PV and Hardening if the arteries !!!!!

Hi everyone... now CT scan shows atherosclerotic disease distal aorta with mild to moderate stenosis and varices upper left quadrant (I have an enlarged spleen too). So this on top of PV (2 yrs diagnosed). So I feel like I dont have much of a chance ... been fairly active (a non-stop kind of person .. on and off exercise) always kept a weight of 120-123 lbs except for last 3 years .. gained 18 lbs. So I wonder if curses are real!! Very scary... anxiety and anger way up!!!!

[Mazcd Partner MPNVoice]

Hello Keiks, sorry to hear this, I am not surprised you are feeling anxious and angry, what has the doctor advised re treatment for this? Best wishes, Maz

[Hidden in reply to Mazcd]

Hi amazed.... I have a phone appointment with a vascular specialist on sept 11 so we’ll see what he has to say but I am also just about to start hydroxyurea for the PV this week which I read will also help. 🤷🏻‍♀️. How are you doing?? Love your hair BTW!!

[Mazcd Partner MPNVoice in reply to Hidden]

Hi Keiks, well I hope you get some answers on the 11 Sep. Good luck with the Hydroxyurea, make sure you stay well hydrated and take care in the sun, you need to cover up and wear sun block. I am doing well thank you. Best wishes, Maz x

[hunter5582]

Sorry to hear that the issues are piling on.

Knowledge is power. Here is some information you might find of interest.

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/183...

ashpublications.org/blood/a...

(The last article is super-technical)

The gist of all that is that what you are experiencing is a known issue for people with MPNs. Some of the dynamics of why it occurs is understood and more is being learned.

I do really believe that the systemic inflammation we experience with MPNs is just as much a problem as the impact on blood cell numbers and function. There is a lot of research going on in this area. Hopefully intervention option will improve. There are some things that help that we can do now. I have had success in reducing inflammation/symptoms with curcumin, diet, weight loss, exercise, and the practice of Qigong. The latter also helps with mindfulness and stress management.

Please do hang in there and do what you can to make things better. Taking good care of ourselves is important. There are things we can't control, so we have to control what we can. No matter what, know that you are not alone with this.

All the best to you.

[Hidden in reply to hunter5582]

Hunter5582... thanks sooo much for all this great info. I do take a turmeric supplement 3 times a week.... I’m also on daily low dose aspirin so have to be careful with the turmeric. I am trying to gain as much knowledge as I can about PV and associated problems and it seems there are always new things popping up that not even the hematologists really know much about. I will definitely check out those links. How are you holding up ??!!!

[hunter5582 in reply to Hidden]

I am doing OK. Still waiting for the Neurologist to call me back about a plan for the palinopsia. She recommended Topamax, but I have significant concerns about the side effects and the drug interactions. We will see what we see.

I am going to have the JAK2 Allele Burden rechecked along with a Myeloid Panel at my next lab draw. Looking to see if there is an objective sign of PV progression. Still need to do a detailed review, but in looking over some of my old CBCs, the numbers do not look as different as I thought, which is a good thing.

I am not stressing nor in a hurry to decide my next steps. Will take my time and carefully consider my options. Want to base the decision on data, not emotion. My priority is to maintain my quality of life. I am very clear that sometimes the cure is worse than the disease, which is not a road I will travel. Been there and done that.

FYI - I take 1100mg CurcuWin/day. When I was on aspirin I took 775mg/day. The aspirin was really the problem and the excessive bleeding/bruising stopped as soon as I stopped the aspirin. When I say excessive, it was annoying - not dangerous. You are wise to be aware of the interactions. FYI2 - Fish oil is the one your really have to watch when on aspirin. It is contraindicated as it really does potentiate the aspirin. My experience is that the turmeric has a much milder effect. We are each different though, so careful is good.

All the best.

[Hidden in reply to hunter5582]

Thanks hunter5582.... good luck with your neurologist!! I’m sure you’ll have your answer to Topamax well figured out. Didn’t know fish oil could be a problem with aspirin. I take omega 3 which I think is different ? Also, did your hematologist agree with stopping aspirin and replacing with curcumin?... or did you go ahead with that decision on your own????? I’m asking because I almost made that decision without discussing with hematologist first but decided against it as I just don’t want to mess with a disease that can potentially kill.

[hunter5582 in reply to Hidden]

It was the MPN Specialist / hematologist who recommended I discontinue the aspirin. In the absence of any thrombotic events and being over age 60, my risk of hemorrhage was greater than thrombosis. "He stated "You really do not want to get a brain bleed." Two weeks later, I was diagnosed with a hemorrhagic brain tumor surrounded by edema. I had bled in my brain. While most often we think about thrombotic strokes, strokes can also be hemorrhagic. Some people really do need to take a blood thinner, but not all. Like ALL meds and supplements, aspirin has both benefits and risks. It is not an entirely benign substance. mayoclinic.org/diseases-con.... Read the whole section for more info.

Aspirin + omega 3

drugs.com/drug-interactions....

That is not to say you should not take aspirin. You have to look at all meds on a case-by-case basis. FYI - a big part of the reason I go to see an Integrative Medicine doc was to find a doc who knew about the interactions between medications and supplements. Most docs simply do not know. My understanding is that Curcumin potentiates aspirin less than fish oil. Best to check with a doc who really knows supplements (not most docs). (Note: some docs have a hard time admitting they do not know something) A doctor my discourage the use of something that really can help out of an abundance of caution when they are not sure.

There is a difference of opinion amongst the experts about treating PV. Here is a brief commentary by Dr. Spivak (who used to be my MPN-Expert consulatant)

vjhemonc.com/video/4kie_7r9...

For an alternative view, Dr. Silver

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

I think that it goes to what Dr. Spivak says about PV not being a monolithic disease. We each need an individualized approach that is based on our presentation of the MPN and cooccurring conditions. We also need to be clear and assertive about our priorities, preferences and risk tolerance.

Thanks for asking the questions. As often happens, answering helps me to think things through regarding my own situation and the decision I need to make.

All the best.