Coping

[jimjam]

Hi,
How can you put into words the devastation that invades your life when your partner is told they have Kidney cancer.
I knew absolutely nothing about this type of cancer 18mths ago, but simply thought that it was dreadful news, but an op may cure it and then some Chemo to sort the rest out. It doesn't work like this does it!

It has been a long journey and a steep learning curve finding out that this type of cancer responds to very little, but harder to cope with when new medications are denied. I cannot come to terms with the fact that there are extremely well paid public servants playing God with peoples lives and patients are made to feel worthless and not worth the money spending on them. It makes me even more angry when there is a very, very large budget allocated for tattoo removal of all things, how can this be life threatening?

I find it very hard to be strong for the whole family at times, putting on a brave face when inside you are at breaking point, but someone has to be strong don't they. This is where this forum will be very useful for carers to purge themselves of any anger and frustration by talking to others in the same situation and sharing any info they may have.
I will also like to state that I absolutely hate the government and NICE for the way they have dealt with end of life drugs.
God forbid any members of their families succomb to this dreadful illness. I hope they have answers ready when they reach the Pearly Gates, (thats if they go upwards)
best wishes to all

[SER]

Jimjam,

My husband is on his fourth cycle of 50mg Sutent. Besides watching the BP carefully, the worse side effect has been the "chills" shaking he does, that doesn't seem to be associated w/fever, infection or anything! He has a sore mouth, which makes eating painful, and tastless. He says everything tastes grainy and like "saw dust".

I make him eggs when his mouth feels the worse. Even ice cream feels "grainy" to him. We try different supplement drinks, but he has to choke down any of them because they don't taste good to him. He's loosing weight, fortunately, very slowly...but steadily none the less.

His cancer is not shrinking or growing. His is in the muscles. Since his cancer cells are Papillary, I have been trying to zone in on other PRCC patients for informataion. Sutent is not the best drug for Papillary, and the only other drug is XL-880, a clinical trial drug which we can't get!

Frustration,

Good luck, and hope you and your partner is coping.

Sarah
"When the world says, "Give up", Hope whispers, "Try it one more time."

[Jackie]

Hi Sarah
You can get a gel from the doc to coat the mouth whilst on sutent it has helped me when my mouth is sore and tender and makes food more palatable. It's called gelclair, may be worth trying! I resort to soups mainly, cooled and desserts such as rice pudd. jelly and ice cream! Each month differs but I've had sore mouth and throat most times! I also use a berry toothpaste from Lidl as mint ones are too strong even the kids ones!
I'm just on my 6th cycle of sutent next scan due monday! First scan showed remarkable response shrinking all 9 tumours in remaining kidney, both adrenal and lung!
Hope this helps.

Jackie

[Wildcatisland]

Hi Sarah and JimJam

P is on his fifth cycle of sutent, he's had very few side effects (a slightly sore mouth and some blisters to his hands where there is scar tissue) and amazingly, they finally seem to have decided that it has stabilized the cancer (papillary, type unknown to me). However, it has affected his white blood cells drastically, and he's now been dropped down to a lower dose (37.5). As one tumour has been growing, even though the other has been shrinking, I'm personally not feeling too optimistic about this - and as I've posted elsewhere, there are no drug trials going on in the UK for papillary RCC, except the one Deb linked to, which P is already excluded from having taken interferon and sutent.

Jim Jam, I know exactly how you feel about being strong for the family, P and I have a four year old daughter, and our current problem is finding a school to suit her. Before diagnosis a year ago, this year was to be spent developing P's business, having another baby, and moving house. Now I'm working short hours to take up the slack at home, there is very little money spare, another baby is a pipe dream and moving house is becoming a necessity, but the money isn't there to buy what we want. Added to which my mother has incurable breast cancer, lives at the other end of the country from me, and my only sibling lives in Russia.

Moan over.

Emma