Hopefully this hasn’t been posted and wasn’t brought up in a certain webinar…
When I was diagnosed and spoke to members of medical teams particularly through messaging and with people diagnosed with blood cancer that it was clear people used initialism a lot maybe due to spelling or it simply being quicker…
I felt really stupid asking but I will happily admit… It took me about a month to figure out CN meant “clinical nurse”
Are there any initialism used either in your communication with your team and/or that you see on here that you either don’t know or didn’t know but now know and use regularly…
I know I get a bit overwhelmed but curious when people say their blood cancer as initialism which maybe why many people aren’t aware of blood cancer or that there are several types.
Oh @Rammie18 what a brilliant post, I thought I was the only one that has always struggled with initials and actually all medical terms. Everyone else seemed to know exactly what they meant.
Yes, copies of my full blood counts were even more of a challenge to me as the results were all in initial form until years ago I found an ‘idiots guide’ to medical terms and blood tests on the internet. @Rammie18 what game did you have in mind, Snap is about my limit.
The Blood Cancer UK website also helped me a lot.
I meant people either post an initialism they use a lot or ask one they aren’t sure about to share and educate others… sorry I know add the word educational to a game and it makes it sound like a snorefest… though drinking game may effect my typing…
I’ve created a spreadsheet (I know proper turning people away now) and I’ve put all the tests I usually get tested along with normal level intervals then my levels based on date… that way I can see what levels are rising or declining…
My med team only focus on my hct level but I feel the effects of my iron levels more challenging which is pretty much ignored by everyone. I’m happy to share if it’s useful for anyone or happy to create one for you fill in your levels.
Interesting post @Rammie18@Erica CML which begins with initials is full of initials which is perhaps why I am so fond of the Philadelphia chromosone which we have, as at least it has a proper name but it took me ages to master all the terms and initials in the full blood count wbc, rbc haemacrit neutrophys baso phyls etc even the initials which I can never remember which stand for the cell width ie how fat the cells are etc only to discover that these didn’t really matter at all as if you are a CMLer on a TKI (another one Tyrokinase inhibitor which sticks to out mutated cells) your full blood count fairly quickly returns to normal and is of no interest to the Haematology team who are focusing on the ABR/BCl % in the molecular tests so I started with 97% of the abrbcl or as I think of them bad cells and the objective is to get down to below 0.1% which is considered to be MMR (another one - major molecular remission). If you fall out of MMR they test for further mutations which don’t have initials but a series of quite random numbers and I was no good at maths at school and English is my second language so I feel like CML speak is a third language which I haven’t yet mastered.
Thank you @Rammie18 for introducing this very interesting subject. It sounds like you are very on top of things and I am impressed by all the knowledge you have gained in a relatively short space of time. Like you, I find it helpful to learn as much as I can about my different blood levels and what the doctors are looking for, or at, in regular blood samples. It took me ages to understand all the initials and @Ismo, I think the term that relates to how ‘fat’ the cells are is MCV which means mean cell volume. Warm wishes. Willow
