Monday, 7 July 2008


Its been a pretty rapid decline from the highs of last week, in fact I cant believe its only a week since we returned.

Since then Ive had a chest infection, which is at last starting to clear up with the help of some heavy duty anti biotics, plus the side effects of Sutent have really kicked it.

These side effects are cumulative, so each month they appear earlier and get worse.  My hands and fingers are so sore, having little blisters and sores all over them, especially on the tips of my fingers.  Constant application of Udder Cream doesnt seem to help, and nether does constantly having my hands in washing up water Ive found !

I cant eat much.  Im getting awful indigestion and reflux from anything other than very very bland food such as milk, yoghurts and rice.  I feel bloated and sick all the time and the acid that fills my stomach makes its way down and out and leaves me with a very sore bottom !

Im in week 3 of cycle 3 and the fatigue is getting worse too - a couple of weeks ago I was charging all over Europe (ok - not exactly charging !) and now Im exhausted after hanging the washing out.  I know this will get worse and next week I will spend mostly asleep.

Now Im due to have a break from Sutent the week after next but Im going to negotiate with Dr P. to change this.  As I was so well on the cruise, and that was week 1 of taking Sutent, I want to take it continuously and have my weeks break starting 11th August.  Which means that week 1 will be 18th August.  Which is the date we go to Turkey !  I know it will be a rough couple of extra weeks but it will be so worth it if Im as well as I was on the cruise.

I need to feel as well as possible for our holiday in Turkey because we are going on a Gulet (Turkish sailing boat) for a week - all 5 of us.  The whole family for the first time in years together.  This is something Martin has wanted to do for a while now and hes getting very excited about it !

Inspite ofall the horrid side effects the important question is whether Sutent is working ofcourse.

And yes - I truly believe it is.  Even on the tumours under my armpit this time.  The pain I was getting there during my weeks break went within 4 days of taking it again and they both have definitely shrunk.  Definitely.  As has the one on my head.

So all in all this is good news - Im seeing Dr P next week and hopefully he will confirm this, after all he has the last word on the matter !

In the meantime its banana milkshake for breakfast and a bowl of rice for dinner - a bit of a come down after the wonderful food I was eating on the ship - but thats fine, I have all that lovely Turkish food to look forward to soon !



sybilsybil45 said...

Well they alwasy say we have to pay if we enjoy ourselves so mcuh...but does it have to be so hard for you !!  well I should think not...but as you say you were kind of expecting it but I am not sure if that makes it any better...Keep going love and if you are sleepy next week just take time out. I am sure we are all praying hard for you...Much Love Sybil xx

sugarsweet056 said...

Sending good thoughts & prayers,

momiscool2 said...

I'm keeping you in my thoughts and prayers!!!!
Love and hugs,

spslack said...

I've found your blog quite by accident. Your postings are eloquent and heartfelt. As a mother of teenagers, our lives mirror in many ways. I too, am in week three (cycle 8) of Sutent, though far from you in the States. We are leaving for our family vacation soon, as well. I have been able to negotiate a few vacation breaks with my oncologist and am doing well with Sutent. All of my tumors are suppressed. When I had blisters, I was taken off for three days. They disappeared and have yet to return. That is standard practice for many on the oncologists in the US. I thought it may be helpful to share. All of us Sutent survivors have so much to learn from each other.

My very best to you.

jeadie05 said...

So sorry you have had a chest infection ,I do hope its alot better now,I do hope the Sutent continues to work Jan xx

faircolleen said...

Hope that your chest infection has eased up now.I loved reading about your holiday and you and your friend look lovely. . you look so well!

larryzzzz said...

SO sorry to hear how badly u`ve come down since ur ` Love Boat` experience Sprite ; the little aches and pains must all add up horribly for u. You make sure that family of urs takes the strain, u stay under the duvet on the `bad` days, and just dream of u all on the boat in Turkey, in ur Fezs`!!!! Good luck girl x

tattiblue said...

I too have found your blog by accident. My husband is just starting cycle 21 of Sutent
which I think is nearly a record. At times he finds the side effects hard to manage then the next cycle he seems ok. One thing he is sure of he has got to keep taking it as the results over the past two and a quarter years have been remarkable. He was one of the lucky ones in England who managed to get on an early trial.

mortonlake said...

those other comments must  give you so much  encouragement  jane       and  i can only  add             go  girl         hope like hell  your  holiday  is  wonderful  take  care  love  mort  xxxx

helmswondermom said...

It's good that you can see definite signs of the Sutent working, and I hope that makes the side effects easier to bear.  Hopefully you'll be feeling well for your Turkey trip.  Hang in there!