If you have been diagnosed with PV, can I ask you...

[love0826]

Happy New Year Everybody!

I have been diagnosed 5 1/2 years ago, and with 500g/daily hydroxy and one baby asperin ever since, there are ups and downs, but luckily, mostly I have stable good acceptable readings.

Now, at 61, female, I had a few uti's that also brought high micro albuminum after uti to light.

And lately, high calcium in blood tests. The kidney function (creatinine nd BUN are ok).

My questions are, does anybody has discovered microalbuminum and /or high (10.7) calcium without it being a problem with the parathyroid, but somehow related to PV?

I am grateful for any input...

Thanks so much.

[strangeland]

My high calcium was caused by taking Lisinopril for HBP, so only perhaps tangentially related to having PV. Changed blood pressure meds, calcium now under 5.

[hunter5582]

That would be a yes to intermittent mild hypercalcemia. While not common with PV, I had a very thorough evaluation for all potential causes and everything else was ruled out. I have not had any elevated calcium reads since the erythrocytosis was brought under control. The determination by my care team was that this is PV-related in my case.

Hypercalcemia can have a number of different causes, including parathyroid issues. Best to not make assumptions about what it is or is not since it can be any of a number of things. A thorough evaluation is warranted, particularly with having PV. I have maintained an annual review with an endocrinologist just to monitor endocrine function since there was an issue. My MPN care team, PCP and integrative medicine doc also monitor.

Please do let us know what you learn and how you get on.

[love0826 in reply to hunter5582]

Thanks so much hunter5582 for your response. I am not sure at this point that I have the strength to undergo all the testing for more potential bad news. I know that high calcium is most likely caused by parathyroid issues, which always recommends surgery. I know I am not ready for that, because the surgery can mean more problems afterwards, and I am currently not even in a country where specialists are available. Honestly, I hoped I already had my share with PV, but it seems, more is to come. I appreciate your insights very much. You appear to be a very strong person and soul.

[Hopetohelp in reply to love0826]

my elderly Mum has high calcium levels being looked into at the moment and I believe for those not suitable/ want surgery for parathyroid that pills are available to control it. She hasn’t got pv but I have, and I know they test my calcium regularly. Good luck and let us know how you get on

[hunter5582]

Finding specialists can be in a challenge in many places. The closest MPN Specialists to Belize are in Mexico City and Miami. mpnforum.com/list-hem./

I certainly understand what it is like to be dealing with multiple medical conditions. I also have another chronic condition, Neurofibromatosis Type 1. In the last several years I have had four surgeries, including heart and brain surgery. Also found out that the ET had progressed to PV. One thing I have found is that the fear of the unknown is often worse than the fear of what is known. I find it easier to deal with what is than to deal with what might be.

We all get overwhelmed at times with the MPN. More so when other things come up. Back in 2013 I had a spike in issues and did not deal well with it. I decided I would never let myself spiral down like that ever again. When I had the more recent spike in medical issues, I dealt with it very differently. How we choose to deal with the stressors makes a huge difference in our quality of life.

So how to cope? I think we all find our own ways. Here is what works for me.

1. Support from family, friends, and faith community.

2. Support groups/forums for MPNs/NF (my friends and MPN/NF families)

3. Maintain your sense of humor and find ways to have fun no matter what.

4. Surround yourself with things that are positive and lift you up.

5. Mindfulness practices - I practice Qigong.

6. Say the Serenity Prayer every day and take it to heart!

7. Educate yourself about your condition(s). Knowledge is power.

8. Create a high-quality treatment team who you trust.

9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the conditions you face.

I have been blessed to have relatively indolent forms of a MPN and NF1. I have led a long rich life and plan to continue to do so despite what happens with the MPN/NF1. Sure - there have been some challenges with the MPN, the NF1 and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or "Suck It Up Buttercup.” However, it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.

More than anything, know that you can manage this. There are ever-more treatment options and very real hope for treatment improving in the foreseeable future. You can put together a plan to manage the condition(s) you face. Have confidence that you will be one of many who do manage the challenges successfully. You have got this!

Do not just survive – THRIVE!

[love0826 in reply to hunter5582]

Dear hunter5582,

I love your response. Thank you for taking the time. Yes, there always comes a time where we just have to accept things that we cannot change and find inner peace. This is especially in recent years a prominent lesson for me and seems to be ongoing...it is for me just easier to process things that don't concern disease that is not curable , but of course we always have to value the NOW, no matter how clouded it may seem, because that is all we have, there is no forever. This is the same for all humans, just more more obvious on the path of disease.

I find your words very comforting, like a genuine hug. Thank you again.

[C_Anne_Orange]

I am a 74 year old woman diagnosed with PV in August 2021 and started aspirin, phlebotomies immediately and hydroxyurea in October of 2021. The very next blood test in October 2021 showed high Calcium (10.7). It went back down on the next several tests but then back up again in February of 2022. Since then it has been within normal ranges. My MPN doctor tested for parathyroid and it was negative. She said she didn't think the high Calcium was PV related. I'm hoping it doesn't come back but it remains a mystery. I started on Besremi in December so on to the next adventure. Hope your numbers go back to normal!

[love0826 in reply to C_Anne_Orange]

Hi again C_Anne_Orange, I thought I let you know about my parathyroid result (49) It was within normal range (10 - 65), but as far as my expansive research shows, it should should be low, when high calcium (10.7) is present, if the parathyroid glands are healthy.

As far as I can see in research and there is none really, about if high calcium can be related to PV. It only says, certain blood cancer could be. My doctor told me to just wait and see and repeat the calcium test in a few weeks, but that does not feel very reassuring.

[C_Anne_Orange in reply to love0826]

Hi There,

It is worrisome to see Calcium too high with no explanation. When it first happened to me I was nervous about it. Since I was first diagnosed with PV in August 2021 I have had 3 high Calcium readings (10.7 twice and 10.8 once) over may metabolic panels. My parathyroid test was done after the 2nd high calcium reading and came back normal at 37.8. Since then I have only had one more high Calcium reading, and none since January 2022, over a year ago. I get another metabolic panel on Monday so hopefully it has stayed within the narrow normal range. I think the high readings were mostly when I was having a lot of phlebotomies after my diagnosis (my HCT was 53.5). I can't remember if you are also getting phlebotomies? I think they contribute to wrecking our normal state in strange ways. It sounds like your Doctor is paying attention which is good, so I would be comfortable waiting for your next metabolic panel and if it is still high asking what else should be done to figure out why? I'd be interested to hear about your progress and any other information that you get on the Calcium. Best of luck!