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I’m FREEZING! We’re watching my tumor right now...

Tisharoo's picture
Tisharoo
Posts: 1
Joined: Aug 2018

I was diagnosed with papillary renal cell carcinoma quite by accident last year... the mass showed up on a lumbar spine MRI.  The sharp-eyed radiologist at my favorite imaging center caught it and alerted my PCP, telling him to schedule me for a CT without/with contrast, as he felt “it was concerning for RCC”.  He nailed it!

Long story short, I kept getting sicker and sicker before this... losing weight and hair... having extreme fatigue for reasons beyond my fibromyalgia.  With this diagnosis, it answered everything.  I was referred to my son’s urologist, who, through further testing, determined it was indeed RCC, and laid out treatment options.  As much as I love Dr. Patrick Showalter, he knows I DO NOT like the hospital in Murfreesboro, TN.  He referred me to the top guy at Vanderbilt University Medical Center in Nashville, Dr. Daniel Barocas, MD, MPH.  I adore this man!  I love ALL my doctors at Vandy!  I don‘t go anywhere else except for my PCP, as I’m not giving DJ up for ANYTHING!  When you have the best...

Anyway... I had been in a horrible car wreck in January of 2017, just after being diagnosed.  All my people at Vandy put me back together, and I was in a wheelchair for a couple of months... with the rest of the year full of rehab and surgeries.  My pelvis was put back together, I have 2 new hips, my left knee replacement was revised, and I still have to have the right knee replacement fixed.  All that was after the concussion, collapsed lung, cut spleen, and torn liver had healed.  Needless to say, my kidney was the last thing on my squad of doctors’ minds!

We are watching this tumor for the time being, as it’s not metastasized.  I don’t have anyone to care for my aging Siberian Husky or his cat.  Yes, HIS cat. That’s another story in itself.  I guess I’ll just do chemo when the time comes.  We’ll see.

I‘ve babbled in too long, and I apologize.  I need to know if it’s normal to have days when you just freeze?  The last two have been horrible. I can’t get warm, I’m exhausted, and have an achey feeling... but I know I’m not sick.  I just feel like crap.  It’s not all fibromyalgia, as that doesn’t make me freeze. I just GAINED 25 pounds from steroids I had to take  because I had an allergic reaction to a medication that caused tiny blisters from head to toes... literally.  I “exfoliated” after they all popped for a couple of weeks and it was gross... so it’s not like I lost MORE weight... 

I‘m huddled in bed, long sleeved nightie on, piles of blankets... took the Husky out to potty in 86 degree heat, shivering.  That’s just not right.  Do any of y’all do this?  Thanks for putting up with my rambling.  Y’all are all in my prayers.

CRashster's picture
CRashster
Posts: 226
Joined: Mar 2017

My doc's in Hendersonville. I love my docs, I hate the organization he works for. I get this coldness too. But, the sun is out today and it's 90 degrees. Go outside, sit in the sun and get warm.

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

I was told I had RCC for 6-7 years before they found it and let me tell you.....I froze!!!! I would sit in the hottest bath and my insides would still be shivering. I had surgery last November and that was the first thing to go! I also lost a ton of hair and it has come back now. Crazy how all of that happens. I wish you all the best!

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

I'm in Nashville. Hello locals! 

 

Dad was asked to rank his choices, and he said 1. Vanderbilt and 2. Sarah Cannon

 

So we got a Vandy oncologist, but Dad would see him at the little hospital in Springfield TN. It was curious to me, as Dad and Mom live in Joelton. They are only saving 5-6 minutes by driving to Springfield vs. Nashville. It didn't sit well that they were meeting at that little hospital. But I asked a Doc friend and he said the Vanderbilt Ingram Cancer Center is really crowded and it's common for them to come out to sattelite locations. 

 

Well the Vandy Onc (young, middle easter guy. No older than his early 40s and can't be that experienced) diagnosed Dad with CUP, Cancer of Unknown Primary. Dad's Kidney CT was inconclusive his main problem was mets to bone. It's like he just tossed the kidney scan to the side and forgot about it. 

 

I research cancer of unknown primary and found the world expert in that cancer was literally a mile from my house at Sarah Cannon, so we got a 2nd opinion from him, he diagnosed Dad with Kidney Cancer and here we are. 

 

Now I'm babbling and off topic. I guess my point was we are lucky to have really good care options in Nashville!

CRashster's picture
CRashster
Posts: 226
Joined: Mar 2017

Just right off the ridge.

JoeyZ's picture
JoeyZ
Posts: 190
Joined: Mar 2018

I freeze all the time, it seems like. You have been through A LOT!!! Wow. I also have fibro and pRCC type II. My profile has the big story. It was a monster and I had no idea.

Hope you are getting all patched up and feeling better every day. What an ordeal!

I used to think I had low blood pressure when feeling so cold, but not so. It is weird because I was usually always hot. Especially in summer. Now I go outside to warm up, even if it's over 100˚, which we get a lot of here. Maybe someone else has some clues or answers on this for you.

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Dad has been really cold and his issue wound up being thyroid. But that's a side effect of his targeted cancer drug, Cabozantinib 

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