Recent diagnosis

Hi

I'm also a newbie here , I was diagnosed with a MPN , Jak2 positive,  at the end of November 2021 and had a Bone Marrow Biopsy just before Christmas - still awaiting the results to determine Type  but commence on Oral Hydroxycarbamide with increasing doses after every blood test so far. I was a career woman and live alone so no partner to discuss things with and  find it difficult opening up to friends who all have their own lives to lead and I've always been a private person . Trying to stay positive but have the odd bad day when fatigue gets the better of me - happy to chat any time .

Thank you for your reply be lovely to chat, I moved to where we live now and I do not know a sole as I also have arthritis and spinal problems so find it hard to walk long distance. One of the reason I had to give up work too. This all sounds miserable but I am a happy person just get down now again.

Sorry to hear of your limited mobility due to other health issues,  it can't be easy for you. Making new friends in the covid environment is not easy at the moment. Do you live close to the grandchildren or are they a distance away?  I retired to this area  after 30 years of Army Service and know its not easy to fit in to a new community. I was fit then and joined the local bowls club and also tried U3A to increase my social network. Not done much with U3A but hope to continue outdoor bowls,  fatigue permitting when the season starts in April . That gives me time to get my head round this diagnosis, get used too the drugs  and work out how best to structure my day to allow me to participate in this leisurely sport.  We are all allowed down days now and again but I take inspiration from Capt Tom and  on waking hope "Today is a Good Day"

Hi there I also have mylofibrosis and was diagnosed 6 yrs ago, I am 53 yrs old.

I am Carl r and have an enlarged spleen 21cm.

I am being considered for a stem cell transplant and will know more next month.

I live in Glasgow Scotland x

Pleased to see some posts on MF and wish to ask those taking Hydroycarbamide of any side effects they may be experiencing. My platelets have been creeping up for some time and are now close to the level when oral hydroxycarbamide will be prescribed. Having a reluctance to taking any pharmaceuticals your feedback may help me to make a decision. 

Hi Loveaflower

So sorry to hear that you have had to join us, I was diagnosed in March 2015 with myelodysplasia. I'm also sorry to hear that your husband is finding it difficult to cope but if I can offer you some crumbs of comfort I have heard of that a few times before, even the occasional husband in tears most of the time.

Of course it's bound to be a great shock for him and you of course, let's not forget that. Hopefully he will come round and end up being a rock for you.

Meanwhile though you're most welcome here. People who are dealing with cancer themselves are often the strongest shoulder to lean on. 

Take care and stay safe Lovraflower

Tvman x

Hi I have been on Hydroxycarbamide since my diagnosed in April and I have had no side affects and bloods are stable and spleen has stayed at 17cm . Hope this helps 

Don’t be afraid to share with your friends. I also live alone  and far from family but I shared my diagnosis with friends and they have been supportive and by asking the results of the many blood tests I feel less alone with the outcome.

Thank you, it does help. 

Thanks I have confided in a couple of close friends who have supported me over the festive season as I came to terms with my new normal.