Dietary suggestions

Hi Zap - I have just been put onto hydroxyurea which is helping. I am really hoping to find some food groups that can also help. Jo

Hi Jo maybe you're having side effects from HU?  I only lasted  3 days on it. My whole body ached.  I'm now on Jakafi.  Side effects are few.  I hope you get some responses as I've been wondering if there are any super foods for us.  Zap

Hi Zap - I have been struggling with my symptoms long before I started HU so it cant be that. Going onto HU actually helped reduce some of the problems I was having. Just hope we can find something else to help naturally. Jo

Hi Marie-Jos. I have been told by my specialist to avoid high in iron foods such as red meat and spinach etc, avoid sea food, alcohol (red wine in particular) or any foods or suppliments that could increase iron or blood production. This does limit what we can have to try and improve our energy levels or general health and well-being. Jo

Hi Jo very interesting about the food restrictions.  No one ever told me about  them.  God forbid my dr would have mentioned it.  I knew about the red meat and of course alcohol.  Seafood is a total shock to me.  I ate quite a bit over the holidays.  Jeez! Do you know why seafood is not good for us?  Thanks for the info.  Zap

Hi Jo I just checked with my Drs nurse.  She said if you're on phlebotomies avoid heme foods?  So I googled foods highest in iron they include beans, dark chocolate, liver (yuk) clams, oysters and quite a few others.  Zap

Hi Zap - it is surprising how many foods we should avoid when you start to research - on the other side of the coin, I cant find foods that are really good for us. Jo

Hi Jo. I agree I can't find anything good, only bad or avoid. This disease is so complicated.  Hopefully someone will read this & respond.  I go to see my onc on the 19th.  I'll ask him but I won't hold my breath.  Lol. Zap

Hi Richard - I have been taking aspirin since April 2015 and Hydroxyurea for 2 months. I have not yet had any really nasty symptoms yet but I do have fatigue, nausea, aching joints and muscles, burning feet and hands, headaches, blurred vision, dissy spells, difficulty putting my words together, loss of strength and itchy skin most of the time (not just after contact with water). So considering what could go wrong I don't think I am doing too bad 😀. Most of my symptoms come and go except the itchy skin and fatigue. Jo

This is my personal experience,I have sore feet about 2 months ago, the sore come and go, if I walk more , the sore is more severe,  to relief my sore feet, I soak my feet for 20 minutes in warm water, I add Epson salt into the warm water( I do this once every week ). It works for me.

I experienced blur vision about two month ago ( while attending a lecture, I am not able to read the things written on white board- it lasted about 10 minutes )

As for blur vision, I roll my eye clock wise and counter clock wise 36 time each, I do this once or twice a day. It works for me.

I do not have other symptoms....Richard

The symptoms can be frustrating as they do just randomly come and go. With all of them I just have to wait for them to pass. They are usually manageable but I did get the blurred vision once while driving up a steep winding mountain range - that was really scarry. Jo

Hi Jo I've read that a combo of Zantac & Zyrtec both otc helps a lot with the itching.  Ask your dr.  A lot of Pv people swear by it.  Zap

Thanks I will give that a go cause the antihistamines I currently take dont do much. Jo