MPN Voice
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Specialist - 1st visit

Hi Everyone,

You were all so kind with support when I had posted that I was anxious about my first visit to the specialist, and I wanted to update you on how the appointment went.

The Dr was terrific, but not nearly as informative as I had hoped. She confirmed that I have ET & early MF, but the issue is I am what they call a triple negative for the commonly found gene mutations of Jak2, CALR, MPL. Because of this she wanted to reserve her opinions until further test results are in. She ordered a full genetic screening.

This is where things get interesting. She held back opinion, but the office emailed me a copy of her letter to my referring hematologist. I didn’t expect much and was taken aback to see that if I don’t have some incredibly random gene mutation the next conclusion is that I may have MF Leukemia which in turn caused the ET. I’m staying calm , well as calm as one can be when waiting a month for results. This was definitely a sucker punch. Fortunately, I’m seeing my hematologist tomorrow so my hope is that she will tell me that I either misinterpreted or that leukemia is a long shot. Granted I’m exhausted much of the time, but I just don’t feel that sick. I’ll let you know what I’m told tomorrow after the appointment.

If you could send positive vibes I’d really appreciate it. I was just getting adjusted to my current diagnosis. Don’t think I could handle the alternative quite as well.

This is one time ignorance would be bliss until all results are in. Just wish they hadn’t me copied on that letter.

As always thanks for listening

Christina

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Oh Christina I'm sure that knocked the wind right out of your sails reading that!!! I truly hope that the hematologist can put your mind at rest tomorrow and that it's not leukaemia. I think I recall reading posts on here before that some people tested negative for all the genes . I'm sure there will be a thread on here somewhere.

Sending you lots of good vibes and keeping everything crossed you get good news tomorrow .

Best wishes

Mandy x

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Hey Mandy,

I’ll take all the good vibes you can spare! I’ll post this evening what my hematologist tells me. Just hard to even wrap my mind around the alternative possible diagnosis. Specialist letter even stated that she refrained discussing the possibility of bone marrow transplant. I think that line really made me realize that she sees leukemia as a real possibility. 😑

Fingers crossed 🤞🏻

Hope you’re feeling well

Xoxo

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Oh your appointments today. I keep forgetting the time difference where you are. Good luck x Thinking about you and everything's crossed.

Mandy x

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Hi Christina,

so sorry you've had this news to contend with. Hopefully your haematology appointment today will be able to alleviate your understandable anxiety.

There are some people on this forum who have an MPN and are 'triple negative' for all three mutations. I have also read thatit is likely that there are other gene mutations that haven't been identified yet.

I know it's easier said than done - but try and remain calm until all the tests are complete. It sounds like you're getting excellent treatment, so at least that is a positive.

Thoughts are with you

Mary x

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Hi Mary, I so appreciate the support. Actually a few members that are triple negative have reached out a doing well.

The referring hematologist helped to explain what the specialist said.

I’ll Right a post sharing that information

Christina 🙂

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Christina. How worrying for you. All I can offer. Is my prayers and all the comfort you need. Hope to hear what happens. Please remember we are all here for you so keep in touch. Mary

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Thanks so much Mary! I’ll be writing a post relaying what the Dr explained to me regarding my triple negative results.

Yours and everyone’s support means a lot.

Christina

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Hi Cristina as you say why send you a copy letter without any discussion! Anyway I am ET triple negative - which as my MPN specialist says merely means our cause is not yet known and invariably its a further mutation yet to be discovered - the others have only been found in recent years and since i was originally diagnosed 12 years ago. So dont worry there are plenty of us triple negs who are doing fine! All the best

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I totally agree with you. Thought I’m happy to have the specialist letter for my records, in this case it was concerning that what she wrote had not been discussed. I do understand her holding back as to not alarm me regarding what my triple negative results mean until she had further results in.

I will write a post relaying what was explained to me by the referring hematologist.

So glad you reached out

Christina

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Sending e-hugs and positive vibes Cristina!

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HI Cristina,

I am also ET triple neg. Diagnosed 3 years ago via bone marrow biopsy. I feel fine and getting on with life. Hope things go OK for the rest of your tests and you get some answers to at least know what you are dealing with.

Sue

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Count me in as another triple negative. Actually I am negative for a whole panel of mutations. The hematologists I have seen both think I have ET though biopsy could not confirm it. The biopsy noted some mild fibrosis but otherwise didn't inform us of much.

I would ask your hematologist for clarification but I think it only says leukemia because MPNs are classified as forms of chronic leukemia. That's how the specialist I saw explained it to me - that ET is a chronic leukemia.

Not having a firm diagnosis or known mutation makes me feel a little more anxious but as time goes on and so far (knocking on wood) my counts are stable I am starting to relax and hope for a benign disease process.

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Just to clarify - MPNs are chronic diseases that can turn into leukaemia. Which is very rare. Maz

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