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My first time posting my story

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

My husband, Pat thought he had kidney stones. Was passing alot of blood and stuff. Waited to get checked out by his primary care physician. Sent him to get a CT scan. Then we found out the news. Kidney cancer.....I lost it. Went the same day to see our OC. He is awesome. Dr. Kasbari. We then proceeded to get 9 pints of blood and then waited and waited to get a bed at Duke. Finally got in for surgery. 6 hous later found out he was recovering well. He is on his third cycle of Sutent and doing great. Next CT is on Wednesday. Back to Duke. We are very thankful that it is only 1 hour and 30 minutes away. Our surgeon at Duke said his tumor was the size of a foootball. Dr. Inman is a great surgeuon. We have pictures.....thanks to the surgeon. He had to cut him straight down his belly to move his ribs. Had his spleen taken out too. Please keep us in your thoughts and prayers that the next CT will show good news.

icemantoo's picture
icemantoo
Posts: 1477
Joined: Jan 2010

Machelle and Pat,

You could not have wound up at a better top notch facility. My oldest granddaughter was born at Duke. Obviously you have some challanges ahead and I am sure some of the members of our club who share and are so far beating those challanges will chime in to help. The only thing I can offer is perspective as I will be a 10 year survivor of RCC in less than 3 weeks. Best wishes for a full and complete recovery and may Pat join me in countinng years instead of days and months and before you know it he will reach the double digets as well.

Icemantoo

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Machelle,
From my reading of the list over the last several months I thought I had the record tumor at 17.5cm. Pat may have the dubious honor now. I am 10 months post-op and doing great. He will certainly have some soreness and the other issues that you will read about here as being common to RCC survivors. Just help him to keep a positive attitude. All of us will keep you and he in our thoughts and prayers. I am in southeastern NC if you are nearby and need anything.
John

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

First and foremost I truly appreciate the feedback from you all.

Iceman...so happy for you on your 10 years. That is awesome!

John, he still has pain every day where the kidney and slpeen were removed. I don't have to encourage him on the possitive attitude. That is the first thing our local oncologist told us and he has run with it. We were told he would be in recovery at Duke for at least 5 days...which meant we would be there for Christmas. Had surgery on Dec. 20th. We were dismissed and headed home on the 22nd. Two days after surgey!! There was no way he was spending that time in the hospital. Was up and walking the next day and went every two hours for at least 15 minutes, than 30 and then 45. He works everday and as I said before, the Sutent is working wonders. We are very confident we will have good news on Wednesday that his nodules in his lungs have shrunk even more.

Happy you are doing well John. Can I ask what part of NC you are from?

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Machelle,

Pat's attitude and speedy recovery are an inspiration. I hope the scans Wednesday are just as encouraging. It's good to know that the Sutent is so effective. I have not been put on anything (yet) but know with the size and grade (4) of my tumor, mets are possible.

I'm in Wilmington, NC. Well, actually, we were/are in the process of relocating back to my hometown of Wilmington from the Atlanta area. My RCC was poorly timed, though, and we can't seem to make a clean move because of insurance requirements for in-network doctors there.

Keep the faith,

John

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

The Sutent is working great now but we heard something about Votrient when and if the Sutent stops working. Dr. George, our Oncologist at Duke also mentioned that there is a possibility of remission on Sutent. So the studies have shown. IL-2...I have read on this board is a last option. 10 percent of recovery but it is hell to go through...

Pat had mets before surgey...in his lungs. All 8 lymph nodes he had taken out at surgery were clean though. The last CT he had though had shown a little something on his liver. Hopefully it has shrunk also. If not, he can have it taken out by by a small needle.

We are so greatful and blessed that we have come this far. Original prognosis was 6 months to a year. Passed 6 months with flying colors!!

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Sorry to hear that John, hope it all works out for you.

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

Not quite, John. We've previously established that some doctors have a bizarre idea of the size of a football (and some are a bit off in their knowledge of the size of grapefruit and golfballs too) but we do know one member, Chris Boone, who had a 21cm tumour. He's young and athletic and went off on honeymoon after his nephrectomy. It would be good to know how he's getting on now. Similarly for one of our most interesting contributors in the past - Jamie1.3cm - and if One Lucky Girl could sneak in and give us an update it would be nice. Still, I'm sure they're all doing well and thoroughly enjoying life.

There seem to be more and more people doing well on Sutent, which appears to be well-established now as the premier choice of first-line treatment for most cases. I wonder how much Pat's get up and go attitude and rapid return to exercise contributed to his excellent recovery.

I hope we'll soon hear of great results from Wednesday's CT scan.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Anytime i am feeling a little down all i need to do is log on to CSN and get a shot of inspiration, i whined and cried about my little 5cm tumor heck thought it was the end of the world,its really nice to connect with people who have gone thru what i have,also nice because here no one ever gets tired of listening to me. Have A Nice Day ALL!!!!!

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Keep on posting. Big or small... still dealing with cancer. None of us thought we would be dealing with it at our age. You are in our prayers...Machelle and Pat.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

21cm...ouch! Of course, Pat and I know what a real football looks like. I understand on your side of the pond a "football" looks a bit different.

Tex, I really appreciate your comments and information. Thanks for being there.

John

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Machelle and Pat,

Sounds like you're working your way to an excellent scan on Wednesday in doing everything right insofar as support and exercise and keeping an upbeat attitude. You're both in my thought and prayers for a great followup on Wednesday. The members on this board permeate soulnergy; feel it and keep it with you!

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Thank you Alice!I have read your posts on this board and you are so inspirational! We are in the wives club of the man we love so dearly. I will let you know how it goes on Wednesday. Thank you for the nice comments. Us wives need to stick together. My Pat says he thinks it is harder on "us" then the ones we love because we can't do anything about but give comfort and care.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

My husband says the same thing about it "being harder on us." And there are days when I would agree with him, but not many. How are you holding up? If you want to email me directly from the CSN email, don't hesitate. I know sometimes it is just healthy to vent and know someone else is where you are. Good luck to you and Pat. Take care. Keeping fingers and toes crossed that Wednesday's report is a good one.

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Thanks wedge for posting. Pat had his tumor for probably 2 years and had no signs. Then we thought he had kidney stones....alot of walking and waiting till he could pass it. Came to find out he was passing the cancer. Alot of mucus and stuff. The final nite we called Dr. Kasbari..our local Oncologist ...he said we needed to go to the emergency room now! He had us checked in before we got there. I called him, Dr. Kasbari at home and he took care of us. We then proceeded to get 9 units of blood. The tumor was huge by the time, one month later, that he had it taken out. They cut him from his breast bone down below his belly button. The surgeon had to move his ribs to get his kidney out and then his spleen. And it was in his vena cava. He has to get special immunizations every year now since his spleen was taken out. There are a whole lot more details I am keeping out, but it has been a long hard ride since November.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Tex,

Just saw your post. I haven't been on this board in quite awhile. I took a page out of Fox's book and have been travelling in the past few weeks. I had the opportunity to join my husband on a business trip to Paris & Amsterdam two weeks ago where we painted the towns red! Last week we both took much-needed time off and spent a week enjoying the spectacular scenery and weather in Sardinia, Italy. We toasted "to coming out the other side." Sure hope that stays true! Now I'm back in Switzerland and procrastinating on my work, so I thought I'd follow up and see how my friends on this board are doing. I think of you all often.

Life post-kidney cancer has been interesting. After 6 months it still isn't far from my mind, even though (thank God) my 3-month MRI was NED. Next (ultra-sound) scan is in November. Kidney cancer really does change your perspective on life, even if it has been 'cured'. Work has been crazy-busy though, so I don't have much time to think about it (probably a good thing).

I really hope you are continuing to do well (I haven't caught up on all the back-posts yet). You're a wonderful source of inspiration and support to everyone here and I love reading about your experiences and fresh ideas in fighting the good fight.

OLG xo

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

Made my day, hearing that you're getting on so well.

I'm curious to know what you're doing at work that is so demanding but I don't want to make you feel you have to keep posting to stay in touch. Just to hear, once in a while, that all is fine Will be very welcome though. The Fox Odyssey should be enough to persuade you to come visiting occasionally.

I have a clinic next week to discuss present state of play and to schedule my next CT scan. I hope to adopt your toast, with the same referent for 'the other side'!

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Tex,

I SO hope that your CT scan comes out perfectly. I will definitely be checking in to look for those results.

Work? I have a boutique marketing & communications firm specializing in the tourism and sports & leisure industry. My clients are mainly Swiss ski resorts, spas & gastronomy. I was extremely lucky not to lose a single client during my surgical recovery period (although I had to be creative managing deadlines). So, busy = success which is a very good thing. On the other hand, when it rains it pours and everybody needs their project completed the same day, which leaves me working very long hours. But no complaints -- LOVE my job :-).

I will be following Foxes Odyssey as well as yours and others on this board. I wish you all the very best with this journey.

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