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Dancnbear Update
It has been a long time since I last posted but that doesn’t mean I haven’t been visiting the site and reading up on how everyone is doing. Reading how brave each of you has been and how hard you are fighting helps me to get through the day and so I must say thank you to all. With regards to me here is a quick update in…
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One kidney doing what it is supposed to do
I have been here in Florida 3 months so far. Now being followed by a new Nephrologist who I just saw for a follow up visit.. My GFR is up a couple of points (good) to 49 and my Creatine down to 1.5 (also good).. Not too bad for a 72 year young guy with only 1 kidney left. Following the Neph's advice on blood pressure,…
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Happy Holidays
Hey, all, Sorry I missed Christmas! Hope you all had a great holiday. Been busy here with the Jake-aggeddon. As you can see in this picture, Jake is going through treatment for bilateral clubfoot. He has casts on both legs and they get changed weekly to turn the feet back into the normal shape. I'm sure at least a couple…
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THE KIDNEY IS OUT
John went today to have the right kidney removed. We knew they were going to be taking the kidney, nodes, and adrenal, but there was a question as to whether the liver or colon were affected. We were told 4 hours good time for no complications, six hours if they had to resect any of the liver or colon. Just over three…
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Official Results
I thought I would update everyone on the official results of my CT scan, post what my primary care physician told me. My ONC confirmed what my primary said (I did not tell him I knew) The mets are growing again, and quickly. There are several forming up on my lungs with one that is already grown 3 cm in three months, my…
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New Votrient Clinical Trial!
Hi Everyone I'm back! Four weeks post op tomorrrow. Had liver lesion removed with success and a tumor on my right back muscle where former kidney lay. Technically right now I'm cancer. Because my oncologist said I have a very aggressive cancer I was selected to be part of a clinical trial just approved by the FDA for…
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Mamma and the meaning of life
It's holiday season and some might have free time to read, so why not this book by Irvin D.Yalom? It's a book consist of 6 short tales of psychotherapy, fist four ones are based on real people's stories The second story is named meeting with Paula, a metastasized breast cancer patient who has found her own version of…
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Differential Stress Resistance- Reduced chemo SE & weight gain
So I've been reading up on Differential Stress Resistance for the upcoming meds. In a nutshell, and I can expand and linky-dink if anyone wants, it's basically fasting for 48 hours prior to chemo. Normal cells will 'turn off' in the presence of no energy (no food) but cancer cells don't. So you're kind of putting your…
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Its Been a while.....checking in with an update
Hi guys, I haven't posted for a number of months mainly because I find it hard to talk about it on a regular basis. But I have 3 mets in my R lung one in the Hilar lymph node and a 3.25 cm one on my small bowel. I am in the 214 checkmate trial Nivo/Ipili vs Sutent and I received the sutent arm and have had 3 cycles so far.…
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Weird Day
My wife and I schedulted my results day a week after my scan on purpose to be after Christmas, since last year we found out that my cancer had returned on Christmas eve. I was watching football with my sons when my primary physician called she wanted to make sure I was okay and I said I felt fine and she said she recieved…
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4 year anniversary NED
Hi all quite sometime didn't login to forum,!today is 4 year anniversary NED! Wishing all merry Christmas and happy new year! Keep on fighting cancer!
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When do the Votrient side effects start?
I saw my Oncologist on Friday for my first visit since starting Votrient approximately 2.5 weeks ago. I would like to ask others who are on Votrient when their side effects started? My Oncologist was surprised that I have not experienced anything yet, however, I have read it can take up to 18 weeks before they start. Also,…
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1st Opdivo dose
My Mom (age 73) will soon receive her first dose of Opdivo after taking Inlyta for more than a year (previously Afinitor and Votrient). Her initial diagnois was in 2010, with lung mets in 2011. She may be receiving this every two weeks, so I'm wondering if we should ask the oncologist about a port? Any pros/cons to…
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Kidney Tumor located by veins and artery?
I was recently diagonsed with a kidney tumor. Right kidney 2 x 2 cm. Doctor feels it is indeed cancerous. They are looking to do surgery in January 2016. My concern is that they told me that it will need to be an open procedure as they are not comfortable with the laproscopic approach due to the tumor being so close to the…
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NED - Good News
Glad to announce my CT scan found nothing significant. Looks like I'll pass the one year mark since my adrenal tumor as NED. Terrific birthday present. Note to self: next time schedule the scan after birthday and the holidays not the day before. So happy to share good news with you all. NED for one. NED for all. That's my…
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Alternate therapy
Has anyone on this site seriously looked at alternate therapy ? Whilst still classed as stable since starting on the checkmate 214 trial in May,I am under no illusion that this will continue for ever. With this in mind I keep doing the google thing on this lovely topic and there seems to be a few seriously attractive…
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A curates egg
Got my scan results yesterday, and like the curates egg they were good in parts. Most of my mets are stable,but one enthusiast sod has increased by a third and is now 4cm, or the size of a thumb. I also need a hip replacement. The fact that thy want to replace my hip seems to indicate some faith in my longevity. Otherwise…
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Nivolumab/OPDIVO
My doctor is recommending that I switch from 800mg Votrient to nivolumab/OPDIVO. Any thoughts? Thanks.
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Trial report
Hey all - It's been a while since I've posted on the forum. There has been a lot of life issues going on that had to be dealt with. Anyway as for how I am doing. I just completed a year on the MPDL3280a plus Avastin trial. For the first few months of the trial there were few side effects and those were easy to deal with.…
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Inferior vena cava filling defects on CT
On my recent scan this was noted, 3 months after surgury and my being on votrient for 2 months. The are doing a sonogram to help determine if its a clot or possibly a new thrombus. feeding of direct access to the blood supply. Worries me because they removed a large thrombus from my IVC during my nepherectomy. Neither one…
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Nerve Damage/Muscle Loss following Surgery
Has anyone in this forum suffered with numbness, pain and/or muscle loss following their surgery for kidney cancer. Since my procedure in October I have been dealing with this and it is awful to say the least. I saw my urologic oncologist on Tuesday and he stated that sometimes nerves are accidentally severed during…
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is it linked?
My RCC was found in the spring 2012 and removed Nov 2012. At the time of diagnosis I was suffering from chronic intractable migraine. Migraines were better for a brief period but has been chronic and daily for over a year. I also have daily flank pain and pain in my spine. Could this be signs of a recurrence? Despite much…
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New to kidney cancer biopsy Tuesday
Hi, someone just told me about this board, and suggested I stop by. 13 years ago my Dad was diagnosed with colon cancer, had a colon resection, then colonoscopies every year for 10, then doctor said he could wait 3 years. 3 years later, colon cancer was back, so he had another colon resection this summer. My Dad had a LOT…
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Family Affair continues
Hello everyone, I've been so swamped this month and have very little time to get on her but I still think of you all and feel very reassured to know that you all are here. I'm excited to say that any day now I will be a nana for the 4th time!! First granddaughter!!! My son has recovered nicely and was back to work two…
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Sutent side effects schedule
John is being put on Sutent. I know there are side effects to be dealt with, but I'm trying to figure out if there's a general 'schedule' on which they happen after taking the drug. For example, does nausea happen, say two hours after? Diarrhea four hours after? I realize everyone is different, but if almost everyone who…
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1 year
So, had follow up with Urologist yesterday and there is no evidence of cancer. So, yay! It's been one year and that is a huge relief as you all know. There are multiple cysts on my remaining kidney, one of which is pushing 5cm. The septation is thin and he wants to keep an eye on it. He doesn't see any reason why it would…
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Changing from Sutent to Votrient ... Advice?
Original surgery in Feb 2013. I've been on Sutent since Oct 2014 when 5 mets showed up in my chest. The Sutent (plus radiation) effectively shrunk the mets until now. The old mets are either gone or stable, but one new one showed up in this week's PET scan. We're taking that as a signal that my cancer is becoming resistant…
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Radical nephrectomy recovery
I'd like to tell all of you "thank you". There are times I feel so alone and when I come to this discussion board, I know there are people that understand. I feel very alone in my recovery. I am not sure who to reach out to. Friends care but don't understand. My husband does the best he can. Recovery has been crappy. Prior…
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1year scan results NED
Just got out of the urologist appointment to get the 1year scan results and everything looks fine!! NED The 3 pulmonary nodes(3mm, 3mm,7mm) are stable. Next scan in six months!! Wine and steak today, pizza and beer tomorrow!!!! ;-)
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Always get a second opinion.
The doctor said, "The good news is I can cure your headaches. The bad news is that it will require castration. You have a very rare condition that causes your testicles to press on your spine and the pressure creates one hell of a headache. The only way to relieve the pressure is to remove the testicles." I was shocked…