New ground for me

Allergies, blood and immune system
1

Hi all, I found your discussion forum whilst searching for alternative treatment / diet recommendations, Polycythaemia Vera is a condition I have been diagnosed with (4 weeks ago) so Im new to this. Ive found lots of info online and on your discussions, so far Ive had one treatment (blood removal) and been prescribed a chemotherapy drug, the treatment was given on the same day as diagnoses as I was leaving the next day to embark on a 3 week overseas holiday (great timing) so far I haven't taken the drug, I don't usually use medication casually and the word chemotherapy scared the daylights out of me! I have another treatment planned in 5 days. I hope to be able to discuss the condition with my haematologist in greater depth on my second appointment as Ive now had time to do a little research and gained a little education. My first appointment bombarded me with information which was clouded in a haze of bewilderment.

I was wondering if anyone here is treating this condition without chemotherapy drugs? and if anyone knew what the purpose and benefits or negatives of a chemotherapy drug is as this was not explained to me.

Thanks for reading :-)

2

Hi Lilian,

I was diagnosed in 2006 with PV an the only treatment I receive is Phlebotomys every 8 weeks an I take a daily Asprin.  I’m JAK 2 negative, Every Hematologist seems to treat this condition differently, my HCT an HGB have never seemed to stabilize.  My HCT will run from  as low as 43 at times to as high as 51. HGB as low as 14 an as high as 17. My hematologist has never mentioned taking a chemotherpy drug yet, I hope this helps answer your question, I’m sure some others in the forum will answer also. . . . . . Take Care

3

Hello lilian,

You don’t say how old you are (though I’m guessing you were born in 1956 so you are 62ish).

You don’t say where you live (though I’m guessing by your syntax that you are British and being treated by the NHS). 

You don’t give any of the blood test readings for us to think about.

You don’t say what circumstances led up to your going to the doc’s, the hospital and finally the haematologist.

And you don’t say if you have been tested for the JAK2 genetic mutation and found to be either positive or negative.

However, so far as a diagnosis of PV goes, your haematologist will be keen to reduce the number of red blood cells in your body and maybe also the number of platelets and maybe the number of white blood cells too. The venesection was the quickest way to get most of those down.

Are you taking daily aspirin? That will keep the blood cells from trying to stick together.

Once the numbers are down to a safer level, things will have to be kept there on a long term basis. This is where the drug/no drug bit comes in.

Everyone who has PV has a different backstory and a different experience of the disease.

I was diagnosed when I was just 65. In the NHS, 65 is the magic age when chemo is automatically prescribed as the long term treatment because, it is thought, it helps to prevent strokes and heart attacks which venesections do not.

However, I found that there is a risk of PV transforming to leukaemia with the drugs. Whereas the venesections have a higher risk of stroke and heart attack. My family history of no strokes but many many cancers made me choose to continue without the drugs and with the venesections.

So far, I have been repeatedly asked if I would like to change my mind and I have repeatedly said no. So far, I seem to be doing OK.

But I can’t offer this as advice for what you should do.  We are all different. You must gather as much information from as many reliable, professional sources as possible and make your own decision.

Good luck.

4

Hi there it depends on your age whether they suggest Hydrox ( shortened version) or not I have been on the tablet and with three visits a year for a vienession I take two tablets a day I did try three and four but they upset me so much ulcers in the mouth feeling yuck so I compromised 2 a day and I feel fine on that for the past 6 years.I do Gardening walking swimming playing bowls twice a week meet grandchildren from school three times a week so I’m a very busy 78 years young . You can be born with this and also can be genetic . Flying is a hazard due to Deep vein thrombosis  so maybe that’s why he started I on the tablets. Check it out get all the info u need I need to try and drink 3 litres a day of water . Lay off alcohol and cigarettes ( I’ve never indulged anyway) they can change the blood . The odd glass a month is ok I find ! Good luck You can live a normal

Life span with this diagnosis keep fit xxxxxxx

5

Hello Lillian

 Your feelings and reluctance to take the drugs are completely normal. I am 15 months diagnosed now and have days/weeks where I am completely overwhelmed by the diagnosis. This site (and the people on it) is brilliant. As Angela says - everyone is different and it appears to me that everyone reacts differently to similar treatment. Personally my RBC has been controlled only by venesections so far. My problem being it has left my ferritin levels (iron) very low. Consequently, I get very tired, fatigued and low mood. My haematology department is brilliant- I have decided my course of treatment (with their advice of course). They have advised I may feel better on Hydroxy (Chemo) but it is my shout as and if I start. Your haematology department should have some plain speaking leaflets they can give you to read. Do as much research as you can only you can decide if and when the time is right to commence drugs. I have resisted thus far, but I have a loose agreement with the hospital that next time I require a venesection, then I will consider the drugs instead (although they have booked me in for a blood let “just in case”). I am currently getting my head around it to mentally prepare because I feel that if I think they will make me ill, then they will make me ill. But they also reassure me that it’s not a one way street - if they’re not for me, then we can discuss other ways. 

I feel your pain, but take your time and gather all the information you can. 

Good Luck x 

6

Hi lilian,

            I was diagnosed with PV after a routine blood test about 10 months ago.It was suggested that after lnitial phlebotomy to bring the bloods back within their normal range,that the chemo drug Hydroxycarbamide which was promoted as a preventative measure against stroke and heart attack should be embarked upon.

After reading up on Hydroxycarbamide I decided to decline the offer on the basis that I did not want to invite any of the potential documented side effects ,and in any case after the initial phlebotomy I felt re-energised and still do.

On an ongoing basis I have a blood test every 4-6 weeks and venesection about every 6 weeks,which appears to have stabilised the bloods.

I have no doubt that the Haematologists have our best interests at heart,but I do think it is important to be in possession of as much information as possible so that ultimately we can make our own decisions.

All the best,whatever you decide.

Colin.

7

Hello Lillian,

You will see from the various responses you have received just how variable this disorder can be.  Quite frankly what is suitable for one is not necessarily right for another.  Generally venesections (blood lettings) are used for the initial treatments for PV which will run its course and then be followed by drug therapy which is able to treat the blood more effectively.  Some of these drugs are also used in the treatment of other similar-type illnesses.  It does seem that your diagnosis of PRV does represent a use of drug therapy but this is not always the case as it depends upon your personal medical circumstances.  These include the tests conducted by the Haematologist who diagnoses and treats your illness thereafter.  Often, it is the symptoms that arise from drug use that produce the difficulties, in which case one should discuss the problem with the doctor.  It is accepted that the longer a drug is used the more likely one will meet symptomatic problems.  These need to be taken to the Haematologist.  However  some patients can remain symptom-free and be well suited to the treatment.  Such is the variety of this illness.  I suggest that you take careful consideration of each step of the treatment offered and of how you may be affected.

New treatments and drugs are often being introduced specifically to deal with PRV and other MPN's in the same category,  which offer excellent advantages.  Previously these disorders were treated with the best treatments that were available at that time which brought about the uncertainty of side-effects that were sub-sequently encountered.  Bear in mind, that this is a serious and rare disorder that requires professional attention.  Chemotherapy simply refers to the types of drug used to treat different and serious diseases to which those involved with PV etc can now be attributed.  A defective stem cell is known to be responsible for PV and this is not accepted as cancerous, although without treatment it can possibly progress this way.  This itemises the use of a correct treatment regime.   Beat wishes.

Peter.

8

Hi Lilian. I have been diagnosed for about ten yrs now. I have PV and am on Hydroxyurea. Not many side effects, some food allergies of late. Had to stop eating spices. The Hydroxy keeps the red blood count from going too high, and eventually you won't need to have the phlebotomies. I still sweat a lot, but much less than before being on the drug. I overheat easily, but not as much as before. So far, the drug is working for me. harrishill

9

Hi all thanks for your responses, its much appreciated, Im 61 years old, I live in Australia, I did have symptoms which took me to the doctor they included burning feet, dizziness and night sweats, however I ignored these, until I got the pain In my side which I now know was an enlarged spleen, blood test had me referred to the hospital haematology department as an urgent patient they diagnosed it as PV, the information provided was vague, only that Ive had it a while, its life long, its treatable and its not hereditary, as I was leaving to fly international the day after diagnosis there was some concern which is why I think they prescribed hydroxyurea, although Im not sure how useful that would have been (had I taken it) with just one dose before the flight. Now that Ive had time to do a little research and gain some knowledge I will be better armed on my next visit for a phlebotomy (July 10th) and know what questions to ask.

I was also diagnosed with Sarcoidosis 30 year ago, I dont have any symptoms at this stage and have been told many people live with this disease and dont even know they have it, however I did see a short paragraph online suggesting the two could be linked, I'll be asking that too.

The information you have all provided has helped a lot, thank you, my greatest concern was that PV is a cancer and that my life span expectancy was less than 2 years, which I can thank Dr Google for, I feel a lot more at ease now and able to focus on asking the right questions which hopefully will be relevant to me.

Thanks again :-)

10

Hi Lilian,

Thanks for your reply.  I think it should be said that most sufferers from PV etc would advise you to keep away from internet solutions unless you are visiting a very responsible medical site operated by recognised medical operatives.  The forum site here is a good starting point as it has a separate section aimed to supply up-to-date information on all manner of medical complaints.  Good luck - there is always a sympathetic ear available 

on the forum.

Peter.

11

Old woman with 7 years of phlebotomies & no drugs offered by hematologist.

 

12

Hello Debbie,

I am not sure what your question is.  If you have had venesection (blood letting) then that is considered the first line of treatment for Polycythemia.   As you seem to be receiving this form of treatment then it must be considered that you do not require drugs, except perhaps aspirin.  If venesection does not control your symptoms then that is when drugs could be introduced, for these can treat the blood differently to what you now receive, which is the simplest form of treatment.  You say you are an old lady and have been treated for 7 years.  Well that is not unusual for quite often Polycythemia can present itself very late in life.  This is due to the trend of living longer these days when formerly it only came to notice when younger.  From what you say I expect your Haematologist is prescribing the right treatment for you.  The problem with PV drugs is that they can introduce some unpleasant side-effects.   If you can get by without them so much the better.  Your treatment is pretty common for people of your age when Polycythaemia generally does not progress to other more serious disorders.  Live well and enjoy your life.  Best wishes.

Peter.

 

13

Peter, I didn't have a question. I was responding to Lilian's post. Letting her know that even after 7 yrs of phlebotomies & old age, I still have not been prescribed chemo as she was upon her first visit/when diagnosed. (I certainly am not complaining, wouldn't take chemo anyway.)

14

Old woman eh?  how Old I’m 78 years young and still don’t call myself old !! 

15

Hi Debbie,

Thanks for your reply.  You are most certainly on the right track and if you are happy with the treatment stay with it.  Quite a few people string along with just the venesections.  It simply means that your disorder is not flourishing and does not raise any further concern.  Each patient presents a different problem and your treatment is designed for you following your medical tests.  What suits one does not necessarily suit someone else.  You seem a very sensible person and in full control of your abilities.  Stay well.

Peter.

16

Thanks everyone Im loving all your input, if nothing else its putting my mind at rest that Im not alone in this!

Just a little update for those who posted to my discussion, yesterday I had my second consultation, no treatment for me until the 24th just more blood tests, however I did query the medication prescribed and although Im still resistant I now feel it is necessary to take it, they advised my red blood count was up to 200, that meant nothing to me but from the expression she used,Im guessing its high! She also followed that with a strong recommendation that I take the medication immediately,  So I won't fight that. 

One observation though, and Im sure its something most experience with their first diagnoses, although all the nursing staff Ive been in contact with have been wonderful, don't you think there attitude is a little matter of fact? My first appointment was through the haematologist department at a major hospital, I was then told all subsequent treatments would be at my local hospital, I was more than a little jaded yesterday when I arrived and was advised I should be in the cancer care clinic! Perhaps Im just being precious but the word cancer hadn't been mentioned to me in any previous conversation.

Anyway, once again, thanks everyone. 

17

Yes, it’s classed as a Myeloproliferative Neoplasm  or MPN,  which is a fancy way of saying a spreading bone marrow cancer.

I used to go for my venesections in the  blood donation s3ction of my local hospital and so mixed with all kinds of visitors there, many of them perfectly fit and healthy. Then Macmillan, a large cancer charity here in UK, built a new wing onto the hospital and I suddenly found myself sent over there for my venesections and now mixing with unwell, and some profoundly unwell, people.  It is now a locked ward with security numbers on the doors. Very depressing.

 

18

Hi Lillian,

If you have a high red cell count that indicates that the bone marrow is overproducing too many of these which carry the oxygen around the body.   So would suggest Polycythaemia but there are other illnesses which provide similar symptoms.  Usually the red cell count is encompassed within the Haemaglobin reading.  If it is any help the red cell count for a female is 4.2 to 5.4 million mcL.    For men a bit higher.  Your hospital experience seems a little strange but maybe it is just a local characteristic of the staff etc.  My own hospital has been absolutely fine and the staff, all of them, fantastic.  It is only in more recent times that PV has been referred to as a cancer but unless the PV is more advanced I don't find that the cancer label applies.

Peter.

19

Hi Angela,

Do you think your hospital can't cope too well with a patient with such a rare disorder to treat and have passed the buck a bit.  It is rare to find another sufferer locally but it can happen.  I can understand your feelings.  Best of luck.

Peter.

20

Hello there Peter,

Well, you know, I’m beginning to wonder if it is that rare.

The last time I went along for one of my fireside chats was in May, I think. The haematology “clinic” only operates for a few days each week. I always seem to end up there on a Friday and I know I once popped in with a question on another day and the place was deserted, so I suppose on other days the consultants do their ward rounds, rake in the shekels seeing private patients etc.

I now only see the nurse, as the consultants have got better things to do with their skills than waste them on listening to kkme saying “no thanks” every time.

Anyway, the last time I went there there was a long delay for appointments to see a consultant and people were beginning to get a bit restive. The lady next to me started to comment on the delay and I joked with her and said that I would be seen on time, as usual,  because I was going to see the nurse and there was never a delay with the nurse.

This led us on to comparing notes and I discovered that she too had PV. We didn’t have much time for a chat because my name was called to see the nurse. On time!

So in I went. And I said to the nurse that I had met a fellow traveller in the waiting room. “Oooh,” she said “there are lots of you in today.” And I was left wondering what “lots” meant in a waiting room of maybe fifty people.

I think it’s more common than we think. And of course, there must be thousands who have it but never get a diagnosis before they pop their clogs.

The sad thing about the Macmillan unit opening is that the same number of staff now work in two places - the new unit and the old blood donation unit, which is 500 yards away. The nurses spend two days here, three days there, shifted on a whim as and when the need arises. They are run ragged. The only consolation is that the new Macmillan unit is a beautiful, light, airy building with enormous windows looking out for miles over the Derbyshire countryside and everyone agrees it is a lovely place to work.