Bad reaction to 5FU
For the longer term, I have reservations about the surgery phase. This appears to be a very major surgery with permanent negative impact on quality of life. From what I have read, the survival statistics are not clear cut that surgery after chemo actually results in improved mortality. If that is so, why go thru all that trauma if the outcome will be about the same? I would appreciate the thoughts of others on this subject.
Timp
Comments
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Hi Timp- I am actually on
Hi Timp- I am actually on the colon cancer board more than anything- but kinda a slow day at work so I am lurking about....I was also on 5FU and oxi for stage 3B colon cancer. And had horrible mucosidis that actually hospitalized me for over a week after about the 4th treatment. My mouth so swollen, I couldn't speak, take in fluids or food. It does get better- but then continued to be a problem with each chemo treatment. I was on Magic Mouthwash and also oral morphine- it would help to use the oral morphine first (don't actually swallow it, very thick gel like, just kept it in my mouth for about 3-5 mins- )then would use the Magic Mouthwash on top of it. I also used baking soda and salt water rinses around the clock for months on end. I would say that diligence and extreme proactive treatment (even when the mouth feels fine) helped keep it under control somewhat.0 -
Mucosidis
Timp,
Your oncologist is correct the mouth irritation will improve as the 5 FU exists the system. Mine normally took about 3 or 4 days to get better. My Oncologist also slightly reduced my dosage and that helped a lot.
I am also including the address of a web site for a product called Caphosol that your wife may wish to discuss with her oncologist. It requires a prescription but she may find it more effective than the "Magic Mouth Wash" that is basically a topical anesthetic in a antacid base. Here is the web site address:
http://www.mouthsmadegood.com/managing-OM/Treating-OM.aspx
I also use a toothpaste and mouthwash called Biotene that helps a lot as well. You will find it at the drug store or WalMart drug section.
Here is the web site address:
http://www.biotene.com/Default.aspx
As relates to the surgery I had mine in December of last year and I feel better every day. The are several folks on this site who have had the surgery and can provide you with perspective.
What stage is your wife's cancer?
People here will tell you she is very fortunate to be a "candidate for surgery". Yes it is major surgery and there are some life style adjustments required post surgery but they are manageable.
Be sure to ask lots of questions, get second opinions, and consider going to a major cancer center that does many of these surgeries every week. They know how to manage the surgical risk and the recovery process. And potentially can offer "minimally invasive" surgical options.
But most important is attitude!!!
This is a SURVIVOR network. There will be some challenges but there are better days ahead.
You will find lots of support and good advice here from people "who have been there".
We will be praying that your wife feels better from the chemo soon and has a great outcome from the surgery.
Best Regards,
Paul Adams
AKA "paul61"
McCormick, South Carolina0 -
Acyclovir!!!!!paul61 said:Mucosidis
Timp,
Your oncologist is correct the mouth irritation will improve as the 5 FU exists the system. Mine normally took about 3 or 4 days to get better. My Oncologist also slightly reduced my dosage and that helped a lot.
I am also including the address of a web site for a product called Caphosol that your wife may wish to discuss with her oncologist. It requires a prescription but she may find it more effective than the "Magic Mouth Wash" that is basically a topical anesthetic in a antacid base. Here is the web site address:
http://www.mouthsmadegood.com/managing-OM/Treating-OM.aspx
I also use a toothpaste and mouthwash called Biotene that helps a lot as well. You will find it at the drug store or WalMart drug section.
Here is the web site address:
http://www.biotene.com/Default.aspx
As relates to the surgery I had mine in December of last year and I feel better every day. The are several folks on this site who have had the surgery and can provide you with perspective.
What stage is your wife's cancer?
People here will tell you she is very fortunate to be a "candidate for surgery". Yes it is major surgery and there are some life style adjustments required post surgery but they are manageable.
Be sure to ask lots of questions, get second opinions, and consider going to a major cancer center that does many of these surgeries every week. They know how to manage the surgical risk and the recovery process. And potentially can offer "minimally invasive" surgical options.
But most important is attitude!!!
This is a SURVIVOR network. There will be some challenges but there are better days ahead.
You will find lots of support and good advice here from people "who have been there".
We will be praying that your wife feels better from the chemo soon and has a great outcome from the surgery.
Best Regards,
Paul Adams
AKA "paul61"
McCormick, South Carolina
Hi,
I had 2 rounds of 5 FU and got terrible swelling and sloughing off of my mouth tissue after my 1st round, but my drs prescribed a herpes medication, Acyclovir solution liquid because I could not take pills. It cleared up the first round sores and I took it before, during and after my next round with no mouth sores whatsoever. I also took it when I underwent clean up chemo and it prevented mouthsores then too. I know your wife had the worst case scenario but this helped me so much and was a godsend. I don't know if this would help your wife but to stop it from happening again, I would definitely bring it up to your drs. good luck on the chemo and radiation. take care, prayers always,
Donna700 -
Welcome to you and your wife
Hi Timp,
Welcome aboard! I was a caregiver for my dad. There are other mouthwashes that will be very helpful. It is also true that this too will pass, once the med is out of her system. This is usually the plan with ec. First treat it with chemo and radiation, and then surgery. If she is a candidate for surgery, that is great! There are many survivors on this board who have had the surgery done. Their quality of life is wonderful. Some minor adjustments post surgery, but otherwise no big deal. You will meet our one 7 year survivor William. He is one of the best to talk to. Good luck to you and your wife. What are your names so we can pray for you? Keep in touch.
Tina0 -
MucosidisTina Blondek said:Welcome to you and your wife
Hi Timp,
Welcome aboard! I was a caregiver for my dad. There are other mouthwashes that will be very helpful. It is also true that this too will pass, once the med is out of her system. This is usually the plan with ec. First treat it with chemo and radiation, and then surgery. If she is a candidate for surgery, that is great! There are many survivors on this board who have had the surgery done. Their quality of life is wonderful. Some minor adjustments post surgery, but otherwise no big deal. You will meet our one 7 year survivor William. He is one of the best to talk to. Good luck to you and your wife. What are your names so we can pray for you? Keep in touch.
Tina
Thanks to all for the speedy replies to my first post this AM. I will certainly follow up on the Caphosol and acyclovir suggestions. My wife (Dianna) is finding the Magic mouth wash is not all that helpful.
I will post more information about us when I get a chance.
Tim
I am not sure how to post a general response to several messages so I don't have to reply each individual message. Is there a "how to" section for the discussion boards?0 -
Everyone is different
5FU for instance, was no big deal to Layne. But now irupician or whatever it is called--uck. terrible. nasty. not nice. and Xeloda TORE HIM UP... while others do great on both of those.
Surgery is the same way. The surgery did only good for Layne. Sure he had to heal from it, but within a month, he was up and about and even at work on light duty. He does not miss his esophagus portions that are missing at all. And the tummy tuck helped him lose weight he had wanted to lose for years and years.
Now, would he have done it again since he has mets? Yes. He wanted to know he had done everything he could do. And that was important to him.
But again, everyone is different. We have young kids...so we are in a different situation than many.
\
Betty0 -
mouthsores
Dear Timp,
My husband suffered terribly from mouthsores caused by the 5FU. He tried many mouthwashes to help relieve the pain. Caphosol seemed to give him the most relief. Your doctor is right-the mouthsores do eventually go away as the drug exits your body.
My husband also had surgery. Things about his life, our lives, are different but not unbearable. He is happy. He enjoys life. His strength and hair came back. His smile and joy came back. Unfortunately for him, his cancer also came back but there are many on this site whose hasn't. That's how cancer works.
We never considered not having the surgery. Given the choice, my husband would do it all again. He is going to do it all again-except the surgery but only because surgery is not recommended for his new cancer. I know it seems overwhelming. Just take it one step at a time. Each day brings you closer to defeating this monster.
Best wishes for your wife's treatment and recovery.
Jane0 -
Treatment Options/Advicesurvivorfam said:mouthsores
Dear Timp,
My husband suffered terribly from mouthsores caused by the 5FU. He tried many mouthwashes to help relieve the pain. Caphosol seemed to give him the most relief. Your doctor is right-the mouthsores do eventually go away as the drug exits your body.
My husband also had surgery. Things about his life, our lives, are different but not unbearable. He is happy. He enjoys life. His strength and hair came back. His smile and joy came back. Unfortunately for him, his cancer also came back but there are many on this site whose hasn't. That's how cancer works.
We never considered not having the surgery. Given the choice, my husband would do it all again. He is going to do it all again-except the surgery but only because surgery is not recommended for his new cancer. I know it seems overwhelming. Just take it one step at a time. Each day brings you closer to defeating this monster.
Best wishes for your wife's treatment and recovery.
Jane
Thanks to William for his extensive references for further research. It will take me a while to get through them.
I have posted a bit more information about Dianna's condition on the About Me section of the user profile, but I don't know if or how that is made generally available to list readers. Her stage is T3, N1, M0, which I believe is generally described as Stage III.
We do plan to go for a second opinion and are researching where to have this done. Our primary care is currently being done at Univ. of Virginia Medical Center. I am familiar with the statistics and recommendations to have surgery done at a center that does lots of these kinds of surgeries and UVa qualifies on that score. We are considering UPitt (based on many comments from William), Johns-Hopkins and Fox-Chase for second opinions. Johns-Hopkins has a formal second opinion program that looks attractive. Does anyone have any experience with them? Are there other suggestions? We want to stay on the East Coast if possible. The MIE procedure certainly looks preferable to the Ivor-Lewis, especially for my wife (see below). But I need to do more research on it.
The decision on whether or not to have surgery will certainly be made by my wife. But I want us to have as much information as possible before we make this decision. We have time for investigation since she has at least 4 more weeks of chemo plus another 4 weeks of recovery before any surgery would be possible. She is very sensitive to anesthetics and it takes her a long time to recover from surgery. And this is for rather minor procedures, such as placing her J-tube. Six hours on the table for an esophagectomy would likely be extremely debilitating for her in terms of recovery.
From some of the comments so far, it seems that some who undergo surgery do not appear to suffer major impacts on their quality of life. But we personally know some who have had similar surgeries and this has not been their experience. So the question for us is, if the surgery would not result in a measurably better outcome in terms of years of survival, coupled with the possible effects on the quality of life, is it worth it? We realize that no one can know the real answer to this question. But we think it is legitimate to consider the trade-offs between, say, 5 years with a good quality of life compared to a possible 6 -7 years of compromised quality of life.
We appreciate any advice from those who have already made this journey.
Tim0 -
We have UVA in Commontimp said:Treatment Options/Advice
Thanks to William for his extensive references for further research. It will take me a while to get through them.
I have posted a bit more information about Dianna's condition on the About Me section of the user profile, but I don't know if or how that is made generally available to list readers. Her stage is T3, N1, M0, which I believe is generally described as Stage III.
We do plan to go for a second opinion and are researching where to have this done. Our primary care is currently being done at Univ. of Virginia Medical Center. I am familiar with the statistics and recommendations to have surgery done at a center that does lots of these kinds of surgeries and UVa qualifies on that score. We are considering UPitt (based on many comments from William), Johns-Hopkins and Fox-Chase for second opinions. Johns-Hopkins has a formal second opinion program that looks attractive. Does anyone have any experience with them? Are there other suggestions? We want to stay on the East Coast if possible. The MIE procedure certainly looks preferable to the Ivor-Lewis, especially for my wife (see below). But I need to do more research on it.
The decision on whether or not to have surgery will certainly be made by my wife. But I want us to have as much information as possible before we make this decision. We have time for investigation since she has at least 4 more weeks of chemo plus another 4 weeks of recovery before any surgery would be possible. She is very sensitive to anesthetics and it takes her a long time to recover from surgery. And this is for rather minor procedures, such as placing her J-tube. Six hours on the table for an esophagectomy would likely be extremely debilitating for her in terms of recovery.
From some of the comments so far, it seems that some who undergo surgery do not appear to suffer major impacts on their quality of life. But we personally know some who have had similar surgeries and this has not been their experience. So the question for us is, if the surgery would not result in a measurably better outcome in terms of years of survival, coupled with the possible effects on the quality of life, is it worth it? We realize that no one can know the real answer to this question. But we think it is legitimate to consider the trade-offs between, say, 5 years with a good quality of life compared to a possible 6 -7 years of compromised quality of life.
We appreciate any advice from those who have already made this journey.
Tim
Hi Tim,
I was happy to see that you too are at UVA. This is where I took my dad. We live 90 mins from UVA. Their Radiation/Ongology dept is excellent! Our dr. was Dr. Richard Cambrieri. He and his staff are wonderful. I do not disagree with you on getting a second opinion, but I do think that UVA is a highly rated cancer hospital. You are right in considering her quality of life. Quality out ranks quantity. My dad beat ec. He had a great 12 mos. His downfall began when the primary ec methtasized to his liver. This was 3 months of suffering and pain. He no longer had any quality of life. We and the drs at UVA granted him his wishes, and he peacefully passed away on March 9, 2010. You are both on the right path. Make sure you both continue to have your positive attitudes. Have a strong faith. Start writing a journal, this proved to be very beneficial to our family. We will be praying for you both. If you see Dr. Cambarari, or Lisa Palumbo, tell them Tina said hello! I do hear nothing but positive feedback concerning the cancer center and hospital in Pittsburgh Pa. Good luck in your search.
Tina0 -
For WilliamTina Blondek said:We have UVA in Common
Hi Tim,
I was happy to see that you too are at UVA. This is where I took my dad. We live 90 mins from UVA. Their Radiation/Ongology dept is excellent! Our dr. was Dr. Richard Cambrieri. He and his staff are wonderful. I do not disagree with you on getting a second opinion, but I do think that UVA is a highly rated cancer hospital. You are right in considering her quality of life. Quality out ranks quantity. My dad beat ec. He had a great 12 mos. His downfall began when the primary ec methtasized to his liver. This was 3 months of suffering and pain. He no longer had any quality of life. We and the drs at UVA granted him his wishes, and he peacefully passed away on March 9, 2010. You are both on the right path. Make sure you both continue to have your positive attitudes. Have a strong faith. Start writing a journal, this proved to be very beneficial to our family. We will be praying for you both. If you see Dr. Cambarari, or Lisa Palumbo, tell them Tina said hello! I do hear nothing but positive feedback concerning the cancer center and hospital in Pittsburgh Pa. Good luck in your search.
Tina
William,
I would like to correspond with you directly. Please send me your E-mail address at timp@vt.edu
Regards,
Tim0 -
This comment has been removed by the Moderatortimp said:Treatment Options/Advice
Thanks to William for his extensive references for further research. It will take me a while to get through them.
I have posted a bit more information about Dianna's condition on the About Me section of the user profile, but I don't know if or how that is made generally available to list readers. Her stage is T3, N1, M0, which I believe is generally described as Stage III.
We do plan to go for a second opinion and are researching where to have this done. Our primary care is currently being done at Univ. of Virginia Medical Center. I am familiar with the statistics and recommendations to have surgery done at a center that does lots of these kinds of surgeries and UVa qualifies on that score. We are considering UPitt (based on many comments from William), Johns-Hopkins and Fox-Chase for second opinions. Johns-Hopkins has a formal second opinion program that looks attractive. Does anyone have any experience with them? Are there other suggestions? We want to stay on the East Coast if possible. The MIE procedure certainly looks preferable to the Ivor-Lewis, especially for my wife (see below). But I need to do more research on it.
The decision on whether or not to have surgery will certainly be made by my wife. But I want us to have as much information as possible before we make this decision. We have time for investigation since she has at least 4 more weeks of chemo plus another 4 weeks of recovery before any surgery would be possible. She is very sensitive to anesthetics and it takes her a long time to recover from surgery. And this is for rather minor procedures, such as placing her J-tube. Six hours on the table for an esophagectomy would likely be extremely debilitating for her in terms of recovery.
From some of the comments so far, it seems that some who undergo surgery do not appear to suffer major impacts on their quality of life. But we personally know some who have had similar surgeries and this has not been their experience. So the question for us is, if the surgery would not result in a measurably better outcome in terms of years of survival, coupled with the possible effects on the quality of life, is it worth it? We realize that no one can know the real answer to this question. But we think it is legitimate to consider the trade-offs between, say, 5 years with a good quality of life compared to a possible 6 -7 years of compromised quality of life.
We appreciate any advice from those who have already made this journey.
Tim0 -
I agree with Sherriunknown said:This comment has been removed by the Moderator
Timp,
I agree with Sherri. My husband is stage IVa and non-operable. He also was told he would be on chemo indefinately for the rest of his life.If there was a chance he could have surgery, we would do it without doubt. Yes, it's a very hard surgery, but it's worth fighting for. And everybody is different.....your wife may sail through it just fine and not have any complications from it......and be cured. But you have to take the chance for the cure......there is no other choice.
Kelly0
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