie. . .I'm a school teacher, so I understand your concerns about side effects.  For me,  Sprycel side effects have been far easier to handle than Gleevec side effects when it comes to the classroom.  I think that the Tasigna dosing schedule would be very difficult with this type of job.

 

I have had 2 pleural effusions on Sprycel, but it hasn't been that big a deal to have them drain the fluid. 

 

Good luck with your decision.  My PCR numbers dropped significantly when I switched from Gleevec to Sprycel, which was an added bonus.

 

Marnie

[carrie]

Marnie, I have a tendency to have respiratory infections (LOTS) so I don't know if plueral effusions would be easy or not. Having the fluid drained sounds horrible. Tasigna does not sound fun either. I am not sure what is going to happen. I don't like change or the UNKNOWN.

I really wished the Gleevec could do its job for me.

[Trey]

The reasons for slow response are many, and kinase mutations are only responsible for a relatively small percentage of lost responses.  The primary factors influencing speed of response begin with drug uptake.  Drug uptake must occur in two stages, first from the alimentary canal into the blood plasma, and secondly from the plasma into the leukemic white blood cells (the only place the drug has any effect on the leukemia).  All of us have different levels of uptake for each of these two stages.  The first is generally the easier uptake.  The second uptake into the WBCs occurs by different mechanisms for each TKI drug.  Gleevec relies on something called an "efflux pump" named hOct1.  The hOct1 pump brings the drug into the cell.  We have varying levels of hOct1 effectiveness, and not much can be done to change that.  But Sprycel, Tasigna, and maybe others do not rely on hOct1, so that is one reason why response is better for these drugs for some people. 

 

Another reason for slow response is drug effectiveness once inside the leukemic WBCs.  Sprycel works in both the active and inactive state of BCR-ABL signalling, while Gleevec and Tasigna only act on the inactive configuration.  Also, Sprycel and Tasigna bind more effectively (could be called "stronger") to BCR-ABL mechanisms, usually shutting the leukemic process down more effectively for most people. 

 

Generally, when someone hovers around MMR level response for as long as Carrie has, and drug dosage increases did not help, it is best to switch drugs.  It is not certain that side effects will be worse.  But even if they are, it is more important to beat the leukemia down to as low a level as possible. 

[Floa7]

Trey, I did get some vitamin C. Now I got my acid back, maybe the increase of Gleevec, but Gleevec likes acid. Tums relieves it thou. Which I take later.

 

Yesterday I was having some pressure in my eye, looked in the mirror and the white of my eye is blood shot. Going to call the eye doctor this morning. But I am suppose to be cooking for tomorrow. Just what I need blood shot eye for Thanksgiving.

 

You all have a happy Thanksgiving.

[Trey]

The blood in the eye is subconjunctival hemorrhage, which the Gleevec causes.  Tiny capillaries in the eye and elsewhere become thin due to the Gleevec, so they can break easily.  Bending over and blood rushing to the head is one thing that can bring this on.  If a person takes blood thinners or aspirin it might be more likely to occur.  There is nothing the doc can do for it, so if it were me, I would ignore it.  Too bad you didn't have it for Halloween.  Enjoy Thanksgiving anyway.

 

http://www.mayoclini...on/con-20029242

Edited by Trey, 26 November 2014 - 09:29 AM.

[carrie]

I have had three eye bleeds in 7 years from Gleevec. It starts to turn orange, then yellow, then disappears. There is nothing you can do about it. The students at school thought it was "gross". I had fun with the students.

 

Trey, thank you for the response about my "slow response". What drug do you think would be best to go to? I value your opinion, and have over the last 7 years.

[Trey]

Since you mentioned respiratory problems, Tasigna or Bosutinib might be better choices.  Tasigna has eating restrictions (which are probably bogus for 99% of people, i.e., should only apply to those with heart QT issues) and Bosutinib does not have much history yet.  I would probably try Tasigna.  If it were me, knowing I have no heart QT issue, I would ignore the eating restrictions and eat and take the Tasigna whenever I wanted to.  But the dosing instructions say otherwise.

[carrie]

Trey, First of all Happy Thanksgiving.

 

Second of all I hear the boardwalk shop area in San Antonio is really cool and I hope to go visit there sometime.

 

Thirdly, thanks for answering me. I do not know what the QT is after the word heart. I don't have any heart problems that I know of.

 

To bad Bosutinib does not have much history yet.

 

I go for my blood draw December 8th and then my appointment Dec. 17th. Then I will know more. Not sure what he will do if the numbers go back down. I have been a true roller coaster for years.

 

Have a great day. You are so incredible for helping everyone. Many blessing to you.

Carrie

[Floa7]

That is a reasonable approach.  Don't take the calcium or mineral pill within a couple hours of the Gleevec since they can hinder Gleevec absorption.  But try taking a Vitamin C along with the Gleevec which may help Gleevec absorption.

Guess I am resistant to Gleevec, vitamin C didn't help either. My 6 week blood test went from 2.6% up to 8% I am switching to Tasigna when the paper work all gets approved. My son went to Sprycel about a year ago.

Public health don't know what to check our water for or I would get it checked. The 18 yr old next door also has AML.