I've had CML for 20 years and want to encourage others

Hi: I sent you a private message, please let me know if you got it. I can help you get through this ordeal because CML is very treatable. I am always around .

Hi @suzie71, hearing from longtime survivors like you offers hope. You're very kind to offer private messaging with specific members. However, I’d like to underline the benefit of sharing in the group discussions. By posting in the CML-related discussions in the Blood Cancers group many can benefit from your knowledge and experience, including those people living with CML who haven't posted yet. 🙂

I intend to keep sharing, because that is how patients learn what CML is all about with treatment etc. I just think sometimes somebody might feel the need to send a private message, and I am always available.

My husband was diagnosed with CML in 2019. He did 2 1/2 years of treatment with Gleevac and Sprycal. In 2022 he decided to quit treatment because of the side effects he was experiencing. His BCR-ABL rose pretty fast the first 6 months off treatment. 15 months ago his oncologist told him without treatment he wouldn’t give him more than two years. I have been unable to find much information on what to expect. He refuses to go back to the dr but is in daily pain. Help!!!

Hello, @dgordillo. This is not an easy situation with your husband. There may be some treatments available other than the two you mentioned. But if he’s not willing to take the meds then sadly, the cancer cells in his blood will continue to proliferate.

His next option would be to talk with his oncologist about palliative care and eventually hospice. This will have to be done in person though.
I don’t know what you can do if he refuses to see a doctor again. At some point his disease will progress to where he’ll most likely need hospitalization because this will be beyond what you can handle at home.
His refusal to see a doctor is hurting you as well. I think being the caregiver for a terminally ill loved one can be one of the most emotionally and physically draining responsibilities we ever have. So I hope you can convince your husband to at least seek out palliative care. He will be given pain meds to manage his discomfort and anxiety.

Palliative care is not hospice. But the reality is that there will also need to be some end of life discussions taking place soon. This won’t get better on its own. I’m so sorry that this is falling on your shoulders. If he won’t go, perhaps you can call his doctor’s office and have a talk with the doctor or NP to see what your next steps might be.

Palliative care is specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness. It can help improve quality of life for people and their families. Here’s a little information about palliative care. It is different than hospice.

Do you think your husband would consider palliative care?

Hello dgordillo: Your husband has no other choices than to take one of these TKI drugs, and live with the side effects or face the end of life. There is lot of research going on with all types of Cancer. CML is so treatable right now to extend our lives with the TKI drug. I was diagnosed in 1998, and did some heavy duty treatment with Interferon along with Ara-C, but it was destroying my liver. I had tons of side effects with the Gleevec, but I knew it was keeping me alive. I only stopped taking it after 18 years due to extreme fluid building up in my whole body. My doctor told me that if my numbers started to rise after me being at 0.000 in my BCR/Abl that I will have to go on Tasigna. Sprycel can cause pulmonary edema. I have hit a 6 year mark now of no drugs at all, but if my numbers change I will go back on treatment. Try to talk to him about going back to see his Oncologist, and get onto a new TKI treatment. I wish you the best in trying to convince him that he should do whatever he has to at this point.
Everything Lori has said in her post is true. If he chooses to end his life, then its time to get him on Hospice. Please let us know if he agrees to go back on treatment. Prayers go out to both of you.

@dgordillo
What a difficult situation you are in. I’m so sorry. Sometimes it’s easier to ignore the pleas of a spouse than it is to ignore other loved ones, professionals or community. Can you arrange for an intervention of sorts? Children, physician, pastor, social worker attached to your treatment provider might move his thinking to the treatment side.
While I am supportive of patients who weigh quality of life decisions and opt out of treatment, there does not appear to be an up side here.
If this isn’t feasible, I agree that palliative care or hospice are necessary. You can’t be expected to do this alone.
My thoughts are with you both. Do you think that his treatment provider would assist with this? Has he completed A “Living Will” or whatever it is called in your state? In my state, it’s called advanced medical directives, and it will cover his wishes about who will make medical decisions if he cannot and designated durable power of attorney for healthcare. It also talks about end of life treatment, and what he wants as far as care when he can no longer make decisions for himself.

Good morning, @dgordillo, I’ve been thinking about you so much over the past few days. Has there been any change in your husband’s decision not to return to his oncologist?

This has to incredibly emotional and difficult for you to cope with his reluctance to continue treatments. Have you at least been able to get in touch with his doctor to help you with some options such as palliative care or hospice, when the time comes? This is as much for you as it is your husband. These services can help patients cope with pain management, counseling, personal care and offer support to family members.

Thank you
No, he has no plans to see a dr. He has different symptoms all the time and I don’t know what new developments they ate associated with. His blood work for his heart such as triglycerides was so high in December that his blood clogged the machine! He wont take any medication other than Tylenol or Ibuprofen. He doesn’t tell me much because he doesn’t want me trying to diagnose him. He said it makes him feel like he is dying tomorrow. I just don’t know what to expect or how to help him.

I realized that I was holding my breath the entire time reading your reply! My heart just goes out to you because you’re in an untenable situation with your husband and his decision to not continue treatments which could potentially give him many healthy years.

Obviously, this is his life and his personal decision to make. But it certainly doesn’t feel fair to you and his decision is leaving you in a very helpless state. You’re wondering what to expect and how to help him. Honestly, I’m not sure there is much you can do to help except to be supportive and to listen. He has made his choice so it’s futile and frustrating for you try to change mind.

Because his blood cancer and other health issues are continuing to advance, to put it bluntly using his words, he very well may die tomorrow. He is in an unpredictable health state and there may be a health crisis/event requiring an emergency trip to the ED.

Now is the time where you two need to have frank discussions. You might start by telling him that you won’t push for doctor’s appointments anymore and that you finally accept that he has made his decision. So talk to him about what his last wishes are for end of life care.
Does he have accounts in his name with passwords you don’t know. Are all the documents current for Power of Attn for health care in order? Is there anything you want to ask him…because once he’s gone it is too late. Again, I’m sorry to be so blunt. But my husband and I had to face all of this 5 years ago when I was critically ill. It’s amazing the things we thought were in order, weren’t! So now is the time to have those uncomfortable conversations. They become easier once the ice is broken.

I found several good sites regarding end of life discussions that may be helpful for you. They’re thought provoking but may help your husband understand the gravity of what is happening.

https://www.joincake.com/blog/end-of-life-questions/
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https://www.aarp.org/caregiving/basics/info-2020/end-of-life-talk-care-talk.html

My fellow mentor, @pmm, had some very good suggestions in this reply for you. I’m wondering if you saw it. Here’s the link. https://connect.mayoclinic.org/comment/1069438/

Do you have friends or family nearby who you can talk with about any of this?