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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What’s One Thing You Wish People Who Aren't Living With MPNs Could Understand?

What’s One Thing You Wish People Who Aren't Living With MPNs Could Understand?

posted 17 days ago
A myMPNteam Member said:

I wish others would understand that you have been given an uncertain future and that you have no idea of where that future will take you. I wish they were more understanding about what you may have to deal with the rest of your life.

posted 17 days ago
A myMPNteam Member said:

So many people think cancer has a certain “look”. The problem with that is; it’s not the cancer that gives a certain feeble look; it’s the treatments (specially chemo/radiation). Treatment for a solid tumor is so very different than a chronic blood cancer. Along with the treatment, comes side effects that are sometimes as difficult to deal with as the MPN. “We” are just good at saying “thank you and I’m ok”. Which is not likely truly honest but somehow seems polite. “We” are a rare breed and therefore people are not aware of how this “cancer” should look.🧡💛🧡 #septemberismpnawrenessmontj

posted 11 days ago
A myMPNteam Member said:

Yes with MPN diagnosis comes the uncertainty. We at this time of our age already have one or two ailments and suddenly out of the blue MPN hits you. One wonders what caused it. What did we do wrong to get it. So one more specialist is added to other specialists, like heart specialist, diabetes and so on. Interestingly all work in isolation and at times these specialist do not ingress other specialist domain. The drugs prescribed and the interference of these drugs is not known. I share my experience. I visited GI specialist and he prescribed activated charcoal for belching. Since MPN is more serious among the problems I have, I check up with my oncologist before starting any medication. My oncologist advised that activated charcoal slows down the effect of Hydroxyurea. Now it was for me to decide whether to take the medicine recommended by GI or not to take.
I am sure everyone must be experiencing this anomaly.
Alas we have to live with it hoping for the best.

posted 16 days ago
A myMPNteam Member said:

I agree with everything said here. I liked your summarization BillWallace. I wonder when will this change, when will that change. I wear blouses that cover my arms as the blood spots have started showing up more frequently. I also have a rare skin condition that also has no treatment. People probably think I have Monkeypox. People look at you and say how great you look. Even though I am upbeat most of the time, there is a little misery inside.

posted 16 days ago
A myMPNteam Member said:

Fatigue and burning hands and feet. People say I look ok so really don’t understand what all of us go through

posted 16 days ago
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