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.
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
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.

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.