Stage 4 Bone Met at 4 months Post Nephrectomy
Comments
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I got the results of the
I got the results of the biopsy today. As suspected, it is confirmed to be a RCC bone met. The PET scan, as well as the bone scan, show no other mets. My new Dr at Stanford wants to start me on radiation therapy ASAP.
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Radiation and Xgeva
Radiation and Xgeva worked for me. I got the use of my arm back.
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Thanks all for the best
Thanks all for the best wishes. I think that I am finally getting to the point where I've had enough of feeling sorry for myself, along with the "why me?" attitude. These are difficult feelings to overcome, but I can see how they can get in the way of my progress. I'm ready to close that door and move on. As I said, I will be starting radiation therapy soon. Also, I am meeting next week with Dr Srinivas, the head of Urologic Oncology at Stanford, to speak about advanced treatment. In the evenings, instead of having a pity party for myself, I'm browsing the KCA website, watching the videos from the 2016 conference, and learning about the latest treatments. I've decided that I am going to fight this thing in a big way. I will not go down easily!
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Update: I met with the
Update: I met with the radiation Dr today, and he recommended holding off on radiation therapy. The main reason is so I am not excluded from any clinical trials which may be available at this time. The fact that the bone met is small, there are no other visible mets, and I have no pain (it's not a weight bearing bone) had bearing on his decision. I'm completely in agreement with this. If I had come in with several mets and a lot of pain, then the plan would be different. Next week I meet with the Dr to discuss the trials and immunotherapy.
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Sounds to me like they mightrwmiller56 said:Update: I met with the
Update: I met with the radiation Dr today, and he recommended holding off on radiation therapy. The main reason is so I am not excluded from any clinical trials which may be available at this time. The fact that the bone met is small, there are no other visible mets, and I have no pain (it's not a weight bearing bone) had bearing on his decision. I'm completely in agreement with this. If I had come in with several mets and a lot of pain, then the plan would be different. Next week I meet with the Dr to discuss the trials and immunotherapy.
Sounds to me like they might be going for the abscopal effect. Good luck.
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Plan
It sounds like you have a good plan but keep an eye one the bone met mine spread quickly. You might want to discuss with your ONC about doing xrays periodically through out the treatment in key areas where mets spread just to make sure that nothing is spreading.
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The plan is not finalizedmrou50 said:Plan
It sounds like you have a good plan but keep an eye one the bone met mine spread quickly. You might want to discuss with your ONC about doing xrays periodically through out the treatment in key areas where mets spread just to make sure that nothing is spreading.
The plan is not finalized until next week. But I'm sure they will perform periodic scans. I'll be sure to mention it though, just in case.
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But I don't think it will beFootstomper said:Sounds to me like they might
Sounds to me like they might be going for the abscopal effect. Good luck.
But I don't think it will be radiation. I think it will be immunotherapy. I'll know more next week, after my next appointment.
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Radiation Therapy it will be
I met with the head of Urological Oncology at Stanford yesterday. After analyzing my case, and some discussions, we decided to proceed with radiation therapy. Today I was prepped for the therapy, which will begin on Dec 27, and will occur over 5 days. The radiation will be high dose
We looked into clinical trials, and there were none available at this time for metastasized RCC.
I am optimistic. The doctor said that my chances of a positive outcome are higher than average, due my good physical condition and only a single met site. Let's hope that's the way that it plays out. Thanks to everyone for your support and best wishes.
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That's...rwmiller56 said:Radiation Therapy it will be
I met with the head of Urological Oncology at Stanford yesterday. After analyzing my case, and some discussions, we decided to proceed with radiation therapy. Today I was prepped for the therapy, which will begin on Dec 27, and will occur over 5 days. The radiation will be high dose
We looked into clinical trials, and there were none available at this time for metastasized RCC.
I am optimistic. The doctor said that my chances of a positive outcome are higher than average, due my good physical condition and only a single met site. Let's hope that's the way that it plays out. Thanks to everyone for your support and best wishes.
That's great news, RW. All the best for the therapy.
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It's All Very Baffling
Hi. I just joined the club and your case sounds much like mine. I went from having treatable Kidney Cancer to no cancer (after having the kidney and cancer removed) to having metastasized Kidney/Bone Cancer in all about three months. I'm actually still going through it and haven't even had a needle biopsy yet, but am due to have one next week. It's all so new to me I'm not even sure about all the technical terms but I am getting encouraged by some of the stories I am reading.
I wish I could offer some encouraging words but since I'm in the middle of it I can't, only to say you are not alone!
Kevin
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Hi, KevinWhatIsLife said:It's All Very Baffling
Hi. I just joined the club and your case sounds much like mine. I went from having treatable Kidney Cancer to no cancer (after having the kidney and cancer removed) to having metastasized Kidney/Bone Cancer in all about three months. I'm actually still going through it and haven't even had a needle biopsy yet, but am due to have one next week. It's all so new to me I'm not even sure about all the technical terms but I am getting encouraged by some of the stories I am reading.
I wish I could offer some encouraging words but since I'm in the middle of it I can't, only to say you are not alone!
Kevin
Kevin,
Yes, baffling, indeed. Both our cases do sound very similar. I must say it was quite a shocker when I learned of the metastasis, but it's good to know that I'm not alone!
Yes, the terminology can be confusing. Don't be afraid to ask your Dr to clarify anything. Get a copy of all your test reports, and google any of the terms that you don't understand.
Kidney cancer runs in my family. My Mom, 2 uncles and 2 cousins have had it. All except 1 were diagnosed early, and all had nephrectomies (kidney removal). None had any metastasis (cancer spread) until 10 or 15 years later. I am the first to have this misfortune. I'll be undergoing genetic testing early in 2017, and hopefully that will provide some useful information for my 2nd and 3rd cousins.
I start targeted high-dose radiation therapy soon after Christmas. I'm hoping, of course, that this treatment will successfully kill off the tumor, and no recurrence, and be done with it!
Good luck with all your treatment. Please start a thread of your own, if you haven't already. There are lots of great folks on this forum who offer support.
Roger
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Let the Radiation Therapy begin!
Hi, all,
Today I had my first high dose radiation treatment for the met in my pelvic bone. It was totally painless, and the procedure went fairly quickly once they had me aligned properly under the machine. I have to say, the equipment was very "futuristic" looking, and I felt as though I was the subject of a science fiction movie...lol. They talked a little about the potential side effects to the skin, but in my case it will likely be minimal, since I was getting a full 360 degree rotation for treatment. I have 4 more treatments to go. I am keeping a very positive outlook. Thanks for all your thoughts and prayers.
Roger
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Those machines always remindrwmiller56 said:Let the Radiation Therapy begin!
Hi, all,
Today I had my first high dose radiation treatment for the met in my pelvic bone. It was totally painless, and the procedure went fairly quickly once they had me aligned properly under the machine. I have to say, the equipment was very "futuristic" looking, and I felt as though I was the subject of a science fiction movie...lol. They talked a little about the potential side effects to the skin, but in my case it will likely be minimal, since I was getting a full 360 degree rotation for treatment. I have 4 more treatments to go. I am keeping a very positive outlook. Thanks for all your thoughts and prayers.
Roger
Those machines always remind me of something from the original series of Star Trek. Rather good fun. All we need is a Kirk "Engage" or a Picard " Make it so" to compete the illusion. It really shouldnt be to hard to manage.
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Hey Roger, glad you here with
Hey Roger, glad you here with us! Sorry I am late to this post of yours. I just wanted to offer you support and a warm, welcoming HUG!
I am NED (no evidence of disease) 3 years but care about the folks here so I stay to support anyone I can.
Hugs to you and yours,
Jan
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Or a Dr McCoy "wand". Wave itFootstomper said:Those machines always remind
Those machines always remind me of something from the original series of Star Trek. Rather good fun. All we need is a Kirk "Engage" or a Picard " Make it so" to compete the illusion. It really shouldnt be to hard to manage.
Or a Dr McCoy "wand". Wave it....then...."You're cured".... Of course, that would be preceded by curses directed at 20th century barbaric medicine...lol
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Hi, Jan!Jan4you said:Hey Roger, glad you here with
Hey Roger, glad you here with us! Sorry I am late to this post of yours. I just wanted to offer you support and a warm, welcoming HUG!
I am NED (no evidence of disease) 3 years but care about the folks here so I stay to support anyone I can.
Hugs to you and yours,
Jan
Nice to meet you. Congratulations on NED after 3 years! Thanks for the hugs and best wishes. The folks here have been just awesome! Happy Holidays!
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