Platelet count rising from phlebotomies

Hello Rara,

The docs want me to go onto the chemo drugs because I am over 65 but I have refused from the start for quite a few reasons. so I have devised my own "diet" based on various bits of "research" that I have done.

In no way am I recommending that anyone else takes up my ideas but, for what they are worth, here they are.

I saw that quinine is a drug which has been found to reduce the number of platelets in "normal" people. For this reason it is strictly controlled and impossible, I think, to buy online. I decided to drink a 500 ml bottle of tonic water (the brand that takes its name from the source of quinine) every day. I have been doing this for over a year and, with one or two deviations when I had gardening injuries, my platelet levels have been generally going down.

I also noticed that sesame seeds and very dark chocolate contain chemicals which make platelets less sticky. It is a hard job, bit somebody has to do it, so I have been eating 100g of 99% chocolate and 100g of tahini straight from the jar every day.

I have no idea if these are helping or not, but they taste great.

 

Hi Rara Angela is right. Phlebotomies raise your platelets cause your body is thinks it's bleeding and makes more platelets. I've read that one should not have more than 5 a year. Don't know if that's true, just passing information. As far as dietary advice, we should not indulge in foods high in iron, spinach, beans, meat. I've cut it out of my diet. Also, I'm reading a lot about magnesium supplements. Seems most of us are low in magnesium. It would be a good idea to ask your Dr. About it as far as what your dosage should be. You can also Google foods high in iron, which is what I did. Zap

Thanks Rara and Angela.  Already my hematologist is slowing the number of phlebotomies.  I don't have another one scheduled but will get my blood tested against in 2 weeks and we'll evaluate at that point.  I'm wondering what the long term maintenance schedule will be like once the blood numbers are under control.  How often do you meet with you hematologist?  Do you have CBC tests between meetings with the hematologist and then schedule phlebotomies as needed?

Rara, I've been wondering about ferritin levels too.  Mine are normal right now but I've read that frequent phlebotomies can change that.  The only diet advice my hematologist has given me so far is to reduce my red meat consumption, but I'm already a vegetarian.  

Angela, that's interesting about the quinine.  That's the first I've seen that mentioned.  

Thank you both. 

Hello again,

Everybody has a different "maintenance schedule" (I like that - it makes me sound like a car ) because everybody has a different reaction to the disease.

I live in the English Midlands and the hospital is a bit chaotic. Friendly and nice but a bit chaotic. I have a blood test half an hour before I see a consultant. And I see a consultant about every couple of months. They decide then when I should next have a venesection. The venesections vary in frequency but about once every couple of months too. Because they aren't coordinated I feel as if I am never out of the place.

I have been a vegetarian for years. I have no idea about ferritin levels. I don't take much interest in numbers as there is sweet f.a. I can do about them. 

 

From the responses you have already received you will gather that there are no hard and fast rules when it comes to treating PV.  As has been emphasised, each person is unique in their format (consider DNA) so the treatment each patient will receive is calculated on the test results obtained by the haematologist prior to diagnosis.  The commencement of treatment will aim at controlling your various counts but do expect these to alter as time passes.  This may result in a different approach to your symptoms by the haematologist.  This will soon evolve into a pattern and your results will settle down and become more recognisable to you, and indeed others too.  As time passes your treatment may be changed as PV is known as a progressive disease and needs adjustment as time passes.  As Angela has stated, don't become too besotted with figures for they will rise and fall with body changes quite naturally.    Of course you will need regular visits to the haematologist clinic to assess your progress but normally this settles into a manageable time-table quite soon.  PV is not currently a curable disease but it can be effectively treated.  Research is taking place even now.  If you were to look into Polycythaemia Vera under the 'Related Information' heading at the bottom right side of this page you will find much to interest you in combatting this disorder and find answers to some of your queries.  Take things easily, listen to what others more experienced can offer and most of all, enjoy your life there is much left for you to look forward to.

Thanks Peter.  If anything, I may be taking this too lightly.  I'm 45 and was bicycling earlier in the day before I started having severe stomach pain while at home.  That turned out to be the splenic infarct that prompted my diagnosis.  Other than that, I am not aware of other symptoms.  However, i'm not really very aware of symptoms of anything.  I have rarely gone to the doctor in my life and I'm not sure I would recognize fatigue as a symptom of this.  

I do plan to learn as much as I can about this as I do understand I will be dealing this for the rest of my life.  I'm thinking of it kind of like Diabetes.  Right now my concern is that family members will look this up and see that it's classified as a cancer and overreact.  I live in a small town and I really don't look forward to explaining in great detail to everyone that my health situation is not as grave as it sounds.  

Thank you for your words.  This site has been a great source of information. 

Yes Saad, there is much to learn about PV which some have indicated is cancerous but other medics are not always so sure but of course it might eventually develop into such.  I did query this with my consultant some time ago and was told that for it to be classed as cancer there would need to be a presence of cancer cells in the blood.  The problem is that PV is so rare a disease that so few people know anything about it.  Only 15 years ago was the JAK2 cell identified as the basic cause of the disorder.  Things have moved forward since then with extra treatments coming on track.  Fatigue and listlessness are know symptoms of PV which normally does not manifest itself until later in life.  There are others but do discuss any queries with your haematologist.  They are the real specialists here.  I think it will be some while before a general cure becomes available though but it is a very serious disorder that needs persistent medical supervision.  With a good drugs or treatment regime you can fulfil a good life span so try not to over-concern yourself about the future.  Plenty of comfortable exercise and a sensible diet will do you no harm.  There are other contributors on this forum who can also offer plenty of good advice so do use them as needed.  The spleen is something that will receive professional attention when you visit the specialist,  depending on your diagnosis.  It is a variable disease and will affect people differently, hence the different treatments offered and the varying test results.  I can assure you that diabetes is not normally associated with PV, although some of the symptoms may seem similar. A simple test can settle this.  Hope this helps.

Peter, you are such a wise owl. I am currently struggling with my condition. I know it is still early days for me too but I just wanted to say that your words especially are reassuring and the voice of calm. I usually stalk this site, but since saads thread is so similar to mine, I decided to be brave and speak up. Thank you x 

Hello rara,

Thank you for your kind sentiments.  You should feel quite free to use this forum as there are a number of patients who can assist with your queries.  I have been dealing with this disease for a very long time now and able to offer practical advice to those who can use it.  It is not an easy disorder to deal with and one always relies upon their doctor and other specialists too see them through.   Just keep a sensible outlook on things and use your haematologist if you have any real difficulties.  Best of luck.

Peter.

Hello Patient 1968,

Sorry that you have been diagnosed with Polycythaemia.  It is a very serious complaint and requires regular medical supervision.   Can I first refer you to the part of this Patient site (as this forum) and search for the Polycythaemia (PV) reference.  This will explain just what this disorder is all about and how it is treated.  You will need to be referred by your doctor to a Haematologist if you have not got this far already.  PV is a complex   illness and very rare.  It is usually with you from birth by virtue of a defective gene.   It is treatable but not curable unless you are prepared to undertake stem cell replacement which is a formidable undertaking that takes some 2 years of perpetual specialist treatment.  This treatment is not recommended to patients over 60 years and generally few will pursue this route unless particularly young.  You are already receiving the primary treatment for PV with the venesections but in view of your platelet count may require medication in the future.  PV can be readily controlled by treatments available which are provided by the Haematologist following some basic blood tests.  Properly controlled you should live to a normal life-span.  Diet forms an important part of your treatment and this diet should be sensible with nothing in excess.  Exercise can prove important too.   Meat can sometimes prove a problem but be guided by your Haematologist.  This is a very variable disorder and your treatments are provided following your blood tests which are regularly carried out at your clinic.  I will not overburden you with full details here but if you read up as I have suggested you will learn much more.  After this you may wish to pursue more questions on this forum.  I was diagnosed with PV some 20 years ago and still am in reasonable health simply by using common sense approaches.  You will not be alone on this forum for despite the rarity of PV there are a number of patients with this disorder using this forum that will be able to advise and assist.   Take heart and good luck.

Peter.