I'm also back and I've missed y'all

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TillieSOK
TillieSOK Member Posts: 252
in Kidney Cancer #1

Just a quick jump in here to let you all know that I'm still alive.  Have had a hip replaced and getting ready to have back surgery for collapsed lumbar vertebrates and butting heads with my oncologist.  So what else is new, huh? The thyroid is still growing nodules as are my lungs, but I will survive in spite of my oncologist.  In fact.....TaDa!  I may be getting a referral to see Dr. Fishman, an actual RCC Specialist!!!  I've had it with my current onc., and if I'm going to survive, I really need someone who knows something about ChRCC...not a hematologist.  As many have said on here...you have to be your own advocate or you will lose the fight. 

Now, for the catch up news on others.  I know of some of the losses, from Smart Patients, but what about DJinnie? Has anyone heard anything recently?  Hi Iceman!  Hi, Fox! Hi, JoJo!  There are so many new ones that I don't know, but I haven't been on here for over a year I think.  Anyway, hello to everyone and I hope you are all reaping all the benefits from this wealth of knowledge on this forum.

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  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #2
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    Tillie!!!

    Welcome back! So glad you posted! But you have been very busy!! Glad the hip surgery is behind you - and hoping your back surgery goes well. But so so happy that you advocated for an RCC oncologist. Good for you.

    Things are flowing the usual way here...new members coming in quite frequently. I will let Iceman and Foxy update you on their escapades themselves. I have been having some issues too....will hopefully find out more tomorrow as I go for my scan. I also have recently had the overgrown thyroid nodules (just like you!) that I am trying to be patient in trying to get some answers. It's a hurry up and wait thing. Sheesh!

    Unfortunately, the news on Djinnie is not good news to share. We lost her back in July. She gave a valiant fight to the end. Her spirit and her sweetness will never be forgotten. I am guessing, since you are on Smart Patients that you are also aware that we lost our dear Neil at the same time. It has been a hard blow to us all here. They have been such active contributors and good friends to us here. We miss them very much.

    Thinking about you, Tillie. Laughing

    Hugs

    Jojo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #3
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    Jojo61 said:

    Tillie!!!

    Welcome back! So glad you posted! But you have been very busy!! Glad the hip surgery is behind you - and hoping your back surgery goes well. But so so happy that you advocated for an RCC oncologist. Good for you.

    Things are flowing the usual way here...new members coming in quite frequently. I will let Iceman and Foxy update you on their escapades themselves. I have been having some issues too....will hopefully find out more tomorrow as I go for my scan. I also have recently had the overgrown thyroid nodules (just like you!) that I am trying to be patient in trying to get some answers. It's a hurry up and wait thing. Sheesh!

    Unfortunately, the news on Djinnie is not good news to share. We lost her back in July. She gave a valiant fight to the end. Her spirit and her sweetness will never be forgotten. I am guessing, since you are on Smart Patients that you are also aware that we lost our dear Neil at the same time. It has been a hard blow to us all here. They have been such active contributors and good friends to us here. We miss them very much.

    Thinking about you, Tillie. Laughing

    Hugs

    Jojo

    Hello there Tillie~!!!!!
    Glad

    Hello there Tillie~!!!!!

    Glad you are back here, but sorry for ALL you are going through. Sadly we have to advocate and FIGHT for our health issues. We're here to support you all the way, okay?

    Offering you support, care and hope you get the BEST doctors to help you!

    sending you healing love and hope!

    Hugs, Jan

  • TillieSOK
    TillieSOK Member Posts: 252
    #4
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    Jojo61 said:

    Tillie!!!

    Welcome back! So glad you posted! But you have been very busy!! Glad the hip surgery is behind you - and hoping your back surgery goes well. But so so happy that you advocated for an RCC oncologist. Good for you.

    Things are flowing the usual way here...new members coming in quite frequently. I will let Iceman and Foxy update you on their escapades themselves. I have been having some issues too....will hopefully find out more tomorrow as I go for my scan. I also have recently had the overgrown thyroid nodules (just like you!) that I am trying to be patient in trying to get some answers. It's a hurry up and wait thing. Sheesh!

    Unfortunately, the news on Djinnie is not good news to share. We lost her back in July. She gave a valiant fight to the end. Her spirit and her sweetness will never be forgotten. I am guessing, since you are on Smart Patients that you are also aware that we lost our dear Neil at the same time. It has been a hard blow to us all here. They have been such active contributors and good friends to us here. We miss them very much.

    Thinking about you, Tillie. Laughing

    Hugs

    Jojo

    That breaks my heart about

    That breaks my heart about DJinnie.  She was such a fighter and we messaged each other several times. Yes, I knew about Neil....the one person I never expected to lose the battle.  I still try to adhere to his dietary advice. We've lost so many....too many. 

    Anyhow, I'm glad to be back and remarkably healthy if my oncologist doesn't do me in first. LOL. He actually told me st our last visit that all scans would stop after I hit three years post op, because "RCC never comes back after three years clear"! The thing is, I'm not clear...the radiologists still think the lung nodules, which are growing, are either primary lung cancer or metastatic disease. Also have three nodules in my rt breast.  Good news is that the small, teeny hot spot on the midline of my left kidney has gone away! Yay!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
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    TillieSOK said:

    That breaks my heart about

    That breaks my heart about DJinnie.  She was such a fighter and we messaged each other several times. Yes, I knew about Neil....the one person I never expected to lose the battle.  I still try to adhere to his dietary advice. We've lost so many....too many. 

    Anyhow, I'm glad to be back and remarkably healthy if my oncologist doesn't do me in first. LOL. He actually told me st our last visit that all scans would stop after I hit three years post op, because "RCC never comes back after three years clear"! The thing is, I'm not clear...the radiologists still think the lung nodules, which are growing, are either primary lung cancer or metastatic disease. Also have three nodules in my rt breast.  Good news is that the small, teeny hot spot on the midline of my left kidney has gone away! Yay!

    I've been

    thinking about you, Tillie. I noticed you weren't around. So it is my fault that you came back. Karma must work in our thoughts. Tumors come and go, but we all hang in. Feeling good is a big part of moving on. Good to see you. FLY.

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