1st Heamotology appointment

[Staceylou841]

Hi everyone hope your all well,The last post I wrote was a year ago about my platelets rising. I finally had my first heamotology appointment last week.He said straight away that it could be E.T. I had a load of blood work done including Jak 2 and he said the results will be back in 3 months as he is going to get them to look at some other genetic mutations or something like that. If all comes back clear, he is going to book me in for a BMB. He gave me a load of blood sample bags and said on my next appointment I would need to have my bloods taken again before going in to see him. He booked it for 2nd November. I received a letter saying it's a telephone appointment. Has anyone else been diagnosed with ET over the phone? I'm wondering weather the doctor has had some of my blood results back and now he's thinking that it's going to come back negative for ET.

[Mostew]

That's a long time to wait and wonder. They must be being very thorough. Are you in UK ?

If you prefer to be seen face to face you can request hospital to change appointment.

Email consultants secretary.

Meanwhile,

if the nurses in your hospital are are as good as mine , they are always on the end of phone to offer a listening ear to any worries /frustration.

And of course , lots of folk here, to chew over anything with ....

[Staceylou841 in reply to Mostew]

Thank you for your reply. Yes I am in the UK. I did think 3 months is a long time to wait. I'm assuming no news is good news as its been over 2 weeka now. I might just contact the hopsital tomorrow to see if any results have came back.

[Mostew in reply to Staceylou841]

Never assume . I keep a note of all blood tests so I can look back and get a better picture of how I'm doing.

Helps me know I have a say in my own health plan .

[hunter5582]

The JAK2 qualitative test does not take three months to get back. It is usually available in 7 days. There are more sophisticated genetic studies that can take several weeks to get back. I have not heard of any that take three months to get back. It can take three months to get a follow up visit, however. I am afraid I do not know why your labs would not be available until the time of your next appointment. I am always notified of my lab results when they become available. I review the results later when I see the doctor.

Suggest contacting the hematology department and requesting the results as soon as they are available. As Mostew suggests, the nurses may be able to help.

Hope you get answers soon.

[Staceylou841 in reply to hunter5582]

Thanks for your reply. I did think 3 months is a long time. The consultants exact words were " your results will be back in about 2 months but if we don't rush them it could take up to 3 months but that will give them more time to look at other genetic testing". I will contact them tomorrow see if any results are back. As they say no news is good news

[hunter5582 in reply to Staceylou841]

That sounds like one of the more thorough genetic tests was ordered, likely looking at the non-driver mutations too. Those tests can take longer. I think it was about 4 weeks that last time I had one done. It can take longer if the lab is backed up.

There is certainly no harm to asking if the results are in. I generally do not bother since the results always post in the patient portal when they come in. I just look it up myself.

All the best.

[Otterfield]

Blood tests are done routinely before haematology appointments so there's no need to assume anything. I've learned that there's no point in trying to second guess the doctors.

[Bouillabaisse]

My husband had his diagnosis of ET and JAK2 over the phone - before we’d even met our haematologist! Just a set of bloods and referral from our GP with no idea what they were looking for. It took 2 weeks from bloods taken to the phone call - not 3 months.

We met the haematologist 2 weeks later to discuss treatments, and be introduced to our team

So as someone else said - don’t try to second guess what the Dr is going to say.

[Staceylou841 in reply to Bouillabaisse]

Thanks for your reply. Firstly hope your husband is doing ok. I will contact the hospital tomorrow and see if anything has came back as it will be 3 weeks Tuesday. I'm sure if anything had show up I would of got an appointment sooner. Hopefully no news is good news x

[Maurabawn]

Hi! I’m not sure what your current platelet level is but I do know that a lot can happen in a relatively short period with illness. I have also learned that we have to be assertive at times to get sorted! My bloods came back negative and required more samples to go to a specialist . These got lost and I speedily got more taken which due to the Covid backlog were not ready for my Consultation. I was offered a phone consultation and I refused, insisting on face to face and another full blood count to know my current status as I was feeling so ill. They complied, I received an apology and a BMB 3 days later. This confirmed my ET- MPL driver and treatment commenced. My consultant in all fairness was trying every route to confirm my diagnosis avoiding a BMB and my follow up since has been outstanding.

I wish you all the best as not knowing what is going on with health is very challenging.

[Staceylou841 in reply to Maurabawn]

Thank you for your reply. Hope your doing well. That's what it is the not knowing and I think because it's taken 2/3 years of constant blood tests to finally be referred to a heamotologist and then saying its going to take 3 months it just feels long. I am going to contact them tomorrow to see if any results have came back as its been nearly 3 weeks. As I've said to others I see it as no news is good news 😊

[Ayla13]

my blood results were lost but it was during height of Covid august to nov 2020 so she finally called me by phone and made a bmb appointment in early January 2021. Then I got results in 2 weeks stating CALR1 mutation.