ccRcc diagnosed 08/03/2012
Comments
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Can we talk pain management?
I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.
Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.
I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.
At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.
I got sent home Sunday.
Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.
But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.
So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)0 -
I believe Oxycodone has TylenolJoe_fh said:Can we talk pain management?
I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.
Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.
I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.
At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.
I got sent home Sunday.
Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.
But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.
So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)
So, you are already getting the Tylenol doses. The thing is, more than six per day can hurt your liver.
The only real option is to increase the dose of Narcotics, but that will make you a zombie, and there are risks of addiction.
Unfortunately, pain is part of the process.
You can't use ibuprofin because of bleading risks. I am not sure about the other Non-steriodal anti-inflamitories and bleeding , but they are bad for the kidney.
Good luck!0 -
Talking about pain management!Joe_fh said:Can we talk pain management?
I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.
Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.
I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.
At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.
I got sent home Sunday.
Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.
But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.
So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)
Joe -
Your incisions sound like mine. I had my surgery two weeks ago. In my case the pain management made me sick. They put me on dilaudid as soon as I was out of surgery and 24 hours later I was as sick as a dog. I knew something was wrong, but the nurse kept telling me "don't worry, this is normal". Once the doctor realized what was happening he took me off dilaudid and put me on tylenol. I have been on tylenol ever since. In the beginning I was taking one 500 mg tylenol every 4 hours and now it has slowed down to one every 8 hours. The only problem is that I have not had a good night's sleep since I got home. I go to the doctor today to get my staples removed and I am considering asking for something that will help me sleep. I don't know if that's a good idea or not.
Anyway... give yourself a break! You just had major surgery and you know your body better than anyone else. If you are hurting... please tell the doctor so he can help you.
Blessings and speedy healing,
Cheryl0 -
TylenolJoe_fh said:Can we talk pain management?
I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.
Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.
I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.
At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.
I got sent home Sunday.
Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.
But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.
So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)
I had a left radical nephrectomy. After that I was told that I could no longer take ibprofin or asprin. Tylenol was the only pain killer I could take (and tylenol mixes of course). My tumor was quite a bit larger so my insicion was from flank to flank. I personally prefered to stay on top of my pain because it's way worse trying to play catch up.0 -
pain managementJoe_fh said:Can we talk pain management?
I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.
Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.
I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.
At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.
I got sent home Sunday.
Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.
But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.
So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)
Pain management is important in your healing, and it needs to be managed effectively. Don't hesitate to tell your doctor you're still experiencing pain, and my guess is he'll increase your dosage of the oxycodone or add a pain patch to your maintenance regime. Suffering it out--as my husband had a tendency to do--does more harm than good. As far as becoming a zombie, John now takes 20 mg twice a day and it does not provide him a high or buzz at all; it simply relieves pain. He drives, he communicates effectively, he appears perfectly normal.
Good luck to you.0 -
Update
Hi Folks, wanted to drop a note on my situation.
I spoke with my doctor this morning, they apparently have got my pathology report back. When I spoke with him, he was out of pocket and did not have the report in front of him, but the gist is that the cancer was classified as IIIa due to size of tumor and some involvement with the Renal Vein. Since he did not have the report in hand, I did not get details such as type or grade.
Overall, he seemed pretty upbeat about my situation. No evidence of Metastatic cancer, he said the Lymph nodes showed no evidence either. He also said that the pathology report did show that the margins were clear and he was confident that we got the whole thing.
At this point, they plan no follow up treatment other than to closely watch for any new growth with initial quarterly scans. They did set up an appointment for me to come in and speak with Urology and Onology (sp?) to provide greater detail on all the results in October.
Surgery recovery is not going bad, I have cut my pain meds down substantially and seem to be tolerating the remaining soreness okay. Still hurts to Cough or Sneeze, but otherwise the pain seems to have retreated back to a point that seems to be more of a dull awareness rather than anything really tough.
His assistant whom I know personally, confided that her impression was (that the doctor felt) that I got lucky. With a tumor of that size, they would have expected to see more invasion, but did not. So I am feeling pretty good at the moment emotionally. I am not under any illusions, this was a serious matter that, for now, seems to be well managed. Just have to hope it stays that way.0 -
Great news....Joe_fh said:Update
Hi Folks, wanted to drop a note on my situation.
I spoke with my doctor this morning, they apparently have got my pathology report back. When I spoke with him, he was out of pocket and did not have the report in front of him, but the gist is that the cancer was classified as IIIa due to size of tumor and some involvement with the Renal Vein. Since he did not have the report in hand, I did not get details such as type or grade.
Overall, he seemed pretty upbeat about my situation. No evidence of Metastatic cancer, he said the Lymph nodes showed no evidence either. He also said that the pathology report did show that the margins were clear and he was confident that we got the whole thing.
At this point, they plan no follow up treatment other than to closely watch for any new growth with initial quarterly scans. They did set up an appointment for me to come in and speak with Urology and Onology (sp?) to provide greater detail on all the results in October.
Surgery recovery is not going bad, I have cut my pain meds down substantially and seem to be tolerating the remaining soreness okay. Still hurts to Cough or Sneeze, but otherwise the pain seems to have retreated back to a point that seems to be more of a dull awareness rather than anything really tough.
His assistant whom I know personally, confided that her impression was (that the doctor felt) that I got lucky. With a tumor of that size, they would have expected to see more invasion, but did not. So I am feeling pretty good at the moment emotionally. I am not under any illusions, this was a serious matter that, for now, seems to be well managed. Just have to hope it stays that way.
God Bless! Stay strong and continue to kick arse.
~M0 -
Update...Joe_fh said:Update
Hi Folks, wanted to drop a note on my situation.
I spoke with my doctor this morning, they apparently have got my pathology report back. When I spoke with him, he was out of pocket and did not have the report in front of him, but the gist is that the cancer was classified as IIIa due to size of tumor and some involvement with the Renal Vein. Since he did not have the report in hand, I did not get details such as type or grade.
Overall, he seemed pretty upbeat about my situation. No evidence of Metastatic cancer, he said the Lymph nodes showed no evidence either. He also said that the pathology report did show that the margins were clear and he was confident that we got the whole thing.
At this point, they plan no follow up treatment other than to closely watch for any new growth with initial quarterly scans. They did set up an appointment for me to come in and speak with Urology and Onology (sp?) to provide greater detail on all the results in October.
Surgery recovery is not going bad, I have cut my pain meds down substantially and seem to be tolerating the remaining soreness okay. Still hurts to Cough or Sneeze, but otherwise the pain seems to have retreated back to a point that seems to be more of a dull awareness rather than anything really tough.
His assistant whom I know personally, confided that her impression was (that the doctor felt) that I got lucky. With a tumor of that size, they would have expected to see more invasion, but did not. So I am feeling pretty good at the moment emotionally. I am not under any illusions, this was a serious matter that, for now, seems to be well managed. Just have to hope it stays that way.
Hi Joe,
What you have heard so far sounds like very good news, I expect the full path report will confirm it. It sounds like you are managing the recovery process very well and you are maintaining a positive attitude, good job!! It won't be long before you are back to "normal".
Hang in there,
Gary0 -
Update +2Joe_fh said:Update
Hi Folks, wanted to drop a note on my situation.
I spoke with my doctor this morning, they apparently have got my pathology report back. When I spoke with him, he was out of pocket and did not have the report in front of him, but the gist is that the cancer was classified as IIIa due to size of tumor and some involvement with the Renal Vein. Since he did not have the report in hand, I did not get details such as type or grade.
Overall, he seemed pretty upbeat about my situation. No evidence of Metastatic cancer, he said the Lymph nodes showed no evidence either. He also said that the pathology report did show that the margins were clear and he was confident that we got the whole thing.
At this point, they plan no follow up treatment other than to closely watch for any new growth with initial quarterly scans. They did set up an appointment for me to come in and speak with Urology and Onology (sp?) to provide greater detail on all the results in October.
Surgery recovery is not going bad, I have cut my pain meds down substantially and seem to be tolerating the remaining soreness okay. Still hurts to Cough or Sneeze, but otherwise the pain seems to have retreated back to a point that seems to be more of a dull awareness rather than anything really tough.
His assistant whom I know personally, confided that her impression was (that the doctor felt) that I got lucky. With a tumor of that size, they would have expected to see more invasion, but did not. So I am feeling pretty good at the moment emotionally. I am not under any illusions, this was a serious matter that, for now, seems to be well managed. Just have to hope it stays that way.
When I spoke with the Doctor yesterday, I asked him to phone me back with the classification details. I have those now.
T3aN0Mx
Clear Cell - extraction size 12 cm - grade 3.
Margins are confirmed clear.
Now I don't know precisely what those numbers mean, but my gut (no pun intended) didn't like them very much.0 -
InterpretationJoe_fh said:Update +2
When I spoke with the Doctor yesterday, I asked him to phone me back with the classification details. I have those now.
T3aN0Mx
Clear Cell - extraction size 12 cm - grade 3.
Margins are confirmed clear.
Now I don't know precisely what those numbers mean, but my gut (no pun intended) didn't like them very much.
Joe, many members of our club have better classifications than yours, but quite a few of us must envy them. You knew your tumour was large but T3a (out of 4) isn't disastrous. Grade 3 (of 4)could be better but isn't a catastrophe. You're clear cell, which means most of the established facts and possible treatments apply to you. N0 is very good news since node involvement doesn't augur well. Mx is good and if it stays that way you're laughing.
Since your margins are clear, there's a good chance that you'll go on to N0M0 status and NED. Keep us posted and keep visiting here if you find it worthwhile.0 -
Update +2...Joe_fh said:Update +2
When I spoke with the Doctor yesterday, I asked him to phone me back with the classification details. I have those now.
T3aN0Mx
Clear Cell - extraction size 12 cm - grade 3.
Margins are confirmed clear.
Now I don't know precisely what those numbers mean, but my gut (no pun intended) didn't like them very much.
Hi Joe,
With a tumor your size this is about as good a pathology as you could ever expect, Tex has already given you great information, I've nothing to add there. What I do want to suggest is that you check out Mr. Gerald White's MAARS program. Mr. White is a 20+ year survivor of RCC, with a much larger tumor than yours, who refused to accept defeat after being given 3 months to live. He developed a guided imagery program that helps your mind and body identify and kill invading cancer cells, there are many here that are using it. Even if you don't buy the program, its inexpensive, his story is a very inspirational example of what is possible and it will help put your gut at ease.
Hang in there,
Gary0 -
InterpretationTexas_wedge said:Interpretation
Joe, many members of our club have better classifications than yours, but quite a few of us must envy them. You knew your tumour was large but T3a (out of 4) isn't disastrous. Grade 3 (of 4)could be better but isn't a catastrophe. You're clear cell, which means most of the established facts and possible treatments apply to you. N0 is very good news since node involvement doesn't augur well. Mx is good and if it stays that way you're laughing.
Since your margins are clear, there's a good chance that you'll go on to N0M0 status and NED. Keep us posted and keep visiting here if you find it worthwhile.
Thank you very much for the clarification Texas_wedge.
One thing I am curious about (one thing - that's an understatement) is the tumour size. When they detected it, 08/03/2012 they said it was 10cm. Upon extraction 08/31/2012 it was measured at 12cm. My question is; Is it feasible that the sucker actually grew 2cm in under 30 days? Or is it more likely that it's hard to get an exact size while still in the body?0 -
Interpretation...Joe_fh said:Interpretation
Thank you very much for the clarification Texas_wedge.
One thing I am curious about (one thing - that's an understatement) is the tumour size. When they detected it, 08/03/2012 they said it was 10cm. Upon extraction 08/31/2012 it was measured at 12cm. My question is; Is it feasible that the sucker actually grew 2cm in under 30 days? Or is it more likely that it's hard to get an exact size while still in the body?
While both are possible, its much more likely with clear cell (slow growing) that an exact size is hard tom get from the image. My image was 4.9cm and the tumor actually measured 4.2cm.0 -
Another general question
I figure it's best to not create a new topic each time I post, keep all my stuff together for easier reference.
I am curious about the grading of cancer. Mine as I said earlier was graded at 3. How does the grade impact the conventional wisdom of Cell Cell type - Renal Cell Carcinoma being a "Slow growing" cancer?
As I understand the grading, the higher the number the more aggressive the cells. Is that an impact on speed of growth or does it define it's ability to invade?0 -
speed of growthJoe_fh said:Another general question
I figure it's best to not create a new topic each time I post, keep all my stuff together for easier reference.
I am curious about the grading of cancer. Mine as I said earlier was graded at 3. How does the grade impact the conventional wisdom of Cell Cell type - Renal Cell Carcinoma being a "Slow growing" cancer?
As I understand the grading, the higher the number the more aggressive the cells. Is that an impact on speed of growth or does it define it's ability to invade?
Don't want to speak for the other poster or claim to know more than I do, but I think the CCRCC is slower growing than the other types of RCC - such as ChromoPhobe.
The Grade 3 of 4 would show that this is a faster growing than grade 1 but slower than grade 4.... If this makes sense.0 -
InterpretationJoe_fh said:Interpretation
Thank you very much for the clarification Texas_wedge.
One thing I am curious about (one thing - that's an understatement) is the tumour size. When they detected it, 08/03/2012 they said it was 10cm. Upon extraction 08/31/2012 it was measured at 12cm. My question is; Is it feasible that the sucker actually grew 2cm in under 30 days? Or is it more likely that it's hard to get an exact size while still in the body?
Hi Joe, glad you are recovering nicely. The path report seems very good! Just a comment i received from my doctor on the size difference. The doc said that a ct scan doesn't really see all of the tissue but an MRI does. For example, when my mom had an mri done the tumor size shown was 2 cms bigger than the actual ct scan said it was. During surgery the MRI won out as the tumor was the size of the MRI to the T. So it is probably that it didn't grow 2 cm's in a month. Hope this makes sense. Keep positive, take one day at a time and try not to worry too much. Prayers going out for you. By the way, you have expert advice on these boards, everyone stands with you!!0 -
size shell gameangec said:Interpretation
Hi Joe, glad you are recovering nicely. The path report seems very good! Just a comment i received from my doctor on the size difference. The doc said that a ct scan doesn't really see all of the tissue but an MRI does. For example, when my mom had an mri done the tumor size shown was 2 cms bigger than the actual ct scan said it was. During surgery the MRI won out as the tumor was the size of the MRI to the T. So it is probably that it didn't grow 2 cm's in a month. Hope this makes sense. Keep positive, take one day at a time and try not to worry too much. Prayers going out for you. By the way, you have expert advice on these boards, everyone stands with you!!
Yea, they actually changed that size 3 times...
The very first CT - the one that started this roller coaster ride - was actually looking at something else they thought was a problem, but turned out to be nothing.. But in those results they also saw this tumor and the report read they saw what looked like a 15 cm tumor on the left Kidney.
Well the doctor shot me right back in there 2 days later for a CT with contrast. On that one they noted the size at 10cm.
Of course after surgery the pathology report confirmed 12.1cm
So I guess the take away from all that is that it's hard to be precise on CT images alone. I never did an MRI, so I can't speak to that end.0 -
Effective Pain Meds
Well I missed the pain conversation days ago, but maybe someone else can be helped by this. I recently had a procedure that caused some pretty excrutiating pain. The doctor prescribed Oxycodone and prescription strength Naproxen (Aleve). I thought I was supposed to take them separately, and when I did, it didn't work well. I did a little internet reading and found they are supposed to be taken at the same time.... worked like a charm, and I slept quite peacefully. Ask about it!0 -
I came upon your post andEliezer2 said:A joke for Texas Wedge
Since the discussion boards here sometimes carry jokes to keep the spirits up, I just thought I would share a really bad joke, one I was just told that might appeal to our warped sense of humor. I personally thought it was hilarious.
A man comes in to see his MD and the doc says I am afraid I have some bad news for you. You have both cancer and Alzheimer's Disease.
The patient replies, well at least I do not have cancer.
I came upon your post and was cracking up ty for the laugh, I think we all needed that...no matter the differences in our cancers ( I was dx with stage 3c ovarian cancer), cancer is cancer! Ty made my day!0 -
You have a right to yell at
You have a right to yell at this cancer all you want...My cancer has a poor prognosis too, atleast that's what statistics say. In jan of this year I was dx with stage 3c ovarian cancer, unfortunalty this cancer most times is dx at an advanced stage (stage 3 and 4) because the symptoms mock other symptoms.The Symptoms whisper...You'll do fine! You seem to have a great support team here...Stay strong0
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