New Kid on the Block
Well, 7/24/12 is gonna be my day of reckoning. I will be going under the knife @ USC's Keck Medical Center for left kidney, radical nephrectomy, and left leg fibula modification, due to metastatic Renal Cell cancer in the upper knuckle. It's going to be a 6-7 hour tag-team surgery in one OR. But, let me fill you in on the path to this point.
Late in January of this year, after returning from a weekend of target shooting, I was unloading my Jeep, and lost my balance, getting my left leg trapped between my trailer hitch ball and rear bumper. Fortunately, just before the lower tibia bone snapped, my left foot was leveraged off of the ground. I limped around for several weeks, performed the usual ice pack/ heating pad sequence, even purchasing an ultrasonic massager, in an attempt to repair what I could. All this offered no relief, so I began going to my GP doctor. An initial set of X-rays, proved inconclusive, so then it escalated to MRI's both with contrast and without, CT scans, again with and without contrast, then a PETscan,brain scan, and several pelvic CT scans, and a biopsy of the damaged left leg. Conclusion, a 4mm Metastatic Renal Cell tumor of the left kidney, that is blocking the exiting vein, and infecting that same vein. At this point, the cancer has not yet reached the aortic artery (thankfully), but in addition, the cancer has attacked the left leg fibula bone (apparently resulting from the leg injury. This is the medical communities, justification, but we think the fibula may have been infected previous to the injury).
Initially I was scared to death, but quickly overcame that, reading nearly everything that is medically accountable on line. I am thoroughly confident in the USC Norris Cancer Center staff, and at this point, just want this S#*T out of my body, so I can get on with my life, which includes RV'ing, off roading, hiking, fishing, and anything else outdoors. I am a contributing member of several RV websites, so posting is well understood. It looks like the RV is gonna be sitting high and dry for a while. I, (we), welcome any/all responses. Thanks for your time folks.
Comments
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Found out now
Glad to hear you found it early enough to deal with it! Most of these cancers are found out accidentally from another issue just like you did. I found mine when I had a kidney stone and after a CT Scan, they said, "...oh by the way, you have a mass on your left kidney". Mine was taken out with traditional surgery like you will have.
Be sure to keep updated with your progress!
Oh, and welcome to our club!
Bill0 -
New kid...
Hi Toolman,
Welcome to our exclusive little club, its not by invitation, you have to be special to get in, yeah right. At 4mm the met in your leg is pretty small and its good that they found it now, any estimate on the size of the tumor on your kidney? Keep a strong positive attitude, do what your medical team tells you, drink plenty of water, and you'll be back doing everything you love before you know it. Keep us posted and we'll help you through it.
Good luck and Godspeed,
Gary0 -
It is in fact, and I'm sorrygarym said:New kid...
Hi Toolman,
Welcome to our exclusive little club, its not by invitation, you have to be special to get in, yeah right. At 4mm the met in your leg is pretty small and its good that they found it now, any estimate on the size of the tumor on your kidney? Keep a strong positive attitude, do what your medical team tells you, drink plenty of water, and you'll be back doing everything you love before you know it. Keep us posted and we'll help you through it.
Good luck and Godspeed,
Gary
It is in fact, and I'm sorry if my statement was/is misleading, a 4mm tumor in my left kidney. Yes it is small, but the tumor blockage has cut the efficiency of that kidney to only 40% capacity. The fibula bone upper knuckle is completely engulfed in the cancer, and somewhere near the upper 2" of it is scheduled to be removed.0 -
Size?toolman1 said:It is in fact, and I'm sorry
It is in fact, and I'm sorry if my statement was/is misleading, a 4mm tumor in my left kidney. Yes it is small, but the tumor blockage has cut the efficiency of that kidney to only 40% capacity. The fibula bone upper knuckle is completely engulfed in the cancer, and somewhere near the upper 2" of it is scheduled to be removed.
Toolman,
My mistake on the location, are you sure it is 4mm and not 4cm? At 4mm it would be about 1/2 the size of a pea and hardly detectable where as 4cm is close to golf ball size, tumors are usually measured in cm's. Mine was 4.2cm found following a motorcycle accident over 2-1/2 years ago. The important thing is that it is small and a surgical "cure" is likely, but spreading to your lower leg is concerning and quite baffling, I can understand why they feel it could be related to the injury, very odd. Life with one kidney is not significantly different than life with two and I suspect the surgery on your leg will bother you more than the nephrectomy, good luck with both, we'll help if we can.
Gary0 -
Hello garym;garym said:Size?
Toolman,
My mistake on the location, are you sure it is 4mm and not 4cm? At 4mm it would be about 1/2 the size of a pea and hardly detectable where as 4cm is close to golf ball size, tumors are usually measured in cm's. Mine was 4.2cm found following a motorcycle accident over 2-1/2 years ago. The important thing is that it is small and a surgical "cure" is likely, but spreading to your lower leg is concerning and quite baffling, I can understand why they feel it could be related to the injury, very odd. Life with one kidney is not significantly different than life with two and I suspect the surgery on your leg will bother you more than the nephrectomy, good luck with both, we'll help if we can.
Gary
You stated;
Are
Hello garym;
You stated;
Are you sure it is 4mm and not 4cm? At 4mm it would be about 1/2 the size of a pea and hardly detectable where as 4cm is close to golf ball size.
You are exactly correct. My BAD! The tumor is roughly the size of a golf ball @ 4cm. (Damn metrics, anyway!)0 -
New kid
Wow, it never ceases to amaze me how many people discover they have RCC via an inadvertent accident. But I'm thankful you found it now and not five years from now.
Your accident does sound like a pretty painful experience. But I'm guessing that it had to be something BIG to get your attention since you took "weeks" to seek medical attention as it was. Anything less would have probably been dismissed as "no big deal". So on the positive side, I'd say you have a higher force in your corner. Cherish it!
May your operation and recovery be successful and quick!0 -
Get Well Soonalice124 said:New kid
Wow, it never ceases to amaze me how many people discover they have RCC via an inadvertent accident. But I'm thankful you found it now and not five years from now.
Your accident does sound like a pretty painful experience. But I'm guessing that it had to be something BIG to get your attention since you took "weeks" to seek medical attention as it was. Anything less would have probably been dismissed as "no big deal". So on the positive side, I'd say you have a higher force in your corner. Cherish it!
May your operation and recovery be successful and quick!
Toolman,
I hope your surgery goes well tomorrow. You will be in our thoughts and prayers. Just know that you have a supportive group of friends here to help answer your questions as your begin your recovery.
John0 -
NEWS FLASH!!adman said:God Bless
Sending you positive energy for tomorrow. You are in my prayers, my friend.
NEWS FLASH!
Althouigh I'm not back in the saddle (yet), I am at least standing next to the horse. I amazed all the doctors and nurses, being able to need only minimal meds at night, nothing during the day, not only getting up and walking to the bathroom on my own, but making a full lap around the ward, without assistance, the day after surgery! Even surprised myself! For anybody in the L.A. area, I wouldn't ever suggest another hospital other than the KECK Medical Center @ USC! EVERYBODY, from the surgeons, residents, and all the way down to the maintanence workers had the greatest of attitudes, and nothing but support. Never a harsh word from anyone.
We came home Thursday 7-26 @ about 5PM. I'm slow to move, but only because of the soreness in the ribs. Believe it or not, there isn't a lick of soreness or stiffness in the left leg, (go figure). The phisical therapist came in yesterday before I was released, had me go thru some rudimentary movements, had me walk down the hallway ahead of her (probably so she could check out my rearend!), but she was watching the action of my left leg, then told me that her work was done, and she released me from her portion on the release program. Anyway, I'm home, resting comfortably.
And PS. Thanks SO, SO, much for the support and kind words. Both Lynne & I were very touched by the support.0 -
Congratstoolman1 said:NEWS FLASH!!
NEWS FLASH!
Althouigh I'm not back in the saddle (yet), I am at least standing next to the horse. I amazed all the doctors and nurses, being able to need only minimal meds at night, nothing during the day, not only getting up and walking to the bathroom on my own, but making a full lap around the ward, without assistance, the day after surgery! Even surprised myself! For anybody in the L.A. area, I wouldn't ever suggest another hospital other than the KECK Medical Center @ USC! EVERYBODY, from the surgeons, residents, and all the way down to the maintanence workers had the greatest of attitudes, and nothing but support. Never a harsh word from anyone.
We came home Thursday 7-26 @ about 5PM. I'm slow to move, but only because of the soreness in the ribs. Believe it or not, there isn't a lick of soreness or stiffness in the left leg, (go figure). The phisical therapist came in yesterday before I was released, had me go thru some rudimentary movements, had me walk down the hallway ahead of her (probably so she could check out my rearend!), but she was watching the action of my left leg, then told me that her work was done, and she released me from her portion on the release program. Anyway, I'm home, resting comfortably.
And PS. Thanks SO, SO, much for the support and kind words. Both Lynne & I were very touched by the support.
Glad to hear you're on the road to recovery despite the medical staff sneaking butt shots!
Take care. Don't rush it!0 -
8/8/2012 Post Op visitalice124 said:Congrats
Glad to hear you're on the road to recovery despite the medical staff sneaking butt shots!
Take care. Don't rush it!
Spent the greater part of yesterday up at USC Med. Ctr. Orthopaedic surgeon removed all dressings from the left leg, snipped the ends of the subsoutures (sp?), checked the range of movement, answered all of or Q&A's and pretty much gave me a clean bill of health, (but still wants a 90 day follow-up). Then over to the Lab for some blood work the Urologist requested, and an hour later, a meeting with the Urologist. She probed and listened with the stethoscope, asked all the pertinent questions, answered all our Q&A's, and set up a conference with Dr. Quinn, director of the Norris Cancer Center, to discuss immunotherapy options, for 30 days from now. The Urologist wants more labs and another follow up visit in 90 days.
So for now, it's all about regaining my strength, walking, in time get back into the gym, and back to life as I knew it. My wife and I are so very grateful to all the knowledgeable people that have past through our lives the last 6 month's. There aren't words to adequately express our thanks. Stay tuned for further adventures.0 -
Great news....toolman1 said:8/8/2012 Post Op visit
Spent the greater part of yesterday up at USC Med. Ctr. Orthopaedic surgeon removed all dressings from the left leg, snipped the ends of the subsoutures (sp?), checked the range of movement, answered all of or Q&A's and pretty much gave me a clean bill of health, (but still wants a 90 day follow-up). Then over to the Lab for some blood work the Urologist requested, and an hour later, a meeting with the Urologist. She probed and listened with the stethoscope, asked all the pertinent questions, answered all our Q&A's, and set up a conference with Dr. Quinn, director of the Norris Cancer Center, to discuss immunotherapy options, for 30 days from now. The Urologist wants more labs and another follow up visit in 90 days.
So for now, it's all about regaining my strength, walking, in time get back into the gym, and back to life as I knew it. My wife and I are so very grateful to all the knowledgeable people that have past through our lives the last 6 month's. There aren't words to adequately express our thanks. Stay tuned for further adventures.
Great news, my friend. Glad all went well & you're doing great!0 -
Great news!!toolman1 said:8/8/2012 Post Op visit
Spent the greater part of yesterday up at USC Med. Ctr. Orthopaedic surgeon removed all dressings from the left leg, snipped the ends of the subsoutures (sp?), checked the range of movement, answered all of or Q&A's and pretty much gave me a clean bill of health, (but still wants a 90 day follow-up). Then over to the Lab for some blood work the Urologist requested, and an hour later, a meeting with the Urologist. She probed and listened with the stethoscope, asked all the pertinent questions, answered all our Q&A's, and set up a conference with Dr. Quinn, director of the Norris Cancer Center, to discuss immunotherapy options, for 30 days from now. The Urologist wants more labs and another follow up visit in 90 days.
So for now, it's all about regaining my strength, walking, in time get back into the gym, and back to life as I knew it. My wife and I are so very grateful to all the knowledgeable people that have past through our lives the last 6 month's. There aren't words to adequately express our thanks. Stay tuned for further adventures.
Toolman,
Sounds like you are a fast healer and I have no doubt you will be back to "normal" very quickly. Don't cha just love it when a plan comes together! That was one lucky fall, now go out and buy a lottery ticket while you're still hot.
Congrats,
Gary0 -
How did I miss this thread?garym said:Great news!!
Toolman,
Sounds like you are a fast healer and I have no doubt you will be back to "normal" very quickly. Don't cha just love it when a plan comes together! That was one lucky fall, now go out and buy a lottery ticket while you're still hot.
Congrats,
Gary
Good work! Keep up the forward progress. Attitude, attitude, attitude.0 -
Preparing for immunotherapies
9/11/2012
Hi, all. It's been seven weeks today, since the left kidney and left leg fibula head were removed. I have been getting stronger week by week, and as of today there is very little pain assiciated with the kidney surgery, and the left leg has never given me any problems, (go figure). I have been alternately walking 2-3 miles every other day, and on the between days, riding my mountain bike 3-5 miles a day. Endurance seems to be my only limiting factor when riding, getting winded fairly easily, but I assume that will improve over time.
My wife and I had a meeting with Dr. David Quinn, director of the Norris Cancer Hospital of USC Medical Center, last Wednesday, and he reviewed my case and wants to begin immunotherapy. But first, as in many of your cases, he will schedule several CT and bone scans that are scheduled for 9/13/2012, and then a follow up visit with Dr. Quinn the week after. I am holding my breath that no new lesions will have popped up, and that no further surgeries will be necessary. My fingers are crossed.
The 2 therapies that he is recommending for our consideration are Sutent, and Proleukin, both of which I have been reading about, and neither of which sound inviting. Both have UGLY side effects, but the Proleukin seems to have a better success rate.
So, any/all suggestions would be welcomed and considered. Thanx everybody. Gary0 -
Immunotherapiestoolman1 said:Preparing for immunotherapies
9/11/2012
Hi, all. It's been seven weeks today, since the left kidney and left leg fibula head were removed. I have been getting stronger week by week, and as of today there is very little pain assiciated with the kidney surgery, and the left leg has never given me any problems, (go figure). I have been alternately walking 2-3 miles every other day, and on the between days, riding my mountain bike 3-5 miles a day. Endurance seems to be my only limiting factor when riding, getting winded fairly easily, but I assume that will improve over time.
My wife and I had a meeting with Dr. David Quinn, director of the Norris Cancer Hospital of USC Medical Center, last Wednesday, and he reviewed my case and wants to begin immunotherapy. But first, as in many of your cases, he will schedule several CT and bone scans that are scheduled for 9/13/2012, and then a follow up visit with Dr. Quinn the week after. I am holding my breath that no new lesions will have popped up, and that no further surgeries will be necessary. My fingers are crossed.
The 2 therapies that he is recommending for our consideration are Sutent, and Proleukin, both of which I have been reading about, and neither of which sound inviting. Both have UGLY side effects, but the Proleukin seems to have a better success rate.
So, any/all suggestions would be welcomed and considered. Thanx everybody. Gary
Gary,
Since Proleukin is the only drug that has resulted in a complete response (though in a small percentage of patients), I would lean toward it.There are a number of people on this Board who are currently undergoing IL2 and several that have gone through it, and it's tough, but the possibility of a complete response is hard to walk away from.
While the chance of a complete response (cure) is under 10%, I don't think I've seen anyone post that they were sorry for giving it a shot.
I'm responding on the two options you mention above (Proleukin and Sutent). Another option you may wish to pursue is the MDX-1106 (BMS-936558) trials or combination trials. I believe those trials have been expanded recently.0 -
Alice;alice124 said:Immunotherapies
Gary,
Since Proleukin is the only drug that has resulted in a complete response (though in a small percentage of patients), I would lean toward it.There are a number of people on this Board who are currently undergoing IL2 and several that have gone through it, and it's tough, but the possibility of a complete response is hard to walk away from.
While the chance of a complete response (cure) is under 10%, I don't think I've seen anyone post that they were sorry for giving it a shot.
I'm responding on the two options you mention above (Proleukin and Sutent). Another option you may wish to pursue is the MDX-1106 (BMS-936558) trials or combination trials. I believe those trials have been expanded recently.
Thanks Alice. This week, I've been watching the thread from NanaLou with great interest re, her IL-2 treatments and side effects of same. I'm still on the fence here, but am ready to throw the kitchen sink at this disease. When initially informed of this RCC, I told all the Dr's, just get this S**T out of me, and I still feel that way. I guess the final decicion will be based on the results of the 2 scans taken last Thursday, and the recommendations of the medical director. I'm holding my breath and crossing all my fingers, that nothing new has popped up. We'll see tomorrow.0 -
New Kidtoolman1 said:Alice;
Thanks Alice. This week, I've been watching the thread from NanaLou with great interest re, her IL-2 treatments and side effects of same. I'm still on the fence here, but am ready to throw the kitchen sink at this disease. When initially informed of this RCC, I told all the Dr's, just get this S**T out of me, and I still feel that way. I guess the final decicion will be based on the results of the 2 scans taken last Thursday, and the recommendations of the medical director. I'm holding my breath and crossing all my fingers, that nothing new has popped up. We'll see tomorrow.
No matter your decision, we're here for you. Did you have a chance to go back and read Fox's early postings? He initially wanted to get into an IL-2 trial, but was redirected to the MDX-1106 trial and never looked back.
Keep us posted whatever you decide.0 -
I'm pulling for you!!toolman1 said:Alice;
Thanks Alice. This week, I've been watching the thread from NanaLou with great interest re, her IL-2 treatments and side effects of same. I'm still on the fence here, but am ready to throw the kitchen sink at this disease. When initially informed of this RCC, I told all the Dr's, just get this S**T out of me, and I still feel that way. I guess the final decicion will be based on the results of the 2 scans taken last Thursday, and the recommendations of the medical director. I'm holding my breath and crossing all my fingers, that nothing new has popped up. We'll see tomorrow.
Good luck on your results today, us Garys gotta stick together.0 -
9/19 updategarym said:I'm pulling for you!!
Good luck on your results today, us Garys gotta stick together.
Met with "the MAN" today. Good news is the "Bone Scan" came back clear, no problems. However..... CT found 2 new, 2mm nodules in the lungs. The rest of the chest and midsection are same, no change. So on Friday 9/21 I will begin 6 infusions (1 per month) of Zometa, to choke off the blood supply to any/all cancerous nodules, and it looks like on Nov. 4th, that "NASTY" IL-2 treatment will begin, and yes Alice, I did read foxhd thread. There aren't any local clinical trials in the L.A area at this time. Hard to believe huh? The Dr. is watching the results of those trials carefully. He is SO on top of all the cutting edge stuff. He amazes us! Anyway, we're gonna ""throw the kitchen sink" at this GD disease!
A BIG THANX, to all for the support. It's what keeps us ALL strong! Stay tuned.0
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