as she is not on the internet…
her questions are
What level do platelets need to be before chemo drug ( hydroxycarbamide) should be started?
Does this drug need to be taken for rest of life?
Is this condition hereditary and is it connected to amyloidosis in any way…her sister died of this at age 52?
are there any live zoom support groups where patients are live to talk out their issues
Hi, welcome both of you to our community forum as you can see the support line details are above if you need them, they might be especially useful if you do not have internet access.
I will make sure @Alice_BloodCancerUK sees your questions because I am not good at medical issues.
However what I will say is that it seems that medical teams do not just take one test result into consideration, but all tests done, symptoms and medical histories etc before considering a way forward.
I also believe there is might conjecture whether conditions are hereditary or not, as far as I know there is nobody else with any blood cancer in my family whereas there definitely appears to be a history in other families.
I was diagnosed with another blood cancer in 2003 at the age of 53yrs.
Take care both of you and I hope to hear more about your family.
Can anyone else on here help?
Hi @spudair, thank you for reaching out to us on behalf of your sister inlaw. We can only imagine what she must be going through being diagnosed with Polycythemia Vera (PV) and how she must be feeling. We are always here for her if she would like to speak to our support service support team. In answer to your questions Brian, we would encourage her to talk to the treating team around her blood results and starting treatment. There will be NICE guidance on the treatment of PV, but there may be other factors which need to be considered too, which they will be in a better position to answer tailored to her individual circumstances. To our knowledge there isn’t a link between PV and amyloidosis. We’re not aware of any live zoom support groups specifically to talk on issues around jak2, we would recommend speaking to her treatment with any questions or concerns she has. Does your sister in law have an allocated clinical nurse specialist (CNS)? They should be able to answer her questions and concerns on PV. You can also see if they are aware of any online support groups for PV patients run by the hospital that they can link you in with.
If we can be of any further support, our Support Services Team are always here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer.
thanks for response
its the ET form she has not PV
her consultant ery brief sho she just wants to sound off elsehwere for 2nd opinions
i go on a zoom group with amyloid patients that the patients run…no medical input
its a great supoport for the group to talk and advise each other from home
It’s me again @spudair, it might be worth your sister in law writing down all her questions, fears, symptoms, medical conditions, practicalities etc.
I have learnt to ask for clarification if I do not understand something and also to ask that follow up question. I also need to take notes.
Take care both of you and I expect you are both in shock, and all this has come about in Covid times as well.
i will speak to her on telephone on Saturday and see what she wants to do next
thanks for response
Hi @spudair, apologies, got confused by your post title. In answer to your questions Brian, the same response applies, we would encourage her to talk to the treating team around her blood results and starting treatment. There will be NICE guidance on the treatment of ET, but there may be other factors which need to be considered too, which they will be in a better position to answer tailored to her individual circumstances. To our knowledge there isn’t a link between ET and amyloidosis. If there is anything more we can help and support you with please do reach out to us.
I have ET. I am on pegylated interferon, I started this last September as my platelets were about 1300-1400 range. High I know but I’m 51 and very fit participating in Ironman long distance endurance.
I was diagnosed about 4 years ago now, and as far as I’ve been told it was just bad luck in my jak2 mutated. I didn’t have it before.
I was worried sick when I was first diagnosed with children ranging from 12 -24. But now it’s all managed I feel ok living with it.
I wish your sister in law all the best and in my case I find the care professionals are very attentive, listen, discuss options and generally feel I’m in great hands. Hopefully she will feel the same, have a list of questions and hopefully any fears will be answered.
As others have said, there is a whole range of factors influencing treatment, including particularly age, but also other medical conditions and the precise data from full blood count. We all seem to differ in our needs and responses to treatment; my ET journey has been very comfortable, with few side effects and a normal sort of life (for an oldie!). Others have it harder, but the key thing to bear in mind is that if treated, we have pretty much a normal life expectancy…
Again, as Erica has said, it’s important to sort out questions for your specialist; don’t be afraid to ask and certainly to ask again if you don’t understand. Most consultants (though sadly not all) respond well to patients who are taking the trouble to understand their condition. As do the specialist nurse practitioners, who may be the continuing point of contact.