9 replies to this topic

[thomaskk]

Hi

Has anyone experienced CML progression after achiving CCYR in first three months of Gleevic. ?

Regards

Thomas

[Trey]

Your preoccupation with potential progression is both understandable and tiresome.  Can't you live with 95% certainty instead of 100% ????  You accept a lower certainty getting into your car. 

[thomaskk]

Sorry Trey

I was going through a real tough time. Being the CEO of a company I had to sign for a big contract where my personal involvement is very critical for a long period of time. I have not told any one about my disease as it may upset many in my team . For most of them any 'c' is the "C"

I was searching for probabilities before I commit . Anyway I sign the contract yesterday. Thanks.

Regards

Thomas

[LLawrence]

Thomas,

What you want is what we all want....a guarantee that if we do our part (take our meds faithfully, eat right, exercise), we will be in the majority of folks who do well.  We all can hope for that, but reality is, we only have control over our part.  So far, no one has shown me that any amount of will, cajoling, wishing can change what our cells do.  The lack of control can be particularly jarring for those of us in leadership positions who are usually in charge!  I choose to focus on what I have control over and hope that I'm in the successful majority. 

I am not a CEO, but am a senior partner in a small/medium business that depends on me.  I chose to tell my business partners (in confidence) because the reality is that although I hope to be in the 95 percent or so who are treatment successes, that is not under my control.  There is the possibility (less over time) that I could be out of work abruptly and with very little notice.  The majority of people in my office do not know about my diagnosis.  As time passes (approximately 18 mos, PCRU x  6 mos), I am able to give better and more optimistic predictions to my associates, but that possibility still exists.  Fortunately, my work environment has been supportive. 

Good luck as you make your choices.  I think the uncertainty of this disease is one of the hardest parts with which to cope. 

LL

[TeddyB]

Trey: Thats what my onc keeps telling me as well

thomaskk: All we can do is take our pill, and try to avoid stuff that interacts it, other than that, just try to forget it, even though its easier said than done.

If you got to ccyr after three months, your chances are not good, they are great!

I wasnt ccyr at three months, and im still here, 2 years after, and meds seem to be working just fine for me, try to think that they will do the same for you, and if the first one should fail, there are always more you can try which usually does the trick, and even then, there is the option of BMT if EVERYTHING else fails

Teddy

[August1]

Hi Thomas,

Congratulations! If you've hit CCyR in 3 months you're doing really well. That's considered an optimal response. By comparison it took me about a year to get there. The odds of progression would be extremely low for you. There's no such thing as a 100% guarantee (we do have CML) but you're in a really good place in terms of response. Plus, as TeddyB mentions, you're on Gleevac and still have several second-generation TKIs you could take if necessary. 

I think the trick is to trust that the treatment is working for you, which it definitely is, and allow yourself some peace of mind and focus on life as you know it. It's not always easy and I'll admit that I'm definitely still working on this myself!

One other thing is that you may notice various side effects, etc., as your body adjusts to the "new normal" while on TKI therapy. These side effects vary for all of us in occurrence and intensity. If you do experience any of these side effects recognize that they are very common. Don't confuse side effects with disease progression.They have no bearing on the effectiveness of the TKI. Your blood work should remain the golden standard for assessing that.

Take care,

Bill

[Trey]

You will certainly live to either enjoy the fruits of your success or to pay off the debts from your business losses.  Maybe you will be happy either way.

[Trey]

http://community.lls.org/docs/DOC-1271

http://community.lls.org/docs/DOC-1273

http://community.lls.org/docs/DOC-1272