harrishill1

Re-energised is a good way to describe it.  Your batteries are recharged, I find.

Hi Colin,

You should bear in mind that phlebotomy is normally introduced as the initial treatment for PV and will not control some of the symptoms that need drug treatment once the phlebotomies have run their course.    It may be that you will be fortunate and not need any drug treatment in which case things will be easier for you.

However, don't disregard medication for it can be extremely useful in controlling PV when phlebotomy has expired. It is the overuse of drugs that tends to cause difficulties in the long run.  For some reason the use of the drug interferon is quite disregarded in Europe but hailed in USA as a very useful treatment for PV etc.  This is not a new drug as it has been around for some years but has fallen out of favour.  According to some recent publications by very highly regarded physicians in USA and Scandinavia it said to be of very beneficial use in the treatment of MPN"s.  Like all drugs it can bring some adverse side-effects but the results achieved far outweigh the poor effects.  So do not ignore what is available to treat PV as more of these are coming to the availability of doctors as they become authorised for treatment purposes.  Keep an open mind on your treatment and always ask questions of your haematologist.  It is early days for you so far with PV.   You will find plenty of sound advice on this forum from other PV sufferers but this disorder is very variable in its content

and each individual must be treated so.  Best wishes.

Peter.

Hi Peter,

It was made clear at the initial diagnosis of PV by the Haematologist that phlebotomy was the first step in the treatment of PV and then to go on and take the chemotherapy drug Hydroxycarbamide which was being promoted as a preventative measure in terms of heart attack and stroke.

After reading up on Hydroxycarbamide and the potential side effects,i decided on balance and given that I don`t feel ill in the normal sense of the word after the diagnosis of PV, to decline the offer of the drug and continue with phlebotomy but keeping an open mind.

I am continually armed with questions to the Haematologist on my monthly visits to have bloods checked.My latest question was to ask if the Haematologist knows of cases of PV where people have lived out their lives with phlebotomy and aspirin but no chemotherapy drugs or associated drugs.The answer was yes.

This leads me to think that perhaps PV can be classified in terms of mild to aggressive.As a relative newcomer to PV and the forum I stand to be corrected on anything and everything and look forward to learning more about PV on this valuable forum. 

P.S. I wonder if you might know of a study group(s) that collate statistics on those with PV.as I think that could be of interest.

Best Regards

Colin. 

There certainly is an aggressive form.

Again, I can’t make a direct link to the article, but if you look up the words Focus on aggressive polycythemia vera and the name of the doctor, Spivak, you should find some reading material about it.

Thanks Angela for `Focus on aggressive polycythemia vera` by Dr. Spivak.An interesting and informative read.

Best Regards

Colin.

Hi Colin,

There is much truth in what you have said for PV and other MPN"s can be very variable both in its symptoms and treatment.  They are progressive disorders but a great deal depends on the circumstances of the patient and in particular, their own specific biometric structure,  eg DNA, and it is essential that each patient receives individual medical supervision with their treatments to match.  A number of people, like yourself, start on venesections and can remain on this treatment without much alteration and if as you say it becomes more aggressive will require a different approach.

As far as PV is concerned in terms little was really known of the disease until about 15 years ago when it began to receive attention from researchers which has blossomed into more publicity and thereby newer treatments.  Previously it lacked attention and those who were diagnosed with it were quite disadvantaged by the weak knowledge and lack of specific treatments.  It is a very serious and rare disorder.  Much has still to be learned.  As far as treatment without recognised drugs, Angela I feel is well equipped to answer that question.  An amazing person really.  It is personal commitment.  The rarity of PV is described as 2 in 100,000 people with more elderly patients now coming to notice due to the modern trend of extended life expectancy.  There are some very good medical sites to which one can refer but do ensure the information given is from a reliable source. The web-site of this particular Patient Forum is a good start.  Most research on this subject seems to emanate from US sources where there are of course, many more patients to notice than there are here in UK where good research is also carried out in conjunction with that in US.   I would also point out that your hospital Haematologist should be able to supply you with certain authorised literature on PV and other included diseases usually supplied by charity sources.  Be interesting to hear how you progress.  Good luck.

Peter.

 

“As far as treatment without recognised drugs, Angela I feel is well equipped to answer that question.  An amazing person really.”

Oh, Peter, you old charmer.

I bet you say that to all the girls.

Hi Peter,

I just happened across this forum. I was researching high platelet levels following phlebotomy and saw many of your responses. I am one of those elderly folks you referred to, just turned 77 last week and was diagnosed with PV. I have been struggling with diabetes for over 40 years so hearing about this was not welcome. 

I have just completed 4 phlebotomy treatments and my levels are within normal range except my platelet count went to 608. Needless to say, I didn’t know what to think. I don’t see my oncology doctor for a few days.  I have always wanted to keep on top of everything so this website came at the right time. I don’t have to worry until I see him. 

Since I had my first appointment, I have embraced the Whole Foods/ Plant based diet lifestyle. My diabetes is in better control and I have reduced medication by 75%. My goal is to heal “all that ails me” and live out the rest of my life knowing that I am doing all I can to be healthy.

 I just wanted to tell you that you helped bring up my spirits and with more knowledge, I can conquer this, too. Some medical websites can be scary. I always helps to converse with someone who’s been there..

Hello Ruth,

Thanks for your message.  Good to hear that you have found the forum useful.  Your PV should not be too severe as you have a late diagnosis, even though the illness may have affected you long before now.

You seem to be thinking things through admirably.   Your platelets do seem a little high but not out of hand.  They can read much higher.  Sadly PV is currently incurable but can be controlled well by the treatments you now are receiving.   The treatments may require a little adjustment from time to time, but carry on the way you are and there is no reason why you should not live a happy normal life span.  Having also to cope with diabetes does not help but as you are receiving treatment for this and you seem to cope well with this too, then just live your life as you would.  PV is not connected with diabetes.

Both have different causes.  Yes, one needs to be careful with the medical sites on the internet for they can give too much information and at times, be misleading.   The site you are now on and the NHS web-sites should be a first port of call really.  Your platelet count will improve as the treatment builds.  I wish you well.

Peter.