27 replies to this topic

[tlb3868]

I posted awhile ago about my husband starting iclusig. He has the t315i mutation. He took it for a week said he doesn't like the side effects and quit it. He has canceled his appts with his onc and says he's done with treatments just letting it run its course. I tried to discuss this with him and all he says is its not happening to me so how would I know anything. I don't know what else to do now. Will he get sicker faster not being treated? I need to scare some sense into him. We have 3 kids in middle and high school. Sorry I'm venting but I hate feeling helpless.

[Gail's]

Not sure how to respond. I can imagine how awful this is for you. I have these feelings sometimes but have not stopped. Two things help me to go on with treatment when i feel really tired of side effects. One is that I read the symptoms of progression to death if cml is not treated. The other help is my cancer support group. I sit there with a group of fellows going thru their own awful treatments and I'm inspired to continue. I brought up this very subject a few weeks ago at group and was surprised how universal this feeling and sometimes action is for cancer patients. I worry because from what you've posted in the past, his situation is very advanced with the mutation. I believe he is depressed and discouraged and needs a little help. Is there any way he would go just to get support for how he feels regardless of his final choice? Many family members attend my group and also get help for their struggles.

[DebDoodah22]

TLB - I
wouldn't call this venting, you must be very concerned and somewhat scared. It would be hard to watch your loved one refuse treatment. There are folks on this board who can give you more information about disease progression, that would not be me, I don't know the ropes that well. But I do know that there are many caring folks here that can support you and your husband. It is sometimes overwhelming to deal with the side effects of these mess, maybe a short break will be just what he needs to take more proactive measures. For now, know that folks here will be pulling for your family and LLS has some great counseling resources. Prayers.

[tlb3868]

I know he's depressed and have tried to get him help but he refuses. He doesn't have any family and stopped talking to his friends awhile ago. Just mainly sleeps all day. I tried to convince him side effect get better over time but he's very stubborn. And reads to much bad stuff on the internet. I do not want to just sit back and watch him slowly waste away. I realize I don't have cml but would like to think I would fight until my last dying breath.

[Dom]

TLB, your husband is making a big mistake. I truly hope you can change his mind. Here are some things he should know.

The end of CML is not pretty or quick, and it is much worse than the side effects of the TKI. It is likely that the side effects will disappear in time. If the effects do not disappear, then the oncologist may change the drug or reduce the dosage in time. Finally, there is a good chance that some sort of cessation protocol, or even a cure, will be found. But in the meantime, he has to take the TKI.

Hope that helps.

[Billie Murawski]

TLB,  I'm so sorry you both find yourselves in this position, I think all of us reach that point at one time but we don't actually stop our meds. Does he have a good relationship with his PCP if you could at least convince him to talk to him/her and get him on an anti-depressant to start. Once he starts to feel better  mentally he'll be able to cope with this disease better.

He has to stop reading all the internet crap and just listen to his onc. If he doesn't like his onc then he should find another one.

You are doing everything you can, try to keep yourself together and get some help for yourself if you have to. Hopefully you can make him see what he is doing to you and your children. A depressed person is very selfish all they can think about is themselves, no matter what he is doing to his loved ones, It's not his fault depression is an awful disease and hopefully he'll soon realize that it is treatable and he doesn't have to feel this way. I wish I could give you some answers, but you have all the support you want from all the members of this board, It would be nice if he would join us too (yeah I know "When Donkeys Fly")  Sincerely   Billie 

[tlb3868]

Thanks for the help everyone. IMO his PCP is a huge part of the problem. He's telling my husband that he shouldn't take that because of risks. Yada..yada.. My husband has been with him for so many years he won't change docs. He's also bipolar but its also untreated as he didn't like the way his meds made him feel. That was years ago he quit treating it. I've been married to him 16 years. I know him he is done with treatments for good.

[pammartin]

I had a hate relationship with Sprycel the first year.  I stopped taking it for a few weeks, I did confess to the oncologist and the PA got me back on track.  I did several sessions of basic counseling, discovered I was taking out my anger on the TKI.  It sounds fairly uninteresting but at that time it was pretty rough. 

 

Giving him time to come around isn't a great idea because he needs to get on the med, but he also needs time to process all of the things happening to him and cannot think of anyone but himself. I believe it is a justifiable selfishness.

 

Please take care of yourself, support him as you are, and try to help him understand that life would be so much harder for you without him, and you want him here.  Depression is a nasty deal, it is selfish, it is self-centered, and it is unreachable at times because the person has sunk into a low that is difficult to reach.  If you can get him to talk to someone that might help, take care of yourself right now, because you are the only one hat is going to do that. 

 

Like most of us, I believe he will do a turn around and realize this is a treatable disease and he can enjoy a full life with you despite the diagnosis.  I would love to have great words of wisdom for you, but all I can do is tell you to hang in there, please come to the board whenever you feel like sharing or venting, or yelling.  Use your personal support people close to you, they will help greatly if they are good friends. 

 

God Bless. 

Pam

[Dom]

"... his PCP is a huge part of the problem. He's telling my husband that he shouldn't take that because of risks."

Words fail me.

[Trey]

If he were 90 years old I would not fault him.  But he has younger children.  He has the obligation to survive no matter the side effects. 

 

I would suggest you attempt to have him read about how people die from CML.  "Letting things run their course" means a slow death while suffering far worse than the side effects of the drug.  So a simple comparison of the side effects of a slow painful death vs the side effects of Iclusig would be useful. 

 

CML cannot be left untreated or it will advance to more aggressive levels where the drugs no longer work.  So he does not have much time to wait before re-starting the drug.  It is not something which can be treated casually.

 

Death by CML is caused by slowly starving the body organs of oxygen.  Organs fail one by one.  He will not die painlessly.  He will be continually sick because his immune system will fail.  He will mostly live in the hospital in a sick bed eating bad food and watching a small screen TV while sharing the room with an obnoxious guy who snores loudly.  He will get all sorts of infections and viruses as his immune system fails.  He will be in misery for a long time.  Then he will die and leaves his family in debt and his children scarred for life.  Really thoughtful.

 

Also, the drug side effects usually subside over time, so sticking with the drug through the side effects gets the person to the other side of the problem, and the side effects become more tolerable.  So the side effects and their intensity are not permanent, although some will continue hopefully at a reduced level.  But the side effects of a slow, painful death do not subside until death itself.

 

If he refuses treatment he will die either this year or next.  His doctor would be guilty of doctor assisted suicide by very, very bad advice. 

[mikefromillinois]

Sorry I'm venting but I hate feeling helpless.

tlb, you shouldn't feel helpless because there are steps you can take if your husband refuses treatment for a life-threatening disease.

 

A patient with untreated mental illness is probably not mentally competent to make his/her own health care decisions.  Comparing his case to an Alzheimer patient, loved ones routinely go to court in those cases and have people declared incompetent for purposes of their own healthcare decisions.  That might be a viable "last-resort" option for your family.

 

I'll assume that his PCP has not been prescribing the lithium that your husband quit taking, and that he has also been seeing a psychiatrist.  Maybe his psychiatrist will be a better ally in this matter than his PCP is being. 

 

There are also social workers that can be very helpful with "Elder Care" issues.  If you look at your husband's situation as you would a parent whose mental faculties have become diminished it might make it easier for your family to strategize your next moves.  Your local hospital probably has social workers on staff who have much experience working with families with Elder Care issues.

 

Trey has already outlined very well what the future will look like for your family if something doesn't change. 

 

There are still things that your family can do.  And yes, it could get "ugly".  But allowing your husband to kill himself slowly over time would be much uglier.  Sorry to be so blunt, but if "sparing feelings" and "keeping the peace at home" are your priorities you might not be able to save your husband.  Don't be afraid to challenge the status quo.

 

God Bless,

 

Mike

[hannibellemo]

Mike, You give very good advice!

 

tlb, If your husband is to live you have to advocate for him with everyone you can think of from his physicians to the courts. The fact that he is an un-medicated, un-treated, bi-polar cancer patient gives you a huge advantage with competency issues in the courts.

 

Please don't wait to do this, and don't ask your husband, I don't believe he is capable at this point of rational thought, just do it. There is no reason for for this to happen in this day and age.

 

Good luck!

[Billie Murawski]

tlb, I don't know if this will help you or not but when Ron and I had our wills make out our attorney automatically made out medical durable power of attorney for both of us she said it's pretty standard now in case a spouse cannot make medical decisions for themselves we also had our living wills made out. I never in a million years would have thought that I would need that document but last Dec 1 when he collapsed he wasn't even coherent for almost 6 weeks. I had to get records from other places and sign all kinds of papers giving permission for tests biopsys etc. Pa is very strict about privacy laws, I don't know how it would have been if I didn't have that document but the hospital and all the doctors were very glad I had them. I'm assuming the courts would have to be involved and there would be delays in his treatment.

  You can call an attorney or legal aid and see if you have any options he has already been dx as bi-polar and now he is refusing to take life saving meds so he is a danger to himself I know it sounds dramatic but maybe if he's hospitalized for a while he'll realize what he is doing to his family.

 You can at least call a social worker for yourself and your children you shouldn't have to deal with all this yourself.

I'm basically repeating what Pat just said, but my husband was sick almost 3 years and he fought me constantly about going to doctors and getting tests I was thinking that I might have to use that power of attorney on him even though he would never forgive me. When he collapsed he probably wouldn't have lived through the night if he hadn't gotten to the hospital on time. They worked on him 13 hours in the er before they could put him in ICU what your husband is asking of you is much worse please call an attorney

tomorrow.     Billie

[Gail's]

So I'm following the comments on competency. Let's say tlbs husband is found incompetent. How would they keep him in a bed at the hospital? How would they force him to swallow the meds? Hospitals are not jails and even in psych facilities they can't stuff pills down someone's throat. There's got to be a better way. What about discussing this with your own counselor? They may have suggestions for you on coaxing him to take meds or at least being open to discussion. The mental illness, especially depression can be contagious to family. Not literally, but you get what I mean. If he's bipolar, won't he cycle out of the depression? Maybe you could reason with him then. Don't know.

[mikefromillinois]

So I'm following the comments on competency. Let's say tlbs husband is found incompetent. How would they keep him in a bed at the hospital? How would they force him to swallow the meds? Hospitals are not jails and even in psych facilities they can't stuff pills down someone's throat. There's got to be a better way. What about discussing this with your own counselor? They may have suggestions for you on coaxing him to take meds or at least being open to discussion. The mental illness, especially depression can be contagious to family. Not literally, but you get what I mean. If he's bipolar, won't he cycle out of the depression? Maybe you could reason with him then. Don't know.

 

Once a court enters an order that someone is incompetent - and subsequently assigns someone else the authority to make treatment decisions - the actual patient no longer has ANY say in the matter.  The person with the power directs the medical people how to treat.  The concept is that someone is not mentally capable of making these kinds of decisions.  (To better understand the legalities and the dynamics think of a five-year old patient with a parent directing treatment)

 

Every case is different, of course.  In cases that I am familiar with, the patients eventually complied once a court order was in place and they realized they had been made powerless by the court.  My sense is that in most cases once a patient realizes that they are truly "cornered" they surrender and go along with treatment. 

 

While I don't know this to be true, I think that in cases in which a patient absolutely kicks and screams to resist the decided treatment the medical staff can legally administer drugs using restraining methods that are reasonable and prudent in the situation.  Again, think of a five-year old that is physically resisting a shot - that kid IS going to get the shot one way or another.

[chrissy778]

I think Trey is pissed off.. I agree, if you have medicine that will help you live you need to take it. The side effects are bad in the beginning so are negative thoughts and feeling depressed but it will get better. It sounds like he is depressed and giving up. I would think he needs to talk to a professional and get on a anti depressant asap.... Or have him get on here, we have all felt what he is going through, he needs to know he is not alone. It is normal to feel this way but he needs to fight it...

[pammartin]

I agree, but there is also that 'lead a horse to water but can't make him drink' saying.  Sometimes by pushing even if it is for the person's best interests it causes a reverse effect.  The time frame is not great, but treating the depression brought on from the diagnosis and side effects, getting on the TKI and starting to accept then realize the side effects do lesson, and finding a good place in one's own mind and body is not easy.  Especially when there is a serious situation that needs addressed immediately.

 

Bi polar is a difficult diagnosis on it's own.  And even with meds the symptoms are usually significant and constant.  There is a member on another board called Lottie.  She has been very open with her husband's diagnosis, his progress, his struggles, and his depression.  If you have time reading over her material might give you some insight and advice.  I believe she would offer suggestions and listen if you contacted her.  She is a great lady and has been through many difficult times and sharing them with everyone was a wonderful gift. 

[hannibellemo]

Pam, 

 

Can you be more specific about Lottie? I searched and all that came up was your post.

 

Thanks!

 

Pat

[pammartin]

Excellent Idea Pat

 

http://community.lls.../27738-lottier/

 

https://www.facebook...ottie.richard.7

 

Her husband's name is Nate, and she had a beautiful daughter named Kaya. 

[Gail's]

Right to refuse treatment is recognized by federal law as a person's right. Competency in this case wouldn't be difficult to prove in a case like this, in my opinion. It is simply a matter of asking if the patient fully understands the risks/benefits of treatment, then letting them state their wishes. Living in a state that allows assisted suicide, I know those folks can't get prescription drugs to die without a determination of competency by the prescribing clinician. It's not exactly the same situation here, since he's not asking for help to end his life, rather asking to withhold treatment. I think that you should research your states regulations regarding right to refuse medical treatment. I wonder if he would even go to a doctor/lawyer for a competency hearing. Here's a little info that I found interesting. I also wonder if reverse psychology might help here. Like saying you understand this is hard and will back any informed decision he makes. Sometimes giving someone a little space allows them to come to a reasonable decision. I feel strongly about the fundamental right to govern ones body (you can probably tell that!) and think it's sad he's making this choice, but I will go down championing a fundamental right to choose.

http://www.rbs2.com/rrmt.pdf