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NED - my first follow-up scan!

DMike's picture
DMike
Posts: 227
Joined: Nov 2011

I had my first 6 month follow-up scan today after a partial nephrectomy in December. Everything looked great, a great big NED. I'm really happy and relieved!
The only bummer of the day was learning that my doctor is leaving the university. I'm really sad about that.
But now it's time to celebrate, take a deep breath, and jump into the next 6 months of my life full throttle!
--David

Shan_39
Posts: 17
Joined: Apr 2012

David,

Congrats on your scan results! I just had my 3 month follow-up scan after full nephrectomy on March 1,2012 and I also got a great big NED!! Woohoo cheers to us! It's a great day to be alive! My next goal is to sign up for a fitness boot camp!

Shannon

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

Thanks to you both for sharing your good news - long may it continue. Get that exercise prog under way Shannon. David's there already but, correct me if I'm wrong David but I think you'll find there isn't a throttle on your bike! :)

matchframe
Posts: 58
Joined: May 2012

Always good to hear news like this!!

foxhd's picture
foxhd
Posts: 1712
Joined: Oct 2011

Congrats David!!!!!!!!!!!A few of us want to rub elbows and share your secret formula. Just cut and paste your report every 6 months!

Shan_39
Posts: 17
Joined: Apr 2012

Tex-

I'm working on the exercise program. :) I just walked two miles tonight and I'm signed up to begin fitness boot camp on July 10. I'm kind of liking this exercise thing!

Shannon

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

Even more congratulations are in order then, Shannon. More power to your elbow (and ankles and kness and hips!) We old guys like to stay fit for medical reasons but you young ladies have the added motive of looking even better from a bit of healthy exercise. Enjoy that boot camp.

DMike's picture
DMike
Posts: 227
Joined: Nov 2011

Thanks everybody and congratulations to you Shannon!

Yeah Tex, there's no throttle on the bike (maybe my legs) but the expression fit the way I felt! By the way, Tex, I'm "half-British." My Mom is from Derbyshire. My Dad was stationed at Polebrook in WWII. He met her waiting in line to see a movie in Nottingham, and she later became a war bride. My Grandfather had always told her whatever you do, stay away from the American GIs!

I visited in 2010. I saw the Tour de France stage in Hyde Park and on the Mall in London. We had a great time and saw the Polebrook memorial, a lot of central England, York and Whitby. I have family in Crich, Ripley and Loscoe.

Fox, I like the cut and paste idea!

My doctor told me again how lucky I was to have caught this early because of the sarcomatoid features involved.

--David

alice124's picture
alice124
Posts: 859
Joined: Mar 2012

Mike - Thrilled for you. That is such great news! I'm sorry you'll be losing your doctor but it sounds like you'll be a low maintenance patient here on out!

Celebrate! I'll have a drink tonight in honor of your and Shannon's reports.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Thats wonderful DMike!!!! I have my first scan in August.. its going to be good too :-)

donna_lee's picture
donna_lee
Posts: 353
Joined: Feb 2009

Oh, guess that's keep on pedaling.
It's sad when good docs move on, especially in a University setting. Mine went from Oregon Health Sciences University to the University of Arizona. But it was a great opportunity for him to further his research and do great things. He was already a big name in Surgical Urological Oncology. That's a mouthful to say rapidly.
Keep up the great attitude.
donna_lee

icemantoo's picture
icemantoo
Posts: 1365
Joined: Jan 2010

It is always a good feeling to hear that my fellow club members keep hearing NED NED NED. May the Neds keep coming for each of you. My 10 year NED hopefully will be in a few months after my next exam which is due next month. The last few have been ultrasoundz.

Icemantoo

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

iceman, in view of all the postings anxious about contrast and radiation (iodine dye with CT and gadolinium with MRI) I'm probably not alone in being keen to hear the reason(s) for your last few scans being Ultra Sound ones.

I'm guessing that that modality is considered adequate at your present stage, i.e. 10 years clear and in great shape, with the benefit of avoiding the hazards of the other imaging technologies. Any info. would be gratefully received, as ever.

DMike's picture
DMike
Posts: 227
Joined: Nov 2011

My doctor told me he wants to do a CT scan with contrast for my 12 month checkup but he will then switch to ultrasound for the next round. Of course, I'll have a new doctor so I'll quiz him on this strategy.

One of my problems in getting clear answers from the doctor after scans is that I have a shellfish allergy so they make me take a benadryl before the IV just as a precaution. So, I'm a bit fuzzy when I meet with the doctor an hour later. Luckily my wife is with me for the visit.
--David

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

Shellfish allergy not funny - the last thing you need is mussel spasm when you're biking!

The switch to US is presumably grounded in a fear of too much radiation, given you're still young and can look forward to many more scans - ?

DMike's picture
DMike
Posts: 227
Joined: Nov 2011

Yes, lowering radiation exposure is the reason they gave me for the switch, but Tex, I don't really consider 57 to be young, do you? Also, I'm not looking for mussel spasms on or off the bike! :)
--David

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

David, I do consider 57 to be young (I'm 12 years older than you and just recently I've begun to dread middle age.)

There have been debates going on both here and on ACOR about contrast dyes and it may be that in some circles there is greater anxiety about the contrast risks than the radiation risks with CT scans (and also MRI scans).

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

Thanks for the bit of bio David - I always felt there was something a bit special about you ;-) Nice to have family in the Dales and Moors - some lovely country there.

I'll be looking out for your name in the T de F in future, with the progress you're making!

Your reference to what your doctor said is worth mentioning to our new lady who is so concerned about her sister-in-law who also has sarcomatoid features at a comparatively young age.

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

Way to go David!!!

Just back from vacation and it's great to hear your news.

Be careful doing the happy dance on your bike though.

Gary

DMike's picture
DMike
Posts: 227
Joined: Nov 2011

Thanks everybody. Your support is wonderful!
--David

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

May the force be with you!! LOL....waiting for NED for my son, by george I will get it for him :-)

DDBurkhardt
Posts: 13
Joined: May 2012

Hi David,

First I would like to say congratulations on a clean CT scan. That must be an absolutely wonderful feeling.

It's been 6 weeks since my nephrectomy so I have a ways to go before my CT scan, but I have no idea what NED stands for. I feel kind of stupid for not knowing so could you please enlighten me.

Thanks

Debbie

DDBurkhardt
Posts: 13
Joined: May 2012

Hi David,

First I would like to say congratulations on a clean CT scan. That must be an absolutely wonderful feeling.

It's been 6 weeks since my nephrectomy so I have a ways to go before my CT scan, but I have no idea what NED stands for. I feel kind of stupid for not knowing so could you please enlighten me.

Thanks

Debbie

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

NED = No Evidence of Disease

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