topic Re: Kidney Cancer in Living with cancer

Kidney Cancer

Annette46 — Sun, 21 Jan 2018 08:24:25 GMT

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

Re: Kidney Cancer

Budgie — Mon, 22 Jan 2018 01:01:41 GMT

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

Re: Kidney Cancer

Annette46 — Mon, 22 Jan 2018 03:39:10 GMT

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

Re: Kidney Cancer

Budgie — Mon, 22 Jan 2018 21:26:30 GMT

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

Re: Kidney Cancer

Annette46 — Sun, 04 Feb 2018 04:56:37 GMT

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

Re: Kidney Cancer

Budgie — Sun, 04 Feb 2018 23:25:39 GMT

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. 😊

Re: Kidney Cancer

Annette46 — Sun, 29 Apr 2018 04:03:50 GMT

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

Re: Kidney Cancer

Budgie — Mon, 30 Apr 2018 08:26:35 GMT

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

Re: Kidney Cancer

Budgie — Mon, 30 Apr 2018 08:30:11 GMT

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

Budgie

Re: Kidney Cancer

Lonely1 — Tue, 01 May 2018 07:07:05 GMT

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

Re: Kidney Cancer

Annette46 — Tue, 01 May 2018 09:49:40 GMT

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

Re: Kidney Cancer

Budgie — Wed, 02 May 2018 01:19:18 GMT

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

Re: Kidney Cancer

Budgie — Wed, 02 May 2018 02:02:18 GMT

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

Re: Kidney Cancer

Lonely1 — Wed, 02 May 2018 03:36:26 GMT

Hi Budgie.

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

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. 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

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

Re: Kidney Cancer

Annette46 — Thu, 03 May 2018 01:25:33 GMT

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

Re: Kidney Cancer

Annette46 — Thu, 03 May 2018 02:06:32 GMT

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

Re: Kidney Cancer

Budgie — Thu, 03 May 2018 03:12:02 GMT

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

Re: Kidney Cancer

Budgie — Thu, 03 May 2018 03:21:54 GMT

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

Re: Kidney Cancer

Annette46 — Thu, 17 May 2018 04:02:40 GMT

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

Re: Kidney Cancer

Budgie — Thu, 17 May 2018 21:18:16 GMT

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