21 replies to this topic

[tlb3868]

It's me again! Well he made it to our son's graduation. But according to his last CBC his white count has jumped drastically since November when it was 46 thousand. It's now 286 thousand. His pcp just told him his spleen is extremely enlarged. He prescribed amoxicillin and Augmentin for his spleen. Nothing seems to phase him at all. I'm no expert but I'm pretty sure he doesn't have much longer now. On the plus side my son just enlisted in the Army! I'm one proud momma!  1496784259495.jpg   99.32KB   37 downloads

[gerry]

People make their own choices in life be they good or bad, hopefully you have a good support network around you. Congratulations on your son's achievements.

[jjg]

Thanks for keeping us posted. I'm sure you don't need us to tell you he's an idiot. I'm sorry this is happening to you and your family. The vast majority of people who post on here are complaint with their medication and relatively knowledgeable about their disease (some very much so), but you don't have to spend long on some of the facebook sites to realize that there are a percentage of CML people skipping meds and making poor choices. There are many that read these posts without commenting and hopefully some are learning from your story, I just wish that this included your husband.

[thatguy]

My Dad went through Chemo for non-small cell lung cancer last year, and the side effects brutalized him. Although he made good progress against the tumors, he was a broken man, lost his taste, strength, hair, and lost his desire to try further. To each his own. I think mentally cancer some times gets to be a bit much. I just hope you guys are mentally and financially set up for the outcome. Very sorry to hear, but understanding. Truthfully if my kids were young adults, I don't know that I'd care much either, nor stress to milk out a few extra years.

[Melanie]

You seem to have come to some kind of peace with his choice and that's good for you all.  I'm sorry he's putting you all through this, which you know will only get much worse. A big congrats to your family though for your son's graduation. Enjoy all the good things in life to the fullest, you all deserve it.

 

Praying for peace and a world of support for you and your family in the months ahead!

[tlb3868]

Thanks everyone, I've come to terms with it. I dedicate my time to the kids now. They grow up too fast! I finally realized you can't help someone who don't want to be helped. He's a grown man I can't change his mind.

[Trey]

......I'm pretty sure he doesn't have much longer now.

 

The longevity at this point is less predicable than the pain, which will continue to intensify.  It could still be quite a while before he succumbs.  This is not a disease one should use for suicide.  It is very painful to take that route.  At this point how does his doc reconcile his advice that the TKI would be more harmful to him than the CML? 

 

We salute your son, and you also.

[r06ue1]

Agree with Trey, there are much quicker and less painful methods of suicide than CML.  

 

Also, is doctor's first name Witch?  

[Dom]

"At this point how does his doc reconcile his advice that the TKI would be more harmful to him than the CML?"

Did the oncologist actually say that? I thought the problem was he didn't like the side effects of iclusig.

[tlb3868]

Well amazingly he had me call Karmanos cancer center to schedule him an appointment. Maybe there's hope after all. If he cancels it I swear he'll die alone!

[tlb3868]

His pcp told him awhile ago that iclusig will kill him before the Cml. He hasn't seen a oncologist in over a year or so now. Lost track. His pcp is a real quack in our small town. My husband never really gave his meds a shot. He took it a few times and said he didn't like it.

[thatguy]

Uuuuh, in that case, you need to sue the crap out of the "dr", and get him to a specialist asap! I thought he quit the drug by stubbornness.

[gerry]

Well amazingly he had me call Karmanos cancer center to schedule him an appointment. Maybe there's hope after all. If he cancels it I swear he'll die alone!

Perhaps he has finally seen the light, we all hope he has.

[scuba]

The irony is that as he has nothing to lose - he could just start on a very low dose of Sprycel (20 mg) and chances are it will reverse the disease and put him into full remission. It could even give him major molecular remission or even PCRU. Low dose Sprycel has practically no side effects that anyone feels. I have no side effects I feel.

 

His doctor could simply prescribe him low dose 20mg Sprycel and see what happens. Since he is going to die doing what he is doing now anyway, he has nothing to lose.

[r06ue1]

He might qualify for a trial, ABL001 would be a good one if he has a mutation.

[thatguy]

He's t315i.

[Kali]

I know when I got diagnosed, I felt like a burden because of the high costs of these drugs and fears of personal costs due to insurance and eventually Medicare restrictions. I felt like a liability.
I don't know if your spouse has those concerns that have influenced his decisions. If so, maybe the idea of starting small would at least be a beginning step like Scuba suggested providing his doctor thinks that is ok.

[tlb3868]

He has T315i so he was told by his last oncologist that iclusig is the only drug he can take now. Which he has at home and don't take. Maybe a new doctor can get him to take them. I don't know. I'll post what happens after his appointment.

[r06ue1]

He has T315i so he was told by his last oncologist that iclusig is the only drug he can take now. Which he has at home and don't take. Maybe a new doctor can get him to take them. I don't know. I'll post what happens after his appointment.

 

ABL001 is in clinical trials and should also work with less side effects.  

[Gail's]

Anybody know if it's true that iclusig is the only drug that works with that mutation? I agree with scuba, low dose with slow increase. The big dose bazooka will knock his counts way down quickly with unpleasant side effects but the matter of compliance is more important in this man.