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Recovering from radical nephrectomy

wendyleigh
Posts: 9
Joined: Jun 2009

I had a radical nephrectomy on May 06, 2009. I had renal cell carcinoma on my right kidney. The tumor was 7cm. My body is still not back to normal and I feel like I should be doing a little better than I am. I still find it very difficult to wear pants. I also feel like a lot of people think well she had the surgery to take out the kidney and the cancer is gone so she is fine now and it is all over with. Problem is I don't feel that way. Everything happened so fast. I am worried it will come back somewhere else. Does anybody else feel this way?

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

T,

That is quite a story, its a good thing you were is such good physical condition going into it or the recovery would be much worse. Don't fret too much about all the nuisance things like meds and body condition, for now just do whatever is necessary, get plenty of rest, hydrate, and let nature take its course. We have some snow on the ground here, but it is supposed to rain tomorrow, its probably a good thing that snow is moving in over there, you will need a little extra healing time before swinging the sticks, you should be able to work on your short game pretty soon though.

Hang in there,

Gary

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

Gary, thanks for your continuing good advice. I agree that prior condition seems to have a marked effect on recovery. Yesterday i took a stroll of a mile or so with my Wife around the golf course we live on. It's around -2C. but recent gales have blown out and so it's crisp but pleasant here - we've dodged the snow so far. I'm keeping hydrated but don't seem to be tired, other than finding myself getting a bit sleepy at times while reading. I'm sleeping pretty well for 6 or so hours (broken by the inevitable dash in the middle of the night) and most of the other 17 or 18 hours I'm spending writing at my Mac and doing research on the Web. On other threads I see advice that the second week of recovery is when one can get tempted to push oneself too hard so I'm going to be careful.

I'm not thinking about any short game work yet but plan to try some very slow, gentle mirror drills in a while.

Right now I'm bothered by a solid rash which started in my groin and has steadily spread up to my neck and is now extending down to approach the back of my knees. I'm still on sizeable doses of morphine with consequent constipation. I speculated that the rash might be due to the laxative I was put on in the hospital and my GP has changed that but the rash continues. After one dose of the new laxative I think I won't need any more of that sort of medication and my doctor's judgment is that the rash is most likely due not to the laxative but to the morphine.

The itching is not too troublesome and I don't fancy giving up the morphine in a rush! I'm hoping that the allergic reaction doesn't develop into worse symptoms.

I'd be grateful if you or anyone else who happens to read this could tell me if they've had this problem and if so what seemed the best way of tackling it.

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

T,

It seems like they should be able to give you something for the rash, perhaps benedryl, you shouldn't be left to suffer needlessly, ask the doc.

Other than constipation I had no physical issues with morphine, but I hated what it did to my brain. My first experience was in the icu after my accident where the push of a button administered morphine for pain. While it controlled the pain nicely, it also turned me into a blithering fool unable to answer even simple questions intelligently, although I thought I was pretty smart (my wife straightened me out on that). I expressed my desire to stop using morphine asap to the nurses, it made their job more difficult because they had to delivery pills every four hours, but they obliged.

When I checked in for my kidney removal, a different hospital, I told them I preferred not to use morphine and they agreed to disconnect it as soon as I was able to tolerate oral pain meds without any issues, I never had the nausea that many of our club members suffered with and was off the morphine quickly. I then had another surgery five days later to repair some of the injuries from my accident and they used an epidural (spinal block) which numbed my left chest completely for that, much better. I continued to take oral meds for only a short time once I got home.

Not sure if this helps,

Gary

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

Oh boy Gary, have you been through it!

Whatever my rash is due to, it has stopped getting worse and the allergic reaction doesn't seem to be throwing up any other nasties. I had PCA (I gather this is patient controlled analgesia) early on - must ask Wife and Daughter if I was raving like you. Rash aside, I've been lucky in tolerating the morphine.

Maybe it is affecting my thinking though - I just went out for a stroll in the twilight but turned back after a few hundred yards realising I was walking on black ice and not wanting to risk a fall in the dark with no-one around. As I got close to our gate I saw a branch from one of our trees had fallen in the lane outside. Ordinarily I throw such branches back, over our seven foot high stone wall, back into our garden. I took two steps in that direction before I said to myself 'What on earth are you thinking about?!!' I don't think I'm off my head. I just think I'm feeling so damned good that I'm at risk of forgetting my condition. Maybe I should stick a post-it note on myself or hang a notice round my neck, saying 'Do walk; don't lift!'.

Your info. on epidurals is interesting - they seem to be gaining more and more favour. Can you remember the drug they gave you in your epidural? On the topic of drugs, I hope foxhd does well on the MDX 1106 trial he's on - he sounds like a great guy.

Thanks again,

T.

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

Thanks foxhd and I 'm hoping you're right in saying it's now just a gimme.

I've an amusing story to tell on the golfing front but it will keep for another post, later, because I've been surfing and reading for the last six or seven hours and am getting a little sleepy. I guess I'll go and lie down for a bit before I have lunch. These forums are so helpful - I remember many contributors saying they slept/snoozed a lot in the early stages of recovery. I found myself feeling sleepy a couple of hours ago and was a bit worried (because I had a great night's sleep last night, on my first night at home). Then I remembered that sleepiness is to be expected so it's nothing to get concerned about. So, bye bye for now. T.

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

This bit of the forum seems to be where Lone Kidney Club survivors narrate their recoveries and compare notes. This often helps new members even though we're all different. Over the years I've been told more than once that I'm 'not normal' but there might be another oddball who can learn something useful from what I've experienced.

I somehow managed to get my above post of Dec. 12th out of synch. That was my first day home and I'm now into my 17th day from the op. and have been home for 10 and a bit days. So, here's an update from my postings on 16th Dec.

My patterns seem very different from the norm. I wonder whether this has anything to do with the pain control medication. I'm pretty fit but also 69 so a lengthy op. that had to be switched from lap. to open, with substantial transfusions and extensive muscle cutting, was likely to call for considerable pain control. I'm still on 60mg. of morphine daily and will have to taper this sensibly and not too fast. I was also on max. paracetamol daily but kicked that a while ago, wanting to ensure I preserve enough of the pain warning to alert me to any risk of overdoing things. I finished an antibiotic course and have only needed two doses of a laxative to get back to normal bowel function, despite the morphine. So, until I see my doc. on Wednesday, I'm just on the morphine, with an occasional single paracetamol capsule which seems to dampen the allergic reaction I've had (presumably to the morphine).

On that regimen, I've not needed any rest or any sleep beyond my usual. I felt whacked once and slept for an hour during the day but woke up disoriented and unsure that I'd gained much benefit. I'm having about 6 to 7 hours of broken sleep at night and for the rest of the time I'm up and about, walking and shopping (Wife does the lifting) but mostly at a computer. Normally I watch a lot of TV and play a lot of golf. For now, no golf and I'm watching almost no TV, except for the odd news report. I'm spending practically all my time reading on the Web, or books and doing a lot of writing.

With the pain relief I'm on, I have no problem getting in and out of bed and in and out of the bath easily. I've continued with our long-established practice of giving my Wife her breakfast in bed but she now shares the job of catering for other meals (whereas for the last 30 odd years I did all the cooking).

Before I left hospital I expressed concern about stairs because I was going to be alone for most of the first week home and our house is built into a slope with the result that every entrance involves steps/stairs. [Our main door is at what we call 'first floor' level (I just remembered that in the US you call it second floor) and is up some steps. The same goes for two other doors at that level and the fourth involves a long outside stair. At the lower, 'ground' floor level (in USA 'first' floor) we have a single door and also patio doors with no steps, but to reach the rooms we inhabit all the time we then climb a fairly steep inside stair.] Any way you cut it I might have a problem. So, it was decided to do a trial run. A nurse walked with me to stairs between the floors of our massive teaching hospital. To our great relief I was able to trot up and down the stairs comfortably without needing the hand rail so that dragon was slain and they decided i could go home.

We have a lovely antique brass bed which has proved a godsend. I've been able to sleep in it since the first night home, grabbing the top rail and lowering/raising myself and the vertical rails to drag myself horizontally to reach the top rail. I think trying to get as close to normal, without forcing it, has been therapeutic and I now have no bother. I can also sleep on my back or either side without undue discomfort.

My main problem has been the allergic (?) pruritis. A rash steadily progressed from my groin to my neck and down to my knees, then eventually to my face and ears and down to my feet. I experimented with treatments and it's now not so bad but I have numerous little lesions that I'll have to avoid getting infected - my skin began to flake off to the extent that my face looks like bad sunburn with showers of flakes coming off. However, if that's all the price I have to pay for the morphine relief I'm happy to take the deal!

My bodyweight has now stabilised. I'm eating well but have lost almost a stone since I got home 10 days or so ago. Abdominal bloating is away, swollen feet and ankles are back to their bony selves and I'm about 2 kilos down on the weight I've maintained for decades. This answers a question my Wife and Daughter (both of an academic cast of mind) were intrigued by - what would an 8cm tumour plus a kidney weigh? I have to assume I may have lost a little muscle mass, but probably not much, so maybe what was removed weighed around 3 or 4 pounds. This may be naive but I won't care about being thought eccentric if I ask the surgeon this on my first checkup which will be in about 4 weeks time, I think.

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

We're supposed to drink lots of water during recovery. I'm not sure I'm drinking enough but how can I be sure? Has anyone had experience of drinking too little and if so can you tell me what to watch out for and what goes wrong when you get dehydrated? With cold weather and not much exercise I don't feel like drinking water and so I just tend to forget to.

T.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Tex,
In addition to drinking plenty of water during recovery, you should continue to do so from now on ... forever! It's bad for the kidney(s) to become dehyhdrated. Your creatinine level can rise just from being dehydrated. I know when I have become mildly dehydrated when I start feeling thirsty. If you go too long without drinking water you will probably notice other more serious symptoms such as increased heart rate or fatigue. I used to be a big cola drinker because I disliked water so much, so I got accustomed to carbonated drinks. I've been drinking seltzer water instead of regular water. But I've read that this might not be very good for me either. So I guess I need to give that up too! There have been a lot of lifestyle changes in the past 16 months and giving up soft drinks and now seltzer and cutting back on pizza are some of the more challenging ones for me.
regards,
Mike

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garym
Posts: 1651
Joined: Nov 2009

Dehydration can be hard to detect until or unless it becomes severe. In addition to what Mike has said it can also affect your blood pressure (low) and ability to make rational decisions. Symptoms may include sticky (cotton) mouth, low or no urine output, dry eyes (lack of tears) and disorientation in some cases. It is absolutely amazing how much water you need to consume under extreme conditions to avoid dehydration.

My urologist told me the best thing I could do for my remaining kidney was drink plenty of water. His rule of thumb was drink at least 1/2 gallon (roughly 2 liters) of water daily in addition to any other liquids I consumed and not to wait until I was thirsty. Drinking smaller amounts like 8 ounces at a time throughout the day is better than larger amounts all at once and to always drink extra during exercise. I've always been a water drinker so it hasn't been much trouble for me, but I know it can be for some.

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

That's very valuable advice Gary. I often struggle to eat and have got out of the habit of drinking water. I like temperatures of about 10-15 C. and start to get anxious when we get to 20 C. I avoid the sun and so there's not much likelihood of my experiencing extreme conditions and getting severely dehydrated. However, I'd forgotten that even moderate dehydration impairs cognitive functioning. I remember having great difficulty sitting exams on sweltering high summer days so I'm grateful that you've reminded me. I definitely find that my golf performance is better when I sip water all the way round.

I won't be seeing my own urologist for another 3 weeks, at my first post-op. assessment, so meantime I'll remember your urologist's helpful advice.

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

Thanks Mike. I'm going to try to develop a routine for ensuring I get enough water. I used to guzzle huge amounts as a kid but that was before becoming a tea and rocket fuel addict! You've done yourself a real good turn kicking the cola habit but I'm sorry your style is being so cramped on soft drinks. I'm drinking more tea and fruit smoothies and managing to limit the coffee somewhat. I normally enjoy a couple of glasses of wine at dinner and haven't been able to touch alcohol for more than 3 weeks now - can't wait to get off the morphine. When I do I'm planning to resume the red wine, but only one glass a day.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

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

NewE2012
Posts: 7
Joined: Dec 2011

First of all, thank you everyone for this wonderful board. It is so wonderful to read about everyone's experience and knowing that I am not alone. Here is my story/suggestions for anyone going through this:

I am a female, 31yrs old, and 3 weeks post surgery for stage 1 RCC. I had no side effects at all and like most, my cancer was discovered by accident. I do have family history of cancer (not kidney) so as soon as the doctor told me he suspected it was cancer, I agreed to the surgery without thinking it twice.

I had a hand assisted partial. I have 2 small scars (look almost like scratches by now) and a bigger vertical incission (about 4 inches) above my belly button. I was in the hospital for 4 days and have been resting at home since. At the hospital I was fine since I had a morphine drip, the only thing is that I became very nauseous to the medicine, so make sure they give you medicine for that. Also, Apparently I am allergic to the strips used to cover the incisions so I had huge blisters all around the incision, very nasty!

Once home, the first 3-5 days were horrible, not from the incision pain, but from the bloating and the cramps from the gas. This part hurt so badly that I was in tears. I recommend stool softeners, prunes, and lots of slow walking. At this point it hurts to do anything, so take it easy and try to sleep as much as you can. Get good pillows so it's easier to sit up at night.

After 3 weeks I now feel much much better. I sleep a lot because I feel like I am always tired. Also, if I walk a lot my lower back seems to hurt a lot, so I need to sit down often. My big incision is very itchy. I started using Mederma for the scar but stopped because it made the scar itchier. Lastly, I feel like my insides are being pulled apart, almost like my muscles are having a fight with each other. Very hard to explain- wondering if anyone else has experienced that.

Obviously I am scared that this will one day come back. My doctor said I was very lucky this was caught so early, but at the same time in 5 years I will be 36, so this is something I will have to get checked the rest of my life.

Good luck to anyone out there going through this! Luckily there are support groups such as this one that make it all a little bit better.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

NewE2012,

Welcome to the Club. The surgery is not fun, but beats the alternatine. Sorry, but your complaints come the membership. You should be fine.

Best wishes,

Icemantoo,

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

NewE2012,

Welcome to the Club. The surgery is not fun, but beats the alternatine. Sorry, but your complaints come the membership. You should be fine.

Best wishes,

Icemantoo,

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

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
rae_rae
Posts: 277
Joined: Oct 2010

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
judyfain
Posts: 7
Joined: Mar 2012

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?

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

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
movingonnow
Posts: 6
Joined: Aug 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 25
Joined: Dec 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

therapture
Posts: 25
Joined: Dec 2012

Yep, stage 2 and grade 3. The blood loss and sudden onset of pain was precipitated by the tumor, as it grew medially into the ductwork of the kidney, tearing an open wound into the walls of the duct. I noticed blood in my urine and was still wondering what was going on when the pain set it. The pain was caused by the kidney being blocked with thick blood and blood clots, every heartbeat was a new spike in the pain, it literally throbbed with a level 8-10 pain. My broken femur 8 years ago, while painful, had nothing on this kind of pain, and I was surprised how intense it was. I am actually glad it did this since it sped up the process of getting surgery, and had it went vertical and not intruded into the duct, I may have gone years before we caught it, and it may have been too late. Blessings in disguise eh?

Yes, I will go easy on my recovery, I have ZERO plans for any training until a few months have gone by. Christmas with my family has taken on a whole new outlook and I think this will teach me to take nothing for granted. I am not a religious person but I certainly appreciated the thoughts (and prayers even) of my friends and family.

I have been reading here for several days, also found this site via google while I was researching my condition.

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

Hi Rap,

Its been just over three years for me now, it took a motorcycle accident and a trip to the ER to find mine. Tex has given you great advice, you are obviously fit and most of your body will be like a race horse in the gate, but stick to a walk before you run program for a few weeks, you'll be glad you did when you start training again. Your last paragraph says a lot and you may find a need for more emotional releases as the healing continues, its ok for your family to be a part of that, it can be therapeutic for all of you, but feel free to come here and vent as needed, we understand. Sounds like you have 50 years or so to get used to the time when you "HAD" cancer.

Merry Christmas,

Gary

therapture
Posts: 25
Joined: Dec 2012

I have been really open with my situation to all my friends, even co-workers, and I tend to make lots of jokes about it, to help me deal with it. No "everyone should feel sorry for me" attitude, that just makes other people sad/uncomfortable and promotes negative energy to me. Joking helps, but sometimes, a good cry is just needed. I am not too macho to let that happen, in the right place and time.

Thanks for the kind words and advice, I will be a regular around here for sure.

South Texas gulf coast for all my life and loving it.

Merry Christmas!

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

My experience that put me in the hospital was Very similar. Right down to the running. Tumor size was similar. Stage 3 but to stage 4 rapidly after surgery. Obviously it was there all the time. I guess the best news was not having to wait like many others for weeks before surgery. Just don't push your recovery. I'll be 2 years in March. WOW! that's only 3 months!

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

That's a pretty ironic pseudonym for someone who isn't religious! (However, some of us here, like Fox and myself, may sometimes engage in eschatological speculations.)

I thought Gary was going to cue me up for raising a question that I've not yet heard asked, anywhere - about hydration.

In addition to his counsel about walking before you run, Gary usually recommends ensuring that you're fully hydrated, which is good for the healing process and for the well-being of your remaining kidney.

Plenty of fluid intake is appropriately advised in recovering from kidney surgery, which is what this thread is all about. However, for those of us for whom surgery doesn't suffice, it can be a different story and it may be important to be well enough hydrated but no more than that.

To explain: increasingly, survivors who have metastatic disease and go on to systemic drug therapy, are put on TKI drugs such as sorafenib, sunitinib, pazopanib, axitinib and, soon now, tivozanib. A major, potentially fatal, side-effect that has to be monitored is hypertension. Pazopanib frequently leads to significantly raised blood pressure and axitinib is considerably worse in this regard.

There is increasing evidence that this drug-induced hypertension is an indication that the drug is working to combat the cancer and the hypertension can be controlled by additional medication without reducing the effectiveness of the TKI drug.

For most patients, hypertension can be controlled by medication of one sort or another - ACE inhibitors, beta blockers, calcium channel blockers or other types of drug, but most patients require two or more drugs for the purpose and one class of anti-hypertensive meds is diuretics. The aim of the latter is to reduce blood volume and hence blood pressure. It seems logical, therefore, to avoid over-hydration. So, the advice to drink plenty of water may need re-thinking if you're on a drug that tends to push your blood pressure up.

A little digging found me some comments in Science Daily, back in 2000, bearing on the topic:

"Water is not just a neutral substance, and it cannot be considered a 'placebo' with regards to blood pressure," said Dr. John R. Shannon, instructor of Medicine and Pharmacology. "As physicians, we may ask our hypertensive patients if they just drank a cup of coffee or smoked a cigarette when we measure their blood pressure, but we would never think to ask if they had anything to drink in the last hour. Perhaps we should. It might make the difference in whether or not we adjust their medications."

and:

"Although further work is required to understand why water raises blood pressure in older normal subjects, the studies suggest that physicians need to be aware of water [intake] as a variable to consider in assessing blood pressure levels. In addition, water intake is a variable that needs to be controlled in short-term pharmacological studies of drugs that increase and decrease blood pressure."

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

slippin' in my old age, either that or too much water on the brain.

therapture
Posts: 25
Joined: Dec 2012

Tex, yes, I get that alot. That online moniker has been with me for about 15 years and has more than a religious basis. To be direct, I am now an atheist for almost 8 years, but I NEVER speak bad to religious people, as I was Christian until the age of 34. This forum however, I don't think is the proper place to discuss religion, I am very respectful of other's beliefs, as I also expect respect in turn. I am always glad to engage in mature discussion about religion, in the proper place.

Keep the kidney talk coming, I soak it up like a sponge.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Interesting comment about too much water, as Dr. Banerji has told me over 8 years ago not drink water when thirsty and along with meals. Not to take to the standard of 8 glasses a day.  He also said too much water raises blood pressure, causes acid reflux, bloating, gas, stones, angina, headaches and a bunch of other things. I highly respect Dr. Banerji and have seen those 8 years seen many reports regarding the affects of drinking  too much water.  

N_Woods_Gal
Posts: 13
Joined: Feb 2013

Hello.

I hope I'm not too late to address this group - the lull in activity makes me wonder. I will share a bit of my experience and hope it helps someone just starting their own journey.

I am a soon-to-be 50 yr old female w/ no lifestyle risks for cancer. On Jan 3rd 2013 I had a CT scan to investigate a persistent side ache on my left side. While nothing was found to explain that issue, there was an incidental finding of RCC on my right kidney. My surgery was Jan 23rd, done as hand assist laparoscopic nephrectomy. I imagine my hospital stay was typical - no picnic, but I was filled with relief to be rid of it. I was released Jan 26th feeling remarkably well. The Rx for pain medication was never filled. I'm taking 1 Extra Strength Tylenol every 8 hrs and I'm comfortable.

To the "club members" that have contributed to this site, I thank you. In the 20 days between discovery and surgery I read and reread your stories. Your willingness to be open and sharing kept me in a positive frame of mind and prepared me for what was to come.

I am hoping to celebrate my big "5 -0" with a Zumba party.  : )  Be Happy 

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

Not too late to join here and you're welcome.  This is the biggest thread on this forum and for good reason - it's about the recovery period.  Just about everyone comes through the surgery, so the recovery period is when there's need for helpful advice and a lot is learnt from comparing notes.

Your experience is very different from mine. You are doing so well on the pain front whereas it took me a month tapering off morphine.   Just make sure that you don't slow your recovery by going without pain meds if you need them and don't hinder your recovery by pushing yourself too hard too soon in  your recovery simply because you're feeling so good.  Plenty of fluid intake and staying active, e.g. by walking, are plus points but doing anything very vigorous or violent in the next few months isn't smart. 

So, you're a member now and we'll hope to hear continuing good news of your return to your  'normal' life - many of us find it's a 'new normal'  but it can carry on being a good life and some even find life more precious and rewarding than ever before and I hope you will join that group too.

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

Hi Woodsy Gal,

and lucky you, RCC has decided to crash the party.  You can never be too late here to join, but we would prefer nobody ever need join at all of course.  Since you've already completed the initiation process (what a blast) your membership has been pre-approved, there is not much left to say except pull up a chair and share your experiences with everyone here and the new members yet to arrive.  This is a good place to come when you ned to talk to someone that understands or if you need to vent.  If you don't mind sharing some of the details from your pathology like size, stage, type, etc. the members here will be happy to help with any questions you might have going forward.  You seem to be very upbeat and positive and that is half the battle, hang on to that.  You've been reading so you probably already know that I recommend walking and water to practically everyone I greet here so I'll leave it at that.  Keep us posted.

Welcome aboard,

Gary

N_Woods_Gal
Posts: 13
Joined: Feb 2013

I'm happy to see responses and know this site is still active.

Today marks 3 weeks for my recovery. I am doing very well and know how lucky I am. I like to think I'm gaining a little strength each day. It's amazing how weak you get in such a short time. I'm drinking water like it's going out of style and walking laps in the house to the point I fear ruining the carpets. I'd much rather take a stroll outside, but it's winter here and I can't risk a fall.

In answer to Q's, the mass they removed was 4.8 cm and stage 1. Pathology results for 2 margins of fatty tissue and vascular samples came back clean. How do you describe the relief? I won't have another appt for a yr, involving the usual scans, chest Xray and labs. 

I do feel I've reached a plateau with energy. I have the Tylenol down to 2 a day, 6:30 am and 6:30 pm. I won't lie, there are times I must stay distracted or I find myself with teeth clenched. I don't like medications and hate the thought of how many in a week, month...  I am a reader and lucky to have a great stash of books.  I live in the sticks and use a hit and miss dial up connection for internet.

I mentioned an upcoming birthday - it's mid April, so I still hold hope for a "majorly modified" version of Zumba?  : )  

adman's picture
adman
Posts: 268
Joined: Jul 2012

 

I had a RAD/ Neph  07/16/12 - 5.0cm/ Stage 1 Grade 1 - Clear Margins

We're both very lucky!

 

Just an FYI.

My Dr also recommended no follow up for 1 year. I spoke to a few other Dr's and came to the conclusion that 'for my peace of mind' I needed to be more aggressive.

I switched Dr's and am now having CT's, XRays and bloodwork every 3 months for the 1st year and then I will go to 2x/ year after that and evaluate in year 3-5.

RCC is very tricky. Don't assume anythng. Stay vigilant.

God Bless!!

 

 

 

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

I'm so glad you said that, Michael.  I was in two minds whether to make a similar comment.  I was thinking of suggesting 6-monthly, in order not to sound too alarmist but what you say is very sensible, for my money.  (Easier to say in the UK, where these things are covered by the NHS - I suppose insurance/co-pay etc issues come into play for you folks though?)

adman's picture
adman
Posts: 268
Joined: Jul 2012

Mr. Wedge,

I'm hoping to play a round or two w you in 5, 10, 20+ years....God Bless you and all the wonderful spirits that have helped me along in my journey thus far!!

~M

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

I haven't put in for a ballot yet - we'll have to wait for the snow to clear!  Maybe your course is clear? (Is it on Madison Avenue by the way?)

Delighted to see a picture of you at last!

adman's picture
adman
Posts: 268
Joined: Jul 2012

....used to be in NYC, now in Florida. 

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

I suppose the snow isn't as deep there as in the north of Scotland at the moment?

So many good  news stories of peoples' results and new treatments appearing at the moment, maybe we will get a round or two in over the next few years!

Jackaroe's picture
Jackaroe
Posts: 14
Joined: Feb 2013

Hi All,

 

I'm a 51 year old married man with a seven year old son and two grown ones by a first marriage, and have spent hours reading much of this thread, fascinated that each person's story has something in kind and something differing than mine.  So I wanted to share my story too.  I was given the diagnosis of RCC Thursday a week ago by my urologist, and was referred to a recently moved-in urologist with a laproscopic specialty.  He saw me that day, and I was scheduled for right side radical nephrectomy using the Da Vinci just six days later.   It was overwhelming to myself and my wife, to say the least, I was told my tumour was very large (like a grapefruit) but looked well contained.  Before the surgery, I was told that the lymph nodes were probably not involved, and was given a 60-70 percent survival rate.  I just kind of shut down emotionally to it, and was really grateful that the surgery was coming so quickly.  When I did think about it, I tried to stay positive. Like a previous poster, I'm a long-distance runner, and compete in ultramarathons on mountain trails.  My longest race so far has been 62 miles.  So I figured my body was in the best possible fighting condition for a challenge like this.  

So the surgery came and went (I remember nothing of course) and, while there was a ton of pain, the surgeon seemed really happy that the tumour was "completely encapsulated," and told my wife she should stop thinking of me as a cancer patient."  My wife and I loved my medical team, from the surgeon to the nurse to the aides.  Then Thursday, the next day, things took a nasty turn.  I started having abdominal muscle convulsions, where my abdominal muscles would sieze up and would have lots of trouble releasing them.  Scary.  Also, lots of nausea.   By midafternoon, I had developed bad pain in the middle of my chest, which made breathing difficult.  My doctor became worried that I was having a heart attack or throwing a blood clot, and he was not reassured  by my EKG.  This was the low point I think.  Luckily, I clearly heard the cardiologist tell my doctor that my EKG was "normal."  Still, everybody was still worried, and I was CT scanned again (where my abdominal muscles froze up again), blood work, and my heart function monitiored through the night.  The worst parts of this was that my wife had to go home that night to care for our 7 year old son, whom neighbors were caring for, and I had to be transferred to a new unit where I didn't know any of the caregivers.  

It was a pretty awful night, but after dawn my doctor came in and told me all the evidence was negative for a cardiac event, and I could go home if I wanted.  Boy, did I!  Things have been on an uphill trend ever since.  Yesterday, my doctor called me with the pathology results, and said it was good: first, the carcinoma, though large, had not penetrated the fatty area around the kidney, and second, it was a rare form of RCC called "chromophobe," which is consdered less aggresive than the clear cell variant.  The pain is very manageable now, and it feels like I'm starting to get familar with what my new body feels like.  All in all, I am absolutely on cloud nine right now.  Sometimes just being alive and comfortable can do that.  

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