Have not really written very much on here of Late, sorry about that, but as some of you might remember my Daughter was diagnosed last year with Parosteal Osteosarcoma another rare cancer this time being a bone cancer, all be it this one being low grade and she had her Thigh bone removed and replaced with Titanium, she got the all clear in the August, to only find out in the November that it had gone to her lungs, which was not supposed to of happened and being low grade but it had which devastated us all especially her with such a young family, anyway, a year later they have moved to Marston Magna in Somerset life is good so much space and fresh air and last week starting two new Trial drugs at the Sarah Cannon Research Institute in London, this all being sorted out by her oncologist Dr Strauss at UCL things moved really quickly for her.
They have had good results with these particular drugs one is Talazoparib and the other is a new one being trialed world wide PR-3500 which she will start this one tomorrow. The only down side even though they have had amazing results is that they can cause another cancer this time a blood cancer, and other side effects which I am a bit concerned about but as there are so many drugs out there for us with an MPN that if it does she will have to take one of our drugs but keeping fingers crossed that this won’t happen.
Anyway I just thought I would let you Lovely Peeps know how she is doing.
I myself still have antibodies, and bloods have been good, considering all the stress that I have been under.
So here’s wishing you all a Very Happy Christmas and Lets hope next year will be better for all of us, and that Covid takes a hike over the hill too far, far away.
Love
Jean 🤶🏻
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Hi Jean, , yes I recall your daughters story and I also remember thinking at the time how lucky I was bearing in mind age , type of cancer , treatment etc. I'm very sorry to read about the progression after the all clear when you must of of heaved a huge sigh of relief. I sincerely hope the new drug works well without complication and she goes into remission for many years to come. Who knows she may be able to indulge in a glass of cider if things calm down. I truly hope so. As for yourself it sounds like you're doing well in spite of your stress levels which is understandable and I admire you for your resolve and keeping going in spite of everything.
Hope you can push your troubles aside to have a Happy Christmas. And I too hope that the dreaded Covid does one.
Hi Chris, thanks for your kind words, you yourself have been through so much the last few years, and are admired for your strength and courage, even when your eyes were all swollen, but you prevailed.Just hoping that these trial drugs find a cure for people with rare, silent and often terminal cancers especially Sarcoma’s.
Wishing you and your family the best for Christmas and the New Year.
Thank You. I must admit Jean there were some tough times along the way and I know you know through the struggles your lovely daughter is having how draining it can be for all concerned. As you say let's hope new developments will provide answers and even if not curative will prolong lives so many more will reach old age. Wishing you a Happy family Christmas. Take care x
Dear Jean, it’s great to see your post. I’m sorry about your daughter. It must’ve been so incredibly upsetting. I am amazed at doctors in two different countries being able to coordinate her care. And her new home sounds like an idyllic location. Stay strong & remember to take care of yourself. Happy holidays. Katie
Hi Katie, Dr Strauss, is a actually in the UK she is the sister of Andrew Strauss the cricketer, and is one of the top oncologists on rare lung cancers.Brilliant woman.
Somerset is such a wonderful place, so hoping she will get to enjoy it for many more years to come.
Wow, you’ve certainly had a rough year with your daughter. But it sounds like she is getting great care. I truly hope that her new treatments work and that she beats this cancer, once and for all. She sounds like a fighter, like you. Merry Christmas!
Sorry to hear about this turn in your daughter's struggle with cancer. She and your family will be in thoughts and prayers. Hopefully the new meds will be effective. Glad to hear she moved into a place with a better lifestyle. That really matter too when battling cancer.
I am glad to hear you are doing OK with your own health journey. Stress is certainly not conducive to our own management of a MPN.
Wishing you and our a Merry Christmas and all the best in the New Year.
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