Peter scored a perfect 10hb today Wow the IV iron has really made a difference, he's had another infusion today he will continue weekly iv's until his iron stores are normal and holding. He commenced cycle 2 today had an ECG A and signed up for FGFR study pre-screening test on his tissue it takes 4 weeks but if Peters tissue has the gene then he may be suitable to trial a drug aimed at the FGFR gene, when he next has progression.
It is brilliant that the team are trying to keep one step ahead, Inoperable doesn't necessarily mean end of the line,
if Peter has his blood restored to normal we should be able to get out an about again.
We are staying at the hospital tonight as only just finished treatment, the blood transfusions booked for tomorrow have been cancelled As he doesn't need them. It feels like we may have turned a corner at last.
I even left Peter having treatment this afternoon and headed off to our room in the family quaters where I had a lovely siesta All in all a very good day
FormerMember
Three cheers for Peter, his hb and his iron stores!! I can fee the relief in your message, and I hope that you both had a happier and peaceful night's rest and are safely back home by now. Great to hear of good days - we all need a few more at the moment xx
Yes Tina a real phew.. day. we have just got home Peters tucked up sleeping off the journey and the sun is shining.
As you know it can be really difficult just holding on when this disease gets the upper hand, but it seems we may just have tamed the beast for a while.
I am thinking of you and D and hoping he continues to cope with third line and that you both will enjoy some sunshine days.
