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

I went to see my oncologist with my son. Not the best news. She said I have CMML with 6 mutations that they don’t like and has something to do with AML. She is going to start me on a drug called ascidene (?) and a pill. She said the pill can mess up your other counts so they keep a close watch. She said the problem is if and how long the treatment works for.
She was up front and said statistically it ‘s 2 years.
However it depends some CMML patients do well on the treatment. Are there any people on this site who has CMML and had good results.

Thank you so much Lori. You are so right about my white cell count bring high and my spleen is enlarged. So I think like you say she wanted to get it down so put me on a high dosage if highdroxy. She did agree though right away when I asked if I could start slowly. I also like your idea about how to increase it. You are also right about life span. I do know better and will not be looking up on google. I am grateful for all your input. You put everything into perspective and see right through it all. I will let you know what happens on Tuesday. God bless you.

Hi @jacklyn, if your doctor does increase your dose of hydroxy from 1000mg daily to 2000mg, you might ask if you can cycle up slowly by adding a pill per day incrementally. I was able to do that with a few of my meds so that it wasn’t an abrupt change and side effects were kept to a minimum.

When hydroxy is used for patients with CMML, from my understanding, its purpose is to bring the numbers of white blood cells, including monocytes, down to normal. It may also help shrink an enlarged spleen. Your doctor will most likely check your blood numbers to see where your white blood cell count is before adding the increased dosage.

That’s amazing that your pain level has diminished so greatly and a positive side benefit! HU can slow or stop cancer cells from growing in the body so that may be why you’re feeling so much better. I had a similar experience when I started my first round of chemo. At that time I was in the hospital where the infusions were daily for 7 days. My sustained fever of 102 disappeared and I physcially started feeling better during chemo. So my first exposure to the toxins I feared in my imagination turned out to be my life savers in the end! ☺️

Ohhhh my goodness, yes, please stay away from Dr Google! 😅 To be sure, there are some great articles out on the internet but searching can also lead us to information that may not necessarily apply to us directly. Just reading a piece of mis-information can plant a seed in our imagination that can grow out of proportion! If I paid attention to my projected life span I would have been gone 5 years ago. I have no plans on checking out any time soon! So just enjoy every day! I read a bumper sticker yesterday. It said “Live life like they left the gate open.” and I’ve been doing that for years. Don’t worry about ‘what ifs’. ☺️

Good luck Tuesday. Let me know how your oncology appt turns out!

Thank you again Lori. I am doing fine on the hydroxy 1000mg in the morning. I will see what happens when I have to raise it another 1000mg. Maybe Sherrill agree to twice a day instead of taking 4 in the morning. What is also interesting Lori is I haven’t had to take Tylenol. I was taking 1000mg twice a day.
I was scared when they talked about chemo because I did accelerated chemo and radiation 17 yrs ago. For breast cancer. I was very lucky I was able to work through it all. I read if you have done chemo in the past it might not be as effective if you have to do it again. Also I read as a 76 yr old with CMML life span is 20-30 months. Yikes. That caught my attention. I think I better stop with google. I have my faith and decided to turn it all over to God. I also know that God doesn’t like it if we go back and forth once we ask him to take charge. Trying hard to stay out if his way.

Good morning, @jacklyn. From my understanding, specific acquired mutations can influence the direction of CMML and the treatment required. One set of mutations may lean more to dysplastic CMML, which is slower to develop. Where another subset of mutations may lead to a more proliferative form of CMML which could progress to AML at some point. Your doctor will have used cytogenetic testing to determine which mutations are involved so they can offer you the best treatment for your diagnosis.

Often when you’re being seen at a larger clinic, there may be a team of doctors who review cases together as in, “many heads are better than one”. So if the board at your hosptial has determined that your CMML could be the type to drift into the AML territory, they’re seeking to prevent that from happening and that’s reflected in the treatment plan that’s being set in place for you.

We do have several members in the forum who also have CMML such as, @cblowers1 @tbone45 @beewoman70 who may be able to share their experiences with you. Also, @joesim started this discussion a couple years ago:
Looking for recommendations of doctors with expertise in CMML
https://connect.mayoclinic.org/discussion/cmml-2nd-opinion-docs/
I know it’s so scary getting a new diagnosis like this and not knowing a thing about it! But it sounds to me like you have a great doctor and a team behind her. That’s so important for feeling confident about your care. You have another appt with your doctor Tuesday so that gives you the weekend to try out the hydroxy. This also gives you time to make a list of any questions you might have for your doctor. Don’t hesitate to ask those questions or express your concerns. My doctor and team at Mayo always encouraged me to let them ‘take on any stress or worry’ so that I didn’t have to. So try to relax this weekend and talk to your doctor Tuesday.

How are you feeling today after your first rounds of hydroxy?

Hi Lori.
My oncologist told me that I have CMML but that the board at the Jewish want her to treat me as AML. So it won’t turn into AMl. Has anyone else had this kind of diagnosis. I have yo see her Tuesday. I have been started on Hydroxyurea.

Hi @cherbarn. I’m sure this is shock for you coming on the heels of your back surgery. Hopefully you’re recovering well from that procedure.
Amazing how we finally get our doctor’s attention when we have wonky bloodwork! I had the same misadventures with my primary care doctor 5 years ago.

No matter, you now have their attention! So, going forward, it will be important for you to follow up with the hematologist soon to get a firm diagnosis. This shouldn’t be delayed, especially with your history of extreme fatigue and low hemoglobin requiring transfusions. I’ve been through that myself and it is alarming the level of fatigue when we don’t have enough red blood cells circulating.

As you mentioned the hematologist oncologist will likely order more blood work, along with a bone marrow biopsy and aspiration. That test is important because it goes right to the heart of the blood manufacturing site in the body. The results will be used to determine your diagnosis and type. Blood abnormalities may suggest MDS, but the doctor can’t make an exact diagnosis without examining a sample of bone marrow cells.

I know this all feels pretty surreal right now and a little scary. Whatever lies ahead, you just found a new family here in Connect. There are several of us who have had MDS or AML and we’re here to help answer your questions and offer support, encouragement and hope!
My suggestion would be to avoid searching online for information right now. Until you get a diagnosis, speculating is really a waste of time and an anxiety booster!
When is your hematology appointment? I’d love to talk with you again so will you please let me know what your doctor says?

I just got results of blood tests today that are indicating myelodysplastic syndrome. I received 2 units of blood almost a month ago for severely low hemoglobin. 6.6 My platelets are elevated, My B12 is greater than 2000. My erythropoietin level is 35.6. I have had severe shortness of breath, with minimal physical effort, extreme fatigue and dizziness at times, since last summer. I broke 2 ribs last summer so thought these symptoms were associated with broken ribs. I think my Dr believed I was exaggerating my symptoms since my O2 sat was always normal while sitting in his office. He never ordered any blood tests at all. Fast forward to this summer, I had back surgery with preoperative blood work that showed numerous abnormal values and Severely low HgB. Now the Dr listens to me. Of course, all blood work is returning abnormal and I will be seeing hematology oncology for further testing and bone marrow biopsy to determine more specifics. My hope is that this has not already progressed to AML.

Just seeing your words lifted my spirits tonight. I had decided not to worry until all questions have been answered. Then I saw your post. No worry necessary. Thank you.

Thank you for your info. My hematologist wanted me to take 4 500mg of hydroxyeura once a day but I asked her if I could start with 2 500mg. I find that a lot. She agreed and then said we could increase it slowly. She also put me on a medication for my kidneys yo take with it.

Hi Jacklyn, I was also diagnosed in November 2023 at age 76 with what turned out to be Ph+CML after some alarming routine blood tests showed platelets at 2000 (normal range tops out at 450). The hematologist oncologist put me on Hydroxyurea 500 mg twice a day which steadily lowered the platelet count to acceptable levels. I had some side effects such as thinning hair, fatigue, mild nausea at times, but overall tolerated the drug quite well.
I had a bone marrow biopsy to confirm the diagnosis. I didn’t have any sedation and honestly, it was no big deal. I’ve had root canals that were worse. In January of this year I stopped the Hydroxyurea and began taking Tasigna in a clinical trial which has some side effects, too, but not too bad.
Just follow your oncologist’s advice and you’ll be okay. CML is very treatable with medication. Best of luck to you.