"I Had Every Symptom of Leukemia & I Explained Them All Away" | Michele's CML Story

Michele has always lived a vivacious life full of vibrant hobbies from ballroom dancing to traveling.
But when she started to feel winded and fatigued, she brushed her symptoms off, until she was diagnosed with chronic myelogenous leukemia (CML) diagnosis. CML is a type of chronic leukemia that starts in the bone marrow, creating leukemia cells that then transfer to the blood.
In this story, she shares her journey, including first symptoms, researching treatment options and advocating to get a second and third opinion.
Full story & transcript → www.thepatientstory.com/patie...
The interview has only been edited for clarity.
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Content in this video:
00:00 - Intro
01:59 - Describe your first symptoms
05:37 - How did you end up in the hospital?
09:08 - When did you start processing you had leukemia?
10:58 - Going through tests, scans & a bone marrow biopsy
13:36 - Going through the leukapheresis process
16:04 - Receiving the full CML diagnosis
19:54 - How did your doctor discuss the next phase of treatment?
21:37 - Deciding to get a second and third opinion
#chronicmyelogenousleukemia #leukemia #CML #chronicmyeloidleukemia #oncology #bloodcancer #ChronicMyeloidLeukemiaSymptoms #leukapheresis #bonemarrowbiopsy #secondopinion #cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #blastcrisis #chroniccancer

[@water2wine1]

My mother had cml. She was diagnosed at 54. She was going through menopause. She went to the doctor for a checkup and maybe some hormone replacement. Her blood test came back as a high white count. The doctor thought maybe she was having an infection from diverticulitis so gave her a round of antibiotic. I still remember seeing her looking at herself in the mirror and smiling that she was going to be fine. But the counts didn’t come down. Doctor sent her for bone marrow biopsy. Meanwhile she had a dream that I received a beautiful bouquet of flowers at the door for her and sat them on the counter. In the dream she saw them and they suddenly wilted. She knew the results were not going to be good. She was given 3 to 5 years and lived 7. Passed 10 days before her 62nd birthday. That was 1992

[@ElephantsRock19]

🕊️🙏🫶🕯️

[@ER-xl6cs]

“Ask for sedation.” Ask the insurance company and also ask how much it’ll cost. Lots of people can’t afford extras. If somehow it’s considered optional, it is probably not considered medically necessary by insurance companies and the patient will pay.

[@carolbuchel3011]

That makes me so mad regarding the bone marrow w/o sedation!! How cruel and inhumane! I have PTSD from traumatic medical experiences similar to that and from dismissive doctors. I'm so sorry for you-like the mental stress wasn't enough to deal with.

[@jovitavillalpando2827]

I’m 72 I would never let them do a biopsy without sedetion

[@puregold1725]

I had an in office bone biopsy, it was no big deal. The dr numbed the site and I was fine.

[@5Gburn]

I heard her say "light sedation" and I was shocked. I want to have heavy sedation. Total dark sleepy time (I've had an endoscopy so that's how I know).

[@clintandbecky7198]

I worked in a lab and seen so many non sedated BMB. It’s horrid to see these people in that much pain. Idly they don’t make them all sedated. No one should have to deal with that kind of pain, especially during such a traumatic time in their lives. Definitely inhumane in my opinion

[@CynthiaWord-iq7in]

They have been drilling into children's bones for unsedated marrow excision for almost 50 years for leukemia. Monstrous.

[@oldcollegecoed]

Unfortunately, so many cancers have symptoms that seem innocuous…cold/flu symptoms, being unusually tired, feeling “weird” or “different,” needing naps, etc. Tragically, frequently it isn’t until the bad symptoms finally show up that scares people enough to take action, and sometimes it’s just too late. This is what happened to my precious dad back in 1995, after he’d felt crummy for a year & went to the doctor repeatedly, but didn’t get diagnosed with advanced colon cancer until he began to pass blood. By the time they finally operated, the cancer had spread to his liver, but he was only 64 and in great shape so his oncologist was sure he would tolerate the treatment. Tragically the surgeon who operated on him left surgical tape in his colon during his surgery, and my dad’s experienced terrible pain for weeks. The surgeon dismissed it as adhesions, and it wasn’t until we rushed my dad to the ER because of a 103 fever that we learned he had a baseball size mass in his lower colon that had to be removed. He was operated on again (2nd major surgery in 3 weeks) and we were told about the tape. As a result, my dad’s entire system was so compromised and he wasn’t allowed to even start treatment for 3 months (4 months after diagnosis). By then it was too late. He died 9 months after diagnosis. For everyone reading this, PLEASE don’t ignore seemingly mundane symptoms, especially if they’re relentless. And, most importantly, if you don’t like your doctor find another. None of us liked my dad’s surgeon at all; he was cold, arrogant, bragged constantly, and dismissed my dad’s concerns. We just had no experience with surgeons, this particular surgeon was the lead in the department, & the fact that he might have cancer hadn’t been shared with us. Ultimately, the surgeon’s response to his failure & my dad’s death proved his character; he said, “Well, he was probably going to die anyway.”

[@cmpurvis1]

That doctor harmed your dad. He should be sued for malpractice

[@HWolfe]

See an attorney.

[@Love2Dance48]

That is so so sad. My mother and father also died from medical negligence. It is infuriating and there is little that can be done, as they typically protect each other, and proving negligence is nearly impossible. That surgeon is horrible, and it is so difficult, when you just don’t know, to demand better. I am so sorry for your loss, your dad was far too young to die.

[@PENcilitis]

Lost my Dad after just 2 months Dr was useless... I wish I had gone to the appointments with him, I am sure I would have realised this Dr ( Sooooooo full of his own importance) could not have cared less about my Dad... My advice... Take your loved one to the Doctors, ( however independant they might be, insist on going with them) YOU might be the 2nd opinion, that determines a 3rd is necessary

[@alexandragrace8164]

I am so sorry for what you and your dad went through. Why are SO many doctors narcissistic a holes?! Humility should be the first doctrine of the Hippocratic Oath. THAT is how you do no harm.

[@deborahmeyers551]

All cancers are tough and ongoing you never just walk away after ringing the bell thank you for sharing 💜

[@shermac246]

Stephanie, another excellent interview with Michelle. I learned so much from Michelle and would like to thank her for her candor and authenticity. I wish her well with her ongoing treatment 💕

[@Love2Dance48]

Thank you, Sam. If I can help evenone person, I am grateful. Stephanie is amazing, and did an amazing job putting this together. Thank you for taking the time to watch and comment!

[@tweetiebirdism]

This was so cool to see Michele’s story, I think we are in some of the same CML groups. I have CML too and agree that you need sedation for a BMB. I’ve had two and I was not sedated, never again. Keep dancing!

[@ThePatientStory]

Love that you're already connected! -Stephanie

[@Love2Dance48]

Hello! So glad you enjoyed! Cool, not cool we are in the same “club”!

[@lynnbailey1948]

Thank you Michele for sharing your story. Your experience with your first bone marrow biopsy (BMB) was similar to mine. My blood pressure began dropping, & I was nauseated. It was tough! We left my local oncologist & went to MD Anderson, and there we insisted that I be sedated for my BMB. For me, it was a short nap, it was over, and I was ready to go have a CT scan next. FYI, my diagnosis is SLL. I look forward to hearing more of your story.

[@Love2Dance48]

Yup! Easy peasy that way! My entire journey is on a blog, Dancing and Traveling my way through leukemia. There is a lot of yadda yadda there! Lol I hope you are doing well!

[@anothercampervanchannel]

I've been watching your channel for a couple of years now and have seen it grow and get better. You're a great interviewer-very empathic and you listen well and not obsessed with hearing your own voice like some folks, lol. 😊👍

[@helentaylor7132]

I only had stage I breast cancer and needed only radiation. When the young female oncologist explained the three choices offered, I selected one in my mind and then asked her if I were her mother what she would recommend. She said the one I had decided on. (If she hadn't, I would have asked her why she would chose the other one and then decide for myself.) I was happy that she answered my direct question with no waffling or refusal to answer. Being only stage I is great and it could recur elsewhere, but I don't see myself as "a survivor." I reserve that for people who have it a lot worse as in more advanced stage and need chemo. I wasn't going to ring the bell after done with radiation, but decided at last moment that I did deserve to do that. Breast cancer may have saved my life because during diagnostics it was found I had a rather large brain aneurysm that needed to be stented by a neurosurgeon at a larger hospital. I am so lucky that all my doctors (now that my primary is an excellent CRNP) and surgeons were/are just stellar, personally and professionally.

[@rebeccadavidson4435]

Wow - you are so matter of fact yet flat out honest. I listened to you talk about how you will never have another bone marrow biopsy awake. I have my own story about the 2nd biopsy that they did (not bone marrow), at my local hospital, under conscious sedation deep within my gut. It was not an experience that I would wish on anyone. In addition to it being a traumatic experience, the results were inconclusive. Months later, the nurse supervisor @ Moffitt spent over an hour on the phone with me to eventually talk me into an awake bone marrow biopsy. (I was so terrified and had logistics problems in getting someone to drive me / basically stay with me for 24 hours so I almost skipped it. Luckily there was no bone marrow involved at that time). That supervisor actually scheduled herself to be there with me. She literally held my hand. There was just a bad few seconds. They stopped/corrected immediately. Thank goodness it went so well. The other thing I want to comment on is that you got 3 opinions before you found a connection. I am on my 3rd oncologist. She is the best of the bunch yet there is still something missing. Connection and feeling heard is SO important. AMEN to that! My journey and dx are atypical all the way around. So many twists and turns, I don't really fit into their differential diagnosis checkboxes. I keep reporting symptoms that can be related to my NHFL, yet they tell me my CT/labs are fine so my symptoms are not related to my CA. WHAT?!? How do you deal with all the uncertainties? I can relate to how so many Drs are so rushed/impatient or make you feel like what I am saying does not matter or is wasting their time. Thanks so much for sharing.

[@joannaspieszna6863]

Thank you for sharing your story, Michelle. You’re an inspiration ❤

[@4BarbaraJ]

So much good info in this interview. Excellent.

[@ThePatientStory]

Glad you enjoyed it!

[@LifeOfJimbo]

Thank you for another video, I've learned so much from your channel.

[@ThePatientStory]

Thank you for watching ❤️ please let us know if there are any topics that would be helpful for us to cover

[@raja1baja1]

It was great hearing out Michele’s story especially the fact some people think CML just a good cancer and its totally normal they try to normalise CML though they intend well or to keep us positive but it’s important to understand TKI’s are still kind of chemo which target abnormal gene and cancer cells which lowers the immune system make our body weak and make us feel sick most of the time. Rest god know us better and how we feel.

[@ricksagan5890]

Very informative CML video!! I also have CML and struggles with other cancers and conditions, nice to hear other peoples journeys!!!!

[@ThePatientStory]

So glad this resonated with you, thank you for leaving a comment! -Stephanie

[@00000714ful]

hope the best rick . feel free to email me any time . i have the same thing i think . still waiting on boemarrow tests . so hope the best for you.

[@ricksagan5890]

@@00000714ful thank you. Wishing you the best outcome with your bone marrow biopsy. Thankfully CML is manageable...I struggle a bit with all the other issues that appeared since CML. Keep in touch as well.

[@DONALD1951]

Great interview…love the dog too.

[@SisterSunshineTV]

My aunt died from CLL it was before gleevic was approved. My best friend has it she was super fatigued had no idea. Went for a physical and the dr called and said go straight to the ER. She is alive thanks to gleevic

[@easystreetwithjen]

Those blood machines are amazing! They prolonged my dad's life with a similar or same machine and it pulled 10s of litres of water off his body when his heart, kidney and liver was failing. It's interesting that they can filter out white blood cells.

[@Love2Dance48]

It truly is!

[@macpduff2119]

I had a bone biopsy 4 months ago without sedation and it was brutal. `next one I will be sedated and have someone drive me home

[@sharonthomson3366]

That’s shocking. I’ve had a dozen of them and Always offered good sedation. It was not an option. I use the green whistle it’s great.

[@macpduff2119]

@@sharonthomson3366 Update- when I had my 2nd biopsy, I insisted on sedation and it was a much much better experience. I'll ask about the green whistle. Im being treated at UNC Cancer Center and am in remission now. CMML

[@kimpeterson8090]

67 year old female, I had a bone marrow biopsy no sedation, no big deal some pressure is all.

[@fusspot57]

I have CML. My first two bone marrow biopsies were awful. Done by the same doctor who I think was a sadist as they were done just with local anaesthetic. On the second one, he and his assistant were joking that I was a "good patient" compared to others on the leukaemia ward who were literally screaming in pain during the procedure. I mentioned this to my Clinical Nurse Specialist and she was horrified that I wasn't offered Entonox (gas and air) which is standard procedure, so I think he was reported to up his game and show some compassion to his patients. Here in the UK it is not particularly standard to be offered sedation for a BMB but you should be offered Entonox. Take it, it made an unpleasant procedure (I have hard bone too) so, so much more bearable. Even to the point where I was laughing at silly jokes! I just wanted to put this out there that Entonox is also an option.

[@ElephantsRock19]

Thank you so much for such an informative and thoughtful video! Pushed me to finally get a 2nd opinion from a specialist... I adore my current oncologist, but he isn't a blood cancer specialist that probably never/rarely sees a blood cancer patient! I'll also request conscious sedation for a bone marrow biopsy (if they ever do one, I've been wondering why not for 2 years now), if they sedate me for a colonoscopy they can certainly sedate me for a BMB! 🕊️🙏❤️🕯️

[@katinabotten]

I need CML ruled out because I think I have symptoms since July 5. But, my PCP is referring me to a wound specialist instead of a hematologist for a possible bone marrow biopsy. 1. Strange bruising 2. High GR% 3. Severe itchy skin 4. Bleeding under skin - petechie 5. Dark purple spots on lower leg(s) 6. Skin infections 7. Bedridden fatigue

[@jovitavillalpando2827]

I loved the cotton plant in the background I think I have leukemia I have all the symptoms plus nosebleeds my back hurts

[@Love2Dance48]

Thank you! And oh my goodness,I hope you get checked out, and find everything is alright.

[@flxmkr]

How do they do the BMB on someone with osteoporosis?

[@debraweikel4521]

Good information. My brother was diagnosed a year ago at the age of 80. He was always strong and a hard worker. He said in hindsight he had symptoms, but was stubborn and wouldn’t see a doctor. Doctors said he would have died if his wife hadn’t called their children. Who took him straight to the hospital.

[@Love2Dance48]

Oh, my goodness! Cml can get ugly if not treated, and I was super close to reaching that point. I hope your brother is doing well.

[@carolchen9776]

I used to have leukemia when I was 5

[@UTAH100]

I thought by the title she disagreed with the diagnosis and explained away why she did not have it. Slightly confusing title. I hope she gets back to feeling 100%. Brave women and her story can help many. Nothing wrong with second opinions and switching. Just know some of the best docs are not the nicest and often many of the nicer ones are not the best. Clean communication however is very important as is his/her competency.

[@Love2Dance48]

That is so very true, and when you have a lifelong cancer, you want to find a doctor that is both relatable and extremely competent! I believe I. Self advocacy and believe that more and more people, and physicians are getting onboard with that philosophy.

[@UTAH100]

@@Love2Dance48 True- hope you are well.

[@RustyShakleford1]

I had a bone marrow biopsy done without sedation or anesthetic mannwas that ever painful

[@mariec4275]

Did you have chemo with the ovarian tumors ? Great to see you are doing so well now 💕

[@Love2Dance48]

I did not. They were borderline serous tumors and were surgically removed. It took an entire year to recover from that surgey, and I was fairly young and in great shape! It was the worst! I am still monitored closely, as they were unable to remove all of the cells related to the tumors.

[@captainhml3868]

I had plasmapheresis!

[@PaganPunk]

They thought I had it too!! Turns Out I've had ITP for many many years!!!

[@jessicastroud7213]

What were your symptoms? How did they find out you had ITP?

[@kmerrillschaecher984]

I am constantly surprised that people are so unprepared to see themselves as ever getting ill. I guess we think we are invincible. We are not. Learning that, we hope for the best I don't dwell on it but I am aware we all die of something. I do not know all diseases in depth and would not be happy, it takes time to assimilate the information. I would not be concerned about what the meds are doing to us but know the risks of the meds

[@Love2Dance48]

I do understand what you are saying and am grateful for the meds that are saving my life, but the side effects can be brutal and damaging, so sometimes it is a catch 22. Take the antibiotic Cipro, which “may” and has caused permanent damage to my body. For me, the risks can be concerning. Fortunately, I am here and alive and able to enjoy life eleven years down the road.I am extremely grateful!

[@kmerrillschaecher984]

@@Love2Dance48 ❣

[@DecorTours]

Has she ever tried holistic therapies like from Hope4Cancer treatment center?

[@Love2Dance48]

@@DecorTours while I use oils, and such to combat side effects, if I went holistically, only, in my treatment, I wouldn’t be around long! I am great for the treatment I have, and it was the first of it’s kind, but now being used to make other cancer treatments less lethal.

[@DecorTours]

@@Love2Dance48 yes I meant in addition.

[@dw1920]

Didn't they numb it they told me they would sedate me I didn't feel any sedation but the numbing worked I felt 10 seconds of pressure it want bad I have a rare blood cancer called polycythemia vera there is no cure they just manage it

[@ThePatientStory]

We're looking to feature PV stories! If you're open to sharing yours, will you email me? [e-mail]

[@00000714ful]

i so hope the best for you. no cure for me also i would like you to know your not alone in this .feel free to message me any time if not thats ok d d

[@Love2Dance48]

Oh, they claimed they did! But apparently it didn’t work! Yowza!

[@kimmarrero6295]

I have hives itchiness blurry vision

[@akferren1]

Clot shot?

[@elainerobertson1988]

Happened in 2011 - so no.

[@weaverdreams]

You can’t really listen to this. You have to watch it because so much is typed on the screen.

[@lizafield9002]

"They call it 'practicing' for a reason"? The 'reason' is plain old academic terms: practicum means "doing." Action. Vs theory or speculative knowledge. It's not because the doc is just experimenting in a trial run.

[@mac-ju5ot]

I just switched drs I feel like I'm.going to die every single day.

[@AZVREIGN]

how are you now?

[@kimp7977]

I am sorry. I just got diagnosed with CLL. Crap, I am 67 and in the best shape, health of my life! Sheesh!

[@michelles9897]

🤍 very true switch doctors and don’t hesitate if you feel like it’s not a fit or they make you feel silly for asking too many questions

[@deborahlanyi5535]

Hate to say but I do "feel silly" ... Dr brushes off my questions. Making me feel like a waste of his time . New doctor hear I come.

[@Love2Dance48]

@@deborahlanyi5535 absolutely! I just knew I had to have the right person in my corner. I am very “picky” when it comes to who I allow to treat me!