Well a very quick update.
Steve had a reasonable nights sleep and so did I.
However there is now a new complication. Steve’s right arm is getting worse.
He has now lost pretty much all movement in it and it is also affecting his hand. And it feels like it could be also moving to his leg.
Tom came to see Steve this morning, to explain that they are very worried about this. As their is little research on side effects of HD IL2, Tom can only go by his past experience with his patients and he has seen this happen once before.
The concern is that even now it may take a few months for Steve to get the movement back in his arm and if they give him the 5th dose then it could get a whole lot worse and could completely damage his arm, meaning he may never get the use of it back.
So now to decide.
Do you go for the 5th dose, to give Steve the best chance of killing the cancer and take the risk of loosing the use of your arm and maybe your leg or stop here and take the chance that 4 doses is enough?
Thats where we are………
Steves treatment is now on hold whilst he makes this decision. The Doctors and Nurses have said this is a decision that needs to be made by Steve. Tom went on to say, that in medicine then protocol is if your unsure then don’t do it.
To be sure that it isnt anything else, like an infection etc, then Steve is having an xray in a minute and ideally they would like him to have an MRI as well but the machine in St Barts is not working today, as it is a maintenance day!!! So he would need to be transferred to the Royal London.
So for now no more doses whilst we work out the best next step. It is truly an awful position to be in, as Steve really feels in himself he could go on but is it worth the risk to his arm..................
Gosh, that's a tough one. Thinking of you both. x
ReplyDeleteSo sorry to hear about this new complication - yet another huge challenge for you both!! sending you lots of thoughts and positive vibes.
ReplyDeleteGen xx
Wish we could support you in person but we are following you day by day on your blog and hope that this feeling of support helps you both. Steve is one tough cookie! Loads of love to you both. I dearly hope we can make it down and meet up around Christmas time...and try out your new sofa!!! Take care xx Jeanie xx
ReplyDeleteI have just read this, sally. I am so sorry that you have been put into this situation. I can only send you both my warmest thoughts and love to you both.
ReplyDeleteI am always around for you.
Love Selina and Fraser.
Thoughts and prayers are with you both, whatever you decide! Stay strong - wanted to give you a hug last week Sally when I saw you but didn't get the opportunity, sending a virtual one now. Dina
ReplyDeleteCatching up from zurich!!
ReplyDeleteAnother tough week and what a day for you, thinking of you both.
Wendyx
I also failed HD-IL2 in April of this year. My several lung nodules all grew somewhat. I have been having cryoablation every 3 weeks since October to kill all the individual tumors. I had a choice of this or going on Sutent.
ReplyDeleteAsk your MD about cryoablation and also RFA ( radiofrequency ablation). These procedures only kill the existing visible tumors. New ones probably will crop up and can be dealt with with ablation in the future on an as needed basis. If there are to many, then Sutent would be next.