new kidney network member

GivingupKidneyPie
GivingupKidneyPie Member Posts: 19
in Kidney Cancer #1

hello, all.

have only read about 20 posts but am appreciating all of them.

finding that joy & yuk-yuks help me release stress about cancer.

we had such a mighty fine belly laff from iceman's GIVING UP KIDNEY PIE comment, that it's my username.

any kidney jokes, comics, funny stories, things kids say about the kidney that make you laff, we appreciate, as it releases my tension.

aug. 21 is my surgery date at Cleveland Clinic for radical nephrectomy. 

any with successful experience with this surgery/ post-opt experience at the site/ home recovery if you have time, please share. 

thanks in advance.

 

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Sorry you had to join us

    GivingupKP,

     

    First things first. Get rid of the little buggar. You are going to a top location. How big is the little buggar so that we may respond appropriately. You may want to give up kidney beans also.

     

    icemantoo

     

     

    icemantoo

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #3
    icemantoo said:

    Sorry you had to join us

    GivingupKP,

     

    First things first. Get rid of the little buggar. You are going to a top location. How big is the little buggar so that we may respond appropriately. You may want to give up kidney beans also.

     

    icemantoo

     

     

    icemantoo

    iceman can get a stand-up stage...

    u made us laff again....

     

    the "little" bugger is a giant 9 centimeters... thanks for the ask...

    and we see you so being encouraging to everyone here.  you are truly wonderful people, icemantoo & team. so glad for your mighty fine trajectory with the K.C.

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    9cm

    GivingupKP,

     

    9cm is medium to large, not giant. At that size there is a risk for recurrance, but they will watch you agrressively. There  are several here with 10 cm or larger and doing very well. Sending good karma for surgery and done.

     

     

    icemantoo

  • Verbena
    Verbena Member Posts: 2 Member
    edited August 2018 #5
    My partner's was the size of

    My partner's was the size of a football! His recovery was fast. 

    Does anyone know about nivolumab and ipilimumab?

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #6
    Hi! If you click on the user

    Hi! If you click on the user photo, you can read the user's profile. My story of radical nephrectomy of a 12 cm monster is written there. I hope it helps you in some way. I am almost 5 months out post surgery now. Still healing. A long way to go yet. At 64 I am likely taking longer than you younger folks would. Plus it was a rough surgery. 10-12 hrs and I had a few teams of docs/surgeons to work on me!! I feel special.

    You can get all my details in the profile. I'm almost about to start month 5 of cabozantinib. First scan they said stable. Next one they found some little "somethings" here and there. Said they may or may not be anything....so we wait and watch.

    I hate waiting. SO hard to have to learn patience.

    All the best. Glad to meet you, very sorry for the reason. Glad you're getting that thing out of you. I hope you do well. Keep us posted!!

  • Manufred
    Manufred Member Posts: 241 Member
    #7
    Verbena said:

    My partner's was the size of

    My partner's was the size of a football! His recovery was fast. 

    Does anyone know about nivolumab and ipilimumab?

    Ipi/Nivo

    Verbena,

    Welcome.  Read my profile (just click on the photo) - I am one of the success stories around combination immunotherapy.  Then I'll be happy to answer any further questions.

    Best Wishes,

    Fred

  • Manufred
    Manufred Member Posts: 241 Member
    #8
    Radical Nephrectomy

    Hi GUKP,

    A radical is a major operation, although one I recommend especially for a medium to large tumour.

    Recovery will be OK if you are basically healthy, but it does take time.  I was in hospital for 8 days, then in bed at home (mostly) for another week or so before I could start taking short walks for excercise.  The paint was quite manageable with Paracetemol, and I stopped taking that after about 3 weeks.

    I went back to work after 5 weeks, but because it is my own company the boss was quite understanding and let me take it easy.  In the long term I am totally OK except for the recurrence, which you can read about on my profile.  My kidney function as shown by my frequent blood tests is about as normal as you can expect with only one kidney, and I lead a normal life style with respect to diet, work and exercise.

    Best Wishes, stay positive and keep on laffing,

    Fred

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #9
    icemantoo said:

    9cm

    GivingupKP,

     

    9cm is medium to large, not giant. At that size there is a risk for recurrance, but they will watch you agrressively. There  are several here with 10 cm or larger and doing very well. Sending good karma for surgery and done.

     

     

    icemantoo

    T.Y.

    Appreciaitons.

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #10
    Verbena said:

    My partner's was the size of

    My partner's was the size of a football! His recovery was fast. 

    Does anyone know about nivolumab and ipilimumab?

    T.Y.

    Appreciations.

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #11
    JoeyZ said:

    Hi! If you click on the user

    Hi! If you click on the user photo, you can read the user's profile. My story of radical nephrectomy of a 12 cm monster is written there. I hope it helps you in some way. I am almost 5 months out post surgery now. Still healing. A long way to go yet. At 64 I am likely taking longer than you younger folks would. Plus it was a rough surgery. 10-12 hrs and I had a few teams of docs/surgeons to work on me!! I feel special.

    You can get all my details in the profile. I'm almost about to start month 5 of cabozantinib. First scan they said stable. Next one they found some little "somethings" here and there. Said they may or may not be anything....so we wait and watch.

    I hate waiting. SO hard to have to learn patience.

    All the best. Glad to meet you, very sorry for the reason. Glad you're getting that thing out of you. I hope you do well. Keep us posted!!

    T.Y.

    Appreciations.

    Sorry to hear about your challening path.  I am 66, so likely I will have similar difficulties. Good to be prepared.

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #12
    Manufred said:

    Radical Nephrectomy

    Hi GUKP,

    A radical is a major operation, although one I recommend especially for a medium to large tumour.

    Recovery will be OK if you are basically healthy, but it does take time.  I was in hospital for 8 days, then in bed at home (mostly) for another week or so before I could start taking short walks for excercise.  The paint was quite manageable with Paracetemol, and I stopped taking that after about 3 weeks.

    I went back to work after 5 weeks, but because it is my own company the boss was quite understanding and let me take it easy.  In the long term I am totally OK except for the recurrence, which you can read about on my profile.  My kidney function as shown by my frequent blood tests is about as normal as you can expect with only one kidney, and I lead a normal life style with respect to diet, work and exercise.

    Best Wishes, stay positive and keep on laffing,

    Fred

    T. Y.

    Appreciations.

     

    Is there anything you would have done differently, before surgery?

    Or, now that you have some time past surgery, antyhing you would have done differently after....

     

    More thanks.

     

  • Retcenturion
    Retcenturion Member Posts: 240 Member
    #13
    Start prepping now

    Sorry to have you join this club. However this is the place for the questions you'll have. Mine was 10 cm that will be confirmed in your pathology report post op. Try and go back to past posts on scheduled surgeries. There are many tips. If friends ask to help enlist them. Your going to need meals, groceries stuff like that. We had some friends just set meals up each day for my family. I wasn't hungry. The 2 biggest things that helped post op were a gravity chair I slept in because I had a hard time sleeping in bed. And not being aware the meds, night sweats from anesthesia for several weeks. Loss of appetite. And the dreaded opioid constipation. Research now but not Dr Google, its bad but not as bad as you'll think it will be, try and relax, sending calming and positive thoughts to you and your loved ones.

     

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #14
    Retcenturion said:

    Start prepping now

    Sorry to have you join this club. However this is the place for the questions you'll have. Mine was 10 cm that will be confirmed in your pathology report post op. Try and go back to past posts on scheduled surgeries. There are many tips. If friends ask to help enlist them. Your going to need meals, groceries stuff like that. We had some friends just set meals up each day for my family. I wasn't hungry. The 2 biggest things that helped post op were a gravity chair I slept in because I had a hard time sleeping in bed. And not being aware the meds, night sweats from anesthesia for several weeks. Loss of appetite. And the dreaded opioid constipation. Research now but not Dr Google, its bad but not as bad as you'll think it will be, try and relax, sending calming and positive thoughts to you and your loved ones.

     

    Good advice

    Appreciations for sharing all this. It's good advice 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #15
    GivingupKidneyPie said:

    Good advice

    Appreciations for sharing all this. It's good advice 

    Nobody

    GivingupKP,

     

     

    nobody in their right mind wants to be constipated after a neph when that big day arrives.

     

     

    icemantoo

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #16
    Welcome GUKP! 

    Welcome GUKP! 

    Love your spirit! I know that waiting for surgery is the hardest part. Once it is behind you, you will be surprised at how fast your recuperate. Just remember that just because the outside seems to have healed, the insides take longer. Take it slow. I had a 13 cm tumor removed almost 5 years ago! I have never looked back!

    Take care and keep us posted!

    Hugs

    Jojo

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #17
    "Arnold"

    So fun, Jojo!

    I'm going to google that line & see if we can hear it. Sounds a riot, just up my alley.

     

    This is an odd question, perhaps, but since you mentioned about putting people at ease... can you, or anyone here, share how open you/your family were

    with the cancer diagnosis beyond immediate family/ best friends? (And people who had to know, for work or of course, a counselor.)

     

    I'm very private so what most people in my world know is that I have a urology problem, some people know I'm going to Cleveland Clinic

    for surgery but don't know what it's for  & some few others know it's for kidney cancer.  

     

    Is it easier to let everyone know? Or did anyone limit the cancer inforamation, at least until later?

     

    As always, appreciations for the visitors & commentors to the CSN. Especially those of you who are clear for so long & you keep visiting to help others. 

    So generous & truly, uplifting.

    Gradetul to be here.

     

  • GivingupKidneyPie
    GivingupKidneyPie Member Posts: 19
    edited August 2018 #18
    Retcenturion said:

    Start prepping now

    Sorry to have you join this club. However this is the place for the questions you'll have. Mine was 10 cm that will be confirmed in your pathology report post op. Try and go back to past posts on scheduled surgeries. There are many tips. If friends ask to help enlist them. Your going to need meals, groceries stuff like that. We had some friends just set meals up each day for my family. I wasn't hungry. The 2 biggest things that helped post op were a gravity chair I slept in because I had a hard time sleeping in bed. And not being aware the meds, night sweats from anesthesia for several weeks. Loss of appetite. And the dreaded opioid constipation. Research now but not Dr Google, its bad but not as bad as you'll think it will be, try and relax, sending calming and positive thoughts to you and your loved ones.

     

    "Centurion"

    just read your profile & want to offer our appreciations for your 25 years survice as an officer keeping the peace.

    and apprecciations again for your thoughts, expecially about trying to relax & stay calm before being up on the slab in the lab.

    (my hubby & tend to relieve stress with humor...)

    this site is the best place we've roamed to, except for the cleveland clinic site... and rambling, but does anyone have experience to share about the cleveland clinic, re: kidney cancer?

  • Rob57
    Rob57 Member Posts: 25
    #19
    Surgery Experience

    I had a radical nephrectomy of my left kidney in May of 2012. 7.1 x 5.5 with no other issues. Lymph nodes around the kidney were clean and the surgeon was very pleased with the result. I went in for surgery at 1 pm on Tuesday and was released the next day about 11 am and back home for lunch on Wednesday. It is major surgery and it took me about three weeks to be well enough to go back to work. When I did go back to work I would get very fatigued by about 3 pm, but was able to put in full days. After one or two weeks back, the fatigue was not much of a problem. It took me about six months to get back to normal. One thing that I found to be helpful was that I got up and walked every couple of hours, no matter the time during that first three weeks. I think that I spent about 7 to 10 days on the sofa downstairs. But I would walk like clockwork. More like shuffling between the living room and dining room, but I found that the activity really helped to speed my recovery. That being said, everyone is different and you just need to find what works best for you. The worst part of the whole experience was the ride home from the hospital. My doctor used a DaVinci robot to remove my kidney and I only had smaller incisions, about four 1 inch incisions to allow for the equipment and one 3 inch incision to remove the kidney. With that process they pump you up with CO2 to let the doctor have an area inside to work in. They need to roll you over an back while you are in the hospital to dissipate the gas. I had a lot of pain from the gas moving around on the ride home, but it was short lived and once I was home I really did not have a lot of pain. Just take it easy and you will be fine. I wish you good luck on your upcoming surgery. I hope that yours will be as uneventful as mine was. 

  • Manufred
    Manufred Member Posts: 241 Member
    #20
    Movement and Opioids

    Most of these replies have a similar trend. 

    There isn't anything I can think of that I would recommend pre-op, except just to be as healthy as you can, whatever that may be. 

    A good state of mind will help, and I found that telling people openly what was happening made it easier for me (and probably for them).  If you don't tell people, they start guessing and gossiping and things can get blown out of proportion.

    I had no real opioid constipation issues, but since I had a full open cut job I was on a drip for a few days while I was getting the Morphine (Patient Controlled Analgesia, meaning you get to push the button whenever you think you need some relief), and by the time they started feeding me I was off the stuff.

    Movement is medicine, especially for those of us over 60, so I agree with Rob57; do as much walking or shuffling as you can after your op, without pushing it too far.  You will get tired, so take the opportunity this gives you to sleep as much as you can.  I hope you have enough in-house support to get help with food, washing, etc.

    Good luck with it and try not to worry too much beforehand. What will be will be.......

    Best Wishes,

    Fred

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    #21
    Dear Giving

    I had a radical neph 11/27/17.  2.5 cm mass stage 3a grade 2 B"H.  I had no symptoms except my blood test showed a drop in my hemaglobin and my Dr. Did every test and ultimately a MRI w/w/o contrast when I was diagnosed with RCC.  I was in SHOCK and made the mistake of reading EVERYTHING about the disease -bad choice.  Here is where you will find caring people who give you advise first hand.  My advise to you is take it slow and easy.  Lean on anyone you can physically and mentally.  Walk but don't overdue it.  Take colase and miralax for constipation. The most important advise is make sure you get a good nite sleep.  I had no fatigue I think I was too anxious and I couldn't sleep at night.  I WAS A MESS.  My Dr. Gave me a prescription for sleep which really helped.  Remember your body is going thru a big operation-it needs time to come back to itself.  I am 8 months post surgery-my life will never be the same but that's ok.  With g-ds help I am so much better almost myself.  Good luck-June

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