Afternoon my MPN friends. Well had my three monthly review with my Haematologist last week, and glad to say that my Platelets have come down with the increase of Hydroxycarbamide by one extra tablet a week so good news there.
We have had some devastating news this week regarding my daughter, which some of you might remember me telling you about last year, she was diagnosed with another rare cancer Parasteal Osteosarcoma in her thigh and had a big operation to remove the thigh bone and quite a bit of muscle, and replaced with a titanium rod from the hip to the knee and that all went well, they got clear margins which was good unfortunately she still walks with crutches due to not being able to have face to face physio, but is now with Macmillan, Tottenham Football Foundation for physio for twelve weeks.
Well two weeks ago she had her three monthly CT scan on her lungs due to the fact that they found some tiny nodules before her operation but would just monitor, unfortunately she was told this week at the Stanmore, that there are some more, and the main one has grown. So now she has been referred to the Brompton Hospital for a biopsy under a Doctor Sandra Struss from UCLA in London, to see if she will now need Chemotherapy, understandably she is very frightened so am I, we were told that this type of Sarcoma rarely spreads to the lungs plus they got clear margins, but they think she is one of the unlucky ones and it has, we are just hoping that as the thigh was low grade these nodules will also be low grade.
The sad thing is they have sold their house and are going to move to Somerset as everything was looking good and just wanted a better life for the children, my Daughter has just turned 40 and we thought she now had the rest of her life in front of her, how wrong of us to think that way, as you never know what’s round the corner do you.
Anyway my friends just felt I had to write something down for me as being shielded like we are I have no one to talk too well other than my Hubby and twin sister who lives just round the corner from me, have not been able to see my daughter since last year, and I know you are all in the same boat with shielding, Covid has a lot to answer for, I just want to be there for her and to take some of the fear for her.
Sorry to of gone on, hope you are all doing well, and counting the days until we are released.
Jean
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Superwoman
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No it has nothing to do with my ET at first I thought it might of been but have been categorically told that it has nothing to do with my ET, completely different type of cancer hers is what they class as soft tissue, she found a very large lump in her thigh and was told she had pulled a muscle they got it wrong.
If she had, had ET she would of gone on to lead a near normal life span, this cancer is completely different. Don’t be afraid for your children you will be around for them for a very, very long time.
I hope to find all the strength that is needed for this period of time. It will most likely be a low grade again. And the fact that is small is a good thing. When will you know what type or what therapy will she need?
Hi superwoman so sorry to hear your news nothing worse than knowing your children are unwell doctors can do wonders now with all sorts of treatments let’s hope you can meet up soon take care .
Hello superwoman - I am sending all the positive thoughts and wishes I can in the hope that your daughters investigations will show low grade. Very best. Anne-Marie x
Oh Jean, I am so sorry you are having to go through all this and not be able to see your daughter. We just want to be there for our children with a hug and support don’t we. Hopefully she will get some good news and you will soon be able to see her.
Hi Jean , , I'm very sorry to read about this traumatic turn of events for your daughter and hope that her biopsy is more positive.
It's so difficult in these times when you need to support your loved ones but can only do it at arms length. I think now that the jabs are being rolled out at a pace they should permit those that need close contact with family in times of real need such as yours to do so.
I know Chris, she has asked if she is entitled to have the Covid jab, but the receptionist at her doctors practice said no, not yet, although she has got friends who have diabetes and asthma and are younger than her, and they have had their first dose, just wondering if the Brompton might insist she have it before she goes in for the biopsy.
Just keeping our fingers crossed for her, and that they find it’s all low grade again, but if it’s not she will have to go down the chemotherapy route.
I am so sorry to hear about your daughter. I know what you mean when you say you just want to be with her and absorb her fears. I have 3 daughters of my own and gladly take on any stress and pain that they are experiencing. I hope that you will soon be together and that her results can be dealt with quickly and effectively. Sending love and strength to you all
It is good to hear your platelets have gone down. Please know I am holding your daughter and all of you in my prayers. Sarcoma is a tough one to deal with. Covid makes dealing with anything that much harder. ♥️🙏🏻♥️
It must be terrible Jean not to be at your daughters side when she needs you most. Hopefully it will turn out to be good news and she won't need chemotherapy and with the vaccine rollout moving at the pace it is and restrictions being cautiously lifted soon, it won't be too long before your reunited and be there with her to give her your full support and love. Fingers crossed that time comes soon. Tina.x🤗
Hi Jean I am so very sorry to read about your daughter’s health problem - a nightmare fir you both - I do very much hope she gets good results any that you can see her soon. My thoughts are with you
Hi Jean I am so sorry to hear that your poor daughter now has more health problems to deal with. I really hope it turns out to be low grade and can be dealt with easily. You must be frantic with worry.
So sorry to hear about your daughter, it makes it even more stressful when you can’t be with her. At least it was being monitored and is going to be treated. I pray for all of you. X
Oh Jean I'm so sorry to hear this change of situation for your daughter. How frightening for you all! I remember so well when you first posted that a mass had be found in her leg. She's done so well with dealing with an such awful situation, with such hope of a full recovery and so I truly hope that she is able to overcome this hurdle too. Thinking of you also as I know all the fear and anxiety are yours as well as hers. Sending positive thoughts for good new! 🙏🏼 Orla xx
Hello Jean, I just wanted to send you my support, it sounds as though you and your family are really having a difficult time. I have three children and worry about them so how you must be feeling I can only imagine. Try to take one day at a time and please keep us informed how you are getting along.
What a heavy load you carry, and Covid makes everything so much worse.
Your daughter sounds like a real fighter from what you have said before. I hope these nodules turn out to be low grade, and the likelihood from what you say, is they probably will. Let’s hope any necessary treatment required will be imminent.
Please keep us updated, and the forum is here for you.
Thank you all for your support, it made me feel so much better just by telling you all what we are going through as a family, just wish we could turn the clock back it’s so very sad. BUT no I must look to the future for her sake and just hope to god that she has a good outcome, it’s just the waiting and not knowing that is so painful.
It’s the worst feeling to have a loved one who is ill and not being able to see them, especially a child. You can take comfort in the fact that she is not alone, and hopefully, you can visit soon. Sending my thoughts and prayers that this newest development is not so bad, and that her treatment goes well.
Will add your daughter to the prayer list. I hope the next round of treatment will be successful for her and for you. Please do stay in touch and let us know how things unfold.
How hard can life get for your daughter and for you too Jean. I cannot think what to write to comfort you .We have not seen our daughter for over a year,
I have worried so much...yet I know she is well enough ,what you must be going thru is just unbearable,I can only wish you strength and good results for your daughter. Keep as strong as it's humanly possible. You are both in my thoughts ,sending Very Best Pensees Chaleureuse.The Fr is the only way I can send to you that I really mean .Sally
So very sorry to hear this news. Hopefully it will be low grade and they will get it dealt with quickly. We know how awful you must be feeling not being able to see and be near her just now. Love and prayers. Fran xx
So sorry to hear your news Jean. It must be so difficult not being able to see your daughter. Hopefully we will soon be able to see our families and you will get good news about the biopsy. Thank you for sharing with us. Sending a hug Sally x
Dear Jean, I am so sorry to hear this news, I am sending you love and virtual hugs to you and all your family, particularly your daughter. Best wishes, Maz x x x
Best wishes to you and your daughter - I hope that the results of her tests will be the best possible, to be followed by quick and successful treatment.
I hear so many sad stories like this , but I will say keep positive and keep strong for your daughter as everyone is different and hopefully she will get the treatment she needs and get the all clear .
Life's so hard with all this covid you must be finding it so hard not being able to see your daughter .
Take care
Tracey
Hi Jean ... I am so sorry to hear that your daughter is dealing with this ugly disease and the fear and you for having to go through this with her. I wish you all strength and a miracle or two would be nice. You don’t need to apologize for going on ..... this is the right place for you to get out what you need to, we will listen and I send prayers🙏🏻
My apologies for having to take such a long time to come say hello...
My Big RIDE is all about to take place and between that, & RIDING really long training days, and taking care of my old mum... I am so Time-poor right now...
Very sad news about your daughter, and naturally I am wishing for her the very best possible outcome...
Glad you are managing to have your Platelets back under some semblance of control too...
Incidentally, at the present, I have recommenced taking Methotrexate (MTX), to suppress my unwieldily Platelets too... However, I am currently awaiting a Paper from a Prof. here in Australia I was recently speaking with about a different way of managing Platelets, and particularly their 'Stickiness' and that problems that can often ensue etc... (?)
It's coming by 'Snail-mail' but I will manage to scan it at some point and if there is anything I feel is of interest for everyone else... well, naturally I will Post about it all etc...
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From a concerned and worried mum.
ET questions for my 16 year old daughter
