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New to the board here on behalf of my father

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

I've been lurking and reviewing posts the last few days. I am here on behalf of my Dad and figured I'd make an introductory post. 

 

Dad had the flu in January and afterwards he had some rib pain. The NP he had been using as his defacto GP diagnosed him with broken ribs. 

 

Fast forward to March, he has his medicare physical and he is proclaimed "healthier than I am" by his 28 year old NP. Dad was a bit puzzled because he hadn't felt well, but happy with the physical. I joked with him that he actually wanted a diagnosis to explain his aches and pains, and he did get one. "You're just old." he'd laugh then joke with me about my upcoming 40th birthday. 

 

Well his overall well being was still bothersome to him so he had the NP do some scans. I'm not sure what, so we will just say "scans". She called them back to the office and cried as she handed them scans with kidney and bone lesions. 

He was set up with a Vanderbilt oncologist that he really liked. The Dr. said they didn't find any cancer in any of his organs, only in his bones and that they "can't tell where it came from" but that they need to get busy treating the adenocarcinoma in the bones because it is causing him pain. The kidney scan wasn't mentioned. I supposed we were happy that he didn't seem to have kidney cancer and we all moved on. 

In the meantime, I am researching bone cancer but I kept focusing on the phrase "we don't know where it came from." I eventually find out from a Dr. friend that this is what is referred to as "Cancer of Unknown Primary". 

Once I had a search term, then I could get down to some serious research. By this time a month had past, Dad had weakened significantly -- was hospitalized once for GI tract bleeding that turned out to be from NSAIDs and again for severe constipation that turned out being from his opiate meds. A month and a half in, he had one chemo treatment under his belt, and was know mostly wheel chair bound and severely weak. 

I was able to find the national expert for Cancer of Unknown Primary, and it turned out he was literally a mile away from my house in Nashville. I emailed him and he responded within 10 minutes.

We take Dad to see him, he says he is 90+% sure that Dad has kidney cancer, and that there are treatments for it. He set an appointment for a week later, to start Dad on "Cabo". 

Dad took his first 60mg dose yesterday. I've read where it does wonders for bone mets. We are hoping for the best. He is very weak and his appetite is poor. He has bone mets in his ribs extensively, and in his hip and spine. The ribs is giving him the most trouble. He is on constant pain. 

If he has Kidney cancer, his primary kidney tumor is fairly small, small enough as to be inconclusive to another oncologist. Isn't there a correlation between tumor size and it's propensity to metastasize? 

Is our diagnosis favorable because Dad's only mets are bone mets, even though they are pretty extensive? 

I had a very weird feeling that his other oncologist was just throwing a generic chemo at him and hoping for the best, then we get this 2nd opinion and the new oncologists confirms this. How is it that me, an underachieving college drop-out knows this? It freaks me out that I was able to discern this as a layman. 

 

If Dad responds well to the cabo we can then go with other treatments to hopefully knock this thing down into remission. I wish I found this oncologist, Dr. Greco, a month ago but it is what it is, as they say. 

Sorry for being so long winded, I just wanted to get this introductory first post out of the way, and jump in the deep end here with you guys, while I am on this journey with my Dad. 

APny's picture
APny
Posts: 1883
Joined: Mar 2014

I'm so sorry you have to be here but you'll find a lot of people with good information and support. I'm not sure why your dad was put on Cabo if kidney cancer was not confirmed. I guess for the bone leisons? Also, I'm surprised the oncologist suspects kidney cancer yet didn't order a CT scan to confirm it. Small kidney cancer tumors rarely spread elsewhere but I suppose anything is possible. To me the  most important thing would be to check his kidneys by doing a CT scan with and without contrast. Wishing you and your dad the very best!

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

Thank you very much, APny!

From what I understand, the other onco suspected Kidney cancer as well, but the pathologist talked him out of being sure of it, just enough for him to go with an unknown primary diagnosis. 

I think that the current oncologist (FA Greco is his name and he is known as a giant in the field of unknown primary cancer) saw how weak and sick Dad was, and wanted to get him started on treatment ASAP. 

That's my take but you're asking good questions I've also wondered myself.  

CUP represents 2-5% of all cancer diagnosis. Sometimes very small primaries can give off vast metastis.

What's really interesting is in rare cases, the primary is gone. The immune system has destroyed it. 

We really do have a very good oncolgist this time, and were willing to go with his 90+% certainty given how sick Dad is. 

icemantoo's picture
icemantoo
Posts: 3160
Joined: Jan 2010

Lee,

I have the same questions as APny. My thoughts are to follow up with a Urologist at Vanderbilt and get a Pelvic CT of the Kidneys with and without contrast.

 

icemantoo

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

Dad had a CT scan as well as a PET and they biopsied the bone. I'll have to confirm anything else with Mom. 

 

The new onc mentioned that they wish they had more tissue in the bone sample. 

icemantoo's picture
icemantoo
Posts: 3160
Joined: Jan 2010

Lee,

 

---have a Pelvic CT?

 

icemantoo

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

I'll find out iceman. 

Also I meant to record the first 2nd opinion meeting with Dr. Greco. There may be good answers to these questions that I failed to recall. 

I did record this last appointment. 

It does appear that cabo works with bone mets from many different soft tissue sites, not just kidney, and the bone mets are his #1 issue symptom wise right now. 

Tiger86
Posts: 1
Joined: Jul 2018

New to this board too.......wife was diagnosed with cervical cancer 2 years ago had a radical with chemo & radiation, sweating the post care every 3 months. My mom and dad died of cancer so this hits me hard on so many levels

a_oaklee
Posts: 414
Joined: Nov 2013

I'm sorry to hear that your dad is going through this.  You mentioned that the nurse practitioner said the scan showed kidney and bone lesions.  When my husband had the same results it was enough to say that he had kidney cancer with bone mets and begin treatment.  He did not have biopsies.  Cabo is a good drug for a person who has RCC with bone mets.   However, most patients receive Demosamub injections once a month for the bone mets.  It makes the bones stronger and less likely for more mets to grow further or in new areas.  Radiation therapy like cyberknife is fantastic for eliminating the pain associated with the bone mets.  It also can make the cancer inactive in the treated area.  That's the goal, but it doesnt work for everyone.  

 

I congratulate you for trying to do research for your dad.  I highly recommend you also posting on Smart Patients.  If you can have your dad go to a major medical center with experience in RCC and that has radiation oncology and cyberknife.  Pain management is vital.

To give you hope my husband was diagnosed same as your dad, with multiple bone mets in various locations.  That was back in January 2012.  He is doing really well and hasn't had another met since 2013.  He works full time and is pain free.  He gets monthly demosamub shots and takes Inlyta.  Cabo wasnt available back then, and our docs dont want him to change meds as long as it's working.  Please share with your dad about the people you find doing well.  Best wishes to you both.

There are 2 different bone agents.  Either Zometa or Xgeva.  Xgeva is Demosamub and it's an injection.  Zometa is an infusion.

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

Thank you a_oaklee! I just saw your helpful post. 

Dad's original oncologist, the one who gave him chemo and diagnosed Cancer of Unknown Primary, also gave him a bone med. 

The new Oncoligst, the Unknown Primary Cancer Expert, who is pretty sure Dad has kidney cancer, has not said anything about additional bone meds. I will ask him about it next apppointment. 

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