Thursday 14 August 2008

Still working....

Ok, I admit it - I chickened out.  I was going to allow myself 10 days break from Sutent but by day 8 I was starting to panic and by day 9 I caved in and started taking it again !  I know it silly but Im so worried about the tumours growing again during the break. 

Today I went back to see Dr P and it was complete mayhem in his clinic.  All the testicles were there as usual (I forgot to ask them where they all were last month) plus a load of prostates and quite a few kidneys.  This is the first time Ive met up with any other kidneys at clinic and I have to say they all looked pretty poorly.  They come from all over the midlands to see Dr P and a lot of them cant get funding from their PCT, and they certainly wont now.

The clinic was packed, standing room only, and was running about 3 hours behind.  Im fairly sure the kidneys were there because of the news last week of NICE's decision, a couple of them were in with Dr P for over an hour and came out very distressed.

The lovely WI ladies were bringing round tea and coffee and sandwiches - I was worried I would be there all night.  Fortunately Dr P's registrar, Jo, was there as well, asking if any patients would be happy to see her.  Few accepted, they all wanted to see Dr P.  I shoved my hand up quite happy to be seen by Jo, she knows her stuff.

We chatted for a while about how the past 8 weeks had gone and she was really impressed I had managed 7 weeks before taking a break.  My Hb is a bit low (not surprising) but that will soon be sorted out with a few juicy steaks and some spinach - nothing to worry about she said.

Then she examined my lumps.  And pronounced them all to be still shrinking - and they are 'squashier' which apparently is a very good sign. 

This is BRILLIANT news.  I could have kissed her !!

So its all been worth it, all the grotty days and sleepless nights.  Sutent is still working and whats more its working well.  I shall have a CT scan next month just to check my internal lesions are responding too, but the signs are very very good indeed.

She wrote me a prescription for another 6 weeks and said it was basically up to me to decided when I had a break - and they would see me again in 6 weeks.

So thats it - Im in cycle 5 now.  And Im feeling really well, just in time for our holiday to Turkey on Monday.

And how very, very lucky do I feel today.

 

 

13 comments:

Anonymous said...

You are lucky - and in more ways than those you mention.  I hope you have a fantabulous week sailing the Med.  :O)

Anonymous said...

Oh Happy Happy Day...I am so glad that you have been and seen Jo and that the news is good.  If I don't "see" you before have a lovely holiday in Turkey...hope that it will not be too hot...what part are you going to ?  I went many years ago with Mum to a ..then...tiny little place called Altinkum...now I believe a rather large holiday town...we did a lot of touring around to Kusadasi,(lovely jewlery shops there !!) and of couse Ephasis...what an amazing place that is...But a lot of walking ..thank goodness I had the push wheelchair at the time and some kind person offered to push it for my poor old Mum... but it was a never to be forgoten holiday... I am looking forward to hearing all about yoru trip when you get back,  Have a lovely time.
Much Love  Sybil xx

http://journals.aol.co.uk/sybilsybil45/villagelife/

Anonymous said...

I am so happy for you!!!

Have a wonderful trip!!!

Love,

Michelle

Anonymous said...

Glad to hear things are going good for you. {{}}
Sugar

Anonymous said...

Am very, very pleased for you Jane. Have a great holiday!

Anonymous said...

I am so happy for you ..
hugs
Sherry

Anonymous said...

Really pleased all is well keep going - my husband started cycle 22 yesterday, according to NICE he should not be still with us.  He was first diagnosed 4 years ago this month and having failed interferon started Sutent in March 2006. We must try and get our voice heard but I do not know how. We also know another lady that started the same time and is also doing well. Do have a lovely holiday and just all of you be positive -  Sutent does work.

Anonymous said...

jane missed  your last  2 entries            i cant help but  wonder,what  if  gordon browns  wife  got kidney cancer?  or one  of  our  other  so called  MPs           would  sutent   still be too expensive?    think not  hun.            i  am  so pleased things are going so well,   go and have a wonderful  holiday,lots  of love  mort xxxx

Anonymous said...

So happy to hear that you are feeling good and that the tumours all ok too.  You have a wonderful holiday.  Hugs, Tells x

Anonymous said...

im soooo happy for you . . . .have a GREAT holiday!

Anonymous said...

So pleased all is still going well Jane ..love Jan ,have a great xxxxxxxxx

Anonymous said...

Hi Jane, Fab news or what ..... well done for sticking with it, you've got some fight/courage in you girl thats for sure.       On a lighter note, i do giggle when you talk about the testicles...heheheheehe..... and now the prostrates and kidneys are joining in too eh ?   i get visions of all these 'parts' squeezeing into the waiting room - jus like that advert for spots when they squeeze into the taxi .....heheee
Have a fab holiday
Big Luv, Jaynee X

Anonymous said...

This is Fabulous news,,,,,,yay for you


Yasmin
xx