Kidney Cancer

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Re: Kidney Cancer

Thanks Budgie looks like there could be a light at the end of the tunnel for you with the tumours shrinking in size thats great the only downfull is the side effects of these drugs  they are not pleasant are they?  some doing more harm than good My appointment today was positive the oncologist says that he can't confirm that the new spot is cancer and wants me to have another bone scan in 2 months to see if there is a change  so life goes on. My husband and I went down the south coast to see friends we visited Nowra, Bateman Bay and South Durras for 3 weeks it was great now back home to the grandchildrens soccer on Saturdays and my bowls with my friends. 

Annette46

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Re: Kidney Cancer

That's good news Annette46 - fingers crossed that it doesn't eventuate into anything.  

 

I like the South Coast - I have a few relatives in Bawley Point.  It's a very pretty area.

 

How many grandchildren do you have?  I have 3 - 2 girls & a boy.  Hoping for a few more within the next few years, if I'm lucky.  

 

Budgie

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Re: Kidney Cancer

Hi Steve, 

 

I hope you don't mind me replying to your message to Annette.  I also have terminal kidney cancer - diagnosed in August 2012, & had a radical right nephrectomy, & while I have had deposits in my left kidney, they have consequently shrunk, & I have no other major organs affected.  I have been very lucky.

 

How long have you been on the Votrient?  The main thing I remember about the effects of that drug  is that it caused all the colour pigment to leave my hair.  I ended up looking like an albino.  I was on the Votrient for 9 months before it stopped working for me.  Here's hoping you get better mileage from it than I did.

 

May I ask the name of your recently adopted friend & what type of friend it is?  I think everyone could use a little bit of unconditional love you receive from furry friends.  They make such a difference in people's lives.   I am sorry you are feeling lonely, but please remember you are always welcome to chat on this site & download as much as you need to.  Also, there are social workers, & counsellors you can make contact with through your local Community Health Nurse, or the Cancer Council.   Whoever it turns out to be, I feel that we all need someone in our lives to talk to.

 

I am now on my 6th line of treatment, the latest drug is Cabozantinib.  It's not on the PBS yet, but it has been recommended for listing.  At the moment I am lucky enough to get it on compassionate grounds direct from the drug company.  So far it has done a good job of shrinking the remaining deposits I have, although it's still in the early stages of being used for MRCC.  

 

Anyway, please keep in touch & let us know how things are going.

Take good care of yourself.

 

All the best

Budgie

 

 

 

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Re: Kidney Cancer

Hi Budgie.

Great to hear from you! And great to hear your tumours are still being kept at bay Smiley Happy

I've been on Votrient since November last year. My Oncologist started me on an 800 mg dose, but I've had to drop down to 400 mg due to elevated Liver Enzymes. I also had constant headaches, nosebleeds, diahorreah, naesea and fatigue, high blood pressure and constant stomach pain. I'm coping much better now on the lower dose, but I'm still left with the fatigue, stomach pain and the occasional diahorreah and mild headache, but the good days outnumber the bad. I'm aso feeling like an albino by the way. Smiley Embarassed Has your hair colour returned now?

My little buddy's name is Digby. He's a Bichon/Cavalier cross, about 8 years old. Having a male dog wasn't my first choice, but he needed a home as much as I needed a friend. Unfortunately he has a few behavioural problems. Apparently his owner suffered from extreme anxiety and agoraphobia, and I suspect he was never disciplined as he doesn't take too kindly to a gruff voice. But he's coming around. After a few disagreements, I think he's beginning to realise he isn't the boss around here, and we're now pretty much best mates. We both enjoy our daily walks and he's really good company.

I went along to a monthly meet with the Hills Cancer Support Group in Mt. Barker last month, hoping to find a friend, but unfortunately I was the only man there, and even though the women were very welcoming, they were all breast cancer survivors, and all very much older than me. It wasn't really what I was hoping for.

 Can I ask how long you've been on medications, Budgie? And how have you've been coping? I haven't heard of Cabozantinib but I'll google it later. I very much hope it continues working for you Smiley Happy

Anyway, little Digby is doing his best to let me know it's time for a walk, so I'll sign off now.

Thanks for getting in contact, Budge. You made my day! I look forward to chatting again soon.

Best wishes, Steve

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Re: Kidney Cancer

Hi Budgie 

iI have just been for my walk it is such a beautiful Autum day here and the Lake is like glass . I have 4 grandsons and 1 grand daughter and I really do spoil her she is only 9 years old, well that is what Grandmothers are there for , allways nice things to buy her. Can you tell me Budgie did you hair go back to its natural colour after you went of votrient  just curious as I have not heard of that one and the Oncologist did not mention that drug to me as a possibility .

Annette46

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Re: Kidney Cancer

Hi Steve I

I am so sorry about your cancer and  feeling so depressed our cancer journey is no fun at all , I agree with Budgie get in touch with the Cancer Council . Do you have any children and grandchildren living near you that you could visit I look forward to the weekends I like following the grandchildren playing sport and attending their school activities and I love playing lawn bowls and lots of walks. I looked up on google where Littlehampton was in SA as I have never heard of it sounds like a lovely place in the Adelaide Hills  amongst 

 the wineries  are you able to take a drive to these places I bet the country side is beautiful . Having a dog for company  is a wonderful idea and he will listen to your problems , sometimes I think they understand what we are saying. So take care Steve jump on here if your lonely and need to chat to someone again

Annetre46

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Re: Kidney Cancer

Hi Steve,

Yes, my hair colour returned not too long after stopping the Votrient. It's funny, but the next treatment I was on after that sent my hair into curls - almost overnight. That looked funny!

I'm sorry you didn't have much luck at the cancer support group you attended. There's a very big problem in society, they seem to concentrate on breast cancer & maybe prostate cancer, but you hear very little of the other "forgotten cancers". I was thinking that maybe if you want some male friends you could join your local Men's Shed. No one there may have kidney cancer, but I'm sure that someone they know would have cancer & might love to chat. Just a thought.

I've been on different medications since Oct 2012 - just after my kidney was removed. I've coped okay, but fatigue, & usually diarrhoea are the constant companions. Take each day as it comes.

Sounds like Digby was a bit of a handful at first. I'm glad you found each other. Take care.

Budgie
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Re: Kidney Cancer

It's wonderful that you have your grandchildren to spoil, & yes that's what we're here for - spoil them with love.

My hair colour did return not too long after stopping that drug, and then the next drug I took made my hair go curly, just on the back & sides. Looked really strange.

Votrient (Pazopanib) is, you could say, on the same level as Sutent (Sunitinib), as a first line treatment. It is supposed to have less severe side effects though. Sutent worked very well for me until I couldn't handle the side effects anymore, then I was put onto Votrient. It lasted 9 months for me.

Budgie
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Re: Kidney Cancer

Hi Budgie how are you? Are you ok I hope you are feeling well ,what have you been doing I don't know where you live but the weather here has been beautiful the sun is warm and the nights are cool. Are you still tripping around Australia and enjoying relaxing and seeing the sights. How was your mothers day? This is just a short blog just checking in to see you are ok.

 

Regards Annette46

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Re: Kidney Cancer

Hi Annette 46

 

I am near Canberra, so we’ve had a few cool days, though the sun is glorious when it shows. 

 

Mother’s Day was fabulous - I got to share it with 2 of my kids. 

 

Not doing so much traveling at the moment as I’ve had a flair up of arthritis in my knees which has been  very sore. 

 

Otherwise, I’ve been getting some pain in my rib from the bone met there.  So I will be in for a single dose of the ray gun next week to try & stop that pain. 

I had a bone scan done yesterday & it revealed an increase in the size of the met in the rib & the spot in my skull.  I’ve not had any pain from the one in my head yet so that’s a good thing. 

 

How are things with you?  I hope you had a wonderful Mother’s Day. 

 

Budgie

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