Thank you very much for all your advice on questions I should ask the oncologist, I wrote them all down and fired them at the poor guy!! lol
His first suggestion was Taxol, but he could see the state I was getting myself into and mentioned Vinorelbine. He did say that if I was going to have it locally rather than at the Marden it would depend on whether they would fund it or not (health authority) When I said no I wanted to continue my treatment with them, he agreed it on the spot.
I will be having 6 x 3 over 18 weeks and will be started after my holiday so in early September. You have chemo on week one, week two, week three is chemo free and then it starts again for six cycles. It’s a gentler chemo and there is less chance of complete hairless. The prof says I will probably loose some. I am also having 18 x herceptin. I have been given tamoxifen today which i have to take until the chemo and then start again afterwards. Then after chemo it will be rads! I will be having it all done at Sutton Marsden. I am feeling ok about it all and hope I remain that way!
I have taken my first tamoxifen today and am waiting to turn into a hormonal monster (hubby has been warned).
I also have an appointment with a Physcologist in two weeks time at the Marsden.
From the tone of your post it sounds as if you are now much more in control and able to cope than you have been over the past few weeks. i was realy worried about you when you got your last set of results, you seemed to have had everything thrown at you.
Glad to hear you sounding more like the girl that answered my first posts when i came on here completely wet behind the ears. The best ones always bounce back
Yes, you do sound a bit more in control - but great that you’re going to speak to someone. I’m trying to organise counselling at the moment too.
So glad you’re going to go on your holiday (AND be able to enjoy it now that you have a plan in place that you might not be overjoyed about - but isn’t as bad as you were expecting!). What’s the point of us going through all of these treatments if we can’t enjoy life like holidays.
Hope the Tamoxifen gives you minimal side effects. That’s another one that some people seem to sail through while other struggle. Hopefully you will be in the former camp!!
Let us hormonal monsters unite! Or maybe we should start some kind of self-help group for the poor blokes who have to put up with us. Mine has spent most of today putting a mega fan on wall beside bed.
Awww Old and Lumpy what a lovely thing to say. Thats really made me smile so thank you.
And yes sandytoes I do feel more in control tonight, I know its not going to be a walk in the park, but I also know that its alot gentler that was I feared and I have to remember that I am lucky to be getting herceptin along with the chemo, which not that long was a post code lottery as to whether it would be funded. So yes I am feeling happier and going to do my damnest to enjoy my holiday with my lovely family.
There was one sad thing that happened today. My poor mum who always tries to keep it together kept bursting into tears as shes been so worried about me and it totally broke my heart seeing her starting to cry and then pretend she wasnt crying bless her heart. Shes been through a rough time too with her bc and other serious health problems.
We had some lovely family news today, my sister is expecting another baby in January, a total surprise so something nice to look forward too!
That’s good news Jules and as the others say you seem much calmer now. It really is a relief when you “get your plan” isn’t it? Very pleased to hear you are having your holiday as well- that’s exactly what I did after the initial diagnosis. Re the Tamoxifen I was on that pending Chemo and the only SE I had was hot flushes and not too badly so you may be lucky too, I hope so.
Sorry your Mum is having a rough time maybe now you are more relaxed she may feel better too. And, what a lovely surprise that you have a new niece or nephew to look forward to.
Diana xx
Thank you ladies, and yes I do feel much more in control now.
Diana, I am really looking forward to meeting you next Friday at Waterloo. Sorry I went a bit quiet, but I was struggling a bit, but normal services have been resumed!
So glad to hear that you’re feeling like you’ve got some control back. All of this is so horrible and as a natural control freak one of the biggest learning curves I’ve had is to try my best to go with the flow and it’s not been easy for me.
I’m happy that you’re in a better place now, it’s all very tough on us, feeling like you have some say and that you understand what is happening and why is so vital isn’t it.
Thanks Kat, I do feel so much better today. Still feeling a bit anxious about the unknown, but a million times better than two days ago.
The Prof I saw at the Marsden was so kind, and really took into account all the stuff I have been through over the last year or so. He said down and instead of saying we are going to go X,Y and Z, his first words were how are you doing and more importantly how are you coping. I told him I had had two lots of bowel surgery, a hysterectomy and knee surgery in the months leading up to the cancer and that this bombshell last week was the final straw and I wasnt coping well and had been given valium and anti depressants from my doctor. He went on to say that my case was quite unusual in that most of the points of my cancer were ok, but it was the her2positive thing that changed it all, and that considering all the other factors it was quite unusual for me to have this bad part of it amongst all the other better parts of it and that was why it was causing such great debate etc. as it wasnt at all what would have been expected with my initial diagnosis.
Anyway taxol was mentioned first and my face literally hit the floor and he could see that I was getting really upset about it, so then suggested the vinorelbine which does not usually cause hair loss and seems to be an easier regime. He said you are what we call borderline, if it wasnt for the her2positive status you would not need chemo, but that is what changes the whole situation. He said we dont want to crack a nut with a sledgehammer so this I think will be the best option and will enable you to have the herceptin.
So yes today I am feeling a whole lot more in control. I am wondering how I am going to react to the Tamoxifen. I am almost sitting her expecting to turn into the incredible hulk lol
I really do hope your bowel and tummy are starting to get better, it sounds like you have been through the most horrendous time at the moment.