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gpetrone
Posts: 5
Joined: Nov 2012

It has been a total roller coaster year for me. I underwent right shoulder surgery in mid-Dec 2011. 6 weeks later I was experiencing severe shortness of breath and was diagnosed as having acute congestive heart disease. The chest x-rays not only revealed the enlargement of my heart but also that my lungs were full of "nodules". 3 CT scans, a PET scan, and a biopsy of my right clavicle later, I was ultimately diagnosed with Stage 4 renal cancer that had metastasized to both my lungs an many places on my bones, most notably my right clavicle (6.5 inch of bone erosion by the tumor) and my thoracic spine on the right just below the 12th rib (4.5 inches of bone erosion by that tumor).

My left kidney was removed on 07/09/12 (agression level 3). Prior to surgery, it had grown from the size of a tennis ball to the size of a softball in just 6 weeks time. Following 4 days in intensive care, I was sent home and placed on Sutent therapy. While my lung tumors have responded to the Sutent and have reduced in size, the bone tumors have continued to grow rather aggressively and become quite painful. I underwent radiation therapy a month ago and am now waiting to see if it had any beneficial effect. I also am getting infusion therapy of Zometa every 6 weeks to try and stimulate bone strengthening.

At this time, I am trying to hang in there. Given my employer's closure of my office location, I had to retire on disability given the cancer treatment and several orthopedic problems (post surgical knee, back, and right shoulder) that preclude me from driving to a new office 2 hours away.

Sorry if I provided too much information, but I have little contact with others right now. It was so much better when I was working and had others to interact with beyond the medical staff treating me.

Jerry

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jerry, be assured you're now among friends, here, who will support you like others can't.

There's always someone worse off - for most of us, billions of people on our planet are worse off. However, in our circles there aren't many who have a basket of medical problems that compares with yours and our hearts go out to you.

Where are you being treated? It sounds as if you're getting absolutely first-class care.

Nonetheless, with the fistful of problems you have, may I suggest that you also join KIDNEY-ONC (if you haven't already) where there is an unequalled depth of expert knowledge and experience available, especially for the patient with the sort of issues you face at present. It's a listserve site (online) that you can join for free and where you can ask just about anything about kidney cancer and depend on getting rapid, amazingly well-informed answers. But don't leave us - we're a big-hearted bunch here, even though we don't know as much.

gpetrone
Posts: 5
Joined: Nov 2012

Thanks for the welcome, I really appreciate it. My treatment so far has been through Kaiser Permanente. I am switching to Blue Shield through my wife's insurance since mine was cancelled given my disability retirement. Fortunately, the primary care physician I selected has a dual specialty, internal medicine and nephrology.

Jerry

matlar25
Posts: 2
Joined: Oct 2012

Hi,

I too am new to this site. My husband was diagnosed with stage IV RCC with lung mets a couple of months ago. He is slated to start HDIL2 treatment the monday after thanksgiving. How do I arrive at the kidney-onc site? Have any of you considered any alternative treatments?

Blessings!

Jan

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jan, I'll bring the instructions thread back up the list so that it's easy for you to find. If you have any difficulty in getting on to it, please advise us and we'll try to help.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Sounds like you have had some year!

Sorry you've had the occasion to find this site but you'll find plenty of support and good company here. We may not have all the answers, but when we don't, I guarantee you'll receive some laugh/smile therapy with a good joke from Gary, Tex, or one of many others. Welcome Jerry.

gpetrone
Posts: 5
Joined: Nov 2012

Thanks so much, I really look forward to the laugh/smile therapy. These days I can really use it.

Jerry

rayspost
Posts: 7
Joined: Nov 2006

I had kidney cancer surgery in 2005

I'm still here....need I say much more other than Keep your chin up
and God bless?

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Jerry,

Welcome to the club, you have stumbled into a very caring, understanding, and knowledgeable group, you are among friends. Three years ago I was just as scared and emotional as you when I found this site, the people here are wonderful, warm, and will help you through it all any way they can. I have sort of developed into the "court jester" here, but I'll save the funny stuff for when you are feeling better. Not long ago there were almost no treatment options for someone like you, but today treatment options are expanding and there are several drugs and trials showing great promise in this fight. Alice's husband John is just one here experiencing great results, there are many otherss and we would love to add you to the list.

Good luck and Godspeed,

Gary

gpetrone
Posts: 5
Joined: Nov 2012

Thanks! I hope to get to know you and the others and expand my circle of friends, especially those who are in similar circumstances.

Jerry

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

No such thing as too much info and yes Texas is right they have people over at kidney-onc that know their stuff but please keep us updated .It sounds like you are in for a battle and i will pray that you come out on top,stay in touch Jerry.

gpetrone
Posts: 5
Joined: Nov 2012

When it rains,it pours. Now, I need to undergo 2 MRI scans, lumbar spine and right knee. In 2009, I was diagnosed as having a severe right sided stenosis at L3-4. Since I already had undergone a full bilateral laminectomy at L2-3, the only way to deal with the stenosis surgically is a laminectomy and lumbar fusion from L2 to L4. At age 61, the recovery period could be from 6 to 9 months time, assuming no complications from my aggressive bone tumors.

As for my right knee, I require a total knee replacement as it is totally bone on bone and seriously out of alignment. Needless to say, it significantly compromises my ability to walk, climb stairs, etc. Again, I hope the tumors don't complicate matters.

Hoping for the best.

Jerry

foxhd's picture
foxhd
Posts: 2065
Joined: Oct 2011

You've stumbled upon a group of motivated, caring and positive sickies here. Some have and are experiencing significant health issues. Others like me have had it relatively easy. All you gotta do is have a goal oriented attitude and be willing to share the karma. A sense of humor goes a long way. Now get that knee fixed so that you'll have a leg to stand on in this cancer battle.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Once again, Fox has said it way better than I ever could! "Motivated, caring and positive sickies"! I love that description. Jerry, I couldn't have gotten through the last year without this group of wonderful people. Always great cheerleaders, always there, and always have your back! We will support you whatever you decide to do.

Welcome aboard.

Paula

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

I'm 64 had an MRI due to stenosis and back pain and that's how they found the huge mass on my kidney. First things first, so I had my left kidney removed. Then 2 mos later I had back surgery--fusing S1 through L3. Yes, recovery was difficult and long, but doable. Bending is out of the question for the first month or 2, so put everything in your house at waist level. I discovered lots of medical aids for around the house to help too. I went on a back surgery message board, which helped immensely to help me prepare for the surgery.
http://www.spine-health.com/forum

Keep us updated!

Linda

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