Just an update on my Daughter. You may remember that I posted A couple of weeks ago that she also had been diagnosed with a rare cancer, it’s now called Parosteal Osteosarcoma and it’s in her thigh, everything is moving really fast for her and we are praying for a good outcome eventually, but it’s going to be a long hard road for her.
I was at hospital myself this week for bloods, but got the telephone consultation more or less as I got home to say that that although my platelets have come down a tad, if they are up over 450 in three months time they are going to increase my Hydroxycarbamide, I feel it’s all stress related, so have just got to calm down.
I also want to thank my lovely friend Maria (ponytail girl ) for all her support one amazing lady.
Love to you all keep safe.
Jean x
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What does one say at times like this? Become her advocate and study her condition. I love reading results from medical trials, books and learn from your daughter's medical team. Is there a hospital that specialises in Parosteal Osteosarcoma? I have never heard of it.
I have had ET Jak2 for many years. After about four years on Hydrea I don't think I have hit the under 450 indicator yet . I average at around 550 and I even had an iron transfusion.
So don't worry too much about the numbers. Listen to what your body is telling you and drink lots of fluids.
I think it would be a good idea to promote this rare bone cancer and a way could be by starting a 'Go Fund Me Page". Your daughter could link it to a blog she writes about her experiences, perhaps include photos and tips for youngsters with the same disorder. I will be your first supporter. Living in hospitals and dealing with specialist is expensive, any extra funds will help your family during this most difficult time. Rare is a word we use so readily, regrettably hers and your are.
in reply to
Sorry, that wasn't meant to go. I was doing a spell check in word and the post went. I had a husband with AL amyloidosis. My current hubby got non Hodgkin s lymphoma, a rare version of course that was in 2014, he is great now and of course we live with our mutations.
I love reading your posts. Keep us informed because we do share something, you are part of our family and we are all cheering you, your daughter and family on.
God Bless Anna
Love to you and your family Jean luv Lyn NZ. Meant to send this message on your last post. You have always been very supportive of me right from my diagnosis back in 2015. x
I am thinking of you and your daughter and family. It's a painful time of unknowns which must be so hard. I'd not heard of your daughter's rare cancer before but brief reading online made me hopeful for you as sources stated in adults these bone tumours are slow growing and slow to metastasize. I so hope that they've caught it early and that all will be well. Sending love and positive thoughts to you and your daughter 🙏
This is a hugely challenging time for all of you. Both you and your husband must be stressed beyond belief. I imagine the brave face you will be putting on for your daughter and grandchildren must be extremely hard right now.
Its so important that you remain aware of your own health issues too. I’m sure our MPNs respond in a negative way to stress. I do hope you’re receiving some additional support through family/friends. You know you can always share here too.
It’s the uncertainty with any cancer that feeds our fear and anxieties. It would be wrong to make predictions too; however, from what I’ve briefly read (reputable sources), the prognosis for this type of ‘slow growing’ cancer sounds very promising - if caught early. That doesn’t mean to say it won’t be a long road ahead. Have the Consultants discussed any of this with you? A good chat with the experts can often alleviate any concerns.
Hi Mary, I am in touch with the Sarcoma Nurses on their forum, they have been amazing and have said that I can also call anytime which is great. Although Laura has been given all their details at the moment she is trying to do it in her own way, but she will get in touch with them when ready.
In the meantime Laura has told me that she intends to do a blog of her journey, which knowing my daughter will be very funny and lighthearted.
Both you and your daughter will be in thoughts and prayers. Hopefully this is one of the low grade forms and they have caught this in time, before it could metastasize or invade the bone. Please do let us know how she gets along.
Do please remember to take care of yourself too. Stress can certainly cause changes that do not help your MPN. Do know that not all docs look to attain a specific platelet lab value in treating ET. Some focus more on symptoms and issues rather than numbers per se. Ultimately it is up to you to decide which approach is best for you.
No matter what, please know we are all pulling for both your daughter and you.
You are most welcome to whatever support I can muster for you...
I can but imagine, exactly what you are going through.
Our children are the most precious gift we have in life, I sincerely wish your daughter the very best outcome...
And for you all collectively as a family to get through this difficult time together with Love and Understandings, the Very Best Medical Intervention, and your daughter’s Courage will carry you all through..
Laura is one Remarkable Lady, full of Determination, Optimism and Love, which will help her during the coming weeks..
I’m sure her Blog will be both Inspirational, Warm with a touch of Humour for good measure..
Talking of Humour, you just made me giggle 🤣.
You got tangled up with my Username, I imagined myself back in the days, when I did have a
“ Ponytail “ oh how I wish I was that girl once again sporting my ponytail 😜
All very apt as I always had very long hair, which often went into a ponytail , when I changed direction and spun on my heels, my family would get lashed by my ponytail
Nursing my hair was always coiled up..
You were Very close to my Username...
“pontygirl”
I was born and bred in Pontyptidd, South Wales, although I have lived in England for 45 years plus, I consider myself a “ Pontygirl” also Tom Jones’s hometown..
Both my parents knew Tom, as a schoolgirl at a ‘Girls Only School aged 13 ish, Tom parked up near my school at home time, and got chased by hundreds of girls down
3 steep hills into the main part of town...
I hasten to add I wasn’t one of the girls chasing him..
Oh to be young again, with the knowledge we have now! 😊
Jean never any need to thank me, it’s my absolute pleasure to simply be kind, offer support and listen to whatever you want to say....
It sounds like you’ve raised a wonderfully resilient girl, and it’s clear even to a stranger like me how much strength, love and support she has from her supermama.
Would love to check out her blog if you don’t mind sharing a link? Rooting for you all x
Thinking of you and your daughter. Glad to hear things are moving fast for her. Such a difficult time for you all. Hope your platelets settle down soon. Take care xxx
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