How well do you feel your MPD was managed over t... - MPN Voice
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Hospital appointments well organised little delay and I always collect my prescription from the hospital.
Excellent, supportive team at my local hospital. collect all meds at my appointments. provided with form for Free prescriptions on diagnosis (March 2012) appointments with same Dr and on time! Makes it all easier to cope with and manage. My work also very supportive and understanding.
Well managed by hospital. Regular checks and blood tests. But not well managed by the government system. Unable to work due to high fatigue and not entitled to any benefit as can move my arms and legs!! This is a poorly recognised illness.
agreed
I agree with this comment. I was encouraged into early retirement due to the lack of understanding on behalf of my managers. I found it easier to leave my job after over 44 years. Much more work needs to be done to help employees in the future, get treated at least as well as other people with health issues!
I have all of my Blood tests at the Haematology Department and then see the Consultant Haematologist followed by Venusection if required. However I prefer to get all my prescriptions via my GP, this is due to other medications, etc, being required.
Every one seems to be lucky except for me I have blood tests every 3 months and am contacted by Clinic nurse who is very sympathetic but bviously does not appreciate my problems. Consequently I feel abandoned.
This is a difficult one for me because the truth is that I have a good haematologist. However!! I have recently had problems with his understudies. I recently had to fill in a form, II stated that I had a condition that was a Type cancer? This needed verification,
I asked the Haematologists understudy that I was having the examination with and she stated to me that "you do not have a type of cancer however! it can turn into a cancer." I told her I must have picked the diagnoses up incorrectly when I saw here boss and I was glad. she then told me to stay in her office and she would ask her boss. she returned and said that the doctor would fill in the form with verification. I don't know what the score is.
This type of incident is not confident building at all. I agree that Doctors have to learn but is this the sort of mistake you would expect them to make? it also leaves me pondering is my condition (PRV Jak2 Positive) a type of cancer or not! she never said she was mistaken.
Hi StanM, like you, I'm Jak2 positive PRV. I too have good haematology support. The cancer question was explained to me like this: cancers are proliferative diseases that start in one locus but have the potential to spread to other tissues through the vascular system. Those cells then proliferate in or cause the new tissue's cells to proliferate, spreading the cancer. In PRV, the red blood cells and the platelets proliferate and, by their very nature, circulate. However, they do not infect other tissues and cause secondary growths, so aren't considered a true cancer. PRV therefore seems to me to be about as close to cancer as you can get but, as a layman, I find the small distinction strangely comforting.
I am very grateful to my local hospital for all the help that they give me they answer all my question when I ask and also help explain to my family when they come up with me.
The only draw back I am getting is help with money as I was made redundant and had a part time job that was very hard going which made me bad most the time so I gave that up reluctantly. I am now having trouble getting any money from anywhere as they tell me that my husband either works to many hours or earns to much. We can only just get through on what he earns as our daughter came back to live with us with no job so no extra money from her. My pension from my job have told me I am fit enough to work but they want to try and get employment if you have this condition as trying to explain to people that you get very tired and my not be in some days is not a good prospect for new employment.
If anybody has any ideas please help
I find my GP and the nurse at my local venesection clinic very good. However I am still unsure about how much specialist knowledge my haematologists have. I too, see a different one every time and although they are very pleasant, I do sometimes have doubts about my treatment. I have never had a bone marrow biopsy (PV, Jak 2 negative) and have seen on posts that this should be done at the start to chart the progress of the disease (I don't really want one but if it is necessary, then will accept that fact). Regards Aime
Aime, I wish I had read your comment before I posted my question! Now I don't feel alone I just hope when I visit the venesection clinic I find the nurses as good as yours seem to be. I also have a super GP. I have not had a bone marrow biopsy but have had body scan which showed an enlarged spleen at point of diagnoses. Am having localised CT scan done shortly to see how things have progressed.
My red cell count seems to hover around 46/47 having come down from 59 but my platelets not bad at all. Best wishes, Linds
I feel a bit lost at the moment - was on Hydrocarbamide since I was diagnosed about 12 years ago until two years ago when I developed two awful ulcers on my right ankle (one of the side effects of Hydrocarbamide), so was promptly taken off that medication and convinced to have Phosphorus 32 (an injection which has radioactive phosphorus). It worked for a few months with my platelets gradually increasing until it was necessary
to think again, so to speak. I had noticed that I became very forgetful and felt it was a side effect of the Phosphorus treatment but my Consultant said No. In the end I was given the option of another Phosphorus injection which I resisted for a time but in the end agreed because it seemed the only available solution. This was last March and have only been on aspirin since then but the time has come when my platelets are very high again. I would like to take part in a trial - does anyone know how to apply? Cheers! Dorotea
Great service. See Hem and Onc every 28 days. Have CBC every 14 days. Am PMF and on Jakifi. Get everything in one stop. Ongoing since 11/2013.
I do wish my doctor addressed my symptoms a bit more. I know they are normal and keeping the blood levels where they belong is the most important thing. Which is being done very well. But I feel guilty complaining and therefore kind of alone with my minor issues.
Hi, it can be very difficult when medical teams, either the haematologist or the nurse specialists, almost dismiss the symptoms people are suffering with their MPN, and can cause distress. I know that a lot of haematologists and nurses do understand and acknowledge the symptoms and try and help, but there are still those who don't and this is despite the documented evidence that these symptoms are experienced by people with MPNs and that they can be very debilitating and cause a lot of stress, discomfort and have a massive impact on quality of life. Just remember that when you are reporting any symptoms to your haematologist/nurse, that you are not complaining, you are telling them how you are feeling, and these symptoms are real and do have an impact on daily life, and quality of life is important for everyone, so do tell them and ask them if they can help you in any way, if they dismiss the symptoms and tell you that they are not part of your MPN, just politely tell them that they are wrong and that there is evidence from studies carried out by leading experts that the symptoms are real, it might just work.
I can send you a graph detailing the symptoms, this graph is from data gathered by the MOSAICC study team who are looking at why people get MPNs, they collaborated with the team in the USA who also looked at symptom burden, if you would like a copy please email me at maz.cd@mpnvoice.org.uk.
It might also help you to have a buddy to talk to, a buddy is someone who has the same MPN as you, and takes the same medication, and can help and advise you, if you would like to have a buddy then please email me at buddies@mpnvoice.org.uk.
Best wishes, Maz
Platelets went down quickly on Hydrea but doctors don’t seem to take side effects of either Hydrea or ET seriously enough. Otherwise, everything is ok. Appointments on time and he takes time talking to me and answering question, not always have an answer tho, and during Covid lockdown called me up for phone consultation. This last time, a week ago, said he would call other doctors about my symptoms to see if their patients also have same ones. Go back in a month and hopefully he did and has some answers or suggestions.
