Newly diagnosed with MF

[indy22]

Hi guys , got my appointment through yesterday for the 12th of August does anyone think that this is to long to wait ? I am also due to get a scan on my spleen before my appointment I haven't received a date for this yet 🙃

[Paul_1971]

HiIt all depends on what symptoms you are experiencing. If you aren't in urgent need of medical treatment then I don't think it's a major issue, other than maybe of course your own need to understand your condition, which is entirely understandable.

Mpns are not fast developing illnesses so provided your blood counts aren't off the scale in any direction I think a month is ok. Many of us don't see our consultant ls for months at a time generally.

Hope all goes well.

Paul

[WeylandYutani in reply to Paul_1971]

Fully agree Paul

[indy22 in reply to Paul_1971]

Thank you 😊 for putting me at ease .

[Wyebird]

Forgive me for asking even though you have most probably told us. When were you first referred? If the time scale is within 6 weeks I think you have done quite well. If anxious I suggest you phone to see if there are cancellations. My spleen was scanned about a month after my initial appointment and after diagnosis. Good luck

[dancingelephant]

Hi Indy

I had to wait for months to get my spleen scan and then some more to start any treatment. I have only just been introduced in person to my consultant - after 11 months . I was unlucky in the fact it was during the pandemic - but that seems to be the excuse for everything.

If you don't hear about your scan by the beginning of August, then chase it up. As Paul says, everything in the Mpns department seems to take time, with no urgency - except for you. My worst symptom was having no-one to talk to about my MF and there being no clear prognosis! But luckily I found the forum, so have learnt so much from all the wonderful participants.

I wish you well, and let us know what eventually happens.

Bonnie

[hunter5582]

Waiting a month to see a specialist is pretty common everywhere. Not a big deal medically in the absence of a emergent medical condition. I would push to get the scan of the spleen done before the appointment as it is relevant information. If you are scheduled to see a regular hematologist rather than a MPN Specialist, not would be the time to set up that appointment. Most hematologists do not have the KSAs to provide optimal care for MPNs. It is very important to consult with a provider with the requisite expertise. Here is a list just in case. mpnforum.com/list-hem./

Please do let us know how you get on.

[Cja1956]

It all depends on your numbers and how you are feeling. When I first got diagnosed with post Et MF, it was after a number of tests had been done, including the bone marrow biopsy, ultrasound of my spleen, and lab work. When the hematologist saw how anemic I was, she immediately started me on EPO injections. So, in my opinion, you should wait until your spleen is checked out and all the tests are completed, And then you’ll have a better idea from your doctor how often she needs to see you. You don’t really have that much more time to go before your next appointment, so I’m sure you’ll be fine.

[Meatloaf9]

As others have already said, waiting for one month for your appointment should not be a problem if you are not having any acute problems or symptoms. It generally takes that long to see a specialist where I am located (US). Make sure you have all the tests you need ahead of time and do your research and compile a long list of all the questions you want answered when you see the Doc. Best to you going forward.