Apologies to anyone expecting a reply from me which never came, I have been quite poorly for some time. The details are quite boring but I am transitioning from PV to Acute Myeloid Leukaemia and I am waiting for a hospital bed so that I can start a course of intense aggressive chemotherapy. Until then I think that I still qualify for this forum.
Although I am not one of the “old hands”, I was diagnosed in 1998 and have been on monthly venesections and 10.5 grammes of Hydroxycarbamide a week for practically all of that time, I recognise most of the side effects that have been posted recently; hair thinning, occasional insomnia, difficulty in keeping my weight under control, personality change, more skin cancers than I can remember and more recently heart palpitations. However, for most of that time I have lived a normal life, if you discount the hours spent in hospital waiting rooms!
I joined this forum because I was looking for help on living with an enlarged spleen. It seems that this is not a common problem and for most of my time my spleen was large but not enormous, it is now enormous and I am still taking Hydroxycarbamide (the wonder drug of the age?) in a bid to keep it under control.
In short, keep taking the tablets and you can live for ever.
My thoughts n prayers are with you friend
Dear patient friend:
You have been given a great challenge and prayers are with you.
I, personally have Never taken any oral meds for this disease and have had poly v
for 4yrs. with phlebotomies every other week. The only problem
concern for me is DVT (which I have had). I am in my senior years.
Are you able to get a Second opinion for treatment???
Sorry to hear that.
I have the enlarged spleen as well but after having a large amount of tumours (non cancerous) the spleen is not hurting.
Hope you get the bed soon so your treatment can start.
You joined the forum for a good reason and they seem to be fair objectives 2 me. WE are not personal buddies, you will be in my daily prayers and others have beat this illness or lived with it a lifetime. Just never give up and with all our prayers behind you I hope you fair well
BUG
I'm sorry to hear that you are in such a poor state of health. I wish you well for the future.
So sorry for your worse diagnosis. Did any of your meds cause this?
Please try prayer. I noted that this option has not been mentioned. i am in my
3rd cancer and through prayer and faith in the fact that I will be healed...I am
now in remission of two of them. I will also beat PV...without medicine
I have had PV for 3yrs. now and only had lab work followed by phlebotomies.
I had a strict diet of NO red meats, veggies high in iron e.g. kale, spinace and
I drink at least 50oz water daily plus walk as long as I can. I will admit that when
i do not follow my own regime I falter. I know you cannot do all of what I suggest
at this time...but at least start with faith in prayer. God Bless you...you will get
better...I am praying for you.