Hi everyone, I'm 53 live in Gibraltar and have recently been diagnosed with Polycythaemia Vera. My bone marrow biopsy confirmed that I was Jak2+ and ultrasound scan that my spleen was enlarged. I've had 5 venesections thus far and have a 6th scheduled in a couple of weeks. My Doc is working on getting my blood results down to the right levels. Currently working hard on getting my weight down as I was bit overweight. I'm currently only taking Aspirin and Allopurinol.
Well I thought I'd introduce myself and say hi.
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AndW65
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Hello and welcome to this lovely group I have not long joined but I find it very helpful I am sure you will too . There are lots of people who have the same as you . I have ET I am 52 I found this out in January gone and I am still trying to get my head around it I take aspirin and hydroxy and I am so glad I found this group there is always someone willing to answer your questions if you have any so please ask away and best wishes .
Thanks, it’s a great group and it’s comforting to know that there are people out there with more experience that can answer concerns from a personal perspective.
You have made a smart move by joining our friendly and informative group.
There can be a sense of isolation when diagnosed with this rare condition, so it’s good to connect with other MPNers. I know it has helped me enormously, especially in the early days of diagnosis.
Hello! 😄 You'll find lots of info on here, and if you have questions please ask on here, someone will know the answer, no matter how odd you might think the question is. Everyone reacts differently to the disease and the drugs.
Hello,and welcome to this group which I have just recently joined and found it so very helpful I was diagnosed with ET after bone marrow biopsy in July and am on Aspirin and Hydroxy, although the latter has been suspended at moment as I am shortly having radiotherapy after breast cancer operation. Keep,in touch and I hope you get your blood results down to the right levels soon. Fran
Staying active has really assisted me, and my efforts enormously Andy, and so much so that I have experienced a significant downgrading in my Bone Marrow Scarring from Grade2 down to Grade1.
Personally, I believe that my fitness, fasting, and dietary regime has played a very significant roll in my MPN improvement. However, my specialist believes that Jakafi has played a more important role/part in all of this too...
While there might be some truth in the above statement, (in respect to Jakafi...). Because, I can categorically confirm, that the mental fugue I suffered under HU & Interferon Aplha was an intolerable experience for myself, and the Jakafi seemed to be the obvious cause for that change, and the subsequent elucidation. However, personally, I choose to believe that: my positivity, increase of physical activities, diet & cycling in particular, have and continue to play a much larger part; as I said, in my view...
Since having started on that diet/exercise regime. I have also shed circa 20kgs, and while I do still suffer from extreme fatigue (at times), nausea, headaches, bone pain, the most horrendous cold sweats & low grade temp's...
...Generally speaking, and via this far more holistic approach, I actually feel as though my condition and thereby its progressive course, might largely have altered somewhat, and that it might lay in my own hands, and the decisions that I choose, (no matter how incredibly difficult it was at the start), and since that time they have rendered up to me equally astounding results, in my view...
Hence, my advice, (for whatever it might be worth), no matter how impossible and daunting the task to commence with... Persist, and the positive results will follow...
What was that my favourite Vulcan use to say?:
"When you eliminate the impossible, whatever remains, (however improbable), must be the truth." (Spock)
It matters not how small the first steps are that we take, just that we take them... and, I suppose I should add the qualification that this approach might not work for everyone that has an MPN...
My only question to myself is/was: "...what do I have to lose? And the converse: "...what might I gain..."
The answer thus far, is a far better quality of life (QoL), when compared with how this whole journey commenced etc.
Thank you for the information. I am on Jakafi and it seems to make all my symptoms worse. I agree fitness and diet are critical. Are you still agreeable with Jakafi? Any blood result improvements?
Yes, the Jakafi still seems to be helping, mostly. Although, my platelets could be lower, (900s)? I may be heading for a combination therapy sooner rather than later...
Hi Steve, thank you so much for taking the time in such lengthy, detailed and thoroughly encouraging reply. I am currently at 11kg lost and continuing to loose weight. I have changed the way I eat opting for more fruit, veg and fish. Generally eating healthier and hydrating on water quite a bit. I try not to eat to much in the evening and drink plenty of water to fill me up. I’m continuing with the cycling which I enjoy, although I have to decrease the distances due to the recent venesections and work my way back to previous km’s.
Once again thank you for your words which I find very encouraging. Like you quite rightly say “what do I have to loose & what do I have to gain”
Hi Andy welcome to our forum, so pleased you have found us. It seems that you are doing all the right things and sound very positive which is great. Anything you need to know, just ask and we will all do our best to answer your questions. Best wishes, Maz
Thanks Maz , knowing there are others out there with a greater understanding is extremely comforting. It’s a great group with great and helpful people.
Hi Osteomyelio, it seems to be working for the moment, I’m still on just the aspirin and alluprinol.
Apart from the BMB which confirmed P.V with Jak2+, I initially had 6 pints of blood out in a 10 week period after which my levels returned to an acceptable level last October. They’ve been slowing going up since but my doctor was reluctant to remove as my Ferritin level was really low. Last week my HCT was at 51.2, HB 16.0, RBC 6.93, WBC 11.2, RCDW 22.4 and my Ferritin had increased a bit to 15.7 (it got as low a 9), so I had another venesection.
My doctor told me he is trying to balance my HCT, HB and my Ferritin level for the time being. He’s told me that hopefully I shouldn’t need additional tablets for a few years yet.
I’m still working and my job involves mechanical engineering so it can be quite physical at times.
My current symptoms are redness of the face (sometimes very) and fatigue but other than that I generally feel OK.
I have to see him again in 3 weeks so we’ll see how much the levels change.
I eat a normal varied diet including the occasional few glasses of wine.
I’ve not been training much recently as I’ve been having an issue with one of my knees (unrelated to my PV).
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