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.
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.
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.
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.
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.
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.
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 -
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.
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.
Joined: Oct 2013
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.
Joined: Jan 2019
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.
Joined: Aug 2017
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.
Joined: Jul 2016
You will find lots of help
You will find lots of help here. Glad you found us.
Joined: Jun 2019
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.
Joined: Feb 2019
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.
Joined: Jan 2019
good luck
Sending you prayers. Hope you recover soon!
Joined: Dec 2017
Get Well Soon
And come back anytime you need to talk or vent. The folks here are full of understanding and support!
Joined: Nov 2017
You are not alone. We all
You are not alone. We all have gone through that feeling. This site helped me survive. Stay strong.
Joined: Feb 2019
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.
Joined: May 2017
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
Joined: Feb 2019
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.
Joined: Nov 2016
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.
Joined: Feb 2019
This board is a tremendous
This board is a tremendous help. I appreciate the encouragement and prayers. I say the same to everyone here!
Joined: Nov 2017
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 -
Joined: Sep 2017
Hi Janet. We're all here for
Hi Janet. We're all here for you! So great you got out shopping :)
Joined: Feb 2019
This board
helps me tremendously. Thank you all for sharing the stories.
Joined: Mar 2014
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.
Joined: Feb 2019
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.