PV and lung problems/findings

[love0826]

Hello dear group,

once again I am turning to you, in the hope somebody might share if they had a similar experience.

A week ago, I went to the doctors office, totally unrelated to my PV journey, to check out a persisting cough. I wasn't extremely concerned, but wanted to make sure I was on the mend after what I had perceived as a bad chest cold. A "quick" X-Ray was taken, just to be "sure", since heart and lungs sounded normal to the doctor, and also no fever or aches.

Unfortunately the report showed shadows, so immediately I was sent to do a CT-scan with contrast. And with that report I got really shocked, because now we were looking at suspicious lesions and atypical pneumonia. The advice was, to get a lung biopsy asap.

I am in a tiny Caribbean Country, so I won't get here a lung biopsy like real quick, I don't want that.

Then I started intense research, which is of course very scary, and found some interesting case studies, that lung situations , other than cancer, can be related to PV. One study stated that nobody with PV or any blood condition should even have a needle biopsy in the lung.

Has anybody had similar experiences? In essence I was told here, that the end is near and I had to hurry for the biopsy.

Thanks so much for any insights and shares.

[hunter5582]

I have not heard of PV causing lung issues other than embolisms from blood clots. One of the medications used to treat ET, hydroxyurea, can cause lung issues.

Hope you get this sorted sson.

[love0826 in reply to hunter5582]

Do you know anything about needle biopsy in PV patients? Regarding bleeding?

I am very very scared right now and cannot imagine how to cope with a path of biopsy and chemo and all of that, with little chance of even reach another year. I thought PV was already my share.

Sorry to be so emotional. Hunter, I appreciate your insight.

[MAP44 in reply to love0826]

Many MPNers have had surgeries including hip replacements and I am sure some have had babies. You just need to make everyone aware of your disease and the medical team should be able to adjust accordingly. ❤️

[hunter5582 in reply to love0826]

If you experience a higher level of thrombocytosis with your variant of PV then there might be an increased risk of bleeding. My experience is that I tended to bleed more when my PLT > 800. The issue is related to a drop in von Willebrand factors that can accompany thrombocytosis. You would know your own body best in regards to your tendency towards bleeding. There are certain tests your care team should do prior ro any surgery or procedure. In addition to a routine CBC and CMP, your care team should order prothrombin times (ptt/aptt - INR) and possible a von Willebrand panel.

If there is an increased risk in your case, your care team would be prepared to respond to your specific need for intervention. I have had 4 surgeries in the last several years, including heart and brain surgery. I learned to make sure my care team was prepared for the risk of both thrombosis and hemorrhage. Your care team will also have you discontinue the aspirin and other blood thinning meds/supplements 3 - 7 days before the procedure.

Thinking about having another kind of cancer is scary. I certainly felt that when we found the brain tumor, which thankfully was not cancerous. Suggest taking it one step at a time and finding ways that work for you to manage the fear. Believe that you can manage this situation and deal with it effectively.

All the best.

[love0826 in reply to hunter5582]

Thank you hunter.

[Ovidess]

Sending white light your way, as my qi gong teacher recommends! (you can imagine it for yourself while dealing with these heavy issues no one should have to endure--keep the deep breaths in through the nose and out the mouth, to help keep the stress at bay!) White light is the overall healing color in that tradition, but also is the specific color for the lungs. Interesting exercises using color, movement, breath to be found online if not in classes in your area...Wishing you well.

[love0826 in reply to Ovidess]

Thank you Ovidess

[Plate]

Since you fairly isolated on a small island, I would suggest you make a trip to Florida for an extensive second opinion. The biopsy could be done there also. I detect your fear in your writing and am sorry you are going through that.