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post Radical Nephrectomy

post Radical Nephrectomy

Posted by Celtie on Aug 1, 2018 8:46 pm

Hi All, 
I had a right radical nephrectomy done on May 1 2018.  My tumor was the size of my kidney and needed out.  It was found during an ultrasound for another matter. The cancer moved to both lungs.   I am now at 3 months post op but I am still having pain and of course I don't know if it's the remaining cancer or post op issues. I have had this pain since surgery but at my one month check up all was well, other than the pain under my rib and into my back. Urologest felt it was still post op pain.  I'm wondering if anyone else who has had a radical nephrectomy has had any pain issues this long post op? 

Since the nodules in my lungs have grown since April's scan I will be having treatment sooner than we had planned.  I am having baseline cat scans tomorrow of my pelvis, lungs, neck and head then I  see the oncologist next week to discuss scans and finalize treatment plans.  since the nodules have grown since April's scan I will be having treatment sooner than we had planned.  I am having baseline cat scans tomorrow of my pelvis, lungs, neck and head then I  see the oncologist next week to discuss scan results and finalize treatment plans.  I've opted for the Ipi/Nivo treatment. (immunotherapy)

thanks and I hope all are enjoying the summer as best you can :-)
Celtie

Re: post Radical Nephrectomy

Posted by Elsie13 on Aug 2, 2018 9:54 pm

Hello Celtie‍ . Glad you have found cancerconnection.  Sorry to hear that you have all this going on. I had ovarian cancer, so I don't know about those pain issues. Well, it's probably best to phone the cancer clinic and ask about that. 
Perhaps JennyLynn‍ , Slarti‍ and GarryP‍  will share their stories with you. 

Re: post Radical Nephrectomy

Posted by Celtie on Aug 3, 2018 2:13 am

Thank you so much for your response Elsie13‍  I am sorry you've had to deal with ovarian cancer. C is not fun at all as I'm certain you know all too well. I hope you are on the road to recovery.

Re: post Radical Nephrectomy

Posted by Lacey_adminCCS on Aug 3, 2018 11:08 am

Celtie‍ 

Welcome to the community, thanks for taking the time to help us get to know you :)

I'm sorry to hear you are still having pain three months post op. Hopefully the scans you are booked for can shed some light on where the pain is coming from. I would definitely mention it to your Oncologist and see what they recommend.

I want to tag  dillon‍ who recently had surgery. How are you doing post surgery? Any pain?

How did your scans go yesterday?

We have a group Living with Advanced Cancer that you are welcome to join here

Stay in touch- wishing you all the best,

Lacey

Re: post Radical Nephrectomy

Posted by Celtie on Aug 3, 2018 12:12 pm

Thank you Lacey. I won't know the results until I see the oncologist next Friday. Thankfully I didn't have a blow out this time. My veins are not good and they always have a hard time getting iv's in. I will be asking for a port when i start treatment. Hope you have a fantastic long weekend! Celtie

Re: post Radical Nephrectomy

Posted by TAH495 on Aug 6, 2018 1:07 pm

Celtie‍ ,  sorry to hear your news.  I had a right radical nephrectomy in Dec 2016 and it took 6 months or more until I was feeling more like myself.  Give yourself time to heal.  

Re: post Radical Nephrectomy

Posted by JennyLynn on Mar 10, 2019 4:42 pm

Hi Celtie, 

I'm sorry that you have to go through this, and that I haven't been on here in so long.  My dad had his kidney out as well - his tumour was the size of a dinner plate.  He had his surgery July 2018.  He just had his 6 month check up and the surgeon said there is a spot behind his breast bone.  They aren't sure exactly what it is, could be still swollen from surgery, but, they are doing another round of tests in May to be sure.  The surgeon was also concerned his remaining kidney isn't working as well as it should, so, he asked my dad to start drinking more water.  I don't think he had drank much before.  It is so scary and it's hard to not think about it.  I guess after my dad got it out, he had his follow up and all looked great.  When he went with my sister to this appt, she said as soon as the doctor mentioned the spot, the colour drained from his face and he said after he didn't remember a thing the doctor said.  My sister said that's ok, that's what I'm here for because she writes stuff down.  I hope that you are doing ok, and this is a wonderful site for support and information.  Take care :)
 

Re: post Radical Nephrectomy

Posted by ashcon on Mar 10, 2019 5:17 pm

Hi Celtie‍ 

It's been awhile...Just checking in to see how you are doing.  JennyLynn‍ has just checked in and shared some of her dad's experience.  

We're always here, no matter where you are in your journey.
ashcon (Ann)
 

Re: post Radical Nephrectomy

Posted by Celtie on Mar 12, 2019 4:34 pm

I was so certain that the one treatment I had was going to do something. I was wrong as it still the nodules are still growing and multiplying in my lungs. That really shocked me as I was so positive it would have done something.Hi Ann. ashcon‍ 
Thank you for checking in. It’s been a bit of a roller coaster since my last post. I did have one treatment of the Ipi/nivo.  I ended up having a a serious skin reaction to the immunotherapy. My body was covered in rashes and blisters and felt like fire ants were under my skin. My oncologist said he’d never seen anything like it. It was absolutely horrible to go through and I will not go through that again even if the oncologist hadn’t said we’re not doing that again.  It took well over a month to get the blisters and the rashes under control and dissipate. So I’ve been on prednisones since then to To suppress my immune system in order to keep the rashes away.  My next treatment option is everolimus and levatanib. I don’t mind saying I’m not looking forward to it as I’m terrified of what side effects Im going to have. I don’t want to go through a major reaction again. 
I was so certain that the one treatment I had was going to do something. I was wrong as the nodules are still growing and multiplying in my lungs. That really shocked me as I was so positive it would have done something.  So we pick up and we try again and hopefully this next treatment will be the one. 

Celtie

Re: post Radical Nephrectomy

Posted by Elsie13 on Mar 13, 2019 4:06 pm

Celtie‍  That is so frustrating when you think everything is going to be OK, and you have set-backs,  like the multiplying nodules and  that terrible rash.  When do you start the new treatment? I don't have medical training, but it seems possible that as the doctors know about that awful rash, they will give you pre-meds ahead of the main treatment, and /or start you off with a lower dose than standard???  I don't know, just thinking out loud. 
I hope the new treatment works for you.
ashcon‍ 

Re: post Radical Nephrectomy

Posted by KImbopete on Mar 13, 2019 4:48 pm

Hi Celtie,
I had a radical Nephrectomy  in March of 2017 and had pain for about 2 months. Eventually went away.
Keep up the fight. They recently found 2 nodules in my lungs and am s*** scared for my next ct scan.
You are not alone. I was on immunotherapy for a year but I guess it did not work.
It was a drug trial. Worried that I might hav got the placebo.
At any rate try to enjoy the moment as we all fight through this together.
All the best.