MPN Voice
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Sitting here in the waiting room..

I'm waiting for my appointment post diagnosis with the hematologist/oncologist and am looking at everyone else here wondering if any of them have an MPN. No one looks panicked or uncomfortable yet here I am ready to crawl out of my skin. It doesn't help that it's at a cancer center and the TV keeps showing infomercials about various cancers..cancer cancer cancer! Do they have to keep reminding you every 5 minutes? I need to get this anxiety under control....or maybe I will just get used to it?

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Hello Jennifer, I am not surprised you are feeling anxious sitting in the waiting room, I do hope you are ok. Maz x

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Bloodwork is fine except the platelets in the 600s. My hematologist told me I don't need any other treatment than aspirin and only need to see him every 6 months. He said I shouldn't be having many symptoms with my current counts and to focus on getting back to living. I guess that means he's not too worried about me but I also feel frustrated because there's nothing to be done..nothing I can control.

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Fine is a good word Jennifer1974 and good you got 6 months .

I know we can't do anything about the disease itself but I try to eat healthily ( most of the time ! ) keep hydrated and as active as possible which does give you a certain amount of control .

I hope you feel better soon xx

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He seemed to think most of my symptoms were due to anxiety . I just don't buy it.

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Hi Jennifer, I have suffered from bouts of anxiety in the past. It is indeed a terrible affliction and I for one can say it definitely causes physical symptoms. It is not for me to say your physical symptoms are caused from anxiety however, I would not discount it completeley. I'm sure the anxiety will disapate as you come to terms with your diagnosis. I wish you well.

Mary xx

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I guess I have to quit second guessing every little ache and pain. I was put on Xanax ( only take it at night) but want to stop. I wish the WHO hadn't reclassified it as at cancer in 2008...blood disorder sounds less sinister.

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Your symptoms 'could' be down to anxiety, however to state that there is a correlation between counts and symptoms is not correct either, you could just do a poll on this forum and you will find some people with high counts who are fairly symptom free and some on low counts that have fatigue, itching etc.

It is the same with PV sufferers, 'some' members of the medical proffesion believe controlled red blood cells via whatever means = no symptoms, its just not true.

The other thing is even if your symptoms are a result of anxiety, they are still symptoms arising as a result of your condition and should not be dismissed.

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Right! I think they must train the Drs to tell you it's all in your head to somehow make us feel less worried? I don't want to be on Xanax but last night I didn't take it and was awake for 2 hr unable to get back to sleep. Thanks for your reply☺

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I dont think the medical profession really know why the conditions cause the symptoms they do, yes they can answer what the dangers of having too many platelets, too many red bloo cells, not enough etc...but everything else no one knows.

In GB we still have many doctors and consultants who dont recognise it as a cancer and this affects patients getting free prescriptions etc, it is frustrating that there are so many inconsistencies across the board.

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You get free prescriptions in GB if you have cancer? Wow! I am not debating cancer experts but I thought cancer, by definition had to have the ability to metastasize to other tissues and cancer cells don't really "die" like normal cells. It seems the reason this is considered cancer is because we have acquired a mutation that tells our stem cells to keep making blood cells even when we have enough. But does that mean ALL of our stem cells are mutated? And the resulting blood cells do die off..its almost like it's a precancerous condition. My hematologist told me he doesn't "think" of this a cancer in the traditional sense but I think he was just trying to make me feel better

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Yes we do, well you have to be taking medication on prescription as a result, and then it covers any other prescriptions you might have too, which is good for me as i am asthmatic too.

The Macmillan website in the Uk did describe the conditions as pre-cancerous but i think they have, or are due to change that.

And yes i wouldnt like to get into what the differences are between this and other cancers, i know i did read up on it but unless your a trained medical professional its sometimes hard to understand. By definition a neoplasm is a cancer, which is an uncontrolled cell growth, which is what we have.

Unlike a lot of other cancers it does not spread to other organs though.

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Hi Jennifer

Aww I remember that feeling it's awful but I promise you that you do get used to it it takes a while for the anxiety to go but it does .

I'm sure lots of us have felt the same and we will support you .

I hope your appointment went ok

Helen x

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Oh it's a horrible feeling but you are not alone. No matter how many times you do it, it doesn't get easier for me anyway but knowing as much as you can about your illness does help. Kindest regards Aime xx😺😺

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I always look at other people in the waiting room and wonder if any have ET like me. Being British of course we don't say anything - just comment on the weather!!

Of course at the hospital you always see people who are a lot worse off than yourself so it does put things in perspective - a bit. Still get anxious - of course!

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Yes I go to the cancer/leukemia center to see the hematologist/oncologist and there are very sick people there getting their chemo. I guess I wouldn't ask anyone but it must be normal to want to connect with others with this affliction. Glad I found this forum!

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I know exactly how you feel. My appointment letter just told me to attend the Macmillan Cancer Centre at university college hospital. My blood pressure was taken and, it was over 200. I was on my own. No one would come due to work and other commitments. I'm on antidepressants for depression, insomnia and panic attacks. You are correct. Adverts all day from cancer charities requesting money.

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