Stage 4 Bone Met at 4 months Post Nephrectomy

13

Comments

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #42
    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.

  • hardo718
    hardo718 Member Posts: 853 Member
    edited December 2016 #43
    God Bless you Roger

    I'll keep you in my prayers.

    Donna~

  • foxhd
    foxhd Member Posts: 3,181 Member
    #44
    radiation

    has helped me immensely. I do things painfree that were impossible before. So thankful.

  • rhominator
    rhominator Member Posts: 233 Member
    #45
    Radiation and Xgeva

    Radiation and Xgeva worked for me. I got the use of my arm back.

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #46
    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!

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #47
    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.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited December 2016 #48
    rwmiller56 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

    Sounds to me like they might be going for the abscopal effect. Good luck.

  • mrou50
    mrou50 Member Posts: 389 Member
    #49
    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.

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    edited December 2016 #50
    mrou50 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

    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.

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    edited December 2016 #51
    Footstomper 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

    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.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #52
    It is amazing how each cancer

    It is amazing how each cancer case is SO different - and so many treatment options. I am sure they will find the right one for you!

    Hugs

    Jojo

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    edited December 2016 #53
    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.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #54
    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...

    That's great news, RW.  All the best for the therapy.

  • WhatIsLife
    WhatIsLife Member Posts: 38 Member
    #55
    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

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    edited December 2016 #56
    WhatIsLife 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

    Hi, 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

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #57
    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

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited December 2016 #58
    rwmiller56 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

    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.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited December 2016 #59
    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

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #60
    Footstomper 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

    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

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #61
    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

    Hi, 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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