How I Live with a Chronic Leukemia: “You Need to Stick Up for Yourself”

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How I Live with a Chronic Leukemia: “You Need to Stick Up for Yourself” | Michele's CML Story

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The Patient Story

Күн бұрын

Пікірлер: 30

@rebeccadavidson4435 10 ай бұрын

Self Advocating is so important. I wish I could figure out the right approach so that I am not a PIA. I am a details person and have multiple issues. Am I the only one that feels my Drs don't want the details, the background, or the big picture? They want one, two at most, things to discuss during a visit; the shorter the better. So sorry but that is simply not my reality. If you want to discuss the pros/cons or get a something other than the just the fluffed/puffed positive summary overview, you are NOT being a "good" patient. Thanks for sharing. This is such a journey!

@Love2Dance48 4 ай бұрын

Finding the “right” doctor is certainly not easy!

@MicheleTschirhart 2 ай бұрын

it is a journey, and yes! I want my doctor to know me as a person!

@sarahdavis8542 Жыл бұрын

You are a wonderful interviewer Stephanie, thank you so much for providing an opportunity for survivors to share their stories. So helpful!

@greenwald007 Жыл бұрын

This channel has been huge in my coping with rectal cancer at a young age. Been searching for more sources because my experience has been unlike anything my oncologists have really dealt with. Thank you for what youre doing!

@ThePatientStory Жыл бұрын

Thank you so much watching! ❤️ We are so sorry to hear you’re going through this. If you ever want to share your story please reach out to community@thepatientstory.com. Please let us know if there are any topics that would be helpful for us to cover.

@AMYBIERHAUS Жыл бұрын

I have, so far, untreated CLL, but this interview was so very helpful to me! I am 8 years in, and return for a follow-up to a CT scan in 2 weeks... wish us continued good luck, 'ey? Blessings to all ~ Amy 😍

@ThePatientStory Жыл бұрын

Thank you so much for watching! We will be thinking about you and wish you the best of luck! We are also so happy to hear this was helpful. Please let us know if there are any topics that would be helpful for us to cover. ❤️

@bohochic2459 Жыл бұрын

Amy Harvey - Thinking of you. I pray everything went as smoothly as possible with your follow-up CT scan. Many blessings to you. Hugs and love from Canada. 🦋👼🕯✨️🙏💙

@AMYBIERHAUS Жыл бұрын

@@bohochic2459 Every single prayer helps, and thank you so much for yours! ❤ My CT scan was "unchanged" from the previous one, so thank the Lord, still not requiring treatment at this time! 🤩 Again, thank you so much for your sweet words ~ Amy 💞

@donnamiley6778 Жыл бұрын

Good luck on your journey Michele.

@MicheleTschirhart 2 ай бұрын

thank you!

@alabamaoffshorefishing 10 ай бұрын

I was diagnosed with CML on Dec 18, 2013. I was 38 at the time. (WBC count at time of diagnosis was over 300k.) I was immediately started on 100mg Sprycel and achieved a deep remission in a very short period of time. Fast forward ten years, on 100mg of Sprycel the entire time, and now I’ve been diagnosed with severe pulmonary hypertension, which was cause by long-term use of Sprycel. Be vigilant to the warning signs of PH…it’s scary as hell, and a straight-up killer. The good news is that sometimes the PH is reversible by simply stopping taking the Sprycel. Hopefully that’s the case with mine.

@MicheleTschirhart 2 ай бұрын

I have been on bosulif for the past 6 years and still suffer with mild/moderate pleural effusion. I hope you are doing well.

@alabamaoffshorefishing 2 ай бұрын

@@MicheleTschirhart I am doing well…thank you for asking. With the help of some awesome doctors that came together as a team, I was able to get my PAH and CML under control. Switching from Sprycel to Scemblix has been such a huge improvement that it’s hard to accurately articulate the way my life has turned around. Best of luck to you!

@MicheleTschirhart 2 ай бұрын

@@alabamaoffshorefishing that is amazing! I have been doing well on Bosulif, but Scemblix has been brought up. Not sure I am ready for another with, though!

@Kiddro22 11 күн бұрын

When you say the “warning signs of PH”……are you talking about the PH factor of the blood? I’ve been on bosulif for 7mos now and my BCR-ABL/PCR results vary. I was on Tasigna back in 2019 and that no food 2hrs before and after is terrible. I was having side effects from that.

@alabamaoffshorefishing 11 күн бұрын

@@Kiddro22no, when I say PH, I’m referring to Pulmonary Hypertension.

@a-k6575 Жыл бұрын

Thank you for these interesting regular interviews, I definitely look forward to each of them, although I'm a patient with the following: Have you interviewed patients who are living with Woldenstroem Macroglobulinemia & Bing Neel Syndrome with Peripheral Neuropathy? Studying the effects of the various pharmaceuticals, I've come to the conclusion that some of us have different reactions, positive as well as negative. In my case options are not available, I live in NZ cancer patients battle for funding, seek donations via GiveALittle etc. Life for many is shorter without.

@ThePatientStory Жыл бұрын

@a-k6575, thank you so much for watching! We have interviewed Pete, who also has Waldenstrom’s Macroglobulinemia. Here is a link to his video: kzfaq.info/get/bejne/eLFgaZiqzbDKlZc.html We would love to hear more about your story. If interested, please feel free to reach out to community@thepatientstory.com. Thanks again and please let us know if there are any other topics that would be helpful for us to cover. ❤️

@laurenclark1480 Жыл бұрын

I have all this and masses growing and keep begging for help. I'm getting so weak. I can't do anything. My Grandfather had this. I have leukocitosis. I'm in so much pain hardly can dress self. I was non stop befire this. How do I get help?

@chasingwow4923 Жыл бұрын

Me too! Along with kidney disease and they are starting to fail. I hope you find help

@Love2Dance48 Жыл бұрын

I am sorry to hear this, Lauren. Find a really good doctor.

@Livetoeat171 Жыл бұрын

@@Love2Dance48 How do you know who is a good doctor? Most people who don't know anything about medicine for this particular type of medicine wouldn't know what to do.

@rebeccadavidson4435 10 ай бұрын

Can we read your blog?

@tonyrusso1479 6 ай бұрын

💙

@Livetoeat171 Жыл бұрын

Was the effusion painful?

@Love2Dance48 Жыл бұрын

More uncomfortable than painful. Dry cough and winded when I go up stairs.

@tammylines2779 Жыл бұрын

Dear Michelle Rasmussen, in so glad that i found you now 63 years old and i was Diagnosed with CML 2017, and have been on Sprycel like 7 years now and i just learned 3 days ago 4-17-2023 that Sprycel is the Cause 41:53 for my severe pain, this is the 3 Third time now and i was Diagnosed with gout back in 2009, and i wish this on no one i will get back to you tomorrow fill you in on the rest of what im going through you are the first one that i have came across that was going through what im now going through it two years ago i got it in my ankle i was leaving bed bath and beyond as i was going to my car i used the cart 🛒 to get to my car when i got back to the Quality inn. and i had to park five parking spots away and i got out of my car and i couldn’t even step on my right foot my ankle was swollen and felt like it i had broken the bones in my ankle pain was so bad I couldn’t walk I was standing in front of my car with my hands in the hood and my friend was there thank God she help me get to my room and it took me a half an hour to get to the bathroom on the floor trying to Scoot my way to the bathroom i went to the hospital the next day i had to use Crutches to get to the car in and out into the hospital i need to get some rest now when im sleeping and don’t have a pillow or blanket between my knees and when i wake up and there will be a red mark on my knees and right the is the spot on the inside of my left knee i can’t even touch it it’s like every time i move or sit i’m to the point that im going to the hospital tomorrow and see if a mussel releaser might help Tylenol ibuprofen does not workI been on Colchicine and it’s got to the point that it’s not working and the last time i happened when i moved one and a half a year ago that is when i started to skip a pill like one a week until a month ago and a half i was skipping like two a week i never skip them back to back and as soon as i was able to move into the Outpatient for Mental health and being treated like a human not a Victim because of slum land lord had no right to come over outpatient we’re i had spent my second night and walked right in the office with his with tracy as if he owned the place and talking behind by back and taking one of my Sprycel that was still in a box brand new the night before tracy was helping me packing and i took some boxes to my car when got back to the room the box that i was put all my meds in empty and she had moved my meds into a container and some was in another container i went down to ware she was and confronted her about moving my meds to make long story short she had he had her take the like seven or more of my boxes in her car and she didn’t come and drop off the boxes instead went to her house and didn’t come till the next evening with him so for two weeks the staff was coming to me and wanted to see my meds they had to see me take meds every morning and night and after five days i was taking my gout pills it’s ben so for a month and week of no skipping my Sprycel to weeks ago i told her that i could not take the pain sad i called sprycel and told them to stop my delivery until my i have my blood taken and sent to my UNC i started skipping Sprycel every outher night for over two weeks now one week and the Results of my blood will be back and I’ll find out then because she wants to stay on 100 every day it’s like she didn’t even care this is a new doctor and all ready she is not listening to me and the staff here it didn’t take them long to realize that that he was lying about me and tracy when she realized that he was lying to her she befriended him and the staff here said that he should have never come on this property that god im out of there sorry for the long comment i will keep you all in my prayers