THE PATH TO RC

6 years 6 months ago - 6 years 6 months ago #54170 by Alan
Replied by Alan on topic THE PATH TO RC
LoTech,

Good the hear from you! Sounds like you are making progress. Thanks for checking in as you are an inspiration to ALL of us!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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6 years 6 months ago #54169 by dtat60
Replied by dtat60 on topic THE PATH TO RC
Lotech,

So glad to you are on the mend. I know it's been a long journey for you and your family. Hoping things get better and better as time goes on. Are you in the hospital still or at some sort of rehab center? Very good to hear from you.

Peace and Love,
Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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6 years 6 months ago - 6 years 6 months ago #54167 by Jack R
Replied by Jack R on topic THE PATH TO RC
Lotech,

Man ,it is really really good to hear from you.

It sounds like you are finally on the mend, and that things are turning your way.

I KNEW YOU WOULD MAKE IT WORK !

Welcome back, don't be a stranger.

Way To Go,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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6 years 6 months ago #54165 by lotech35
Replied by lotech35 on topic THE PATH TO RC
Yes! I have a pouch still got a few bugs to work out but the pouch right now has a filet and bag for healing. Soon I hope just the pouche!

Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.

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6 years 6 months ago #54164 by lotech35
Replied by lotech35 on topic THE PATH TO RC
Jack ,

Everything you said I've been dealing with ! So I'm not the only one. I'm back from another hospital stint, bacteria returned. Now I have a mainline in my neck and 24/7 antibiotic pumping thru it. I feel good of course with all the drains and lines I'm pretty much ready for Halloween. You words are encouraging thanks again !

Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.

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6 years 7 months ago - 6 years 7 months ago #53988 by Jack R
Replied by Jack R on topic THE PATH TO RC
Lotech,

Been thinking about you and your comment of not being able to walk yet. I predict that you will get past that challenge, but that it will take a bunch of effort on your part.

It has been 17 years since my accident. They told my wife that I would lose both legs and one arm. When I came to three weeks later, I learned that she would not allow amputation. Great to have her by my side.

After a month in a coma, you are as weak as a kitten. All the hard work you did before surgery puts you in a good position to regain strength, but the strength is not there for you now. You likely have started exercises of pushing a pillow with your feet, and lifting your legs as you lie in bed. Learning to walk again truly starts from square one, except they don't let you crawl around on the carpet and drool.

First time I was transferred to a toilet from bed (bedpans deserve their own message) I was absolutely shocked to find out that I could not stand up from seated. There was nothing there. Moved back to sitting on the edge of the bed, I could not get my feet and legs in bed without help. Sucks. (Does any of this sound familiar ?)

Make sure that your physical terrorist (therapist) works you hard. Do all the exercises, no matter how silly they seem - every bit of strength added, every muscle awakened, gets you closer to walking again. Do not ignore "gait training" - it is all too easy to find a way of moving and stick with it, but there may be better ways to move that will require someone to make you do it. Learn to check out ALL the mobility muscles - as soon as you notice one that is not responding, get help before you fall in to a poor walking problem. Unused muscles become a real problem later. You can do this.

17 years and I still use a cane on the good days, but at least dogs and cats know I mean business when I encourage them to not run under my feet. There is a walker in the closet for the really bad days. Everybody adjusts, and learns to not notice, no matter how many times a cane falls over at the dinner table. Stay Vertical.

I know it is tough dealing with loss of strength, learning to eat, deal with the diversion and whatever else will pop up all at once. But that's the way it is. Push yourself, but don't be hard on yourself. A new normal can be a rough thing to adjust to, but it is a heck of a lot better than no normal at all.

Best to you and yours, as you all work together and get through this. You can do it. It is all uphill from here.

Excelsior,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: lotech35

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