BOB JK My diary of kidney cancer (to be continued)

Hello all am on getting update from everyone, glad you had a good break, Faye. Ros I think Sutent does cause hair thinning as my mother's hair has got significantly thinner since starting Sutent. We recently got her CT scan results and there has been no progression of tumours in kidneys and lungs since last scan in January, as she is on a low dose of Sutent we were not expecting any shrinkage and no growth was good news. However the Consultant said "we would like to have another look at the area in the thigh bone" - we had not been aware that there was any cancer in the thigh bone and apparently this had showed up in the January scan! My mothers care has been excellent but I was not pleased at this lack of communication. She has had an x ray of this area and is awaiting results. She is now on day 8 of a further cycle of Sutent and is tolerating it remarkably well this time. She had also been quite tearful and depressed and a month ago the GP put her on a mild anti-depressant, this has worked well and she is now taking an interest in things again, which is great.

My dad who was diagnosed with Non Hodgins Lymphoma in February had been doing really well on his first 3cycles of chemo with no side effects at all, however his fourth cycle has hit him hard and he is not well at all at the minute. A few weeks ago, all our focus was on our mother, now it has switched to our father. My brother and I are finding all this very hard as prior to October we had fit healthy parents and their lives have changed so much with scans and hospital appointments now dominating. This site is a great help, though, so many people in the same situation. Take care, all Jan

Hi Fay and Jan

Thank you for your replies. I am also due to have bolld test next week and I gather it is to check a variety of things, ammenia being one of them. apparently Sutent can cause this. I think its a good idea to share what drugs we are all on. and also any side effects from them by being taken in conjunction with Sutent. I will start a new thread for this

I am nearing the end of my first week off after my third cycle and so should feel better soon. Does anyone else suffer with aching joints. This seems to have been my main symptom this cycle and I am not sure if its a side effect or what. When I was first diagnosed I was given an injection to the shoulder as that joint hurt so much and its this pain that keeps comming back along with others. I am due to see my local doctor next week.

Today im off to buy a new computer base as I seem to have overloaded my old one and it no longer works.

Hope you all have a good day and Andrew, if you have access to a computer I hope you feel better soon

hi all, thank you for answering my querie. i think its a wonderfull idea setting up a thread for sutent side affects. ant has had not so much aching but gets very stiff and walks slowly and stiffly, as if holding himself. he looks so stiff bending down. these, i guess is from his joints. it varies with each cycle. this is day 8 of this cycle and i find its about after 1st week the syptoms worsen. he is at school this week and has been energetic, just looking very white. i too thank my lucky stars for our appeal to have sutent be granted. i think ant is the only child on it.

thats good news jan, that your mums tumours have not gotten bigger. ants have remained the same at last two scans. its disappointing at first but thankfull no spread and its keeping at bay. what strength does your mum take?it must be so hard for you having both parents so ill at the same time. keep strong, even tho its so hard at times, i am sure your brother will keep u sane and visa versa.
much love ros

http://share.macmillan.org.uk/Share/Forums/?topic=1005349 This is the shortcut to discuss Sutent side effects

Hi Bob and Ros,
Thanks Bob for setting that thread up, i hope people benifit from it.I dont suffer from joint ache but like i said in the new thread i dont know if its down to all the tablets im on.
Is Andy ok Bob ive not seen any messages from him .
I have a blood test every time i go to the hospital, is this the same with everyone, i know they check for a lot of things.
Im of to bed now, love to all and a big HUG to Ant, Ros, sweet dreams Fay.

Hi Jan,
I just want to say love and best wishes to you, your brother and your Mum and Dad. I cant imagine how difficult things must be for you, i hope your Mum continues to have sucess and your Dads condition eases so he is more comfortable. Night night and God Bless Fay.

Hi to all

Another bad nidgt last night and spent most of it awake as I could not sleep.I feel a bit better this morning and kate has just gone round her friends to get ready for the race for life. We will be going soon to watch her. Indeed my proudest moment, Good luck katie.

Hi Bob, sorry you had a bad night. Good luck Katie xx

Hiya Bob

Can I just say that I have spent that last 2 yours or so reading your story.. Your a brave man.. My best friend Jane has a sarcoma and is under The Royal Marsen (Professor Judson) Jane is termianlly ill now which came to a massive blow to us all as she was under the impression her cancer would be livable and she would have a good life.. So you can imagine how we felt when we were told she was terminal and that she wouldnt see past 5 years.. Professor Judsen said that 50% of the people with her sort of cancer die within the first year.. She was told that 2 years ago so she is doing fine (touch wood)

Jane has 2 childen Jamie 17 and Adele 15.. And it was the most hardest thing I have ever done in my life by sitting there listening to Jane tell her children she was dying.. I told Adele about her mum and it broke my heart telling her..

By you writing your story on here is a great help to other people.. I will look up on Sutent and see if that can help Jane.. Or maybe mention it on her next hospital appointment..
Please give Katie a hug from me and tell her that she is a ery special and brave little girl.. And your wife aswell.. Sometimes people forget about the people who go through this battle with you

My thoughts will always be with you and your family Bob
Be Blessed
Samantha xx

Hi Bob,
Sorry to hear youve had a bad night, why dont you ask the doc for a mild sleeping tablet, i think it may help. Good luck to Katie for tomorrow, i can imagine how proud you will be, my thoughts will be with you and i hope the sun shines for you all, my best wishes Fay.