Im new to board

Janet920
Janet920 Member Posts: 12

hello all.  I have stage 4 kidney cancer kidney Which has spread to other areas. im currently on immunotherapy opdivo every two weeks. I know im not alone but i feel so alone. I have no pain just very very tired. Just wanted to share. 

Comments

  • cubsfan9
    cubsfan9 Member Posts: 69 Member
    Welcome!

    Good Morning, Janet!

    Welcome to the club nobody wants to join...but here we are!  I can't offer any insights about immunotheapy as my husband is on a TKI (Sutent) and has been for 6 1/2 years..  However, it does seem that many of the various treatments cause fatigue.  As time goes on you will find ways to modify/adapt your activities to deal with feeling tired.  Naps are acceptable!!!  It's all part of the New Normal.

  • eug91
    eug91 Member Posts: 367 Member
    welcome Janet-

    You're not alone. We're here if you have questions or want to just share or vent. 

    Good luck with the treatment. We're with you. 

  • MelBlessed
    MelBlessed Member Posts: 71
    Welcome Janet

    I’m sorry you are here, but you will find this board is full of loving and supportive people.  Sending prayers for you and all.

  • Canadian Sandy
    Canadian Sandy Member Posts: 725 Member
    You will find lots of help

    You will find lots of help here. Glad you found us.

     

  • AliceB1950
    AliceB1950 Member Posts: 172 Member
    Welcome, Janet.  You'll find

    Welcome, Janet.  You'll find people here who are going through similar treatments who will offer support and advice, and people with different diagnoses and treatments who will offer friendship.  It's a good place.

  • Janet920
    Janet920 Member Posts: 12
    edited August 2019 #7
    Since talking to you all I’ve

    Since talking to you all I’ve  been in the hospital since Thursday. I came in severely dehydrated and very very low blood pressure. I developed other things as well. It’s just so tough. Im hoping to go home tomorrow. 

  • eug91
    eug91 Member Posts: 367 Member
    Janet920 said:

    Since talking to you all I’ve

    Since talking to you all I’ve  been in the hospital since Thursday. I came in severely dehydrated and very very low blood pressure. I developed other things as well. It’s just so tough. Im hoping to go home tomorrow. 

    good luck

    Sending you prayers. Hope you recover soon! 

  • Tapman63
    Tapman63 Member Posts: 137
    Get Well Soon

    And come back anytime you need to talk or vent.  The folks here are full of understanding and support!

  • Cybball
    Cybball Member Posts: 111
    You are not alone.  We all

    You are not alone.  We all have gone through that feeling.   This site helped me survive.   Stay strong.   

  • Janet920
    Janet920 Member Posts: 12
    edited August 2019 #11
    Thank you all - i am truly

    Thank you all - i am truly feeling a lot better.  Being in the hospital sucks but it's where I needed to be.  I'm just getting use to my new routine, new meds. I still do immunotherapy every two weeks which has kept the tumors at bay. I spent the other day back to school shopping with my young granddaughter. It was a nice relief. I appreciate the kind words. 

  • Manufred
    Manufred Member Posts: 241
    Opdivo

    Janet,

    I did Opdivo for 3 years as part of a trial, and have not had any signs of tumours now for about 2 and a half years.  Full details are on my profile page.  I hope you have a similar outcome.

    Best Wishes,

    Fred

  • Janet920
    Janet920 Member Posts: 12
    CT scan

    Thanks Fred. I read on your experience. Tomorrow i go for a CT Scan to see the progress. I am always a little nervous.  I’m hoping for the best. 

  • Deanie0916
    Deanie0916 Member Posts: 494 Member
    Hi Janet

    Sorry that you are part of this club no one wants to join. Hope you're feeling better soon and adjust well to your new routine. Prayers for you.

  • Janet920
    Janet920 Member Posts: 12
    This board is a tremendous

    This board is a tremendous help. I appreciate the encouragement and prayers. I say the same to everyone here!

  • jazzgirl
    jazzgirl Member Posts: 215 Member
    Hi Janet

    Welcome; so sorry you're here. Even though some of us don't post as often as we might, I hope you are getting the sense of how many of us are out here and behind you in so many ways. Every day I'm thinking about all my peers on this group. I hope your CT scan was uneventful. Take care -

  • AnnissaP
    AnnissaP Member Posts: 632
    edited September 2019 #17
    Hi Janet. We're all here for

    Hi Janet. We're all here for you! So great you got out shopping :)

  • Janet920
    Janet920 Member Posts: 12
    This board

    helps me tremendously.   Thank you all for sharing the stories.  

  • APny
    APny Member Posts: 1,995 Member
    Janet, not sure if it's been

    Janet, not sure if it's been suggested but also sign up for SmartPatients if you haven't already. Another very helpful board, and many with stage 4 there. All the best to you and hope you're feeling better.

  • Janet920
    Janet920 Member Posts: 12
    Hello. Thanks for the info

    I will check out Smart Patients. Thank you! My left kidney and both adrenal glands were removed April 2018.  My last CT scan showed that my remaining tumors have not grown and no new ones have occurred. Im taking this as good news.  Obviously I wish my tumors would shrink or disappear altogether.  I’m not in any pain and I’m doing good with my  immunotherapy treatment every two weeks. I’ve come a long way. I keep busy going to the gym, seeing family and friends but I will say talking to you all and connecting with those that have gone through this really does help.