Chronic Phase CML in 72 years elderly

@loribmt : can you please help 🙏

Hello @riteshkundu. Oh goodness, I’m sorry your dad is feeling so poorly right now. You’re a wonderful daughter to be so concerned for his health and I know you’re very worried for him. The good news is that CML is usually quite treatable and patients may be stable for many years. Your dad was just recently diagnosed so it may take time to get it under control and balance the meds.

CML (chronic myeloid leukemia) is a type of cancer that begins in the bone marrow. It develops slowly in the blood-forming cells inside the marrow and eventually spreads through the blood. The good news is that treatments for CML can help slow the progression of the disease.
It sounds like your dad has had a rapid response to the meds in bringing down his white blood count, which should be encouraging.

Imatinib is a first line treatment for CML and has a good track record. Basically, it’s a medication that targets the gene that’s allowing too many white blood cells to be forming.
Here’s a good informational article for you that may help with the explanation: (there are several pages to the article)

From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417
It’s not uncommon with treatments such as Hydroxyurea for side effects to take place, especially with the very high dosage your dad was taking for 7 days. That’s because the body’s immune system is seriously compromised with the drop in white blood cells. Mouth sores, fatigue and low blood numbers are not unexpected. Once his neutrophil count returns to a more normal level, he should have signs of improvement in his mouth.
It’s also important to monitor your dad for any potential infections that you can’t see. That’s why the doctor gave instructions to check your dad’s temperature a couple times daily. If it reaches 101.4 you should call his doctor to get him admitted to the hospital for antibiotics.

I know this all sounds scary but with treatment your dad may have many years ahead of him. The meds will be important for his continued good health.
What does your father think is happening if he isn’t aware he has CML? Is there a reason you don’t want him to know?

Hello Lori, thanks a lot for your prompt assistance and very detailed support. On the last line, no he is not aware. He was admitted to hospital due to other infection and this came up as part of blood work as coincidental finding. Given his age, plus CHF and CKD conditions, he will be devastated by this news and hence we refrained from sharing. He is aware that there is some blood related disorder, but nothing more than that yet. Once things stabilizes a bit, we do intend to make him aware and comfortable with the finding.

CML is often one of the blood cancers found incidentally with a blood test related to ‘something else’. In this case it sounded like he had a serious infection that landed him in the hospital. That’s most likely directly linked to the CML with his immune system being impacted by the numerous but ineffective white blood cells. It’s hard to fight off infections if neutrophils are low.

I understand why you’re reluctant to share the news with him. It’s quite a shock to get a diagnosis of leukemia. I’ve been there myself! I had AML (acute myeloid leukemia) 6 years ago with an iffy prognosis. With treatment, I am in a durable remission at 70! That’s why I’m here in Connect to offer hope to people with blood cancers.

There are quite a few members in the forum who also have CML. Here’s a link to just one of many discussions that might be helpful to read through. (More can be found by typing in CML in the top search bar)

~Does anyone have chronic myeloid leukemia (CML)?
With @pam62 @bobmon @dmmurph who is on Imatinib, I believe, and many other members with CML.
https://connect.mayoclinic.org/discussion/does-anyone-have-cml/
I know you’ll have a lot of questions on behalf of your dad. Don’t hesitate to pop into any conversations. We’re all here to help each other and to toss out a life line of support.
Does your dad live nearyby where you can help him easily?

Indeed! Thankfully I made sure that he lives not just nearby, but with me under the same roof, so that I can take care of him at this age and with this condition. Hope things get better and seeing your reply and your own struggle out of it, I see there is hope and hope is everything. Hope he tolerates the medications and fights back!!

@riteshkundu
Lori always gives such sage counsel.
As a 72 year old woman I would also advocate for sharing this information with your dad. I know, you are protecting him from information that might be stressful, but our bodies eventually alert us to disease in one way or another…increased fatigue, bone pain, night sweats. Those symptoms will trouble him if they emerge or continue and he does not know the reason. Knowing about his health risks allows for adjustment, preparation and the acknowledgement of his autonomy to make medical decisions. If at all possible, I always encourage family to share information with the patient.
As Lori shared, she stands as testament to the wonders of modern medicine. I sincerely hope for a similar outcome for your dad.
Hugs! You are a good daughter.

As a 78 year old woman, I would not want this type of information kept from me as if I had to be overly protected. In fact, doing so could cause resentment. I was the one who informed my family of my CLL.

I know we are all different in how we process bad news. For me, I would want to learn about having CML directly from the doctor, maybe with a family member present. Learning indirectly would destroy any trust I had in the doctor and my family. What else is being kept from me?