PV & anemia

I live in America, a female in her senior years...in remission from colon cancer and bladder cancer and have had PV for 31/2 yrs. now.  I do NOT take iron since it causes my HCT number to go up and I refuse the Hydrea I don't like the side effects..  My veins had scar tissue and my doctor told me massage that area to help that condition but I usually forget.  I also do NOT eat any foods that has Iron such as red meats and veggies high in iron.I try to walk and drink a lot of water. I also wear full length support hose daily since I am also prone to clots in my legs.  So far my HCT number has come down from 56 to 43 and I go for a lab test weekly and only have a phlebotomy when my number is over which is usually every other week sometimes every 3rd week.  Most days I must force myself to

do chores since a lack of iron causes fatigue.  I also pray alot and try to be active in my church.  I choose to do my walking in a big box store holding on to a shopping cart...since I do not need to fall.  Good luck!! this is my regime.

 

Hi Peter.

I am rather new to the forum myself.

I was wondering about the burning thing - how does it manifest itself with you?

For me it is my feet that are mainly troublesome.  When surrounding temperature is high or high enough, I often (every day) feel parts of my feet get warm, reddish and tingly/to some extent pins/needles.  I doesn't hurt too much - but is very annoying and makes it difficult to sleep and relax.

When I put my feet under cold water or walk on cold floor, things get much better.

BR

Sverre

Snoop dog - I am surprised that your doctor has you taking iron supplements, that would seem to largely defeat the other treatments to alleviate your symptoms.  Since I started Hydroxyurea the burning, itching and tingling have virtually disappeared for me, although my doc had to double the dose I started with.  My iron levels are still very low, with resulting fatigue, but as with frances20411, I walk a lot and that has helped immensely with my energy level. The lack of balance I used to have, as well as the frequent vertigo have also largely disappeared.  

If you aren't already seeing a specialist, then ask for a referral to one if your insurance covers it.  I changed hematologists early on, and changed to one at a major cancer center, it is the best decision I ever made and has made a huge difference in the treatment of my symptoms.  My new doctor is a lot further from home, but it is worth the trip every six months to see him.

Hi snoopdog, yes, Hydroxyurea does deplete my iron, but that is necessary in order to lower my red blood count. When I searched online, it said not to replace the iron with supplements. I still feel fine most of the time, if tired, I take a nap. Been treated for five yrs now. Best of luck,

harrishill

Hi snoop I've had Pv for about 4 yrs and for the first 3 my numbers mainly platelets would go up and down sometimes as much as 2 or 300 pts.  My feet would burn occasionally, it felt like someone had a lighter under my foot.  When my platelets hit a million, I went to an MPN specialist.  Best thing I ever did.  He put me on Hydroxyurea but I only lasted a couple of days. I couldn't tolerate it at all.  Now I'm own Jakafi and I feel much better.  My numbers have went down my platelets are 588 as of last week.  If you are in the US my dr said almost anyone can ger Jakafi.  Incyte the mfr has a very generous program to help people.  Good luck. Zap

I have had PV for 10 years.I went from flobs to hydrea within my first 3 years. I am anemic but I stay away from iron. I try to eat foods that work well against anemia. I also do a speed walk every morning tired or not. I am always glad I did it afterwards. Eat good and exercise. I wish you well.