New ground for me
Posted , 10 users are following.
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 :-)
0 likes, 25 replies
lilian56
Posted
Morning all, from sunny Australia, although a little cold ( 7 degrees until lunchtime) its our winter!
Ive had a strange situation this two weeks I thought i would share since it has been mentioned that everyones journey is different with PV.
On 2nd July I started to get pains in my hip and left leg which were a sort of aching feeling, on 3rd I went to the doc who organised a scan to check for DVT, that came back clear and she prescribed pannadol and rest, it went away initially however on the 8th it came back, a dull ache, persistant but relieved when i rested my leg, on the 9th it was worse, I could'nt put weight on my leg and I noticed bruising appearing behind my knee so off I went to the emergency ward of the local hospital, where I found blank stares when I mentioned my recent diagnoses, they were very attentive with ultrasounds, CT scans, x rays and blood tests, there diagnoses was that I had a torn hamstring which had caused my muscle to bleed, they sent me home to rest it with painkillers. They dismissed my argument that I had done nothing to tear a hamstring.
The following day my consultant rang, she had received a copy of the medical notes through the hospital system, I have to say I was impressed by that, however her advise was to stop taking asprin, she said the whole thing is likely caused by the PV and the asprin could be making it worse!
At this stage Im off my feet with a swollen and bruised leg (completely bruised at the back from hip to knee) although I have no pain now its uncomfortable to walk on (today is the 17th) my next clinic visit is on the 24th and Im told to stand by the phone for an appointment for blood letting.
I have also discovered that an Aunt of mine was diagnosed with the same condition when she was 75, shes now passed on through other complications with health and no one in the family seems to be familiar with her journey with PV, Im told repeatedly its not hereditory but I wonder how they could know this since it seems it was only recently ( in the scheme of things) recognised. The advice that it (in my case) is a gene mutation does not really answer that question, is it not possible that the gene could have mutated due to something hereditory.
Anyway thanks for the sound off, hope your all enjoying your beautiful summer days in UK.
Lilian :-)
peter98873 lilian56
Posted
Hello Lillian,
Hope you feel better from your mishap. In this world of ours one can never say never to anything as most surely it will happen to someone. This applies most certainly to illness and medicines. To explain, some 150 years ago a medical researcher in Mexico came across Polycythaemia as a new illness and so published a resume in a medical journal. However, it did not seem to create much interest and it was about 60 years later in UK that Polycythaemia re-appeared to the medical profession as a distinct illness and remained in records for what it was, without much explanation. Some 50 years later medical researchers reviewed this illness and as a result it became more widely known and identified as a regular illness. Not a great deal was known of PV until then and following research in about 2004 a defective stem cell was identified as the cause of PV.
I well remember my consultant Haematologist eagerly telling me about the finding which was said to be due to this stem cell being a birth defect that affected only the patient concerned. There was no evidence that it was inherited or passed on and to the present time I have not learned that this has altered. The stem cell concerned was abnormally formed in two parts, known as an allele cell. Part was normal and the other part abnormal, the latter being the cause of PV. This can remain inactive or if active can progress to another illness within the group known as MPN's (Myelo Proliferative Neoplasms). The abnormal part of the cell is where any mutation occurs to cause this progression. It is known that PV can be caused by other means in people living at or frequenting high altitudes or from habits e.g. smoking. A lack of oxygen is the reason for this and by removing the reason for the restricted oxygen supply, can effect a cure. The defective stem-cell can only be cured by its medical replacement which is a high risk procedure and not regularly carried out. Conditions apply. The gene mutation is an effect of the abnormal (JAK2) part of the defective stem cell. When I was initially diagnosed with Polycythaemia very little was known of or understood about PV and for my own purposes I decided to do a little research of my own in order that I would be able to give myself some knowledge of this illness I had. Since then, much has happened including the introduction of new drugs and treatments, which offer a better way forward. I have never discovered any evidence that the mutated PV is inherited or transferred to others, which is also the medical view. Of course, there is always this million to one chance!
Yes it has been lovely weather here in UK for some weeks now but the plants seem a bit bedraggled. Best wishes. Peter.
angela_o..o lilian56
Posted
Hello lilian,
Sorry to hear about your problems. It’s true that aspirin makes the blood thinner so if you bleed for any reason the bleeding is more sustained than normal. It might be that you did something quite innocuous that you can’t even remember doing, and that caused a small internal bruise.
Rest and wait for things to settle down, I’d say.
Yes, about two posts up, I said that I’d read that some doctors think that there may be a genetic disposition to PV. Not inheriting the disease so much as inheriting the possibility of getting it.
Baking hot here in UK. A drought. Hosepipe bans about to be put in place. All of 26°C- don’t laugh.
Keep cheerful.