When I was diagnosed with Leukaemia I was very quickly put in contact with a social worker who was great and really useful, i've never been offered that support in the past and in hindsight could have really done with the support of a social worker from having ET from such a young age. Today I had a call from the social worker saying that he was really sorry but that his manager had told him he could no longer offer support because I had ET and not Leukemia and the NHS don't offer support for that type of blood cancer! Has anyone else come across this or even been offered the support of a social worker before?
Jen
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Jennie_Barnes
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Hi Jen.............First and foremost,ET IS NOT BLOOD CANCER! In fact,it isn't any kind of cancer.I've been reading some really upsetting entries from people that have been told/given erroneous information.I have that rare condition,ET,and have it under control with a daily regimen of a medication called hydroxyurea(hi-droxi-uray-ah).My hematologist gave me the prescription and said I would have to be on it for the rest of my life,BUT,my platelet level dropped from almost 1,000,000 to approx. where the level should be(Since I started taking it).That being 140,00 to 450,000.I'm on the higher end,but with monthly blood screenings (to monitor the platelet level) I'm "doing fine"............I was told that no-one ever dies from ET,but some have died with it.!Get a "second opinion" from your family doctor,or a certifide hematologist(blood Dr.) and request information about a medication for this condition.My med works for me,and could work for you,but check out others.IT(ET) CAN BE CONTROLLED AND/OR MANAGED! Please,for your state of mind and well being,get a professional opinion.Being from the US,I'm not quite sure what a social is or what they do.I know what my Dr. is/says/advises etc. Please get a Dr's. reccomendation.............Keep in touch and GOD bless.....
One other thing.........ET (Essential Thrombocytosis/Thrombocythemia(same condition) is one of a few conditions referred to as myloproliferative diseases,or MPD's.It is incurable,yes,BUT manageable!I was diagnosed with ET back in 2007.I was also exposed to Agent Orange when I was stationed in Viet-Nam many years ago,but that's another long part of my story...........I've been trying to learn as much about this condition as I can and it's amazing where the research has taken me!If you have some spare time ,go to your computer and Google ET/Mpd's just for starters.It's quite interesting to find out about this condition............Good luck and PLEASE let me know how you make out/k?....... Peace
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Hi, firstly, the World Health Organization reclassified E.T as a blood cancer back in 2008,it changed to myleoprolifritive neoplasam ie mpn. I have a medical exemption card because i have a blood cancer .E.T. Maybe things are different in the states,but this is how it's explained here in the U.K.
In the US it us not defined as a cancer but I believe it is with all the research I do too. No matter what it is officially called. It is a very scary disease to have. Hu is one of the first chemotherapy drugs to treat cancer 50 years ago in the states.
Hi Werickso49 thanks for your input but in the uk as said below ET and other MPD's have been re classified to cancer hence we are exempt from paying prescriptions etc. I appreciate your input but at 24 I have had ET for 11 years now, and believe me I know everything there is to know about the condition and have been on every available medication over the last 11 years. Besides your response is not answering my question, I asked about whether or not anyone had been offered the support of social worker and not whether or not ET was classed a cancer which it is in the UK.
Hi Jenny I had ET for 13 years, Had no support just got on with my life as normal as possible & took my meds attended all my appointment,it has now progressed to Myloyd fibroses intaneadite2 I am now on Agrilide & Ruxolitinib & asprin. A very worrisome time & still have no support . I am 65 & have three kids to raid 7-9-1.
Pls check out Dr Messa from the Mayo Cliinic in Scottsdale, Arizona. He has several Utubes and refers to ET as a blood cancer as does the Cancer Centers of America and M D Anderson hospital where I was treeated for ET with JAK2 mutation? No matter what you call it the symptoms and severity differ among people and for many of us Hydrea IS NOT the answer. Good luck I hope you are able to maintain you platelets and have good health.many of us are faced with other treatments and symptoms that are not as optomistic
Hi Jen, no I have never been offered anything but I have PV only at the moment. I was told on Wednesday at haematology it is a blood cancer but unlike other cancers does not spread to other parts of the body but can (only a very small percentage do) mutate to leukaemia. Not sure if is the same for ET. I was also told if my platelets continue to rise I will be put on to a mild chemotherapy drug. Perhaps Maz can advise because the definition makes a difference when applying for free prescriptions and critical illness cover. Best Wishes, take care.
Hi Jen/Jase: I don't know exactly what a social worker is or what they do.Sorry.....It's puzzling also that ET IS NOT A CANCER as defined in the US,but it is in the UK.I sorta wonder who determines how certain conditions are classified,but then again,who can adequately define "cancer"........I wonder what "cancer" has to have/display,as far as a disease/condition goes,and /or what the characteristics are needed to call a condition "cancer".Different meanings in different countries?.I'm afraid, I'm confusing myself,now.I hope you both are well,anyway and that we all get answers.Keep in touch,please............Thanks
The World Health Organization reclassified it as a cancer in 2011 so as the title states "World" there will be no different definition for USA than the UK. The WHO governs all labelling and classifications of diseases/condition. Hope this helps
Also ,has anyone looked this up or have heard of it? : JAK2 gene mutation..........It seems that(according to what I've read),that the mutation shows up in approx 50% of ET patients and approx. 70-75% of those with Polycythemia Vera(PV).The mutation ,for some reason,also are common with 3 MPDs and the "experts" here in the US don't really know why.In other words,the 3 conditions have the same mutation,but anyone with these conditions don't necessarily have the mutation.It's confusing as anything and I've tried to learn more about this JAK2 gene mutation.Anything to share with this topic?.......Thanks again.
it is my understanding that the Jak2 test is the determining factor between being a curable condition or non curable if you have Not got the Jak2 positive result then in sum but not all cases then a changing lifestyle cupped with the correct treatments can be effective in curing the condition.. with the Jak2 positive the causes is unknown. and its is in the UK a Cancer.
However even if you have the Jak2 positive result you can still have a reasonably long life.
I think I HAVE this correct please let me know if its incorrect. I am still researching my condition
yes Stan, you have it right. The younger you were diagnosed and the longer you have been diagnosed is a huge contributing factor as to whether the illness will/may progress. Having an MPN for a long period increases the chances of scarring of the bone marrow which will then cause it to produce too many white blood cells, hence MyloFibrosis or Acute Mylod Leukemia. Hope this helps, Jill
Hello there, I have not been offered any help other than medication really.
But the MPD has been changed to MPN (Myeloproliferative neoplasms) .They are a group of rare disorders of the bone marrow that cause an increase in the number of blood cells. You may also hear doctors call them MPN for short or myeloproliferative disorders (MPD).
Myelo means bone marrow and proliferative means to grow or reproduce quickly. Neoplasm means new growth. It is a term that doctors use both for cancers (malignant neoplasms) and non cancerous tumours (benign neoplasms). There is some debate about whether these conditions should be regarded as cancers or not. It is a bit of a grey area and the World Health Organisation have put them in a group of diseases where there is uncertainty about whether they are benign or malignant.
There are a number of different types of myeloproliferative disorders. They are
Chronic myeloid leukaemia (CML)
Polycythaemia vera
Essential thrombocythaemia
Myelofibrosis
The following types are rarer:
Chronic neutrophilic leukaemia – a rare type of leukaemia affecting neutrophils, a type of white blood cell which help us fight bacterial and viral infections
Chronic eosinophilic leukaemia – affects the eosinophils, a white blood cell which is involved in allergic reactions and used to fight parasites
Mastocytosis – is when you have too many mast cells which help protect us from infections in particular tissues such as the skin, lungs and bowel
There are also very rare disorders that do not fall into any of the groups above and that the World Health Organisation group together as 'MPN which is not classified'.
Just to clarify, advice from Prof Harrison is that medical experts across the world have acknowledged that ET and PV as well as MF are cancers by including them in the WHO list of haematological cancers and changing the name to myeloproliferative neoplasms.
There are grades of severity of cancers.
Clearly for most patients with ET and PV the major problem is clotting/bleeding thus not often looked after by cancer doctors. Hope this answer helps, Maz.
Hi Maz, thank you for clarifying the position with MPNs. As someone pointed out on another blog, it doesn't alter the prognosis I suppose no matter what it is called and it is important to get free prescriptions and critical illness cover pay-outs. As someone else also said (my memory is awful) they classed the cancers like football divisions which I thought was a great way to look at it. Division one contained the agressive cancers, MPNs perhaps were division six! I think it is trying to keep things in perspective but admitting the truth too if that makes sense!
Sorry Jen, that is not helping you with your question. regards Aime x
Hi Thanks for this, the clarification is most useful. Cuts across the public sector are having a significant affect on the areas covered by Social Workers, my guess would be it is a question of pot luck depending on where you live?!
Hi Jen seems your original question has gotten a tad side-tracked but it I suppose it feeds into your comment re Social / NHS not able to provide support for ET or less 'immediate' types of blood cancer. I don't see the logic to their policy but maybe I will look into it as Im now curious.
I have MF as most of you regulars will know, and I was offered support on diagnosis at my clinic and I still meet with my Psychotherapist at the clinic every 2/3 months. I find this helpful to my wellbeing as Im able to talk openly with her. She listens well and suggests ways to remain positive when Im feeling low. I would recommend anyone who has access to similar to consider giving it a go if you find things getting you down. Of course this forum has also helped. Cheers.
I love your info! I learned something and will be sharing with others.
Hi Jennie,
That totally stinks that you have had ET since 11.
I have not been offered social work help. I have been asking my doc each visit to find me a support group like AA. No such luck. Support groups, but not for us.
On FB there is a closed group for ET that is a great support for me. I would start a face to face group in Michigan if I could find anyone that has ET near me.
Also, I see an oncologist/hematologist for ET. He's awesome! He's checking me for JAK2 next month for some reason it was skipped with first two doctors. He said it just confirms primary ET and does not change treatment of my Hu.
Hi Michelle:..........I'm a newbie on this site and I must say,I've "met" some really nice people here.By the way ,I see/understand you're from Michigan?...Well,I'm from New Hampshire,just about 30 or 35 miles north of Boston.Maybe we can exchange some ET discussion,as I was diagnosed with it in 2007.I ,too,am on Hydroxyurea and have been for quite awhile.My platelet level has fallen from almost 1,000,000 to about 450,000 plus or minus.Being a Viet-Nam Vet,I've been trying to get some kind of link with ET and Agent Orange,the herbicide/defoliant/dioxin,used during the war.No luck,so far,and I even suggested to the MPD site administrator(Maz?) that perhaps a poll of some kind could be set up to see if any of the others(OR dependents of parents who were exposed) with this or similar conditions were exposed to ANY kind of material that could have triggered off this scary condition.IE: Agent Orange,Benzene and whatever else.I've read alot about this condition,and all I get for the most part is,is that it's NOT cancer/is NOT contagious/It IS incurable,but manageable("no-one has died from it,but some have died with it".......A direct quote from my hematologist).Anyway,hope to hear from you if you want/can.Take care and GOD bless.......... Wayne
Hi Jen, when I was first diagnosed in 2006 with ET I was offered no support, not until I changed hospitals, I saw a councillor who offered me support, she was very nice but more interested on talking on a sociable level, she very rarely talked about ET even! This support is very important to us people with MPN's, and should be readily available.
Hi Jennie, I am recently diagnosed with ET, and my support / care is all handled through Guy's Hospital. I have not had occasion to go to my GP since diagnosis. Whilst it has been a bit of a shock, I was worried I might have something more accute initially as I was having headaches / migraines, so at this stage I haven't felt the need to ask for more help.
Good luck Wayne on your task of trying to find a link. I am not a daughter of a Vietnam Vet so no Agent Orange contact here. I had a bad case of Mono in high school and since then my health has been poor. We live in a toxic world. I am sure that our food, water, pesticides, vaccines, them all together trigger all the horrible disease in this world that is affecting more and more people each year. I can not get over how many kids now have Autism and cancer.
Just a query re Stan's comment 2 days ago. I have PV but am Jak2 negative. I was told I still have true polycythaemia with too many red blood cells and that it is treatable but not curable and there is another gene (which they won't test for as it is too expensive and would make no difference to the treatment regime) which can contribute to true PV. Apparently only about 5% of true PV are Jak2 negative, the rest are positive or thats what I have been told.
I have ET and was diagnosed 12 years ago - probably had it for years before it was picked up when I had a routine blood test at the surgery. ET and PV are both blood cancers - that is a reality - it is a cancer that does not spread to any other part of the body and it does not kill us as long as it is kept under check with medication = otherwise, in the case of ET the amount of platelets would increase and cause a blood clot and we would no doubt finish up getting a stroke. Hydroxicarbamide is a chemotherapy drug and does a good job reducing the platelets - I was fine with it for ten years - until I developed two ulcers on my right ankle (ulcers is a side effect of Hydra), so I was promply taken off Hydra by my haematologist and remained on aspirin for a few months until a new medication was tried in the form of
an injection of Phosphorus 32, which worked very well - platelets went down to a reasonable number for more than six months (the ulcers took a whole year to disappear and were so very painful). I did not want to have another injection of phosphorus 32 so tried Anagrelide for a while, but it had a lot of side effects and was not very good at reducing the platelets - so another few months on onlly aspiring. My haematologist finally convinced me to have a
phosphorus 32 injection again, this was about a month ago - and my platelets have come down. I wish I had not had the side effect from Hydra as it had worked so well for so long, many people carry on taking it for more years than I did without any problem. Has anybody else been given phosphorus 32?
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