? For Martha and others - Long term side effects of 5FU and Mitomycin

cbs6931

A question for some of you who have been on the board awhile, I'm wondering what to keep an eye out for long term and seem to remember having a conversation regarding kidney or liver problems with no symptoms. Any info will be appreciated. Just want to make sure that my follow up care is all it should be. Thanks to everyone!

Cathy

mp327

Hi Cathy!
It's good to see you back on here--I have thought of you often and I hope you are doing well. About the mito/5FU side effects--my internist was concerned that my creatinine levels were running too high. This blood test can indicate kidney disease. She had me very worried, so I did a little research and found that mitomycin can cause kidney damage. When I brought this up with her, she said, "oh yeah," I didn't think of that. She kept monitoring my blood work, running creatinine, creatinine clearance, BUN, and some other tests to look at kidney function. Finally, I got my levels back within normal. If you think you are having some of these issues, the first thing you need to do is drink lots of water! I think part of mine was dehydration, which can cause various kidney blood tests to be abnormal. I'm not sure about the effects of mito on the liver. However, I have to take a statin for cholesterol and my internist checks my liver function tests regularly. So far so good with those. Do keep in mind that chronic kidney disease can begin with no symptoms. That's why I was shocked when my doctor mentioned this. My kidneys seemed to working just fine as far as I was concerned. Apparently, they really were, but CKD can sneak up on a person, so I'm glad she was watching this closely.

I hope you do not have any kidney issues. Take care.

Martha

sissy310

mp327 said:

Hi Cathy!
It's good to see you back on here--I have thought of you often and I hope you are doing well. About the mito/5FU side effects--my internist was concerned that my creatinine levels were running too high. This blood test can indicate kidney disease. She had me very worried, so I did a little research and found that mitomycin can cause kidney damage. When I brought this up with her, she said, "oh yeah," I didn't think of that. She kept monitoring my blood work, running creatinine, creatinine clearance, BUN, and some other tests to look at kidney function. Finally, I got my levels back within normal. If you think you are having some of these issues, the first thing you need to do is drink lots of water! I think part of mine was dehydration, which can cause various kidney blood tests to be abnormal. I'm not sure about the effects of mito on the liver. However, I have to take a statin for cholesterol and my internist checks my liver function tests regularly. So far so good with those. Do keep in mind that chronic kidney disease can begin with no symptoms. That's why I was shocked when my doctor mentioned this. My kidneys seemed to working just fine as far as I was concerned. Apparently, they really were, but CKD can sneak up on a person, so I'm glad she was watching this closely.

I hope you do not have any kidney issues. Take care.

Martha

Boy oh boy, am I glad I read
Boy oh boy, am I glad I read as much as I can on these forums...good question raised and good information from Martha. Any information like this is good to know to bring up should issues arise or levels change. Marilyne

grandma2selena

Long Term Affects
I know that just prior to my one year scan my kidney count was elevated. They did another blood test to check it before I went in for my scan so they could flush my kidneys after the scan if needed. The second blood tests were normal. However I did develop kidney stones within a few months of my scan. I had never had kidney stones before. I occasionally have a little pain around my left kidney since, but it is relieved by making sure I am drinking a lot of water.

I think our best defense against long term affects is our diet and to make sure we keep the fluids way up. Other then that just make sure we follow up on all our appointments and test results.

mp327

grandma2selena said:

Long Term Affects
I know that just prior to my one year scan my kidney count was elevated. They did another blood test to check it before I went in for my scan so they could flush my kidneys after the scan if needed. The second blood tests were normal. However I did develop kidney stones within a few months of my scan. I had never had kidney stones before. I occasionally have a little pain around my left kidney since, but it is relieved by making sure I am drinking a lot of water.

I think our best defense against long term affects is our diet and to make sure we keep the fluids way up. Other then that just make sure we follow up on all our appointments and test results.

Fluids, fluids, fluids!
I think this is one of the most important things when it comes to saving our kidneys from the damage that may have been caused by the chemo. Since I have become very mindful of drinking more water, my kidney function tests have returned to normal levels. Unfortunately, my bladder does not have the capacity it once had before radiation, so on the other side of drink, drink, drink is pee, pee, pee!

z810840b

mp327 said:

Fluids, fluids, fluids!
I think this is one of the most important things when it comes to saving our kidneys from the damage that may have been caused by the chemo. Since I have become very mindful of drinking more water, my kidney function tests have returned to normal levels. Unfortunately, my bladder does not have the capacity it once had before radiation, so on the other side of drink, drink, drink is pee, pee, pee!

I agree,agree,agree!!

I agree,agree,agree!!

sissy310

Hi everyone...I come in here
Hi everyone...I come in here once in awhile just to say hi and check up on everyone but this time was focused on looking at kidney issues. Just had bloodwork done and my oncologist was concerned about the creatine levels so she sent me to a kidney doctor (my rollodex now contains more doctors names than friends' names lol). He did check my levels and told me that my kidneys were working at 60% and the possibility that it is chemo related is strong since I do not have diabetes nor do I have high blood pressure (other causes of kidney damage). He will be monitoring me every 6 months now to make sure it stays at that level and does not get worse. I am starting to drink more water (I am bad at it but carry now a camelback water bottle with me wherever I go) but like Martha my bladder is not what it used to be so I pee a lot more. I'm not complaining really. It is what it is. Harvey is gone (my tumor) and as long as it stays gone I will deal with this other stuff as it comes along. Did I tell you guys I'm going to be a grandma? Having a grandson in mid May sometime. My first. I'm thankful I am here to experience this and meet him. Hugs to you all, Marilyne

RoseC

sissy310 said:

Hi everyone...I come in here
Hi everyone...I come in here once in awhile just to say hi and check up on everyone but this time was focused on looking at kidney issues. Just had bloodwork done and my oncologist was concerned about the creatine levels so she sent me to a kidney doctor (my rollodex now contains more doctors names than friends' names lol). He did check my levels and told me that my kidneys were working at 60% and the possibility that it is chemo related is strong since I do not have diabetes nor do I have high blood pressure (other causes of kidney damage). He will be monitoring me every 6 months now to make sure it stays at that level and does not get worse. I am starting to drink more water (I am bad at it but carry now a camelback water bottle with me wherever I go) but like Martha my bladder is not what it used to be so I pee a lot more. I'm not complaining really. It is what it is. Harvey is gone (my tumor) and as long as it stays gone I will deal with this other stuff as it comes along. Did I tell you guys I'm going to be a grandma? Having a grandson in mid May sometime. My first. I'm thankful I am here to experience this and meet him. Hugs to you all, Marilyne

Congratulations Grandma-to-Be!
It's so wonderful that you're here for your first grandchild! Congratulations!

Kidneys are affected by so many things. I was told at one point that mine were functioning only at 20% of their normal value. They've recouped though, and I didn't really notice any difference when they were at 20%. They can do that - kidneys are one of the organs that can repair themselves in most instances. Age will affect them too. I was told that as you age, your kidney function decreases. That plus all we went through - no wonder their function decreases.

My oncologist and primary care doctor both keep an eye on that creatinine level and it's stayed constant at 1.2 or 1.4. Not 100%, but I'll take it. I went to the urologist once with my mom, who was having a lot of urgency with peeing, and he said to 'go' at least once every two hours, whether or not you felt like it. He said the monitoring thing in our bodies gets worse as we age and we don't always feel like going till it's too late. I've taken his advice and find I can almost always go a little, whether or not I felt like I could.

Congratulations again on your new-to-be grandchild!
Rose

mp327

sissy310 said:

Hi everyone...I come in here
Hi everyone...I come in here once in awhile just to say hi and check up on everyone but this time was focused on looking at kidney issues. Just had bloodwork done and my oncologist was concerned about the creatine levels so she sent me to a kidney doctor (my rollodex now contains more doctors names than friends' names lol). He did check my levels and told me that my kidneys were working at 60% and the possibility that it is chemo related is strong since I do not have diabetes nor do I have high blood pressure (other causes of kidney damage). He will be monitoring me every 6 months now to make sure it stays at that level and does not get worse. I am starting to drink more water (I am bad at it but carry now a camelback water bottle with me wherever I go) but like Martha my bladder is not what it used to be so I pee a lot more. I'm not complaining really. It is what it is. Harvey is gone (my tumor) and as long as it stays gone I will deal with this other stuff as it comes along. Did I tell you guys I'm going to be a grandma? Having a grandson in mid May sometime. My first. I'm thankful I am here to experience this and meet him. Hugs to you all, Marilyne

Hi Marilyne!
Congrats on the upcoming birth of your first grandchild! I'm so happy for you! About the creatinine levels, I haven't had my tested in awhile, but am trying to drink more water throughout the day. It's hard, as I've just never been a heavy drinker--lol! I hope your kidney issues do not worsen. I hope that everything else is going great for you!