April 2020
7 Kudos
Hello all. I think most people start thinking about the things they'd like to do with their remaining time as they get older, and for those of us whose cancer treatment is becoming no longer effective, it's very much in the forefront of our minds. Spending time with friends and family, perhaps travel, helping others less fortunate are some that spring to mind. Kidney cancer and I go way back. I lost my right kidney to cancer in 2008, part of my left in 2012, and was diagnosed with metastatic renal cancer in 2017, so I've had plenty of time to think about these things. My oncologist tells me I have around 12 months left. (That was over 3 months ago) Very near the top of my bucket list was seeing a lot more of this beautiful country of ours, and having accessed my superannuation benefit due to terminal illness I bought myself a beautiful big caravan and 4 wheel drive. Unfortunately I only managed a few days away with my little dog before the corona virus restrictions began to come into place. Even then, being a fan of free (bush) camping I thought I'd be ok. Now I find that in South Australia even crown land is out of bounds. Regardless of the fact that I'm completely self-sufficient and it's just myself and my little best mate, I can no longer carry out all I had planned for my final few months of relatively good health. Ah if only I knew a shady little spot by the river where I could throw in a line, relax and bother no one ... and vice versa. I'm sure there are others in a similar helpless situation. If so, I'd love to here from you. As the saying goes, a problem shared is a problem halved ... or something like that. Warm regards, Lonely1
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August 2019
Hi Annette, Thanks for your reply. I hope you're travelling ok. It's been a long time since I've visited this forum and yes, a lot has happened since then. I sold my house around 4 months ago and moved into a rental to be closer to family, and to ease my financial worries. I've been on Votrient for almost 2 years now, and thanfully I've been coping with the side effects a lot better. I managed to rid myself of most other medications and it made such a big difference to my general health that I was able to return to work about 3 months ago on a part time basis. I've managed to work for around 5 hours, 4 days per week. Enough to keep the wolves at bay 🙂 I'm so very lucky to have such a supportive and accommodating employer. It seems the Votrient has run it's couse now as my last scans showed more tumors appearing in my liver. My Oncologist has recommended Immunotherapy, specifically Nivolumab as the next line treatment. Not sure quite what to expect as far as side effects. As you no doubt understand, it's a bit unnerving when you go through the list of possibilities. Anyway, I'm determined and hopeful I can still keep working. I very much hope this message finds you well Annette. Keep up the fight! All the best, Steve.
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May 2018
1 Kudo
Hi Kate I'm doing ok thanks. I had a rough week as far as the side-effects go, but I've been improving these past few days. I've been busy today trying to sort through my spare (junk) room. I intend to sell the house and move into a small rental. I really don't need the added stress of a mortgage and the upkeep here is a bit too much to handle. My second oldest is bringing ythe Grandkids up for a visit on Saturday. Really looking forward to seeing them all 🙂 Regards, Steve
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May 2018
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
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May 2018
1 Kudo
Hi. 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 (golf ball sized) left nephrectomy. In September 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 Pazopanib (Votrient.) I live alone in Littlehampton, SA, with my recently fostered four legged little friend Digby. I've been separated for around 8 years now and I'm feeling very alone in all this. Being a shy teen, I married the only girl who ever showed any interest in me, but as the years went by, I became incresingly tired of her controlling ways and eventually gathered up the courage to leave her in the hope I'd find a better life somewhere out there. I thought I'd find that happy person that I once was. I was so very, very wrong. Unfortunately, my ex, the tough, unshakeable and stubborn type that she is, ruined me financially through the property settlement (bye bye bucket list! lol) and poisoned any friendships that I had before the marriage break-up. I have four wonderful boys, and though I'm so very proud of each and every one of them, they have become incresingly distant over the past 8 years. I was diagnosed with Depression about 4 years ago and have been struggling ever since. The therapy and medication has helped keep me going, but therapy alone can't solve all my problems. It can't cure stage 4 cancer or win me cross lotto I'm told Votrient will never cure me, but it can buy me time. I've had to deal with some nasty side-effects, but I had my first scans about six weeks ago and the tumours in my lungs have shown some shrinkage and the one in my pancreas doesn't appear to have grown. Great news! ... If only there was a cure for lonliness So if there's someone out there in a similar situation, it'd be great to hear from you. Everybody needs a friend. Especially through the tough times. Regards, Steve
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May 2018
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
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