Stage 4 Bone Met at 4 months Post Nephrectomy

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  • mrou50
    mrou50 Member Posts: 389 Member
    edited December 2016 #62
    Roger

    Gland the radiation is going well that is good news, I have had fairly good luck with radiation.  Although recently one area radiated, my shoulder, was looking good post radiation and now the cancer is back and causing me some discomfort again but I was told that is not uncommon and I will probably get another dose of radiation in that area soon.

    Mark

  • WhatIsLife
    WhatIsLife Member Posts: 38 Member
    #63
    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

    I hope for you the best of luck!

    I haven't started any treatments yet but I expect that to change soon as when you were having your first high dose radiation treatment done, I was having a needle biopsy done, and even that had a futuristic feel to it. I'm glad you are keeping a positive outlook to it all, that's something I want to do, and I'm glad I'm not the only one who feels that way. I hope the side effects will be minimal for you, and all of us. Here's hoping the rest of your treatments go as well as this one did. Keeping you in my thoughts!

    Kevin

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #64
    Radiation treatment is completed

    Happy New Year to everyone!

    I completed the 5 days of high dose targeted radiation therapy. Now it's back to the "wait and see" mode. I suppose that I'll have another CT or PET scan in several weeks to monitor the progress on the bone met.

    The side effects have been very minor, so far. The nurses keep telling me to apply skin moisturizer before any sign of skin problems, but I haven't been very good at following instructions ! I think I'll start doing that, because my radiation treatment was in an area of the body where I really don't care to experience any skin rash or discomfort :-) Aside from that, I've been feeling somewhat tired. The radiation team said that the side effects may peak about 1 week after treatment ends.

    I have an appointment tomorrow with a cancer genetecist at Stanford. It should be an interesting meeting. My Mom, 2 uncles, 2 cousins and Grandmother (all on my Mom's side) have all had RCC.

    Cheers,

    Roger

  • RosielouFaith
    RosielouFaith Member Posts: 1
    #65
    rwmiller56 said:

    Thanks Foxhd. You've done

    Thanks Foxhd. You've done very well in your treatment. What does "dx" mean in your comment?

    Dx is medical abbreviation for the word..diagnosis

    Diagnosis

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #66
    Started Zometa Treatment

    Hi, everyone,

    I hope evryone is doing well.

    Today I started my first infusion treatment with Zometa, to help strengthen the pelvic bone that has been damaged by the met. Wow, I'm having some pretty bad side effects! Muscle aches throughout my body, and I'm running a fever of 101. I was told that the first treatment with Zometa is usually the worst, so I'm hoping that it gets better. I'll be taking it once per month. Does anyone here have any experience with Zometa? I sure hope that the side effects reduce with time.

    As far as my bone met, my last CT scan was inconclusive, as there was still quite a bit of inflammation from the radiation treatment. I go in for a PET scan in early May, which hopefully will give a more conclusive result. The good news is that there are no new mets. I'm coming up on 1 year since diagnosis.

     

    Cheers,

    Roger

  • Abunai
    Abunai Member Posts: 173 Member
    #67
    rwmiller56 said:

    Started Zometa Treatment

    Hi, everyone,

    I hope evryone is doing well.

    Today I started my first infusion treatment with Zometa, to help strengthen the pelvic bone that has been damaged by the met. Wow, I'm having some pretty bad side effects! Muscle aches throughout my body, and I'm running a fever of 101. I was told that the first treatment with Zometa is usually the worst, so I'm hoping that it gets better. I'll be taking it once per month. Does anyone here have any experience with Zometa? I sure hope that the side effects reduce with time.

    As far as my bone met, my last CT scan was inconclusive, as there was still quite a bit of inflammation from the radiation treatment. I go in for a PET scan in early May, which hopefully will give a more conclusive result. The good news is that there are no new mets. I'm coming up on 1 year since diagnosis.

     

    Cheers,

    Roger

    Zometa

    That was my experience, RW.

    I woke up the day after my first Zometa infusion with every joint in my body aching. I believe I had a fever, too. I spent the day in bed.

    I've had several (five?) treatments since then and have had almost zero side effects. Not sure why that is, but that's what happened.

    Best of luck to  you.

  • APny
    APny Member Posts: 1,995 Member
    #68
    Abunai, so glad there are no

    Abunai, so glad there are no new mets. Hopefully the Zometa does the job and the subsequent infusions have little or no side effects.

  • firedude21
    firedude21 Member Posts: 52
    #69
    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.

    Zometa

    I was infused with Zometa this morning.  I get it every three months and have never had a reaction from it. Everybody is different and reacts differently to different meds. Good luck to you and all of us on this rollercoaster ride.

    ffd21

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #70
    Kat23502 said:

    I'm sorry to hear about all

    I'm sorry to hear about all of your side effects but hopefully they lessen. I was just curious, what grade was your ini tumor? I know you said it was stage 1 but what grade and subtype was the cancer?

    My initial primary tumor was

    My initial primary tumor was grade 1, clear cell RCC. Then, the met was discovered about 4 months post nephrectomy. That was grade 4. But they think that the met may have already been there, but just too small to be detected.

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #71
    Abunai said:

    Zometa

    That was my experience, RW.

    I woke up the day after my first Zometa infusion with every joint in my body aching. I believe I had a fever, too. I spent the day in bed.

    I've had several (five?) treatments since then and have had almost zero side effects. Not sure why that is, but that's what happened.

    Best of luck to  you.

    Great! That's what I'm hoping

    Great! That's what I'm hoping for. Just to be cautious, I'm having all my infusion treatments performed on Fridays, so I have the weekend to recover!

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #72
    APny said:

    Abunai, so glad there are no

    Abunai, so glad there are no new mets. Hopefully the Zometa does the job and the subsequent infusions have little or no side effects.

    Thanks! Yes, I do have that

    Thanks! Yes, I do have that to be thankful for! I've also made some lifestyle changes, as well as eating a healthier diet without processed foods. Im taking Host Defense My Community supplements to help boost my immune system, and that seems to be working.

    Roger

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #73
    Kat23502 said:

    I'm sorry to hear about all

    I'm sorry to hear about all of your side effects but hopefully they lessen. I was just curious, what grade was your ini tumor? I know you said it was stage 1 but what grade and subtype was the cancer?

    Sorry, Kat23502, I forgot to

    Sorry, Kat23502, I forgot to mention that the primary tumor was actually staged as grade pT1a. It was about 3.3 cm large, ISUP grade 2 of 4. There was coagulative necrosis present, so it was a fairly aggressive tumor. Lymph nodes were good at pNx.

    Roger

  • Kat23502
    Kat23502 Member Posts: 179 Member
    #74
    I'm sorry to hear about all

    I'm sorry to hear about all of your side effects but hopefully they lessen. I was just curious, what grade was your ini tumor? I know you said it was stage 1 but what grade and subtype was the cancer?

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #75
    PET Scan Results and Zometa Question

    Hi, again. I had my PET scan the other day, and the results are encouraging. First, it is confirmed that there are no new metastases. Only the existing one on my ramus bone in the pelvis. The affected area measures about the same, about 1.8 cm x 2 cm, however, there is only a small uptick in activity in that area. The doctor said that she is not sure yet if the uptick is due to any remaining tumor, or if it is just background noise. The recommendation is to continue with the Zometa treatment.

    Although I wanted to hear that the tumor was completely zapped by the radiation therapy, I suppose this is still a good result, right? Stable, and no progression? Continue with the Zometa?

    Question for those who have taken Zometa: Is there any pain associated with the treatment as the Zometa starts doing its job of repairing the bone?

    Thanks everyone for all your help and encouragement!

    Roger

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited May 2017 #76
    Hey there Roger, glad you

    Hey there Roger, glad you gave us an update! Hope you remain stable. Do not know anything about Zometa, but hope it helps.

    Have you also checked in at SmartPatients.com?

    Let us know how you are doing, like your updates!

    Sending you healing thoughts and gentle hugs,

    Jan

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    edited May 2017 #77
    Jan4you said:

    Hey there Roger, glad you

    Hey there Roger, glad you gave us an update! Hope you remain stable. Do not know anything about Zometa, but hope it helps.

    Have you also checked in at SmartPatients.com?

    Let us know how you are doing, like your updates!

    Sending you healing thoughts and gentle hugs,

    Jan

    Thanks Jan4you!

    Thanks for recommending the SP forum. There are some very knowledgeable folks over there! I'll continue to post updates on both forums. Wishing you all the best!

    Roger

  • disha2000
    disha2000 Member Posts: 2
    #78
    Same with My Mum

    Hi All,

    It is great inspiration reading your notes.

    My mother has been diagnosed with stage 4 Kidney Cancer. Mets are fund in both femur bones, lungs, Liver, and Ribs. Kidney-Left got removed and now radiation is in progress for pain. Doctors are advising that they will be treating her on targetted therapy and will give her Sutent drug. Still, treatment has not started and we are hoping things will work out. Some doctors said no hopes, whatever treatment it will be for the satisfaction of the family and friends. Some doctors mention that we will treat her and provide a quality life until the time she lives(2-3 years). A Very frustrating situation as we can help my mom. 

    We are going through a tough situation, mom has reduced to 1/6 of the food she use to take, and drowsy all the time, she hardly speaking to us...

     

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