The Journey of my Wife recently diagnosed with Essential Thrombocythaemia
1 minute read time.
FormerMember
I felt initially frustrated that my wife was already noted to have high level of platelets since 2014 which was at 900 but her GP from previous surgery never even cared to look into her case or referred her to Haematologist.
Now we’re in a different locality and her high level of platelets were identified from a routine blood check. This was last December 2017.
It’s like a whirlwind experience without any emotional/ psychological support since.
Just to give you an update regarding my wife’s recent diagnosis of ET and ongoing treatment...We’ve just been to her Haematologist yesterday and so far it’s been satisfactory outcome for her Hydroxycarbamide. From platelet levels of 2331 in the last 4 weeks, it had gone down to
1471. It still remains in a high level but it’s lesser than before. Her dosage have been slightly increased from 6grams to 8grams of Hydroxycarbamide weekly. All her other blood cells are within normal range. Here’s me hoping that my wife remains to tolerate minimal ill-effects of this cytoreductive drug along with a daily Aspirin 75mgs/ daily dose. She remains to function fully as a staff nurse. This post is also to encourage positivity for newly diagnosed ET like my wife, like us who are initially petrified to start on Hydroxycarbamide. To GOD be the glory!
Hi aignish_bloodwarrior and welcome to the Online Community, any chance you are from Scotland and more specifically Inverness?
ET is one of these Blood Cancers that fall between the cracks of our forums. I have lived with a rare type of Non Hodgkin's Lymphoma for over 19 years now and have found the Online Community very supportive. We have a number of support forums for blood cancers that even although there is not a specific ET forum you will find lots of folks living well with blood cancers.
Try going to the Groups Tab, then cancer types and have look through the forums and dip into the blood cancer groups like NHL (where I hang out the most) HL, NHL and we do have the CCL SLL HCL group along with all our support groups through the Groups and Cancer Experiences tab.
I will have a look through the forum and see if I can find other hits on ET.
Hi, yep we’re from here in Inverness. Still feels at a loss...it was a total shock with the diagnosis and I was glad I was with my wife when the Haematologist just broke out the news saying about ‘Blood Cancer’. I felt like having a brain-freeze at the time.
We’re about to buy our new house but she was refused a Life Insurance...devastated abiut this as she remains fit and healthy as before if not with her platelets sky high level...
Hi again aignish_bloodwarrior I am tagging a few folks who have come up in my search of the site with ET hits so lets see if some of them are still around and will come back to you nordic Eco1963 GraceJ
You can also post any questions in our Ask an Expert section at the top - ook for Caroline our Macmillan Nurse with a Leukaemia Heamatology background.
You may also find our AML Forum (link) another good place to meet folks on the blood cancer journey.
It's a small world, I know the Raigmore Heamatology and Ward 4a staff very well as I have been a regular for years but just this year I have eventually moved onto 6 monthly appointments.
My last Life Insurance run outlast year and I can not get anything :( it's hard enough to get insurance to go on holiday :(
