Exhaustion Led to My RARE Blood Cancer - Doug | Myelofibrosis | The Patient Story

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Doug first realized something was wrong when he noticed he was getting abnormally exhausted from routine activities like mowing the lawn. After mentioning it to his doctor, he was referred to a hematologist and underwent a bone marrow biopsy and was diagnosed with myelofibrosis, a rare blood cancer. In this cancer vlog, he shares how had never heard of the rare blood cancer before and it took him a while to come to terms with having the disease.
Doug initially tried the standard treatment but had trouble managing side effects like fatigue and low blood counts. Through research, he discovered a clinical trial for the drug selinexor. Since, selinexor has helped stabilize his blood counts and has improved his anemia.
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The interview has only been edited for clarity. The interview has only been edited for clarity.
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Опубликовано:

30 мар 2024

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Комментарии : 30

@maryreynolds5310 2 месяца назад

Before I finish this video, I have to say…Bravo to the Dr that after he told the Dr he was exhausted all the time, he then sent him to a hematologist. If I were to complain of being so tired all the time (which I am) my Dr would gaslight me for sure! Sure, he might run a blood test, check my vitamin levels…but he wouldn’t take it further I’m guessing.

@sandilobianco6734 2 месяца назад

Same thing happens to me Mary.

@fullermoments 2 месяца назад

You are so right. My husband had consistently complained about his back pain....and our dr said...Well you and I are getting older, thats what happens etc. I had to advocate for him.

@LowKeyStatus Месяц назад

It’s the American way. You aren’t a person you are a dollar sign.

@cathylincoln323 Месяц назад

It's the same here in UK

@totesmagotes3688 10 часов назад

@@fullermomentsMy dad had back pain since I was 4. About 30 years later he had a massive heart attack, requiring a quadruple bypass surgery. It turned out it was heart pain the whole time.

@KatieBlue16 2 месяца назад

I've been watching these uploads most of the day today, and it just puts so much in perspective. We truly don't know when we could fall ill and be diagnosed with a disease we have to fight tooth and nail against for our lives. I'm keeping you in my prayers 🙏🏻 Sir ✨

@brennadickinson2920 2 месяца назад

I think it is possible to live with cancer. My experiences for the last eight years with Myeloma are that even living with cancer is possible with a certain attitude. It's been very engrossing to learn how to live with my mortality, no longer that glorious given of youth, but a sober, measured approach to life, embracing, not fighting off the inevitability. Really living each day. Becoming old is just as interesting and even as fascinating as all the other phases of my life. It's all experience.

@BrendaJJ 2 месяца назад

Hi, i never had cancer, but i hear alot about patients advocating for themselves. That's what you did through research and found this drug. I believe this drug saved your life. Keep going strong and helping yourself. Your a handsome man whose been through alot, yet coming out on the other side. ❤

@IAMGiftbearer 2 месяца назад

It's good that you didn't let your doctor talk you out of trying something new. Many doctors are not up to date on the latest research so patients often have to find it themselves.

@dorothypettijohn1037 2 месяца назад

I enjoined listening to your trial & errors of managing your cancer. You seem on top of things. Its empowering to feel you are in control of your medical Care. I have a chronic form of leukemia, listening to you was comforting. Good luck in yout journey!

@chrisberry9017 27 дней назад

It was really interesting to read your account of your journey with myelfibrosis. I was diagnosed in October last year, and am currently on a low dose of Ruxilitinib. It seems to be doing the trick, and there haven’t been any concerning side effects. My biggest issue is pain from spleen enlargement, and extreme tiredness. I live in the UK, and was given my diagnosis over the phone, just weeks after my husband (of over thirty years) passed away. It wasn’t until I’d been given the information that the nurse checked whether I had someone at home to share the situation with. It certainly wasn’t the NHS’s finest hour!

@petermcclean7945 Месяц назад

Hi Gerard just view your story i have Myelofibrosis from 2018 am on jaka treatment some good days and bad i will 68 in a few weeks I come Ireland great to hear about treatment for you and you said people never heard of it keep safe we are very rare people

@chrisberry9017 8 дней назад

I would be really interested to know how this gentleman’s treatment has progressed. Fatigue is probably my biggest issue, but the spleen enlarged continues to make itself known. I wish you ever positivity as you go forward.

@KS-yp1jl 2 месяца назад

Congratulations on being proactive and doing your research! 💪🏼👌🏼

@tgunsadventures9736 2 месяца назад

Thank you for sharing your story! To God be the glory! He works through his people and use them to spread the good news! ❤

@jeanne819 Месяц назад

Thank you for sharing your story. You will be in my prayers for a continued good life that we must take day by day in gratitude. I am 65 years old and beyond exhausted for over a year and doctor failed to refer me to anyone and told me it is my age and lyme disease that still lingers. I brought myself to a specialist for thyroid testing no conclusions and still unknown about the ongoing exhaustion. Your doctor was excellent in referring you and I will find my own specialist to check my blood. I have had several skin cancers, the most horrific one of all was having malignant melanoma all over my abdominal wall and thank God I am healed

@vikingdeathstrike 2 месяца назад

Thank you so very much for sharing your story and experience! An immediate family member of mine was recently diagnosed with myelofibrosis. They will be starting treatment tomorrow. While I'm no stranger to cancer, I cannot express just how much I needed to hear and learn more about this particular cancer. As well as what to look out for and do for my family member. Thank you Doug and God bless! I'll be keeping you in my thoughts. 🙏🏼

@mamasscreamlicious5827 2 месяца назад

You seem like such a lovely man - thank you for sharing your journey - very inspiring. May you live many more years and enjoy your life as much as possible. God Bless you.