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DiscussionI've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: Oct 22 10:55am | Replies (100)Comment receiving replies
Replies to "My husband was diagnosed in 2019 with CML. Its been over two years since he has..."
Hi @dgordillo, we’ve had quite a few discussions on your husband’s ongoing CML and his wishes to discontinue treatment. This puts you in a really difficult position and I know you’ve been struggling with how to help him with his constant refusal seeing a doctor or accepting any offers of help from you.
It’s a relief to see that he’s finally visiting with an oncologist in August. It looks like it’s just for the possibility of pain meds? Since the blood work he recently had may be showing signs of a serious progression of the disease, without treatment, it is just a matter of time.
You’re wondering what to expect as this progresses. CML has 3 phases. Chronic, Accelerated Phase and Blast Phase, when the disease now becomes acute. Basically CML morphs into AML (acute myeloid leukemia) Here’s a helpful link to read:
https://www.cancer.org/cancer/types/chronic-myeloid-leukemia/detection-diagnosis-staging/staging.html
Your husband may have progressed to either the Accelerated or Blast stage where blast cells, (immature white blood cells) are slowly overtaking his blood. From my experience with AML, I can tell you that he will slowly become very weak and extremely fatigued. He may require blood transfusions to keep his red blood count up and possibly platelets as well. If your husband doesn’t get ill, this can be a quiet way to pass. I was less than 24 hours from pushing up daisies from the underside. I, quite frankly, would have just fallen asleep
The over proliferation of white blood cells at this time are blasts and they are ineffective cells. So his immune system will be severely compromised. He needs to be extra vigilant to avoid infections or illnesses whether food borne, bacterial, viral or fungal. So I’d suggest he wear a mask anytime he’s out in a public setting.
It’s a good idea to check his temperature daily. If he has a fever of 100.4 or higher he needs to call the oncologist or go to the ER. That can be a sign of an infection and with his immune system no longer functioning, that can take over rapidly. .
When you accompany your husband to the oncologist, this will be a good time for you and your husband to talk about the end of life discussion you and I chatted about previously.
The doctor will be able to offer either palliative care or hospice. You can’t do this on your own! Your husband may need more physical help than you’ll be able to give. So please, encourage him during this appointment to listen to the directives of his oncologist. They and their staff are best equipped to help both of you through this difficult time. Here’s a link to one of our discussions https://connect.mayoclinic.org/comment/1073334/
Is he showing any serious signs of fatigue or bruising?