15 replies to this topic

[tlb3868]

I have posted on here about him previously. He quit taking his meds and has not seen a onc since February. His family doctor has ordered labs done and here are the results. Could someone pls translate what this means I'm clueless. What is this cd34+ myeloid blasts 0.2%? I can't stand siting here waiting for him to die. I am beginning to wish it would just be over so I don't watch him suffer. He's such an idiot and basically did this to himself. Thanks

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[Trey]

You have previously said he has the T315i mutation which means he will only respond to the drug Iclusig.  But he has stopped taking it. 

 

His lab tests shows the CML has definitely gained control, but it is not nearly as bad as it will get.  His white blood count is only about 55 (normal is about 7), so it will go much higher into the 500 range or higher.  His other white blood cells are showing signs of advancing CML.  The CD34+ cells are blasts (poorly functioning immature white blood cells), and they are becoming a little elevated (there should be none in the blood).

 

Over all he is not near the end yet.  Things will get a lot worse for him, probably in about 6 months.  So although he has deteriorated quite a bit, but there will be a lot more ahead.  He probably is not suffering much now, but that will soon change.  Or if he THINKS he is suffering a lot now, he will soon learn what real suffering is like. 

 

Overall, suicide by CML is dumb and selfish, and it also has a lot of suffering associated with it.  He is just about to enter the real suffering zone.  In the coming months he begin to lose immunity to many illnesses and infections he formerly could shake off.  He will be constantly ill.  His organs will starve for oxygen as his blood becomes thick with leukemic blood cells which do not function well.  And he will most likely die from pneumonia or some other virus or infection.

 

This is just as factual as I can present it.  Not overstating the suffering that is coming for him.  This will seem to take a very long time, even though he likely won't last 12 months.

[tlb3868]

Thanks for filling me in. I feel like I know nothing about him anymore. Hes always complaining how bad he feels. Says he feels like he has the flu and sleeps all the time. He took the iclusig two or three times that's it. I gave up on him unfortunately I'm now just wondering how long I have to witness this crap. Thanks for everything.

[alexamay09]

I just wanted to say I feel so, so sorry for you, having to go through this.  Your husband is stupid and selfish.

 

alex

x

[Gail's]

I feel so much sympathy for you. This is a vert difficult thing for you and I'm hoping you are taking exquisite care of yourself and that you are seeing a therapist to help you cope. Sometimes we get so distraught about the poor decisions and actions of those we love that we lose ourselves in the situation. Please think of the fact that regardless whether your husband starts treatment or not, you are a valuable individual with a life full of promise. You ask how long you have to watch this. That's for you to decide and whatever road you take will have ups and downs. I left a very long term harmful relationship and now have a good life. Not without some heartache and guilt feelings but a much healthier way of living.

[Kali]

I am so sorry to hear of your emotional anguish having to watch your husband not take care of his health. I will pray for both of you. Most of all, be very gentle with yourself through all of this.

[tiredblood]

Tlb, I haven't been posting on here for long, so I'm not familiar with your husband's health history.  I've seen several male patients get angry when they are diagnosed with a serious health condition.  Sounds like he could use a support group or other guys with the diagnosis to talk to.  If only that were possible, right?

 

With my own diagnosis, I've had the thought of what if a cure was right around the corner, when thinking I could not or would not want to take a TKI for the rest of my life.  We had a friend die from Hepatitis C a few years back and now, there are drugs that IIUC, cure hepatitis C.  So, that meant back when our friend died, there was a cure right around the corner.

 

Sorry, you're having to go through this.  Sounds like your hubby could have depression.

[tlb3868]

Thank you everyone. Its nice to talk to people that understand my situation. It's difficult since we have 3 teenagers all in school that have to witness this stupidity as well. They ask me questions all the time about why he won't just do what he's supposed to. It's gone on so long now that they have begun to not care anymore. So now we just wait for it to be over.

[kat73]

I am so stunned, I couldn't answer right away.  I remember your earlier posts about your husband, but I assumed he had come around to sense.  From Trey's analysis, it does not appear that your husband is unsalvageable at this point, but will be within a year.  If he took his Iclusig, even now, it's quite possible he could live a normal life of normal length.  Does he know this?  Do you?  Have his doctors contacted you both personally?  Have you questioned and researched CML?  I am being very presumptuous and I apologize.  It's just that I can't believe that you both have given up.  If he took the Iclusig he probably would come all the way back to the land of the living and stay there for a regular lifetime - DO YOU GET THIS????!!!??  I'm taking a chance here of doing more harm than good, and bringing great criticism down on my head, so I apologize in advance if I have made you unhappier when you quite clearly need understanding and comfort.

[hannibellemo]

Dear tlb3868,

 

I've thought about you over the months and wondered how your husband was doing. I'm sorry to read that he has persisted in his decision to end his life this way.

 

This has to be a terrible situation for you and your children and I continue to believe he is not able to think clearly or he would not be doing this to his family.

 

My deepest sympathies to you all for the sorrow you must be feeling.

 

P.S. Although I am not religious, as the mother of a recovering addict, I rely on the Serenity Prayer to bring sanity back into my life when I need it.

 

 

God grant me the serenity 
To accept the things I cannot change; 
Courage to change the things I can; 
And wisdom to know the difference.

I hope you find peace in your waiting.

[chrissy778]

Can you hide the medicine in his food somehow? This is awful... Make applesauce or a smoothie or something and grind it in to hide it. Tell him its a antibiotic, anything.. I am so sorry... Sending prayers he turns to the medicine to help him...

[tlb3868]

I have tried to make him understand what will happen. That's why I asked what will happen previously. He does not have any iclusig anymore he called biologics that delivered it to him and cancelled the prescription. He refuses to see an oncologist and only sees his quack primary doctor. Who seems to think he made the right decision. I am no longer included in medical decisions he makes. He knows what he's doing and doesn't care. Not what I expected out of the man ive been married to for 16 years.

[tiredblood]

I have tried to make him understand what will happen. That's why I asked what will happen previously. He does not have any iclusig anymore he called biologics that delivered it to him and cancelled the prescription. He refuses to see an oncologist and only sees his quack primary doctor. Who seems to think he made the right decision. I am no longer included in medical decisions he makes. He knows what he's doing and doesn't care. Not what I expected out of the man ive been married to for 16 years.

As a patient he certainly has the right to choose not to pursue treatment, but as someone in the healthcare field, I say he also has the right to informed consent-- which, IMO, being informed of all treatment options available *and* all consequences of not participating in treatment.  Otherwise, the healthcare system has not provided full informed consent on which he can make an informed decision about his healthcare.  

[tazdad08]

Wow.. I am so sorry. I have played with my dose of Tasigna, getting down to 20% of recomended dose. I did become detectable again and took a larger dose for a few months. But I have to admit that I take my meds for my family. I do kinda understand your husband beind down about the sub par quality of life. I wish myself or anyone else on here had the answers. The only advice that I can give you from my first hand experience is for you to be very persistant to have God in your family. I hadnt been to church in probably 20 years and a friend got me back in. I always thought of myself as a nice person before, but I am a much better person now. I will continue to pray for everyone involved. 

[Melanie]

So, so sorry! I've been re-reading this post over and over, trying to grasp his reasoning for this. I keep coming up empty. Wish there were words to comfort you as you deal with your husband's choice of (as Trey so eloquently put) death by CML suicide. I've shared your story with my friends and family and we are all praying for you, your husband and your family. Bless you sweet lady!

[RandellR]

I am so sorry and like most people I think he is seffish! However on the other hand I can understand because I am now on a half dose of Tasigna and I'm about to go  for a pain iv. Some days I want not be on a TKI. I have Cerebral Palsy.

 

RR