Hello! My sister ,age 74 has recently been diagnosed with CML

Welcome to Connect @ismatjahan007 It’s wonderful that your sister has such a caring sibling looking out for her. ☺️ I’m sorry to hear she’s having some side effects to the hydroxyurea. If she’s recently started taking hydroxy, it can be a matter finding the sweet spot with the dosage over the next few months. If there’s great improvement seen in the blood work sometimes doctors may then adjust the prescription dosage lower to help avoid side effects but still maintain a treatment level.

It’s not unusual for blood numbers to fluctuate while on this medication though. While working to reduce the number of cancer cells, hydroxy can also have an impact on other fast growing cells such as fingernails, hair, mucosal tissue, and of course, blood cells. She may find that her numbers level out after a period of time.

There are quite a few members in the forum diagnosed with Chronic myeloid leukemia, but I’m not sure of their ages. This discussion might be a good one for you to explore with members @suzie71 and others who share their experiences with CML/treatments. More discussions can be found by typing in CML in the top search bar.

~I've had CML for 20 years and want to encourage others
https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/
Was your sister having any particular symptoms that led to her diagnosis?
Has she discussed the nail blackening with her doctor?

Dear Lori
Thank you so much for your prompt reply.I found your message quite uplifting.
My sister didn't have any discernible symptoms. It was diagnosed following a regular blood test. The WBC was rising and she was anemic.
Yes,she mentioned to the doctor about blackening of her nails.I understand the doctor then decreased the dosage of hydroxy urea.
I am really heartened to know that you have managed CML well. It is really encouraging.
I will also reach out to members @suzie71 . These are times when reaching out and holding hands of persons who are in similar boat can be a source of strength.
Thanks again.
Ismat

Hi Ismat, It really can be so helpful to be able to speak with others going through the same medical issues. I learned that myself when dealing leukemia. I didn’t have CML but I did develop AML, which is the more acute state of the disease and not nearly as manageable. It did require a much different type of treatment, along with a bone marrow transplant to keep me in remission. It was during the transplant recovery where I learned the value of being able to actually meet face to face with someone who had gone through the same process. It made all the difference in my outlook. It gave me hope!
We can’t meet face to face in Connect but I think you’ll find you’ll always have some here to listen and extend a lifeline. ☺️

Hopefully your sister’s fingernails return to their normal color! Is she doing ok otherwise?

Thank you for being there .It is so true that HOPE is so important! In this respect it is always so good to be connected with people who have nice and encouraging experiences to share.
Thanks .
My sister is otherwise strong and coping well with the medication ,hydroxy urea,except for the blackening of nails.
I hope and trust you will continue to be in remission. Good luck.

My recent CBC was wildly abnormal and I was referred to a hematologist. The only symptom I had was feeling “off” and thinking my thyroid was out of balance (I have Hashimoto’s and had a toxic thyroid in Aug 2023). He is pretty certain I have CML and has ordered a bone marrow biopsy. I just started Hydroxyurea. Needless to say, I’m scared. I am very active, doing water aerobics 1-2 hours a day 6 days a week with a busy social life. My meltdowns come in waves. After doing research about CML, now my biggest fear is what if it’s not CML and it’s AML? I’m not ready to cash in my chips, but can I really cope with everything ahead of me?

Hi @mjbulte. Getting a diagnosis like this is like a rug being pulled right out from under you! Been there myself! I’m reaching right through the computer screen this morning with a huge bear hug for you…after that we’re going to take a deep breath and work through this together.

I went through a similar story 6 years ago when I was super healthy and active, then out of the blue…wham. AML. I wasn’t ready to cash in my chips yet either. So I launched into treatment head on and have been cancer free for 6 years…back to being super healthy and active (at 71). The diagnosis isn’t an automatic trip to pushing daisies up from the underside!

Whether you have CML or AML you’re already on top of it with your doctor. I know you’ll deal with whatever you need to! And I can already tell that you’re a positive, take charge person with your attitude and being so disciplined with your daily exercise. That all works hugely in your favor! It’s ok to have this roller coaster ride of emotions right now. You’re human. The initial waves of panic will level off and you’ll coast through this.

Your doctor will most likely run tests to determine if there are any genetic mutations that may be causing your CML/AML. That can determine treatment. Since both of these are a type of leukemia, a bone marrow issue, a bone marrow biopsy has been order to go right to the heart of your blood production center. The test will show your marrow’s overall health in being able to produce healthy blood cells and can help determine the type of disease and what the treatment will be.
So before we put the cart before the horse, let’s find out for sure if it’s CML or AML.

When is your biopsy?

Lori, thank you so much. You have no idea how much your response means to me. I hope someday I can do the same for someone else. Until then, oof, this is a LOT. We’re waiting on insurance approval of the bone marrow biopsy so it can be scheduled. I’m scheduling my echocardiogram today. A lit of blood was drawn last Thursday and waiting on those results. Another draw on July 18 to be done.
We’re scheduled to travel 2,000 miles away to visit family and friends for 10 days in just less than 2 weeks. I just can’t decide if we should try to go or not. Maybe reschedule for a later date. But at a later date will I not be able to travel? Gosh, it’s got my head swimming.
I feel better some of the time on the Hydroxyurea and sometimes a bit sluggish, flushed, queasy but nothing majors, then that goes away and I feel better again. I just found out my last CBC was 8/17/24 and it was normal except WBC were 14.2 and platelets were high end of normal. Of course my 6/26/25 CBC was horribly bad with WBC 21.4,
platelets over 1,000 plus other dismal readings. At least my hemoglobin was normal!
I must be brave but my armour is cracking 🥴

Hi @mjbulte, Reading your reply had me thinking of an act on the old Ed Sullivan show…where this man would have plates spinning on top of wooden dowels…always running back and forth, trying to keep them all aloft at the same time. That’s what I feel you’re going through with everything that’s going on in your life right now!
There’s a lot up in the air with waiting for a diagnosis, appointments for labs, vacation plans… But like the act, each plate was under control and taken down at the appropriate time. Same for you…one day at a time and this will get sorted out!

Not sure what to tell you about the family/friends reunion vacation. It would be a shame to miss that after all the planning. You could ask your doctor if they see any problem with you making this trip. They would know more about your situation and whether or not it would be ill advised. As long as you’re doing ok on the hydroxy, you feel up to it and you take precautions to avoid illness, the vacation might be a welcome distraction for you.

Because the hydroxy can interfere with your immune system you may be more prone to illness. But it doesn’t mean you have to stop enjoying life. Just mask up if you’re flying (plane/airport) and in groups of people if you’re indoors with family and friends.

I’m here for you if you have any questions/concerns, need a shoulder or an ear. ☺️ Please me know what you find out on your labs? I’m nosey that way.

Thank you Lori. Echocardiogram is Monday next week. Will be scheduling bone marrow bx tomorrow. Hoping to get that done ASAP or never, depending on my emotions at any given moment.

Aw, I honestly, I can appreciate what you’re going through. Fright, flight or fight!
From my experience, it’s just better to know. Then you can face this issue head on and you feel as though you’re moving forward. I don’t know why we humans tend to always think the worst…but we do. And most times it’s all for nothing.

So please try to stay positive as your mind works through this. Distraction can be very helpful in stressful times. Walks, painting, sewing, reading, gardening, time with friends…all of that provides some much needed diversion in the present as your brain processes and comes to terms with issues behind the scenes.

And don’t forget to exhale! Hugs.