18 replies to this topic

[tlb3868]

I'm not sure how he's doing. The only test he gets is a CBC every month or so. He seems to be doing worse then last time I posted. He still refuses to see any oncologist and only sees his family doctor monthly. I posted his latest CBC results any info would be greatly appreciated. I wish I had more to say but he's unwilling to take anything or seek a doctor. We have our oldest graduating high school this year and I don't know whether he'll be alive or not. Not a good feeling. (recap) husband stopped treatment well over a year ago. Has T315i mutation and refused to take iclusig.

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[chriskuo]

Can you and his primary doctor stage an intervention?

 

LLS may be able to refer you to a local resource to discuss the situation with him?

 

What reason does he give for not taking a TKI, and specifically Iclusig?

[tazdad08]

Im glad you posted. Sorry that you are this situation. I wish I had advice or knowledge to give you. I'm sure Trey or on of the others that are so great with numbers will chime in soon.

[Trey]

It is hard to tell from a CBC since that is not the best tool for assessing CML status.  But his neutrophils are getting quite high, and also his basophils are high which is a poor indicator.  His Blast count is 5% so is getting into an unacceptable range.  He may have had a recent virus or infection since his lymphocytes are also high. 

 

If he thinks he may just be able to die more slowly than some others, he may be right -- but not by much.  But he is not doing well, and he will do much worse soon. 

 

There is a new clinical trial for T315i patients:

http://community.lls...ew-drug-bp1001/

 

I hope YOU are doing OK. 

[tlb3868]

Thank you all for the responses. I'm doing as good as can be expected. Thankfully raising 3 teenagers keeps me busy! I printed the info on the clinical trial. I'll try my best to get him to rethink what he's doing. I tried to scare him with what's going to happen to him if left untreated. Nothing has so far worked. 17 years of marriage and the man can't be bothered to take a pill to live for his family. I'm just so dumbfounded. The CBC is the only test he will get. He refuses to go to any oncologist. Ive made him many appointments but he cancelled them.

Like I said before our oldest is graduating in May. Im spending as much time with him before he's off to college. Just sucks not knowing if his father will be a part of his graduation.

[CMLParent]

Hi tlb. I'm very sorry to hear about your situation. I know you must feel helpless. Has he always had the 315i mutation? Has he ever taken a TKI? Why is he refusing Ponatinib?

[tlb3868]

He got the mutation last year. Never really took his meds much before. That's probably how he got the mutation. He doesn't want to take any meds because he says they make home feel worse.

[CMLParent]

He got the mutation last year. Never really took his meds much before. That's probably how he got the mutation. He doesn't want to take any meds because he says they make home feel worse.

How is he feeling right now? Any symptoms or is he mostly feeling normal?

[tlb3868]

He sleeps most of the day, says his whole body hurts all the time. He gets out of breath,fatigued when he tries to do anything. Tells me it's like the worst flu that never goes away.

[CMLParent]

I'm sorry to hear that. One thing I would make sure he understands is that when the disease progresses to an acute leukemia things will become much harder. Once the disease progresses to the blast phase the cancer cell becomes genetically unstable. Any impact the TKI would have on the disease would be generally short lived in this phase.

Once he gets to the blast phase things will become very unpleasant. He won't get a do over. He is in Chronic phase and now is the best time to make a commitment to ponatinib.

[Red Cross Kirk]

It sounds like he has chosen to let the disease run its course and doesn't want to fight it.  I can't imagine how hard that must be for you and your family.  Take care of yourself and your kids.

[Trey]

We discussed this issue last year

http://community.lls...it/#entry179840

 

....but here are some more thoughts:

 

Use the clinical trial information to show it is not hopeless.  It does not seem to be as much a hopelessness issue as a dumbass issue, but who knows.  I know he has heart and lung problems, so   The clinical trial drugs are usually free.  But there are only two locations for the trials that I know about. 

 

It seemed from your previous post he does not like taking drugs since that shows some kind of weakness or some other unknown thing, and prefers the ostrich head in the sand approach, thinking he might somehow be the one person in history who overcomes CML just by the force of his own will.  He will come to his end and no one will help him.

 

We discussed a psychologist last year, but if he has any friends have them try to reason with him.  They can be more direct with him and get away with it.

 

Make a big deal out of making funeral arrangements and ask him where he wants to be buried, cremated or not, ask about insurance distribution, what he wants done with his chainsaw, does he want the kids to be at his funeral since he does not seem to care about them anyway, anything to constantly talk about him being dead and what will need to be done.

 

I compared the results from last year with this year.  CML can be slow moving at first, but it accelerates later.  It seems he was diagnosed fairly early (I think 2014??) with fairly low WBC, which is why he has done "OK" so far.  But the CBC is showing acceleration or worsening in the basophils and eosinophils especially, and also in blast count.  These are clear signs of acceleration, so if he thinks he can "beat this" on his own he is sadly mistaken.  He is definitely losing the battle, even though the CML is not yet in its final stages of acceleration.  The problem with CML is the patient can feel OK for quite a while (year or two) but after that the CML accelerates.  When that happens the drugs will no longer work.  make sure he knows he is about at the end of decision time to use drug therapy before he gets to the point where the drugs will not work.  That is also the point where the real suffering from the disease will start.  He has not even begum to suffer yet -- make sure he understands that point if nothing else.  If he feels bad now, it will get a whole lot worse and there will be no way to make it feel better.  He is near the end of playing games with CML.  It is final decision time -- does he go into the terminal stage and suffer more than he could ever imagine, but then the CML drugs will no longer help past that point, or does he decide to do the right thing for his children and himself and start taking the drugs before it is too late.  It is final decision time for him. 

[Gail's]

Non compliance with a treatment plan or leaving a care facility against medical advice is used by insurance companies to deny payment for services. I'm curious: how does he have medical insurance? What does his pcp say to him about his choice not to treat? What does the pcp say to you?

[tlb3868]

I no longer attend his pcp appointments with him. Its just basically a prescription refill for other meds as far as I know. His pcp is the one who told him the pills will kill him before the Cml. He listens to this doctor over anyone else. I'm out of the loop on everything with him. We basically just share a home now.

[CMLParent]

I no longer attend his pcp appointments with him. Its just basically a prescription refill for other meds as far as I know. His pcp is the one who told him the pills will kill him before the Cml. He listens to this doctor over anyone else. I'm out of the loop on everything with him. We basically just share a home now.

[CMLParent]

Whatever Doc said that should lose his license. If you can prove that was his medical advice I think you are looking at malpractice. Would your husband engage the community here? It sounds like he may be grossly misinformed.

[Gail's]

Wow, wonder if you have a case for medical malpractice against pcp. Were you present for that conversation or any other documentation of that advice? Would his former onc be willing to have a conversation with pcp?

[r06ue1]

While Iclusig could kill him, there is also a chance it may not, but not taking any medicine at all will definitely kill him.  

 

As Trey stated, that trial might be worth a shot if he is fearful of using the aforementioned drug.  

 

That doctor should lose his license.

[rct]

Yeah cause, you know, every spouse of a CML patient has the time and energy to engage in deep, frightening, medical malpractice lawsuits.  We're all about time and energy.

 

rct