"It's not my day, it's His day!". I love that, and will remember and use that daily! Thank you for sharing that! My prayers for your complete recovery! 🕊️🙏❤️🕯️
Happy for you that you no longer have cancer, but so sorry you've had to suffer severe side effects. You've been through so much! Heartfelt wishes for your continued improvement.
Stacy.. I found your story and so glad that I did. I am also a patient of Myelofibrosis and I too am a CalR mutation. I have been on Jakafi for the past 3 years but three weeks ago I took my last one. Not that the doctors want me off of it but because of the cost and lack of grant money. I am starting to feel the effects of being off of the Jakafi, I have a doctors appt this coming Friday and anxious to see my blood count results. Like you my platelets were over a million when I first was diagnosed. I also have leg pain and problem with my feet. I am really having trouble sleeping because of the pain throughout my body.. Anyway your story and seeing how brave and your cheerful disposition encourages me to carry on and live life...Thank you
@Janet, thank you for sharing a bit of your own story. Would you be interested in sharing more? If so, please reach out at stephanie@thepatientstory.com
My results weren’t as bad as I thought they would be. My hemoglobin is 9 and my platelets were 700. I am back on Jakafi again. Two weeks off and I felt the difference. I feel so much better now that I am back on Jakafi.
I sooo identify when you say how difficult it is to ……..accept rides, etc! I have Waldenstrom Macroglobuleinemia. I ve never asked anyone of anything so this has been humbling….to say the least.I’ll watch more, as your presentation is clear, meaningful, and touches me. Thank you! ………….Pray 4all2Be@Peace………"
I know what you mean, I feels the same way. I live by myself and I have the same fears like yours. I m a 2 times cancer free. Last cancer is my lung stage 3, and it’s been over 10 years of cancer free. But still I can’t helped to fear its will come back anytime bc my age, but I try to keep myself busy and not to worry about it.👍🙏.
Hi Stacey well done .. I have mylofibroasis and I’m really struggling .. I have bone marrow transplant in 4 days your symptoms are very much the same as I have .. very breathless and extremely tired x
I give you so much credit for being so strong and brave. I wouldn't go with what you went through and are still going through. This scs cancerous lump on my neck is scheduled to be surgically removed in a couple of weeks followed by radiation and chemo. I still I don't know if I'll go through with it.
Want to share your story 👉 www.thepatientstory.com/share-your-story/?UA-cam&
"It's not my day, it's His day!". I love that, and will remember and use that daily! Thank you for sharing that! My prayers for your complete recovery! 🕊️🙏❤️🕯️
Happy for you that you no longer have cancer, but so sorry you've had to suffer severe side effects. You've been through so much! Heartfelt wishes for your continued improvement.
Thank you for sharing with us! Wishing you strength on each and every one of his days!!
Stacy.. I found your story and so glad that I did. I am also a patient of Myelofibrosis and I too am a CalR mutation. I have been on Jakafi for the past 3 years but three weeks ago I took my last one. Not that the doctors want me off of it but because of the cost and lack of grant money. I am starting to feel the effects of being off of the Jakafi, I have a doctors appt this coming Friday and anxious to see my blood count results. Like you my platelets were over a million when I first was diagnosed. I also have leg pain and problem with my feet. I am really having trouble sleeping because of the pain throughout my body..
Anyway your story and seeing how brave and your cheerful disposition encourages me to carry on and live life...Thank you
@Janet, thank you for sharing a bit of your own story. Would you be interested in sharing more? If so, please reach out at stephanie@thepatientstory.com
How were your blood count results?
My results weren’t as bad as I thought they would be. My hemoglobin is 9 and my platelets were 700. I am back on Jakafi again. Two weeks off and I felt the difference. I feel so much better now that I am back on Jakafi.
@janetrogers8457 that's great!
I sooo identify when you say how difficult it is to ……..accept rides, etc! I have Waldenstrom Macroglobuleinemia. I ve never asked anyone of anything so this has been humbling….to say the least.I’ll watch more, as your presentation is clear, meaningful, and touches me. Thank you! ………….Pray 4all2Be@Peace………"
Thank you for sharing your story. I was diagnosed with post-ET myelofibrosis two months ago. Best wishes to you.
I know what you mean, I feels the same way. I live by myself and I have the same fears like yours. I m a 2 times cancer free. Last cancer is my lung stage 3, and it’s been over 10 years of cancer free. But still I can’t helped to fear its will come back anytime bc my age, but I try to keep myself busy and not to worry about it.👍🙏.
🙏 ❤️ 🙏
Hi Stacey well done .. I have mylofibroasis and I’m really struggling .. I have bone marrow transplant in 4 days your symptoms are very much the same as I have .. very breathless and extremely tired x
I give you so much credit for being so strong and brave. I wouldn't go with what you went through and are still going through. This scs cancerous lump on my neck is scheduled to be surgically removed in a couple of weeks followed by radiation and chemo. I still I don't know if I'll go through with it.
Hi you have described your condition very well I have gone through the same thing and it good here that where very rare people keep safe
BRAVA!