Kidney Cancer

[Annette46]

Hi Budgie

It can get cold down your way I am up near Newcastle it is a beautifull day up here again today, hope to be going to watch my 9 year old grand daughter play soccer this afternoon because I think I will do all these things while I can, as we don't know what the future holds do we. So sorry you are in pain can you take any pain killers and are you still on Cabozantnib do you think it is working . I seem to be in limbo at the moment waiting for another bone scan to see if I have mestatic in my spine the only other way is to have an operation to remove that part of my spine and put a rod in my back also 10percent chance I could die not a nice thought is it . I have arthritis in neck, knees, spine so they say take Panadol getting old has it challenges and kidney cancer is no fun at all just have to keep our chins up and think there is someone worse of than me. I had a lovely Mothers Day had lunch with my son,his wife and 3 grandchildren my daughter was in Tasmania on holidays.  How many children do you have do they live close to you ? Till next time Budgie 

Annette46

[Budgie]

Hi Annette46,

I was born in Newcastle, & I love the beaches around the area. 

I have 4 children; 1 in Canberra, 1 in Brisbane & 2 in Adelaide.  So they are spread out a bit. 

I am still taking the Cabozantinib & it is definitely working for the soft tissue mets, but doesn’t seem to be for the bone mets.  I am taking painkillers, but I might have to up the dose to get some  control. 

I hope your bone bone scan comes up clear.  Even if it doesn’t & you have to have spine surgery, you have a 90% chance of it working properly. That’s pretty good odds.  😁

Take care

Budgie

[jesigirl87]

Hi Budgie and Annette46

My husband has been diagnosed with stage 4 kidney cancer in December and had his surgery in March this year. unfortunately he was found to be inorperable and there are no treatment options. We are looking for someone to connect with.

We also live in Newcastle/Lake Macquarie area

Jess

[Annette46]

Hi Budgie

Im sorry I have not been in contact with you lately  but I have been thinking of you lots and wondering how you are coping with you health and the drugs, do you have to take Cabozantnib every day?  I hope it is still helping and you and you have found relief  for the pain I really hope you are ok . We have had alot of rain up our way the last 2 weeks but today is beautifull and sunny so hubby and I went for a walk along the water and ots of other people thought it was a good idea also., it was really nice .  Have you been doing anything special ? the year is going so quickly and my grandchildren are getting older ir is it just me that is getting old who knows thats all for now .

Sincerly

Annette 46

[Annette46]

I am so sorry about your husband and his situation . We who have kidney cancer hope for a cure soon it is not one of the commom cancers and if he was like me I did not know that  I had it I was lucky they got it all when they operated nearly 3 years ago but the last nuclear bone scan shows it could be in my spine.  Does your husband go to the Mather in Newcastle to see the oncologist The Cancel Council may be able to give him some help there or see a councilor anyhow,. I wish you both all the best.

Annette 46

[Budgie]

Hi Annette

I’ve been doing well with the cancer thanks.  The soft tissue spots are under control at the moment because of the Cabozantinib, which I do take every day.  I’ve reduced the dose to 40mg because I wasn’t able to handle the side effects of the 60mg.   It was making my mouth very sore - too sore to eat. 

How are are things going with you?  

The weather here is too cold to get out & do much, so I haven’t been doing anything very special.   

I’ve had a single dose of radiation on my rib & it has helped the pain a lot. 

The main pain I’m getting now is in my knees - arthritis.   I’m waiting for a referral to a rheumatologist to see if that’s got anything to do with it. 

Anyway, as you say, we’re all getting older, unfortunately, time is flying by so quickly.  I have just found out though, that my eldest daughter is pregnant with her 4th babe.  It will be lovely becoming a grandma again. 

My other daughter has just become engaged to a very lovely guy.   So far, it’s been a good year. 

Take care Annette

Budgie 

[Budgie]

Hi Jess,

Welcome to this site, though I’m sorry it’s under such horrible circumstances for you.  I read your other post & know what you’ve been through.  

I’m surprised the surgery on your husband still didn’t go ahead, as they knew I was stage 4 before they operated on me.   Has it spread to other parts of his body?  

I am lucky enough to still be here nearly 6 years after diagnosis, but I think I’m an exceptional case as most of my mets are in soft tissue & not other organs. 

At the moment, I’m on my last line of treatment as there’s nothing more available for me after this drug I’m on, so far. Hopefully, something else will pop up towards the end of the year. 

Newcastle was lovely when I was growing up.   I’ve been back lots of times over the years & it’s changed a heaps.   The beaches are still beautiful. 

How long have you been there?

Budgie

[jesigirl87]

Hi annette

thanks for your reply. He did not realize he had kidney cancer until November last year when he was started getting symptoms of blood in his urine. 

He had some involvement with an oncologist at the Mater however they said nothing could be done so he hasn’t had any other treatment and was discharged home with the info that he will eventually get worse and die. So just biding our time.  

I have contacted cancer council and referred him for counseling 

[jesigirl87]

Hi Budgie

he went into the operation and half way through they abandoned it due to complications with bleeding. Apparently the tumour has spread to the surrounding tissue of his right kidney, with extensive tumour caking in the IVC wall up to the level of the liver. It was also wrapped around the portal vein as well. When they tried to cut out the kidney they almost lost him due to extensive blood loss so they stopped, controlled the bleeding and the stitches him back up. The small biopsy they took to see what type of renal cell carcinoma it was came back negative for cancer as they took the wrong part of the kidney. The surgeon said that due to the spread of the cancer they felt it would be a rare aggressive type of RCC that wouldn’t respond to any treatment so it wasn’t offered. 

I’ve lives in Newcastle my whole life. But love the beaches there they are the best 😀

[Budgie]

Hi Jess,

That’s an absolutely awful thing to have happen.  I am very sorry. 

You say you’ve got your husband referred for counseling, but don’t forget about yourself.  You both have some hard days ahead.  Please keep in touch here.   I will always have an ear for you.  I may not be able to offer much advice but I will certainly listen & be of any assistance I can. 

Take care

Budgie