Recovering from radical nephrectomy

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    jhsu said:

    Water intake
    Consider everything from the living environment to the amount of daily activities, I'd get myself hydrated based on my urine output color and its amount.

    If the color gets too yellowish, drink more water. And for a normal grownup person, the daily urine amount is in the range somewhere between 1000cc to 1400 cc.

    Jon

    Water intake
    Jon, thanks for your additions to this discussion and I think it's good general advice.

    I've also researched the subject a bit more online and found some items from the Mayo clinic site that are interesting. For instance, we get 20% of the fluid we need from our food. I read that it's common advice in The States to drink 8 x 8ounce glasses of water a day. It seems that most of us need more than that amount of fluid intake but that the recommended amounts should include all the tea, coffee, cola etc. that we consume. Coffee and cola used to be thought to be diuretic and therefore not helpful. Recent research, however, shows that to be false, at least until until you reach large amounts. That begs the obvious question how much is too much? After what I've read I've managed to reduce my coffee intake down to 'very heavy'.

    I remembered the tip that one of the most astonishingly effective ways to lose weight/reduce calories is simply to use smaller plates. Apparently, for most people that works better than nearly all other weight-loss manoeuvres. I've adopted the same approach with my coffee - just making half a mugful each time instead of a whole one. I rarely need more and often I find it's cooler than I like before I've drunk more than half a mug anyway. So, with the same number of mugs I'm halving my daily intake and it's pretty painless this way.
  • garym
    garym Member Posts: 1,647

    Water intake
    Jon, thanks for your additions to this discussion and I think it's good general advice.

    I've also researched the subject a bit more online and found some items from the Mayo clinic site that are interesting. For instance, we get 20% of the fluid we need from our food. I read that it's common advice in The States to drink 8 x 8ounce glasses of water a day. It seems that most of us need more than that amount of fluid intake but that the recommended amounts should include all the tea, coffee, cola etc. that we consume. Coffee and cola used to be thought to be diuretic and therefore not helpful. Recent research, however, shows that to be false, at least until until you reach large amounts. That begs the obvious question how much is too much? After what I've read I've managed to reduce my coffee intake down to 'very heavy'.

    I remembered the tip that one of the most astonishingly effective ways to lose weight/reduce calories is simply to use smaller plates. Apparently, for most people that works better than nearly all other weight-loss manoeuvres. I've adopted the same approach with my coffee - just making half a mugful each time instead of a whole one. I rarely need more and often I find it's cooler than I like before I've drunk more than half a mug anyway. So, with the same number of mugs I'm halving my daily intake and it's pretty painless this way.

    Coffee..
    T,

    Never had your problem with coffee, I love the smell, but can't stand the taste. My wife is a coffee drinker and she used to say I'd learn to like it when I grew up, but she has given up on me on both fronts now.

    I do share your fondness for wine however,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Coffee..
    T,

    Never had your problem with coffee, I love the smell, but can't stand the taste. My wife is a coffee drinker and she used to say I'd learn to like it when I grew up, but she has given up on me on both fronts now.

    I do share your fondness for wine however,

    Gary

    Getting tired; exercise; recovery from radical nephrectomy
    I live in Scotland. I discovered and joined this site exactly a month ago after researching UK resources. The UK equivalent is less busy and vibrant than this site. I'd never heard of the American Cancer Society (it's good, isn't it?!). I got here by Googling "recuperation from radical nephrectomy" and promptly found the thread 'Recovering from radical nephrectomy'. Bingo, but that way I started in the middle and had not explored other parts of the ACS site.

    I've now started delving into the site a bit more and been surprised to find how much of what we discuss has been well dealt with in other parts of the site. On the topics listed in my 'subject' line, there is superb treatment to be found. To get to this, click on the ACS logo at the top left of this page -> the Home page. Then go to "FIND SUPPORT AND TREATMENT' in the menu at the top of the page. From there, go to the "QUICK FINDER" menu (on the right, in purple) and select "Survivorship, During and After Treatment". The second item from the top is "STAYING ACTIVE' that will take you to "PHYSICAL ACTIVITY AND THE CANCER PATIENT" and "HOME CARE FOR THE CANCER PATIENT: EXERCISE" both of which are worth reading.

    Maybe, as newbies come on to these threads, we should point them to those articles as starting points after which they can benefit from the sense of community and friendship here, having got off to a fast start by reading those articles. I'm guessing I'm not alone in having found those items only after being on the threads for a while.

    T.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Getting tired; exercise; recovery from radical nephrectomy
    I live in Scotland. I discovered and joined this site exactly a month ago after researching UK resources. The UK equivalent is less busy and vibrant than this site. I'd never heard of the American Cancer Society (it's good, isn't it?!). I got here by Googling "recuperation from radical nephrectomy" and promptly found the thread 'Recovering from radical nephrectomy'. Bingo, but that way I started in the middle and had not explored other parts of the ACS site.

    I've now started delving into the site a bit more and been surprised to find how much of what we discuss has been well dealt with in other parts of the site. On the topics listed in my 'subject' line, there is superb treatment to be found. To get to this, click on the ACS logo at the top left of this page -> the Home page. Then go to "FIND SUPPORT AND TREATMENT' in the menu at the top of the page. From there, go to the "QUICK FINDER" menu (on the right, in purple) and select "Survivorship, During and After Treatment". The second item from the top is "STAYING ACTIVE' that will take you to "PHYSICAL ACTIVITY AND THE CANCER PATIENT" and "HOME CARE FOR THE CANCER PATIENT: EXERCISE" both of which are worth reading.

    Maybe, as newbies come on to these threads, we should point them to those articles as starting points after which they can benefit from the sense of community and friendship here, having got off to a fast start by reading those articles. I'm guessing I'm not alone in having found those items only after being on the threads for a while.

    T.

    Coming off morphine
    I've been on morphine since op. on 5th Dec. I'm now down to just 10mg of slow release and considering stopping today. I've been lucky with it so far. I tolerated it well and it gave me great pain relief (but didn't stop the first 2 or 3 days from being very rough). However, it didn't make me sleepy - full of energy all the time - and no side-effects other than a non-allergic rash that spread over my entire body and caused a lot of itching due to the histamine release that it often causes. (Incidentally, don't take anti-histamines with morphine. The best thing I found for the pruritus was moisturiser.)

    Feeling fine on morphine is all very well but there can be a downside. A quick look on the Web reveals that a lot of people have a terrible time trying to get off it. It seems to be somewhat similar to nicotine addiction in having psychological sequelae that can last for donkey's years. I think I am one of those patients who gets euphoric on morphine. Since running it down I've had return of some aches and pains - in the fingers and thumbs arthritic pain from old sports injuries and a few lower-back muscle twinges. I can take Co-codamol for the pain so no problem. However, sometimes in the last couple of days I've felt a bit flat. I don't intend to allow this to make me stay on the morphine and I'd be glad of thoughts from anyone who's had any problems getting off it.

    Naturally I'm hoping my good luck holds and I can just stop taking it today without becoming depressed but any advice would be appreciated.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Getting tired; exercise; recovery from radical nephrectomy
    I live in Scotland. I discovered and joined this site exactly a month ago after researching UK resources. The UK equivalent is less busy and vibrant than this site. I'd never heard of the American Cancer Society (it's good, isn't it?!). I got here by Googling "recuperation from radical nephrectomy" and promptly found the thread 'Recovering from radical nephrectomy'. Bingo, but that way I started in the middle and had not explored other parts of the ACS site.

    I've now started delving into the site a bit more and been surprised to find how much of what we discuss has been well dealt with in other parts of the site. On the topics listed in my 'subject' line, there is superb treatment to be found. To get to this, click on the ACS logo at the top left of this page -> the Home page. Then go to "FIND SUPPORT AND TREATMENT' in the menu at the top of the page. From there, go to the "QUICK FINDER" menu (on the right, in purple) and select "Survivorship, During and After Treatment". The second item from the top is "STAYING ACTIVE' that will take you to "PHYSICAL ACTIVITY AND THE CANCER PATIENT" and "HOME CARE FOR THE CANCER PATIENT: EXERCISE" both of which are worth reading.

    Maybe, as newbies come on to these threads, we should point them to those articles as starting points after which they can benefit from the sense of community and friendship here, having got off to a fast start by reading those articles. I'm guessing I'm not alone in having found those items only after being on the threads for a while.

    T.

    Coming off morphine
    I've been on morphine since op. on 5th Dec. I'm now down to just 10mg of slow release and considering stopping today. I've been lucky with it so far. I tolerated it well and it gave me great pain relief (but didn't stop the first 2 or 3 days from being very rough). However, it didn't make me sleepy - full of energy all the time - and no side-effects other than a non-allergic rash that spread over my entire body and caused a lot of itching due to the histamine release that it often causes. (Incidentally, don't take anti-histamines with morphine. The best thing I found for the pruritus was moisturiser.)

    Feeling fine on morphine is all very well but there can be a downside. A quick look on the Web reveals that a lot of people have a terrible time trying to get off it. It seems to be somewhat similar to nicotine addiction in having psychological sequelae that can last for donkey's years. I think I am one of those patients who gets euphoric on morphine. Since running it down I've had return of some aches and pains - in the fingers and thumbs arthritic pain from old sports injuries and a few lower-back muscle twinges. I can take Co-codamol for the pain so no problem. However, sometimes in the last couple of days I've felt a bit flat. I don't intend to allow this to make me stay on the morphine and I'd be glad of thoughts from anyone who's had any problems getting off it.

    Naturally I'm hoping my good luck holds and I can just stop taking it today without becoming depressed but any advice would be appreciated.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Coming off morphine
    I've been on morphine since op. on 5th Dec. I'm now down to just 10mg of slow release and considering stopping today. I've been lucky with it so far. I tolerated it well and it gave me great pain relief (but didn't stop the first 2 or 3 days from being very rough). However, it didn't make me sleepy - full of energy all the time - and no side-effects other than a non-allergic rash that spread over my entire body and caused a lot of itching due to the histamine release that it often causes. (Incidentally, don't take anti-histamines with morphine. The best thing I found for the pruritus was moisturiser.)

    Feeling fine on morphine is all very well but there can be a downside. A quick look on the Web reveals that a lot of people have a terrible time trying to get off it. It seems to be somewhat similar to nicotine addiction in having psychological sequelae that can last for donkey's years. I think I am one of those patients who gets euphoric on morphine. Since running it down I've had return of some aches and pains - in the fingers and thumbs arthritic pain from old sports injuries and a few lower-back muscle twinges. I can take Co-codamol for the pain so no problem. However, sometimes in the last couple of days I've felt a bit flat. I don't intend to allow this to make me stay on the morphine and I'd be glad of thoughts from anyone who's had any problems getting off it.

    Naturally I'm hoping my good luck holds and I can just stop taking it today without becoming depressed but any advice would be appreciated.

    Morphine, weight loss
    Off morphine now for a week. No post-op. pain and now taking no meds. After a month plus with no alcohol, great to be able to take a glass of red wine with a (modest-sized) fillet steak at dinner! Slight problem now sleeping - restlessness, probably due to morphine withdrawal - everything feels too heavy, too tight, too hot. Last night spent two sessions on computer during the small hours, just in pyjamas until I felt my bodily machinery had cooled to 'correct working temperature'.

    Awaiting call from GP later because a little concerned about bodyweight - left hospital a month ago at 162 lbs and now 142 lbs. Appetite fine and eating ok. Read that kidney only weighs around 1/4 lb so even adding in weight of 8cm tumour only gets to about 1lb, at most, so cause of loss of body mass not obvious.
  • rae_rae
    rae_rae Member Posts: 300

    Morphine, weight loss
    Off morphine now for a week. No post-op. pain and now taking no meds. After a month plus with no alcohol, great to be able to take a glass of red wine with a (modest-sized) fillet steak at dinner! Slight problem now sleeping - restlessness, probably due to morphine withdrawal - everything feels too heavy, too tight, too hot. Last night spent two sessions on computer during the small hours, just in pyjamas until I felt my bodily machinery had cooled to 'correct working temperature'.

    Awaiting call from GP later because a little concerned about bodyweight - left hospital a month ago at 162 lbs and now 142 lbs. Appetite fine and eating ok. Read that kidney only weighs around 1/4 lb so even adding in weight of 8cm tumour only gets to about 1lb, at most, so cause of loss of body mass not obvious.

    Glad to hear you are able to
    Glad to hear you are able to partake in a glass of wine, finally! I was not on morphine at any time so I don't have experience with it. I do know I mainly took painkillers (percocet) in order to sleep for a couple of hours. I was extremely restless after surgery and even developed restless leg syndrome which made it difficult to sleep. I actually struggled with sleep issues for months after surgery and I have no reasons why.

    As far as weight loss, I am not sure what is normal. I lost twenty pounds after surgery, but I also caught a nasty stomach virus ten days after surgery that I wound up in ER because of and lost 13 pounds in three days. I had a good appetite but found I could only eat very small portions- so the weight came off. I gained it back down the road.
    I hope all is well
    Rae
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    rae_rae said:

    Glad to hear you are able to
    Glad to hear you are able to partake in a glass of wine, finally! I was not on morphine at any time so I don't have experience with it. I do know I mainly took painkillers (percocet) in order to sleep for a couple of hours. I was extremely restless after surgery and even developed restless leg syndrome which made it difficult to sleep. I actually struggled with sleep issues for months after surgery and I have no reasons why.

    As far as weight loss, I am not sure what is normal. I lost twenty pounds after surgery, but I also caught a nasty stomach virus ten days after surgery that I wound up in ER because of and lost 13 pounds in three days. I had a good appetite but found I could only eat very small portions- so the weight came off. I gained it back down the road.
    I hope all is well
    Rae

    Weight loss
    Rae, many thanks - that's reassuring. No part of your experiences seems to have been exactly easy, making you one of the inspirations on these threads.

    Am seeing my doc. in a few hours time to give blood samples for analysis so with luck we'll soon know if there's anything amiss. Generally I'm feeling pretty good so it's probably nothing.

    T.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Weight loss
    Rae, many thanks - that's reassuring. No part of your experiences seems to have been exactly easy, making you one of the inspirations on these threads.

    Am seeing my doc. in a few hours time to give blood samples for analysis so with luck we'll soon know if there's anything amiss. Generally I'm feeling pretty good so it's probably nothing.

    T.

    Picking up
    Rae, it must have been hard to have sustained problems sleeping. I'm now almost 6 weeks post-op. and 2 weeks off morphine. The last two nights I've slept well for the first time in the past six weeks. I had many of the side effects of morphine (but not badly) and have had many of the withdrawal effects. I figure the hydrophilic propensities of morphine and the histamine release problems it gave me caused much of my weight loss and i'm beginning to regain a pound or two. I'll see my GP on Tuesday and get bloodwork results and hope to get path report soon.

    In the hope of finding helpful info. for my Wife's cousin (terminal liver cancer) I've been spending more time combing through the liver cancer threads but, as Jamie found in her brief sojourn there, it's a heart-breaking place to go. My Wife has asked me to stop going there because I find it so emotionally draining. It has, however, reinforced for me how comparatively lucky we are here.

    I see some posters put their own recovery stories out in their personal blogs. I feel they're better here because newbies are unlikely to find and make their way to an individual's blog whereas on these threads they can get a conspectus of the experiences of many different people all within a particular topic. Any views on this anyone?
  • judyfain
    judyfain Member Posts: 7
    nephrectomy recovery
    I too feel bad. I had my radical nephrectomy because of renal cell carcinoma on my right kidney 3 1/2 weeks ago. My skin on the right side is very sensitive. Not only is the wound not healed and tends to bleed periodically, I can not stand to have anything on that side of my stomach. The clothes, such as my under garments is very irritating, its uncomfortable. My left kidney aches which is concerning as I only have 1 kidney left. I am looking for any kind of diet that will improve the function of that kidney. I wanted to return to work after the fourth week but I just don't see that happening. Is it my age, or just the kind of surgery it is?
  • judyfain
    judyfain Member Posts: 7

    My doctor said the same
    My doctor said the same thing; 90%. I am very fortunate they found it early and it was contained in the kidney. Thank you for your support. I am looking forward to a great summer.

    survival rate
    My doctor didn't give me a percentage rate. The accidently found the tumor in the ER when they were looking for something else, and my tumor was about 5 cm, encapsulated, and cancer only in the tumor and not the surrounding tissue or lymph nodes. He said I was free of cancer and they would just monitor me every 6 months. I just want to know what to eat and drink now to improve the health of the remaining kidney.
  • judyfain
    judyfain Member Posts: 7

    I wish you all the best with
    I wish you all the best with your chemotherapy. I thank God everyday that my cancer was contained to the kidney.

    I wish only the best for you as well. My cancer was found by accident very early, it was stage I. Although I was in a lot of pain when it was found, I am happy I was in the ER that day. I had diverticulitis and while doing test and ct scan to diagnose it, they found that tumor. Thank you God for letting them find it them, or else it would still be growing inside of me. Good luck to all of you survivors.........
  • judyfain
    judyfain Member Posts: 7
    LisaJo said:

    I'm With You guys!
    Hey I had my right kidney removed 5 years ago in August. They said it was all contained but still I hold my breath with every CT scan. This July I will have an MRI and Chest X ray. I feel like I'm over the hump but every once in a while I get a little freaked out wondering if it in manifesting somewhere else........Only to be an incidental finding like the first one was.......I was only 47 when a hysterectomy lead me down this path....I really think that sometimes we all need a good awakening to really realize how lucky we are and how each day is special! Now I'm wide awake!

    Live, Love and Laugh!

    Lisa

    Are you saying the
    Are you saying the hysterectomy is how they found your renal cancer? I have a complete hysterectomy in October 2011, abdominally. I got what I thought was a virus on Christmas, I was sick for a week and then on the 31st I woke up in severe pain. I went to the ER and while doing a ct scan they located a tumor on my right kidney. I was horrified but I am so happy that I was in the ER that day, as today, I am cancer free. The surgeon cut me front to back on my right side, and it has been hell trying to get over this. My nephrectomy was 26 days ago and the incision still leaks blood periodically, because it still hasn't healed. I find it difficult to make it through the day without pain medicine. Good luck in you recovery.
  • judyfain
    judyfain Member Posts: 7
    DML0466 said:

    radical nephrectomy
    I had a radical nephrectomy of my right kindey on Aug 17th they had to go through my 10th & 11th rib and had to do it the old fashioned way resulting in a 10" inssion they also nicked my lung so I had a chest tube. I was wondering if you had the same procedure and how long it was before it felt like your ribs weren't collaping any more

    oh, that's why my ribs hurt.
    oh, that's why my ribs hurt. The details of that type of surgery was not explained to me. I just couldn't figure out why they hurt so bad. And I had to remain on oxygen for several days as well. It's been 26 days and I am still having pain in my ribs and omg, the pain in the back muscles, and between my shoulder blades......How long does it take to feel good. I find it hard still to move around for very long, I get fatigued and hurt so bad I won't to cry. Did you have any discomfort in your remaining kidney afterwards. I have been using cranberry and trying to choke down water as I hate the stuff because of the ache at times.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    judyfain said:

    nephrectomy recovery
    I too feel bad. I had my radical nephrectomy because of renal cell carcinoma on my right kidney 3 1/2 weeks ago. My skin on the right side is very sensitive. Not only is the wound not healed and tends to bleed periodically, I can not stand to have anything on that side of my stomach. The clothes, such as my under garments is very irritating, its uncomfortable. My left kidney aches which is concerning as I only have 1 kidney left. I am looking for any kind of diet that will improve the function of that kidney. I wanted to return to work after the fourth week but I just don't see that happening. Is it my age, or just the kind of surgery it is?

    Feeling sore
    Judy, sorry you're still feeling rough. The answer to your question is that it's probably just the kind of surgery it is. However, you haven't said how old you are, whether it was open surgery, how large the tumour was or what sort of work you do.

    A good balanced diet, including plenty of vegetables and fruits, no processed meats and plenty of fluid intake - water, juices, tea, coffee - is a good start. If you're anxious about it your GP or a nutritionist could discuss it with you and review what you're eating.

    Aches and pains and a little bleeding are par for the course and I guess most of us suffer irritation around the wound from our undergarments. Get your doc to take a look to see that the healing process is going as it should, particularly if the bleeding continues to be a problem. Depending on the answers to the above questions (your age, type of work, size of tumour etc) it may be a bit too soon to expect to get back to work full time. Can you ease back into it gradually, increasing your hours as you get back to normal?

    I hope things get better soon - I'm sure they will - but it does take a while to feel more like your old self again.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Feeling sore
    Judy, sorry you're still feeling rough. The answer to your question is that it's probably just the kind of surgery it is. However, you haven't said how old you are, whether it was open surgery, how large the tumour was or what sort of work you do.

    A good balanced diet, including plenty of vegetables and fruits, no processed meats and plenty of fluid intake - water, juices, tea, coffee - is a good start. If you're anxious about it your GP or a nutritionist could discuss it with you and review what you're eating.

    Aches and pains and a little bleeding are par for the course and I guess most of us suffer irritation around the wound from our undergarments. Get your doc to take a look to see that the healing process is going as it should, particularly if the bleeding continues to be a problem. Depending on the answers to the above questions (your age, type of work, size of tumour etc) it may be a bit too soon to expect to get back to work full time. Can you ease back into it gradually, increasing your hours as you get back to normal?

    I hope things get better soon - I'm sure they will - but it does take a while to feel more like your old self again.

    movingonnow
    movingonnow, your moniker fits the name of the thread very well and, as you can see, we already have a thread of that name. It happens to be the place where I came in [and will probably be where I will make my exit] and the first words I posted here, in November, a few days before my nephrectomy, were:

    "Greetings from across The Pond

    I hope this superb thread stays active since it's obviously done a lot for many people."

    Because we have an endless stream of newcomers, understandably wanting to raise questions prior to their treatment, this thread tends to go into abeyance since it deals with the period after surgery. However, that is, in some ways, the more important period and is one we all hope to survive into and with the further hope that it will last for a long time!

    You were doubtless stage 4 but perhaps you could confirm that and tell us the size of your primary lesion and your pathology - clear cell or not?

    Your experience with IL2 will be of value to many members here. Have you been given any explanation of why it cleared up your lung mets but had limited effect on your primary and apparently no effect on your cancerous lymph nodes?

    Reading here, you'll see that your high level of fitness will certainly have contributed significantly to your rapid recovery and will have improved your prognosis. You'll learn a lot more from posters here that should help you in addition to the fine support you already enjoy.

    I've pulled this thread up again because I used it as a bit of a personal blog, in the way that our poster boy "foxhd" has with his fascinating threads entitled MDX-1106 and I intend soon to add a few more reflections on recovery for someone in my current condition. However, you may find, as I certainly did, that reading through it gives you a useful fast start on the subject from the experiences of a wide range of members following their surgeries.
  • movingonnow
    movingonnow Member Posts: 6

    movingonnow
    movingonnow, your moniker fits the name of the thread very well and, as you can see, we already have a thread of that name. It happens to be the place where I came in [and will probably be where I will make my exit] and the first words I posted here, in November, a few days before my nephrectomy, were:

    "Greetings from across The Pond

    I hope this superb thread stays active since it's obviously done a lot for many people."

    Because we have an endless stream of newcomers, understandably wanting to raise questions prior to their treatment, this thread tends to go into abeyance since it deals with the period after surgery. However, that is, in some ways, the more important period and is one we all hope to survive into and with the further hope that it will last for a long time!

    You were doubtless stage 4 but perhaps you could confirm that and tell us the size of your primary lesion and your pathology - clear cell or not?

    Your experience with IL2 will be of value to many members here. Have you been given any explanation of why it cleared up your lung mets but had limited effect on your primary and apparently no effect on your cancerous lymph nodes?

    Reading here, you'll see that your high level of fitness will certainly have contributed significantly to your rapid recovery and will have improved your prognosis. You'll learn a lot more from posters here that should help you in addition to the fine support you already enjoy.

    I've pulled this thread up again because I used it as a bit of a personal blog, in the way that our poster boy "foxhd" has with his fascinating threads entitled MDX-1106 and I intend soon to add a few more reflections on recovery for someone in my current condition. However, you may find, as I certainly did, that reading through it gives you a useful fast start on the subject from the experiences of a wide range of members following their surgeries.

    Thank you for the
    Thank you for the acknowledgement, Texas wedge.

    I have clear cell carcinoma, yes. Don't know the exact size of the tumor that surrounded the kidney - will find out much more as I meet with my oncologist this Friday. I was informed early on that the IL-2 treatments would never be enough to shrink the kidney tumor so it was expected that I would have the kidney removed. I am not sure why the lymph nodes did not respond to the treatment as I had hoped, but I was told that some patients have greater success with some organs but less in others. Again, I will meet with the doctor this Friday to get answers to those questions. I am hopefull that the lymph nodes can be addressed - that is my prayer right now.

    I am happy to say that less than 3 weeks out and I did a nice 2 mile speed walk on the treadmill today with no discomfort. I also watched my buddies play basketball and realized that such level of exercise is a ways off for me, but I am hoping that I will be back at it before the end of the year.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Thank you for the
    Thank you for the acknowledgement, Texas wedge.

    I have clear cell carcinoma, yes. Don't know the exact size of the tumor that surrounded the kidney - will find out much more as I meet with my oncologist this Friday. I was informed early on that the IL-2 treatments would never be enough to shrink the kidney tumor so it was expected that I would have the kidney removed. I am not sure why the lymph nodes did not respond to the treatment as I had hoped, but I was told that some patients have greater success with some organs but less in others. Again, I will meet with the doctor this Friday to get answers to those questions. I am hopefull that the lymph nodes can be addressed - that is my prayer right now.

    I am happy to say that less than 3 weeks out and I did a nice 2 mile speed walk on the treadmill today with no discomfort. I also watched my buddies play basketball and realized that such level of exercise is a ways off for me, but I am hoping that I will be back at it before the end of the year.

    Sounds as if you're bouncing back fine. Can't run before you can walk and full recovery takes months or more. Stick at it and it'll come back.

    I've just done 5K on my rowing machine and was shocked to find I'd lost a bit of ground just over the Olympic fortnight which I spent (in the UK) as a couch potato. However, I'm quietly confident that in a few weeks time I'll top the world indoor rowing rankings for the category: lighweight males over 70 with metastatic sarcomatoid chromophobe RCC (but I have to admit it's likely to be a smallish group).

    I have more than a passing interest in your upcoming doctor's appointment re your lymph nodes. I'm presently awaiting my next CT scan and anxious to know whether enlarged retroperitoneal nodes have grown or subsided. I guess lymph nodes are less easily treated than lung nodules which seem to respond very well to several quite different drugs. So I figure that's where our exercise and diet (and meditation etc) come in to help our immune system do what medicine still can't! Anyway, here's hoping our lymph nodes don't give us too much grief.
  • therapture
    therapture Member Posts: 25

    Sounds as if you're bouncing back fine. Can't run before you can walk and full recovery takes months or more. Stick at it and it'll come back.

    I've just done 5K on my rowing machine and was shocked to find I'd lost a bit of ground just over the Olympic fortnight which I spent (in the UK) as a couch potato. However, I'm quietly confident that in a few weeks time I'll top the world indoor rowing rankings for the category: lighweight males over 70 with metastatic sarcomatoid chromophobe RCC (but I have to admit it's likely to be a smallish group).

    I have more than a passing interest in your upcoming doctor's appointment re your lymph nodes. I'm presently awaiting my next CT scan and anxious to know whether enlarged retroperitoneal nodes have grown or subsided. I guess lymph nodes are less easily treated than lung nodules which seem to respond very well to several quite different drugs. So I figure that's where our exercise and diet (and meditation etc) come in to help our immune system do what medicine still can't! Anyway, here's hoping our lymph nodes don't give us too much grief.

    Well on my way to recovery...
    First, let me start by saying I found this forum greatly helpful, and signed up last night just so I could post my story. I am a 42yr old male, very active runner, have completed several marathons and half marathons. I raced motocross for 15 years and have had some big surgeries, shattered femur, arms broken, collarbones, the typical stuff :-) I have NEVER smoked cigs, light drinker, never worked around bad chemicals, but my parents were heavy smokers until the time I left the house at 21yrs old and got married. Don't know if that has anything to do with it but still...I was basically a fit, healthy adult male with no history of cancer in our family.

    On 11-27-12 I started urinating large amounts of blood. 2 hours later I was doubled over in pain, thinking I had kidney stones, I went to the ER, and an hour later after a CT scan I was given the bad news of a 7cm+ tumor on the right kidney. Devastating news to say the least. Sent home with prescriptions for pain meds (hydrocodone)and an appointment with my urologist for 11-29. After suffering the next day, still large amounts of blood in the urine, blood clots, the whole deal, I saw the doc on Friday morning and he confirmed that yes, the entire kidney needed to come out, but he was going to be out of town the following week, and scheduled surgery for 12-12. I thought I could make it until then, but again on Saturday evening I was having copius amounts of pain that the pain meds didn't even make a dent in. The pain was so bad that I would start getting full body muscle tremors/shivers/teeth chattering, followed by vomiting @2 hours after the pain set it. We took another trip to the ER and they confirmed my urine was 90% pure blood, I was dehydrated, blood salts low, etc., so they checked me into a room.

    The doc came Sunday morning, and tried to start me on amicar therapy to control the bleeding, well, it did for a bit, with terrible side effects of mental confusion, nausea, and a totally hungover feeling. Then the bleeding started again profusely Sunday evening, and I told him that I was going to pursue other doctors if he could not do something sooner than December 12th. He did at that time assure me he would talk with a colleague. After consulting with 2 more urologists, we settled on a new doc to my area, that was trained in laporoscopic surgery, and he was able to schedule me for Tuesday, 12-4 surgery. I went into the OR at 1:00pm and was in recovery at 6:30, and back to my private room, doc said my vitals came right back up and had little bleeding upon the removal that there was no reason to put me into ICU. I had 11 staples from my belly button up, plus 3 smaller incisions where the tools went, for a total of 4 incisions and 22 staples. VERY sore. But daily I improved, started walking the halls on Wednesday afternoon, actually stopped taking pains meds at 8:30 on Thursday night, and was given the green light to go home late Friday afternoon.

    I have continued to improve very fast, have used ZERO pain meds since leaving the hospital, and was even able to go to work on 12-10 (parts manager at auto dealership, light duty obviously) and leave when I needed to, usually around 1:00pm. I have some residual pain still, coughing or sneezing can hurt, but it's getting better daily. I saw my doc again today to get staples removed and the pathology report as follows:

    Stage 2 tumor at 7.3cm, grade 3 severity, clear cell RCC. The cancer was completely contained/encapsulated within the kidney and I show no signs of any other tumors at this point. Checkups in 6 months, every 6 months for a couple years, then every year thereafter.


    No doubt my fitness helped me recover, plus I got lucky and found a GREAT doctor for my surgery, and I look forward to being able to run again in a few weeks, and I plan on doing a 2013 marathon late in the year with my brother and best friend together, as my "come back challenge" and hopefully find some sponsors to donate so that I can give any proceeds to cancer research. I will run it for those that can't, for those that want to, and for those that have not survived this cancer, and I will do it with pride and honor. I was kind of done with marathons since they take so much training, but I am going to do one more as a kind of "giving the bird" to cancer. I understand this is a lifelong, life changing event, and I have already started lifestyle and dietary changes to help ensure a long life for my family, my wife, and my kids aged 8 and 13.

    I just wanted to post my story so that others can see that this is not the end of the road, it can be beat, it will get better, and that you can be strong and beat this ****. I'll have to say, it has been a rough process, everything happened so fast that my emotions never really got a chance to catch up, until today, the news was so good at this point that I simply could not help myself from tear-ing up, the "race face" I have had on for my family, for the last 8 days since surgery served me well. It felt good to let it all out.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Well on my way to recovery...
    First, let me start by saying I found this forum greatly helpful, and signed up last night just so I could post my story. I am a 42yr old male, very active runner, have completed several marathons and half marathons. I raced motocross for 15 years and have had some big surgeries, shattered femur, arms broken, collarbones, the typical stuff :-) I have NEVER smoked cigs, light drinker, never worked around bad chemicals, but my parents were heavy smokers until the time I left the house at 21yrs old and got married. Don't know if that has anything to do with it but still...I was basically a fit, healthy adult male with no history of cancer in our family.

    On 11-27-12 I started urinating large amounts of blood. 2 hours later I was doubled over in pain, thinking I had kidney stones, I went to the ER, and an hour later after a CT scan I was given the bad news of a 7cm+ tumor on the right kidney. Devastating news to say the least. Sent home with prescriptions for pain meds (hydrocodone)and an appointment with my urologist for 11-29. After suffering the next day, still large amounts of blood in the urine, blood clots, the whole deal, I saw the doc on Friday morning and he confirmed that yes, the entire kidney needed to come out, but he was going to be out of town the following week, and scheduled surgery for 12-12. I thought I could make it until then, but again on Saturday evening I was having copius amounts of pain that the pain meds didn't even make a dent in. The pain was so bad that I would start getting full body muscle tremors/shivers/teeth chattering, followed by vomiting @2 hours after the pain set it. We took another trip to the ER and they confirmed my urine was 90% pure blood, I was dehydrated, blood salts low, etc., so they checked me into a room.

    The doc came Sunday morning, and tried to start me on amicar therapy to control the bleeding, well, it did for a bit, with terrible side effects of mental confusion, nausea, and a totally hungover feeling. Then the bleeding started again profusely Sunday evening, and I told him that I was going to pursue other doctors if he could not do something sooner than December 12th. He did at that time assure me he would talk with a colleague. After consulting with 2 more urologists, we settled on a new doc to my area, that was trained in laporoscopic surgery, and he was able to schedule me for Tuesday, 12-4 surgery. I went into the OR at 1:00pm and was in recovery at 6:30, and back to my private room, doc said my vitals came right back up and had little bleeding upon the removal that there was no reason to put me into ICU. I had 11 staples from my belly button up, plus 3 smaller incisions where the tools went, for a total of 4 incisions and 22 staples. VERY sore. But daily I improved, started walking the halls on Wednesday afternoon, actually stopped taking pains meds at 8:30 on Thursday night, and was given the green light to go home late Friday afternoon.

    I have continued to improve very fast, have used ZERO pain meds since leaving the hospital, and was even able to go to work on 12-10 (parts manager at auto dealership, light duty obviously) and leave when I needed to, usually around 1:00pm. I have some residual pain still, coughing or sneezing can hurt, but it's getting better daily. I saw my doc again today to get staples removed and the pathology report as follows:

    Stage 2 tumor at 7.3cm, grade 3 severity, clear cell RCC. The cancer was completely contained/encapsulated within the kidney and I show no signs of any other tumors at this point. Checkups in 6 months, every 6 months for a couple years, then every year thereafter.


    No doubt my fitness helped me recover, plus I got lucky and found a GREAT doctor for my surgery, and I look forward to being able to run again in a few weeks, and I plan on doing a 2013 marathon late in the year with my brother and best friend together, as my "come back challenge" and hopefully find some sponsors to donate so that I can give any proceeds to cancer research. I will run it for those that can't, for those that want to, and for those that have not survived this cancer, and I will do it with pride and honor. I was kind of done with marathons since they take so much training, but I am going to do one more as a kind of "giving the bird" to cancer. I understand this is a lifelong, life changing event, and I have already started lifestyle and dietary changes to help ensure a long life for my family, my wife, and my kids aged 8 and 13.

    I just wanted to post my story so that others can see that this is not the end of the road, it can be beat, it will get better, and that you can be strong and beat this ****. I'll have to say, it has been a rough process, everything happened so fast that my emotions never really got a chance to catch up, until today, the news was so good at this point that I simply could not help myself from tear-ing up, the "race face" I have had on for my family, for the last 8 days since surgery served me well. It felt good to let it all out.

    What a story!!
    Like you, I gained a great deal from reading this thread (which I found by chance by doing a Google search) before I made my first-ever post - have made one or two since then on this and other forums.

    "No doubt my fitness helped me recover" - I reckon you've provided one of the best proofs of this concept that we've seen!

    Glad to learn that you're doing so well and I bet Christmas is going to be a whole lot better than you could have believed just before your nephrectomy.

    One question and a word of advice:-
    Have you had an explanation of why you suddenly suffered such extreme blood loss and pain - it seems very unusual for a comparatively moderate malignancy (Stage 2 Grade 3)? Maybe it was a blessing in disguise since it prescipitated very fast response and also finding a really good surgeon.

    Now to the advice - don't presume too much on your great fitness level. It will pay huge divdends in your recovery now but don't push your luck. If you're too macho it could set back your recovery unnecessarily. We've had several members in the past who were fairly elite athletes who bounced back too vigorously and paid a price in fatigue a few months down the line and delayed their recoveries gratuitously. For the next month or two make haste slowly. That way you'll make a better showing in that marathon. I'll be watching! Good luck with your recovery, your marathon training - LATER - and have the best Christmas ever.