Chronic Myeloid Leukemia (CML)

Hi @anglis. Welcome to Mayo Clinic Connect. I think you’ve already discovered in your very short time with the Connect community that we’re a welcoming place to share our stories and life experiences to help each other. I saw your posts in the Men’s Health and you’re truly a positive and inspirational gift to members facing intimate issues with your frank discussions.
Well, aren’t you just a breath of fresh air! You and your husband sound like amazing people; caring, forgiving, understanding and compassionate. I noticed you apologized for being chatty! Nope!! Don’t ever feel that way. We’re all just sitting around the kitchen table with our collective cups of tea, coffee…and having a gab-fest. I recollect times when I was a child with my mom, aunties and grandmothers gathered at the table in their Coffee Clutches. I learned a lot by eaves dropping as I’m sure they had no idea little ears were hiding around the corner. LOL Here, we can all learn with our open dialog!

I’m picking up in the Blood Cancer group. I’m an AML survivor and to hear your story of CML being in remission and you might get off the meds is just over the moon fabulous! What an inspiration your news is to anyone with a diagnosis of CML.

What are the side effects from all your chemo over the years?

Hi. First off. I'm sending you a great big hug!💖 And I'm hoping today is a good day.

Taking new drugs is always terrifying. You never know what the side effects are. And believe me, I've been on a few. Let's see. Initially, I was put on hydroxeria, 2,000 mgs daily with allpurinal to prevent gout in my liver and kidney. (I only have one) 1995-1996.*

Then I was refused further treatment because I couldn't afford it. Long story. Don't want to bore anyone to tears.

After moving from NC to the UK, I was eventually put on interferon. I really didn't like it. I hate needles and having to give myself a daily shot took a lot out of me. Flu like symptoms every single day. I had bone pain, constant fatigue and it affected my blood groups all the time. Mainly platelets. 1996-2001.*

I then took part in a study. In London. STI-571 which it is now called Glivec. I was on that study for exactly 6 weeks and fell pregnant. I had to stop all medication. Then, a year later, treatment resumed. Glivec. 2002- trial. 2004-2005.*

Right now. I'm taking dasatinib. 1 pill a day. 2007-2021.*

I've had over 100 bone marrow biopsies. Breast bone and both hips. Stem cell collection. I've had platelet transfusion in the early days. And I nearly died in 1995 from over dosing on chemotherapy. The dosage was too high and because I was written off work, no income. I couldn't afford to pay the dr. So he left me on 2,000 mgs. I ended up in quarantine for 2 weeks. My blood groups were nearly depleted. I

Anyway. I'm still here to tell the tale. I'm very grateful for my second chance at living. So if I can help in any way, please get in touch. That's for anyone that reads this message.

* Years I took chemotherapy

Sending gentle hugs.💖

Oh my gosh, gurl… You’ve been through the wringer. AML’s generally the challenging alphabet grouping of the Leukemia Club! CML is supposed to be the easy one (tongue in cheek…there IS no easy one). What you’ve gone through over the past 20 years is anything but timid!
The chemo overdosing sounds horrific. It’s not pleasant anytime but to be on it and not being monitored, no matter the financial status, is reprehensible! I’m really sorry you had to go through all of that but wow, you certainly came out on top of this incredible challenge.

There certainly is nothing like a second chance at life. It’s something I’ll never take for granted. Not that I did the first time around but we get complacent and don’t quite always appreciate every day. My story is lengthy as well. If you look at my @loribmt link you’ll find my bio and postings so I won’t type it again.
But I truly know and understand your glee at possibly getting off the meds! AND to have made it 20 years, defying the actuarial tables. Sorta feels like a super power, doesn’t it? Giggle. I came out the other side feeling pretty invincible; healthy, strong~mentally and physically and an advocate for surviving and thriving after AML and bone marrow transplants!

It’s a pleasure to have you on board and I know your experiences, along with your positive and inspiring comments will help a lot of members along the way.
Are there any other groups that have piqued your interest?

Hi Lori! Thank you for your kindness and wow! What a welcome! I'm actually eager to help anyone. I've recently been diagnosed with prediabetes, since 2017. Trying to lose weight is a nightmare come true. But yeah. My eldest daughter was diagnosed with Type 1 diabetes at the tender age of 2 and half. She's 20 and struggles with this horrible disease. And currently fighting to keep her eye sight. She underwent vitrectomy surgery on her left eye back in July this year and she's waiting to have surgery on the other eye.

Personally, I would be climbing the walls. She's hardly complained. Her father and I try to support her as much as we can.

My husband has ulcerative colitis. He copes with it as best he can.

So. Yeah. We have 2 other children that are pretty healthy. 💖

Back to your message. AML is scary. I've always worried that mine would end up like that. I mean. I've never done anything special. No clicking my heels. No magic spells.😆. I will most definitely read your bio. And I guess I should post mine in that section too. Saves rewriting a mini novel.😂

Couple updates since my last post. After meeting with my general physician in person it turns out that the camera does add 10lbs. I do not have an edema issue currently, too my video appointments in the last year or so.
After six months of weight loss with regular exercise and help of a prescription of phentermine I’m feeling ok. I have noticed more afternoon fatigue again after finishing the phentermine.
As far as lab work I am also having a major molecular response with 100mg dasanitib daily. Something my OC mentioned during my last appointment was a possible option to reduce the daily dose to mg. There is a recent study that was conducted on 100mg dose reduction to 50mg that looks promising. The goal would be to maintain the molecular response and hopefully reduce the side effects. My appointment is coming up later this month and am looking forward to discussing this option more in-depth with my OC. It does make me nervous changing something that works if I can tolerate the side effects.
I am also curious if phentermine maybe an option to help with the fatigue long term.

Overall I’m very grateful to be able to have option to consider as this isn’t always the case for some.

Living, this is sounding overall positive. I appreciate getting the update and look forward to hearing what you learn at your appointment later this month.

Hi all,
I want to let you know about a new, online course created for patients and caregivers living with CML by Mayo Clinic experts. It's free and available to all.

- Chronic Myeloid Leukemia Patient Education Series https://mccmscontent.mayo.edu/LSC/ChronicMyeloidLeukemiaPatientEducation/content/index.html#/

The purpose is to help people be more confident in their treatment plan and to help you to know what questions to ask, notice potential side effects, work towards treatment goals, and monitor your own therapy, to improve your treatment results. Feel free to share with others.

@living @anglis @craighatescancer @suzie71, how are you doing?

Hospital missed Polycythemia Vera Nov 2020 but; Mother/ Wife age 50
Hospitalized for cellulitis 2x (same CBC numbers 2022; 3x-4x higher (Doctors blame the septic) Hospitalized same CBC numbers 2022; needed to find answers) After bone marrow biopsy: Myelofribrosis / Myelofibrosis is considered to be a chronic leukemia. ((Doctor / Mayo Clinic/ several websites) I've always had overload iron and first time low iron MVC + 72 (normal is 80-100)) Anemic. I've been screaming in pain when I over do it (2 hours after working)- It's weird but I have bone pain and several other symptoms. I'm so excited to have more information. Wish I could go to Mayo Clinic, but insurance pays for Blood Cancer Clinic in Ocala, Florida. I have Several Rare Diagnosis and symptoms over lap. Thank you for this website... NOT FEELING ALONE!

Hi @raremiracl2 I posted this same reply where we left off in the PV discussion. But this is a much better spot for you since you were diagnosed with CML. I’m so happy you’re not feeling so alone now! Though somewhat rare, we do have members with CML and you’re now among a new family.
I’m happy to help you find answers and offer some encouragement! I had AML, acute myeloid leukemia. Actually I was diagnosed just shy of 4 years ago. Can’t believe how quickly the time has sped past!
Several rounds of chemo got me to remission but because of the mutations which caused the AML, I needed a bone marrow transplant to prevent a relapse. I’m now 3 years 6 months post transplant in a durable remission!
Happy-dancing through life now. ☺️ It’s my pleasure to be able to encourage anyone else experiencing a blood cancer that you can get through this! It’s important to stay positive. Here’s my story:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Chronic myeloid leukemia can be very slow to progress, which is fortunate. It gives you time to find a good oncologist and get treatment options for your particular case.

You may have already read some of these articles but this is a fairly good one from Healthline.com. It explains CML and its symptoms. If you read down, you’ll read why CML can cause bone pain. The proliferation of white blood cells expand beyond the marrow and reach to the outer bone and joints.
https://www.healthline.com/health/cml/chronic-myeloid-leukemia-symptoms
~~~~
Another informational article worth mentioning was this diagram about how CML affects the body, again from Healthline.com
https://www.healthline.com/health/chronic-myeloid-leukemia/living-with-cml/effects-of
If you like to get a second opinion you’re always welcome to contact Mayo Clinic here: http://mayocl.in/1mtmR63

Are you currently receiving any treatment for the CML or are you in a watchful waiting window?

Has your vision cleared?