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

Hi @kaygrose, I’ve looked through several replies by members taking Imatinib but haven’t found comments on fatigue.
There is another discussion you may want to read through with members who have CML. Many discuss Imatinib and also Sprycel

~Does Anyone Have CML?
https://connect.mayoclinic.org/discussion/does-anyone-have-cml/
Have you mentioned the extreme fatigue to your oncologist?

Welcome to Connect @babii. As an aggressive leukemia survivor, I can tell you that survivability rates can be misleading. So much is dependent on the source of the information and on the patient’s personal health condition, the phase of the disease, whether there are co-morbidities and the like.
I know you’re trying to find out information for your brother. The internet, while it can be helpful, can also lead us to information that causes undue stress. Some of it may not even relate to your bother. Your brother’s hematologist oncologist will discuss this with him and come up with a viable treatment plan.

There has been some postive treatments for CML developed over the past few years. From articles that I’m reading, the news is very encouraging. Here are two from credible sources that virtually say the same thing.

This article by Healthline.com: “The percentage of people living five years after a CML diagnosis who are treated with imatinib is 90 percent.” https://www.healthline.com/health/chronic-myelogenous-leukemia-cml
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Another article, this one from American Cancer Society:
“One large study of CML patients treated with imatinib (Gleevec®) found that about 90% of them were still alive 5 years after starting treatment. Most of these patients had normal white blood cells and chromosome studies after 5 years on the drug.” https://www.cancer.org/cancer/types/chronic-myeloid-leukemia/detection-diagnosis-staging/survival-rates.html

Was your brother just diagnosed? Has he had a treatment plan discussion yet?

Thank you. I just found out tonight that my 59 yr old little brother was diagnosed with this. When I asked him what that meant for longevity he said 65% 5 year survivability. Yet when I got home and started googling what I've seen so far is longer, which is both more comforting but leaves me with questions.

I am a 70yo female recently diagnosed with CML. 10 days ago I started taking Imatinib. The extreme fatigue hit like a wall starting about 3 days ago. It has truly been life-altering. I’m interested to know if others also experienced extreme fatigue and if it evened out any as their bodies acclimated to the med.

@cortney, how are you doing? Did your new grandson arrive? May I ask what the next treatment plan steps are for your son?

Hi @cortney. With all the exciting changes ahead for your son with graduation and ‘infanticipating’ the arrival of his new son next week, I’m sure this unexpected diagnosis of CML has knocked everyone for a loop!

I’m so glad you found Connect because I think you’ll find encouragement and hope with our other members who have CML and are doing well with their treatments to keep the disease under control. Years ago, that wasn’t always the case. But now there are targeted therapies which may give many people a normal life span.

Knowledge is power. So to help you become more comfortable with your son’s diagnosis I’m tossing in a few creditable websites with information for you.
https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417
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https://my.clevelandclinic.org/health/diseases/21845-chronic-myelogenous-leukemia-cml
Was your son having symptoms that led to this discovery?

My Son is 19 years old and was diagnosed with CML this week. Monday the day biopsy came back and treatment plan. Right now they are lower the white blood cells, very slowly.. everything happened so fast . He was supposed to graduate today and his son due in a week ! I am thankful I found this blog, both his Hemo doctor told him this is curable. He is a fighter!!

My abrupt illness really clipped us off at the knees! We already had estate planning in place and power’s of atty for health care and finances. But, think how many accounts you have, even FB or other social media accounts, bank accounts, charge cards, utilities, online ordering sites, etc. where your spouse might need the passcodes!

I used to pay all the bills! My husband didn’t know the list of all of the monthly statements from power, water, etc.. He wasn’t oblivious, because he has a strong financial background but there was a division of labor in the household. You know…it just happens as marriages evolve. So while on my freaking hosptial bed for 5 weeks I used my laptop to create a new email account. All the online bills funneled into that account. I made, (gasp) spreadsheets with accounts, their passcode and user names, when things were due. I’d already had online banking with Bill pay so that helped him get and stay organized.
But holy crow, when something happens in the wink of an eye, there is no re-do! Any one of us could get hit by a bus or meet our demise without warning. So we really need to make sure our ‘affairs are in order’ early on.
I just wrote a new reply to @dgordillo urging her to speak with an attorney…a bad situation waiting in the wings is mildly put.
Good luck getting your foot dragger inspired. Giggle.

I honestly don’t know how you can get through to your husband at this point. His heels are dug in pretty deeply. Basically, he stopped taking the meds to treat his cancer, which were working, because ‘he didn’t like the way they made him feel.’ In fact he stopped taking all his meds and now he feels even worse. Maybe it wasn’t the meds making him feel that way🙃

You, my dear, are a saint for your patience in dealing with his level of stubbornness. You’re basically trying to help someone who doesn’t want to be helped. As life partners, this must be so hurtful that there isn’t more consideration for you in his decisions.
It’s understandable that he may feel this is all too stressful to talk about end of life decisions. I’ve been there and some of the questions that needed answers are were really tough!
But I knew the decisions I could make ahead of time would lessen the stress and burden for my husband and daughter. Death is inevitable for all of us. For loved ones left behind it’s generous and thoughtful that a dying person makes it as easy as possible for them to deal with the deceased’s ‘stuff’ and any last wishes for if they want to be scattered to the wind or who they want to be planted to for eternity. Cute story…Anytime my favorite Auntie went on vacation or long road trip, on her bed at home she’d leave the dress/shoes/jewelry she wanted to be buried in, her typed up obituary that she wrote so nothing about her life was missed in the news paper and the photo to go with the obit., along with bible verses and songs. Some of us live in denial, others face mortality head on.

I apologize for being blunt but being the youngest in my family, I’ve had to face many of these ‘end of life’ issues head on. I’d like you to be able to at last know what to expect if something does happen to your husband.
This is a fairly good article about how an estate is settled if there is no will. A will isn’t necessarily critical.
https://www.nolo.com/legal-encyclopedia/how-estate-settled-if-theres-32442.html
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This article from AARP is helpful for what to do immediately when someone passes. https://www.aarp.org/home-family/friends-family/info-2020/when-loved-one-dies-checklist.html

With your husband’s decisions already made, my thoughts turn to you for your future. Considering there are children from a previous marriage and an ex who are already circling, do you have an attorney you could contact to see what potentially lies ahead if your husband passes?

Thanks for those links, Lori. I'm going to get my husband to start going through this stuff with me over the weekend. I have all my stuff in a folder in the event of my demise, but he's a foot dragger.

I'd hope dgordillo will see a lawyer asap to discuss the situation with the ex and children. This sounds like a bad situation waiting in the wings.