Like to know more. Just told I have Triple Negative MPN.

@reneemichelle

I just learned I am triple negative likely ET. I am scheduled for a bone marrow biopsy next week for confirmation. Or it could be mylofibrosis. My platelets are 965 and I have anaphylaxis response to aspirin so I am anxious about how blood thinning will be treated. I’m not sure why but my Dr suggested I might need a bone marrow transplant. That freaked me out a bit. I am 63 female.

@mmkennedy

mm -- you are in a really tough spot right now. Of course you feel baffled and scared.

Please know that many oncologists use bone marrow biopsies to confirm diagnosis. That one's been ordered for you doesn't have sinister connotations.

The day my ET was diagnosed, I too was warned a bone marrow transplant might be needed.

Maybe oncologists say this so that we will take our diagnosis seriously, and understand the importance of doing whatever we can to support the health of our bone marrow?

I get the scare tactic, but a message of hope would also be welcome!

I'll bet there will be a good alternative to taking aspirin.

Another med that may be mentioned to you is hydroxyurea (HU), which helps our bone marrow by tamping down the manic overproduction of platelets that is ET.

HU has greatly restored the quality of my life.

You can enter TPN in the search box at the top of this page to see other discussions on TPN ET.

You can learn a lot about HU in the same way.

You are NOT alone, mm.

@mmkennedy
You are not alone. I was diagnosed at 48yo with ET. I am now 71 yo and doing well. I now know I am also a triple negative (we did not know about these things back in 2002). I have had 2 bone marrow biopsies. The biopsies were not as awful as my fears predicted. I was in good hands or lucky, I am not sure but I did very well and did not suffer at all. I am on hydrea and baby aspirin. I think they can find a blood thinner(aspirin alternative) for you since you cannot take aspirin. I have a local oncologist that specializes in blood cancers and I have seen 3 different MPN specialists at Mayo in Rochester and Arizona as consults. Fell free to ask me anything. Sending love and hope. Lynne

Bingo, Meg!

For me at least, HU brought relief from those horrible headaches, and gave me back most of my energy. While it took two years for HU to bring my platelet count down from the 700s to the 300s, I began feeling stronger within just months.

If you decide to treat your ET with HU, may it be just as helpful to you!

@janemc

That is great news! My headaches have been disabling.

@mmkennedy I would like to talk about headaches associated with ET. Getting the platelets down is important. The headaches are usually caused by microvascular ischemia. That means tiny vessels are not getting the blood they need to bring oxygen to the brain. So, taking baby aspirin makes the platelets more slippery and less sticky so the microvascular blood vessels can deliver blood, oxygen and nutrients to the brain. It is a 2 step process, hydrea (or other therapy) to reduce the number of platelets and aspirin to make the platelets that are there less sticky. People with ET have too many platelets and these platelets are not normal platelets- they behave differently. We need to keep our blood flowing normally to all parts of our body not just our brains. We need the blood to flow to all of the micro vessels such as our eyes, kidneys, bowel area, and lungs. Big clots cause tissue death, little clots can cause pain or decreased function. It is a delicate balancing act we have to perform. Good luck everyone.