Kidney Cancer

[Annette46]

Hi every body I have stage 4 kidney cancer and had my right kidney removed 2years and 3 months ago is there anyone else in this situation I have pain at the bottom of my left side of my ribs I have spots on my lungs and will have ct scan soon, has any body have cancer return after surgery how long was it

[Budgie]

Hi Annette46

I have stage 4 Kidney cancer as well.  Was diagnosed in August 2012, had my right kidney & adrenal gland removed in the September of that year.  Unfortunately, with kidney cancer, once it has metastasized you're stuck with it.  There is no real remission.  

While I have alot of deposits, I have been lucky enough to have all my other major organs free from any spots, except my left kidney. It has quite a few deposits in it as well.  

Recently, a deposit in my left bottom jaw has been growing alot, so I'm to have 5 sessions of radiation on it starting tomorrow.

What treatment are you on?  I have recently started on the immunotherapy (Nivolumab).  So far, I can't tell if it's working or not as apparently, it can take a few months before you see any benefits (if it's going to work for you).

Anyway, we shall see how it progresses.

Budgie

[Annette46]

Hi Budgie

First of all good luck with your treatment tomorrow and I am gratefull you amswered my blog I was thinking I was on my own I know people have kidney cancer  but where are they I know the road ahead is not goong to be easy I have had no treatment as yet as the cancer has not returned I have a ct scan in the next couple of weeks but have alot of pain in different places around my ribs and head so I have a feeling there may be bad news how long before your kidney cancer metastasized after surgery and are you able to live life and still do stuff I am a bowler and dont want to stop playing and besides it keeps me sane.

Annette 46

[Budgie]

i was diagnosed through a lump which I had removed from my neck, so it had already metastasized for me. I had the lump removed in the August then the right kidney & adrenal gland removed in the September.  I then started on the drug Sunitinib.  I have since been on 3 other drugs which have kept me going for the last 5 years.

I don't look like I have cancer, except for the large lump protruding from my jaw 😉 but I do still get out & do things.  My husband & I travel quite a bit, though sometimes it has been hard.  I've had quite a lot of fatigue associated with the drugs, but now I'm off the oral chemo & have the fortnightly injections of Nivolumab.  At the moment, I am feeling better for it.  I hope it continues that way. 

Budgie

[Annette46]

Hi Budgie

How are you ? how is your treatment progressing I have taken note of the Sunitinib and Nivolumab that you are on and see what my oncologist says when I see him in May if not before I must have my ct scan soon I keep putting it of fear of what they may find maybe nothing but I keep thinking its comming back one day. So I have had my blood test to see what my kidney function rate is as they dont give you the dye if its too low mine last blood test was 44 which is good I sometimes think I dont have time for this crap I just want to live and do things I enjoy so I have 2 busy weeks playing bowls which takes my mind of everything because I am too busy concentrating  hope you are ok nice to know we can chat every now and then and see how we are going cheers

[Budgie]

Hi Annette,

Don't put that scan off!  It might pick up something, yes, but it would be better to treat it sooner rather than later.  If something is found in the scan, see if you can bring your appt with the oncologist forward instead of waiting for May.  Three months can be a long time with cancer as it can grow quickly.  Besides, if the scans are clear, then you can sit back & relax, or play bowls with a clear mind.

It looks like my treatment on Nivolumab isn't working for me.  I have more scans next week to make sure.  Then I might be lucky to be put on a sample drug called Cabozantinib.  It has just been approved by the TGA for use in Australia.  It's not on the PBS yet though, so hopefully it will be soon.  Fingers crossed.

Take care & enjoy your bowls.  😊

[Annette46]

Hi Budgie 

Sorry I have not been in contact I went on a holiday and had my scans a couple of weeks ago the scan picked up that the cancer has metastasosed and returned in my T10 in my spine I have an appt with my oncologist on Tuesday  I am not expecting good news . How have you been going are you ok are any of the drugs working ? you were trying a new one out last time we spoke called Cabozantnib do you know if it is  helping. I am still playing bowls and will keep doing so while I can just have to wait and see what I am told  I suppose. 

Regards

Annette46

[Budgie]

Hi Annette46

Good to hear from you, although I’m sorry that it’s not such good news for you.   

My treatment on the Canozantinib has been a good thing, but it has come with a cost.   I started on 60mg on the last day of Feb & by 4 weeks into it, my tumours had shrunk a lot.   By the 6 week stage though, I couldn’t eat much as my mouth had become so sensitive, & I had lost 5 kg in 3 weeks.  

So now, I have dropped the dose down to 40mg.   So far, so good. 

As I re-read my Previous posts, in one of them I said that I had a bone met in my left jaw..... must have been a big chemo brain moment for me, because it’s actually in my right jaw 🤣

Anyway, if you feel okay with it, please let me know the outcome of Tuesday’s meeting.  

Take care Annette. 

Budgie

[Budgie]

I forgot to ask how was your holiday?
Where did you go, and I hope you had a wonderful time.

Budgie

[Lonely1]

Hi Annette. My name is Steve. I'm 58 years of age, and I was first diagnosed with Kidney Cancer in 2008. I had a Right Radical Nephrectomy very shortly after the diagnosis and I was told by my specialist that he was confident he'd left no trace of it behind. In 2013, routine follow-up scans showed another tumour in my left kidney, and I had a partial left nephrectomy. In sept last year, scans showed several tumours in each Lung and one in my Pancreas. The biopsy showed them to be all related to the original RCC. Apparently Chemo and Radiation have little to no impact on renal cancer, so I'm being treated with a drug called Votrient. I live alone in Littlehampton, SA, with my recently fostered four legged little friend. I've been separated for around 8 years now and I'm feeling very alone in all this. I'm unable to go back to work at the moment due to the side-effects associated with the medication. I also suffer depression and that hasn't helped me one bit. I'm so very sorry to hear about your situation, but at the same time it's comforting to know there's someone I can relate to who can understand just how hard this is. Warm regards, Steve