It's been a yr since I was told I have Blood cancer, I'm told it's Treatable but not curable, leaving me slightly bemused.
I first went to the Dr for a very swollen knee, this Happened overnight, did not sleep well, in the morning, trying to get out of bed, found I could not bend my Knee, so getting dressed as usual was very difficult things that you normally take for granted,I did nothing about this at first thinking it came on so quick, knowing I had not banged it or fallen on it,some 6 wks later I found my self, no better off, Finally making an Appointment with a GP. My knee was also very Hot, the dr surgery took blood, the Dr said it seemed to be fluid and tried to draw some of the fluid off, which was not successful, I was not told anything, about being referred, So you can imagine some 10days later I had a letter from Hospital saying I had been referred to a specialist in Haematology,this was a shock in its self.
Another 5 visits to the same ward, still not being told what was going on, I send them an Email saying unless I was told what was going on I would not be Attending any more appointments at the Hospital in which I was attending was some Distance away.
I then received a letter saying I had a Myeloproliferative. This meant nothing to me so looked it up on the net, well knock me over with a feather, blood cancer related to leukemia.
Having fought with Depression for over 20 yrs This was no walk in the park for me.
Hi , Sorry for being slow in getting back to you after my friend Gragon tagged me in to your post, but I was just going out the door. I am Mike Thehighlander and I help out in our blood cancer forums.
I have also lived with a rare blood cancer but my one is a type of Non Hodgkin's Lymphoma. I was diagnosed in 1999 and was also told that it was treatable but incurable. So I lived and worked a normal-ish life for over 14 years before I had to have some full on treatment (you can see this in my profile)............ fast forward to September 2016 I was told that I was in Remission and NED (No Evident Disease). So never think that the game is up.
Myeloproliferative Neoplasms (MPN) is indeed a rare conditions related to Leukaemia and your body is basically producing too much of a particular type of blood cell.
I was actually talking with some one at our local Heamatology Support Group a few week back and she has had MPN for many years. She was saying that her condition was now in a position that she has now been discharged from Heamatology and does not need treatment as it is so stable.
A rare type of blood cancer like MPN will have much less information and support platforms than some of the big cancers.
We have had a few folks with MPN post in the General Leukaemia Forum. Follow the link and join the group by hitting the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post.
You can also have a search using the site search tool at the top right - just put in MPN or Myeloproliferative Neoplasms and have a look at the hits.
This is a good book produced by Bloodwise on MPN.
You can also have a Google search for the charity 'MPN Voice' that is specifically for ET, PV and Myelofibrosis patients.
With regards to your problems around getting information, this can be rather normal as Haematology Clinics and Consultants can be some or the busiest areas in a hospital.
You need to get your pointy elbows into the system, call the clinic and ask for your Specialist Nurse or Consultant to at least call you then arrange a follow up appointment.
There are holes in the NHS system so make sure you have not landed in one of these holes.
Make sure you start putting your questions down on paper as this will help you get answers.
I am always looking into the General Leukaemia Forum so would be around to help as best as I can.
Hi again, drawing blood is a normal way of controlling your condition. It sounds like you are on what we call in blood cancer circles as watch and wait (W&W).... or as we often call it - watch and worry lol.
My first 14 years was W&W, yes I was getting regular skin treatments at Dermatology and I was never to see a Haematologist until things went wrong. So this could go on for some time and in some cases for a very long time.
If W&W is suggested for you, it means it is in your best interests to keep an eye on your condition and to save other treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.
Hi again, yes, the lack of information for some rare types of blood conditions can be very frustrating.
Some medical symptoms that are not recorded in the main information available may well be how your body is functioning in this 'tent' that you are living in.
I have had various 'things' that are not in the books and can not be connected to my 20 years with my Lymphoma. I have come to accept that I can not get answers for every detail, so I stick to finding answers for the 'big stones' first as these are important, the rest is like sand that can fit in where there is room, so my focus is always on the big stuff.
I am not saying that the issues you are having are not related, but from my long experience, most Haematologists who are experienced in a specific type of blood cancer/condition has most likely 'heard it all' before....... but as my Stem Cell Consultant once said....."I am always open to hear new things and look into them"
Your long term cough with the burning sensation? Yes to that leading up to Christmas last year, remember I am in remission from my condition, but my immune system is still fragile so these things come and go.
As for more information, the sites you are looking at are your main points of call..... once you go off the recognised sites then you may well be into Dr Google and all that this brings along. I have a pea sized lump on my neck that appeared after all my treatments were complete....... not good, as this was the first sign before my brick sized growth appeared. But my team checked me out and it just a small fatty lump.
The following week we had a post on the Community with the title 'I think I have Lymphoma' eventually he found out it was a fatty lump. But the interesting thing was how he had researched it using Dr Google so I gave it a go to see what it would say about my little lump.
After three clicks on top links I had aggressive Lymphoma and 6 months to live - not..... the fourth link brought up an advert for an undertakers!!!
Unfortunately we sometimes don't get all the answers we are looking for...... but nothing wrong in continuing to push the doors of the medical professionals.
OK - not very helpful I know, but I do appreciate what it is like living with a rare type of blood condition.
