-
I'm new to this forum
What does "NED" mean? My story: my surgery (left partial nephrectomy via the da Vinci robot) was Oct. 5, 2012 and I was one of the lucky ones, Bob the Blob (as I refer to the tumor) was still barely encapsulated and my doctor was able to remove all of the cancer. Usually sometime around the anniversary of my surgery I go…
-
New with alot of questions!
Hi I am new here , I was having some gallbladder problems back in december so I went to the emergency room . I was given a ultra scan and was told possible stones. Well I followed up with a specialist who read the test and he said I had stones to schedule an outpatient surgey on jan6th so I did , well on jan 2, 2016 I had…
-
New to this
Had pain in right upper stomach and goes straight through to back. Went to gp and had ultrasound with showed only fatty liver. Still had pain so gp had ct with contrast and now it says 2.0x 1.7 cm heterogeneous enhanced lesion. Probable renal cell carcinoma. I am so scared and worried. I am a 56 year old female. Had no…
-
Still Cancer Free!!!
Had a really long day at MD Anderson. But, I'm happy to say I am 20 months cancer free! My CT Scan and Chest X-Ray were all clear. I go back in July for my last 6 month check up and scans then I go to yearly scans. YAY!!!
-
Question about Surgery
Good Morning, I received my surgery date of January 18th for the partial (or perhaps radical) neph and Cholecystectomy. Question - this will be an open procedure: does anyone know if it is stitched shut or do they use staples? Is one better then the other? I have read a lot, but have never seen anything about this. Doctor…
-
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…
-
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…
-
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…
-
Scan too soon or not?
Hope this finds you all well! In August I changed medicines and was scanned in November where I was told that the medicine seems to be working and that some if not all of my tumors were shrinking. After I got that wonderfully glorious news, I was told by my Doctor that I had too many scans in 2015 and need to space them…
-
Time for a change
This will be an interesting year. Having survived last years burden of pain and spinal canal mets is amazing. Weakness in my right arm and hand is still significant but it is also still improving. No one is aware of my neuro problem until I need to pick up something over a few pounds or when I need to tie my shoe or pick…
-
RIP David Bowie
If inappropriate thread the mods can remove it. Just woke up to the shocking news that he’s dead after an 18 month battle with cancer. Kept it secret amazingly enough. He was my youth and my idol and I saw every one of his concerts. I’m incredibly sad. RIP, Aladin Sane
-
One year scan results
I am one year out from my partial nephrectomy...stage T1B grade 3 removed from right kidney. I had my first set of scans a week ago. The only thing they found was a small 3mm focus of lew density on the right side of my liver near the dome. They recommended an MRI of the liver to check it out. My doctor doesn't seem very…
-
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…
-
Is it just me?
I often wonder if other people experience discomfort in their abdomen on the side of the surgery years after surgery or is it just me? My surgery was in Oct. 2012. The more anxious I feel about it, seems the more discomfort I have. Donna~
-
Starting the Journey
New to the forum...today. Just found out there is a 6-7centimeter mass on lower right kidney. did cystoscopy yesterday...not fun, and am going to pelviic CT in about 2 hours. Guess we need to look at that to find out if it's "encapsulated" , and other new words I'm learning reading your comments. Will be meeting with…
-
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…
-
2016
Happy New Year to all of my friends here on the kidney forum. Wishing everyone a happy and healthier New Year with many visits from our dear Uncle NED! Keeping everyone close in heart and thoughts. Nancy
-
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…
-
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…
-
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,…
-
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…
-
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.…
-
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…
-
Nivolumab/OPDIVO
My doctor is recommending that I switch from 800mg Votrient to nivolumab/OPDIVO. Any thoughts? Thanks.
-
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…
-
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…
-
Happy NED year
May we each have a Happy NED Year. Icemantoo
-
This process makes no sense to me. Any info?
July, hubby had what we thought was a UTI. He took antibiotics and it 'cleared up'. I'm air-quoting, because it obviously could not have just cleared up, but it seemed to. Four months later, another one that would not stop after three rounds of antibiotics, so his GP sent him for a CT. CT scan showed 10cm mass on right…
-
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!
-
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…