?frustrated! Triple negative mpl

[PeachJ]

It’s been a year of blood tests and I am done for now. My hematologist said I have a triple negative MPL and I am to take aspirin and get quarterly monitoring. That’s about all I could get out of the conversation. It was over the phone and she has an accent and voice tone that is difficult for me to follow, but she is so nice I hate asking what she was saying. I am here asking for help as I am frustrated with the general situation and lacking answers. What am I supposed to expect to happen? I really don’t know if I’m at risk of dying, advancing to leukemia, supposed to not worry, or just not worry about it. My next consultation is with my primary physician. I do not want to bombard him with questions as he is the one who referred me to the oncology center. Does anyone have any insight on the triple negative mpl?

[hunter5582]

Sounds like something got lost in the translation. The term would be a triple-negative MPN. It would be more specifically either ET, PV, or MF. MPL is one of the three known driver mutations for MPNs, that also include JAK2 and CALR. You will need to educate yourself about the basics to really begin to understand what you are dealing with. There are some resources below you may find helpful.

It is very important to have a MPN Specialist on your care team. Regular hematologists do not have the KSAs to provide optimal care for these rare disorders, This is especially true with triple-negative MPNs which are especially rare. Here is a list of MPN expert docs.

mpnforum.com/list-hem./

Evaluating and managing "Triple Negative" MPN - Dr Ruben Mesa

youtube.com/watch?v=Oc8ujrS...(Not working as expected?)

MPN Molecular Biology - Jyoti Nangalia MRCP PhD

youtube.com/watch?v=zHwTIJb...(Not working as expected?)

Myeloproliferative Neoplasms - Dr. Jerry Spivak

legeforeningen.no/contentas...

Good information at these sites

voicesofmpn.com/

mpnadvocacy.com/

patientpower.info/myeloprol...

FYI - I was diagnosed with a MPN about 30 years ago. It was ET. Progressed to PV about 7 years ago. Still alive and kicking at age 65! Have had and continue to have a good life. Please plan to do the same. Most MPNs can be managed for a very long time. Most do not progress into leukemia. Best approach is to plan to live with and manage the MPN, not to die from it.

Hope that helps.

[PeachJ in reply to hunter5582]

Thank you for the information, I am doing some more research now. I did not have much direction.

[cmc_ufl]

I myself am still in the diagnosis phase for possible triple-negative ET. Platelets 430-455 for 10 years. Can be frustrating, but keep a positive attitude.

Just out of curiosity, how high are your platelets and how long have they been elevated? Interested to know what made your hematologist was so eager to diagnose you with triple-negative MPN.

[PeachJ in reply to cmc_ufl]

I will let you know my platelet count soon. I need to pull my lab records.

[PeachJ in reply to cmc_ufl]

Platelet count 720 for somewhere between 1-2 years

[Wyebird]

Hi, you must be in a turmoil. Hunter to the rescue. He’s really knowledgeable. Good luck!

[PeachJ]

So to update. I went to Mayo in Rochester, MN last Thursday. Unbelievable! My first appointment was at 8:30 am. The Dr. Was awesome. I was then scheduled for urine/blood analysis and then a bone marrow biopsy. I then gave 9 vials of blood and some urine. By the time I walked from the labs to my biopsy the test results were coming in on the Mayo app. 9 samples done! Long story short I was out of my biopsy and back at the hotel by 1:30pm. Mayo is such a well oiled machine. Every appointment I showed up to early and never waited more than 10 min to be seen. Even the biopsy was done 45min early. All results are in and I have a follow appointment in a few weeks and I am actually happy to be going back. Lucky for me it’s only a 3.5hr drive. What I had done at Mayo in half a day took a year at the other hospital. Oh yeah! And the best part is I have a new hope for my life. They were very reassuring and took as much time as I needed to explain everything and even dive into any other issues I had. I know this sounds like a review...well it is. I highly recommend anyone close to Mayo to seriously consider treatment there.

[hunter5582 in reply to PeachJ]

That is outstanding! This is how medical care should be. it makes all the difference in the world to see a MPN specialist in a quality organization.

It will be very interesting to hear what you learn as all the results come in. Please do let us know how you get on.

[cmc_ufl in reply to PeachJ]

Please let us know how the results turn out!