27 replies to this topic

[hannibellemo]

Gail,

 

I would agree with you whole heartedly if it weren't for the mental illness outlier. 

[Gail's]

I agree hannibellemo. Mental illness can cloud thinking for sure. I don't know the ropes of declaring someone incompetent, but wouldn't they at least have to be willing to go to a dr for that evaluation? Or tie them up and drag them there. I'm just not sure how that works. And, since 1 in 4 Americans meet the definition to be called depressed, and antidepressants are one of the top 5 drugs used in the US, will a quarter of the population at some point be considered just a bit incompetent?

[tlb3868]

Thanks everyone for all the info. I read him what Trey wrote about on what to expect. Still didn't change his mind. He's convinced the drug will kill him faster. I already have power of attorney because of his previous surgeries. Will call my attorney and see if there is anything I can do. He no longer sees any doctor other then his PCP and only takes his pain meds.

[Trey]

There are little girls taking these drugs, and have now for over a decade.  They are growing and becoming active, healthy adults and living normally, and not complaining like a little wimp who cannot even bring himself to live for his children.  These drugs are not toxic, they just have side effects.  The side effects diminish with time (usually a couple or few months) if a patient remains on the drug. 

 

Your husband will indeed get his death wish.  He may think it will be OK, but he is looking at the process as a concept.  When the reality hits him, and the disease has advanced to the point where the drugs will no longer work, he will change his mind and want the drugs.  But it will be too late.  He will die miserably.  He will get his death wish, but he will not get what he wants. 

[pammartin]

I believe one thing we all may forget at times is almost all drugs have side effects, some greater than others.  My PH meds have some pretty nasty side effects and after  year on them I am still experiencing the same ones I had upon starting.  A few of them are similar to my Sprycel days, and it would be difficult for me to say which drug has more or less  Sometimes, I wonder if we do not focus so much on the side effects that we forget the positive sides to these TKI's.  Without them death is immanent. Yes, we are all headed down that road at some point but a healthy life can be achieved when on TKI.

 

There has been quite a bit of excitement on the boards in the past months about stopping TKI's and maintaining undetectable.  I cannot help but wonder if we are somehow giving people incorrect information, because they are coming in to this journey that many of us have been of for several years or more.

 

TKI's save lives.  Perhaps for a while we should all focus on that, instead of who has had an opportunity to enter a trial or have a health issues that removes the TKI from the equation. 

 

Thinking out loud and hoping we are not sending out information that is not related to everyone. 

[hannibellemo]

Pam,

 

That is a very thoughtful post. Six years ago the comments here were more about supporting everyone through the side effects, and we got a lot of laughs when most of us were on Gleevec, and support for the newly diagnosed. Then, thankfully, the 2nd gen TKIs were more readily available for those of us with serious issues with Gleevec, whether it was loss of response or quality of life.

 

I don't think I'll ever be one of those who can stop taking Sprycel and I don't care. I don't care if I remain PCRU. All I want is enough response to stay alive and live a fairly normal life without too much stress and anxiety. We lose sight of the fact that we only need to be CCyR to do that.

 

I do think doctors need to start paying more attention to quality of life and maybe doing a little experimenting when we request it of them to lower our dose or think outside of the box in terms of dosage.

 

Thanks for the opportunity to reflect.

[hannibellemo]

Dear tlb,

 

As the mother of a recovering addict I absolutely know you can't control your husband's actions. I hoped if he could receive treatment for his bi-polar illness then he would be able to think more clearly about the path he is chosing. I'm aware he has other health issues on top of his CML and I have no doubt that is discouraging for him. I stress the mental health aspect of this because at his age, with his family responsibilities, I find it hard to believe he would make this choice if he was thinking rationally.

 

If he is determined to die, then your thoughts must turn to what is best for you and your children. I hope you will consider talking to someone about your situation. Your mental and emotional health is of the utmost importance for your children's sake.

 

Good luck and please don't think you are being held responsible for your husband's decisions. That choice and the consequences of his decisions are his alone. Just make sure you and your children are protected and taken care of. If there is a support group for families of mental illness you might want to see if it would be helpful for you.

 

My thoughts are with you.

[DebDoodah22]

TLB

http://www.namiiowa....support-groups/

Here are some links to resources in Central Iowa... You and your family will be in my prayers.