Questions so we can make informed decisions re stopping chemo
But for some reason, it's hitting me that he really really means it this time.
The pain in his arms and legs, the over all malaise..
3 or 4 folfox, 2 5fu, 4 more to go of 5fu
Jack says will ask Onc to do a scan, or he willhave another scope to ease my (and surely his) mind when he quits
My question...
??- if the chemo worked, there should be nothing to see, yes?
??- if the chemo worked but he stopped too early, there could be something to see, but not this quick, yes?
??- if something shows up later, how will we know if the chemo he was on worked and he just quit too early....what would the usual course of action be then...more 5 fu? Something different?
??-Does Xeloda cause you that are on it a lot of side effects or symptoms? Onc mentioned taking it after Oxal reaction, wondered if Jack would carry on with that if it were less symptomatic possibly.
??- finally...Onc said would do a CT scan when done with chemo...why not a PET? Am I wrong that the PET will detect cancer cells at an earlier stage...he's never had a PET, but all 3 CT's have come back clean except a mass on his kidney and one on his adrenal gland which both were benign according to the docs.
Lots of questions, I kmow....
Comments
-
Good Morning
Everyone will tell you that the decision to stop chemo is a very personal one, everyone has their limits. I remember my first round and I remember my last round, I completed the last round even after my doctor said I was clear, I did it for my family, but to no avail, because 6 months later it came back, so who is to say if it would have come back sooner or not at all if I had not taken that last treatment. I did the 5FU IV treatment the first round, absolutely hated it, and if faced with having to do it again I am not sure I would, for my second round I did the Xeloda, max dosage, and I have been clear for 2.5 yrs now, at my last appointment my ONC actually seemed hopeful, he told me that he had expected me to have a reoccurance, again he seemed hopeful for the first time in over a year that I have been seeing him. The side effects for ME were much less with Xeloda, with the exception of the neuropathy in both my feet. I have not felt the same since I first took chemo in2007, but I am alive and I am very blessed and thankful. I am not sure I am helping any, but wanted to share my thoughts with you. We all have so many questions that I dont think can be answered as we all have different experiences. I am a big fan of Xeloda because it worked for me, so far (praying it continues). I wish you both the best and I will say a special prayer for your husband.
God Bless you
HUGS
Beth0 -
Xelodadorookie said:Good Morning
Everyone will tell you that the decision to stop chemo is a very personal one, everyone has their limits. I remember my first round and I remember my last round, I completed the last round even after my doctor said I was clear, I did it for my family, but to no avail, because 6 months later it came back, so who is to say if it would have come back sooner or not at all if I had not taken that last treatment. I did the 5FU IV treatment the first round, absolutely hated it, and if faced with having to do it again I am not sure I would, for my second round I did the Xeloda, max dosage, and I have been clear for 2.5 yrs now, at my last appointment my ONC actually seemed hopeful, he told me that he had expected me to have a reoccurance, again he seemed hopeful for the first time in over a year that I have been seeing him. The side effects for ME were much less with Xeloda, with the exception of the neuropathy in both my feet. I have not felt the same since I first took chemo in2007, but I am alive and I am very blessed and thankful. I am not sure I am helping any, but wanted to share my thoughts with you. We all have so many questions that I dont think can be answered as we all have different experiences. I am a big fan of Xeloda because it worked for me, so far (praying it continues). I wish you both the best and I will say a special prayer for your husband.
God Bless you
HUGS
Beth
My husband did the Xeloda, his side effects were few. Just needed too drink alot more water and had some diarrea.
Good luck in whatever decision your husband makes.0 -
Well........let me try and answer some.....
First of all you are looking for someone to tell you that absolutely there will be no more issues or re occurences....No one can do that with 100% accuracy. We all want to know that absolutely we will remain cancer free for the rest of our lives if we do this or that....No one can give anyone a guaranteed answer.....but we can suggest what we know from facts...here are a few facts......
#1 If chemo worked there should be nothing to see??? Maybe ,maybe not ,you may not see it or it may be buried up but we may never know as I found after 10 oxy with 5fu and the last two with 5fu only...still re occurred...Had I not done any...may have been re occurred faster or maybe even wider range of metastisis, but I do know that it may or may not matter how many you do as to whether or not you re occur or not..It does up your odds at non reoccurence I would think but there is a trade off in quality versus quantity of life...
#2 You are saying that if he is doing the chemo and it is working and he stops then there could be something to see but not this early.....I think your asking if there is something showing up does he have enough chemo in him to take care of what is showing up ?
....In my opinion only, if he does a Cat or Pet and something lights up (PET shows more as far as scattered cells that are active) Cat are more for tumor findings...If something shows my guess is that I would continue on with the chemo..if its a tumor then he can measure the growth ..is it growing or shrinking or stable..That would make the decision for me...but again, thats just me and my opinion...
#3 There again no one can answer that one...You can only do what you think you need an use the opinions of Oncologists as to what your elections can be...you have to make the personnal choice as to when enough is enough and you also have to strong enough to not doubt your decisions you make....I did all of mine except the last two and did 5fu with the last two only, and still it came back...Would I do it again...Absolutely, but thats me. Is it because I quit to early the first time...absolutely not, I made the decision and I made the right one, the decision you or he makes will be the right one. Never, ever, look back and say could of, would of, should of.....if we re occur then we do whatever the met states we do, RFA, surgery, radiation, 5fu,Xeloda, Folfiri, etc etc etc..It depends on where and how large or how widespread or maybe nothing at all...We take it one small step at a time.....
#4 My guess is Xeloda would be one he would do...I think he actually is tired of all the running, appts, needles, etc that go with this journey. If he had only to take pills and can do it at home I think he may just do that. The issue would be this, did he do them or will he do them as he should if it makes him feel bad...Dunno, can't answer that either, thats for you and him to work out.....
#5 PET Scans do show more minute' activity than CTs do. They do however do PET and CT scans to use together to get a broader prospective of what they are up against and to see as well if there are other cells active around the tumor growth or maybe just confined to that particular area...It gives them a wide view of what particular regimen will work best as to what they see in the two scans..So yes a Pet does actually show more ......as far as insurance goes its more expensive too.......may be the reasoning behind getting a CT instead of a PET....I would surely ask that question to the Onc personally.......I hope this helps a little.....its only my opinions and take on these questions.......Love and Hope to you both....Clift0 -
Chriss:)
I just opened a post titled "The Chemo Wars - What's the Real Story?"
Part of me does not want you to read it, because I don't want to discourage you, but the other part of me says that you and Jack are friends and so you might want to read it and see what you get out of it.
You may never want to talk me again, but it is important information and I can't tell just one person of the community - when I talk, I talk to the entire community, which includes myself.
And you know, I'm closing in on 51 total chemo treatments in my fight and am right in the middle of finishing off this round and doing another one next week. So, I'm in the "chemo shoes" right now.
Cancer does not have a definite answer - no guaranteed cures, no matter which route we take - which surgeries we do - which protocols we follow - or for how long or short.
All we can do is fight (as long as we can until quality runs out) and make the best informed decisions from what we learn and counsel from.
I look forward to speaking with Jack and to meeting you - and perhaps we can shine the light some more on the difficult topics that cancer brings to the forefront of our lives.
All my best!
-Craig0 -
Hey Craig, too late, I readSundanceh said:Chriss:)
I just opened a post titled "The Chemo Wars - What's the Real Story?"
Part of me does not want you to read it, because I don't want to discourage you, but the other part of me says that you and Jack are friends and so you might want to read it and see what you get out of it.
You may never want to talk me again, but it is important information and I can't tell just one person of the community - when I talk, I talk to the entire community, which includes myself.
And you know, I'm closing in on 51 total chemo treatments in my fight and am right in the middle of finishing off this round and doing another one next week. So, I'm in the "chemo shoes" right now.
Cancer does not have a definite answer - no guaranteed cures, no matter which route we take - which surgeries we do - which protocols we follow - or for how long or short.
All we can do is fight (as long as we can until quality runs out) and make the best informed decisions from what we learn and counsel from.
I look forward to speaking with Jack and to meeting you - and perhaps we can shine the light some more on the difficult topics that cancer brings to the forefront of our lives.
All my best!
-Craig
Hey Craig, too late, I read your post. (o: I don't recall if it was before or after my post, but I did read it.
In fact, I talked with Jack and my kids at dinner about your journey. You were specifically in our dinner prayer tonight. (o:
I "get" why he wants to stop...(as much as a caregiver can get it) I "get" that there are no definite answers to my questions, but they run across my heart regardless.
I also know that I will never give myself a break that I didn't drag him by his ear back to the doctor when he was first dx with stage 1, if even that. And yes, I coulda dragged him.
I haven't written this, not sure I've even said it to anyone....but I just got tired of trying to talk him into going back last time. I got frustrated, tired and irritated, so I fooled myself into thinking that "fine then, I guess it will be okay, and if not, it was your choice. Embarrassing as hell to admit that.
In a million years I would have never dreamed that we would be here less than a year after his polyp was removed. All he needed done was one more procedure to "scoop" out the area better. I wish I had come here then...or maybe I did, I don't even remember.
Being a nurse and the wife that always took care of him, I should have known better than to just say "oh well, I'm tired, he's tired...we'll just let it slide." Stupid stupid stupid.
I guess I feel that I let him down and I owe it to him to be strong this time and not let him stop, so I search for answers and hope that if the day comes, I will be able to say that we did everything we could, everything. I will die a million deaths if this takes him from me, but if I know that we could have, should have, done any more that will be the end all for me emotionally, and I know I have to stay, for my kids I would have to stay.
I tried to explain to my Mom the other night...look at it as my intentions are completely selfish. I don't, can't and sometimes say won't live without him.
Its not lost on me that everyone here, or in this world, who is fighting for life, has this same deep sadness when faced with losing, I'm not special in that regard, we all need each other through this and I thank God that I found my friends here...but at the same time I'm asking why....can't quite get past the why...
I am looking forward to meeting you and your wife also, I will get you the specific dates asap...a lot depends on what Jack and his Onc agree on next Tues.
Hang in there!
Chriss0 -
Chriss, Please take a minute and reflect on something.......okthen said:Hey Craig, too late, I read
Hey Craig, too late, I read your post. (o: I don't recall if it was before or after my post, but I did read it.
In fact, I talked with Jack and my kids at dinner about your journey. You were specifically in our dinner prayer tonight. (o:
I "get" why he wants to stop...(as much as a caregiver can get it) I "get" that there are no definite answers to my questions, but they run across my heart regardless.
I also know that I will never give myself a break that I didn't drag him by his ear back to the doctor when he was first dx with stage 1, if even that. And yes, I coulda dragged him.
I haven't written this, not sure I've even said it to anyone....but I just got tired of trying to talk him into going back last time. I got frustrated, tired and irritated, so I fooled myself into thinking that "fine then, I guess it will be okay, and if not, it was your choice. Embarrassing as hell to admit that.
In a million years I would have never dreamed that we would be here less than a year after his polyp was removed. All he needed done was one more procedure to "scoop" out the area better. I wish I had come here then...or maybe I did, I don't even remember.
Being a nurse and the wife that always took care of him, I should have known better than to just say "oh well, I'm tired, he's tired...we'll just let it slide." Stupid stupid stupid.
I guess I feel that I let him down and I owe it to him to be strong this time and not let him stop, so I search for answers and hope that if the day comes, I will be able to say that we did everything we could, everything. I will die a million deaths if this takes him from me, but if I know that we could have, should have, done any more that will be the end all for me emotionally, and I know I have to stay, for my kids I would have to stay.
I tried to explain to my Mom the other night...look at it as my intentions are completely selfish. I don't, can't and sometimes say won't live without him.
Its not lost on me that everyone here, or in this world, who is fighting for life, has this same deep sadness when faced with losing, I'm not special in that regard, we all need each other through this and I thank God that I found my friends here...but at the same time I'm asking why....can't quite get past the why...
I am looking forward to meeting you and your wife also, I will get you the specific dates asap...a lot depends on what Jack and his Onc agree on next Tues.
Hang in there!
Chriss
Wanna blame something, blame the cancer itself...Its not you or your husbands fault, you made decisions, we all make decisions, sometimes they're right and sometimes they're not, but we make them nonetheless. We intend on them being the right decision every time but it doesn't work out that way sometimes. Do we blame ourselves for making wrong decisions, certainly, but why ? Making a decision right or wrong is simply something that happens...its useless to close a gate after the cows have gotten out, so why do we beat ourselves up with it....
Knowledge is a learned lesson normally originated by an experienced failure and usually never forgotten, but its knowledge learned. If we never made mistakes then we would never learn anything or accrue any knowledge or wisdom, there wouldn't be a need, but we can't do that on a 100% basis, not possible.
Should have, could have, would have.....but didn't...it was a choice...the same type that I made, the same type that Buckwirth is dealing with now, as Pete Lost At Sea is dealing with, the same as a lot of people in here deal with everyday to make the choices that hopefully will suit them the best for their individual needs. But all of us know the risks we take when we make or don't make the choices we have in front of us...Do we need to second guess the choice we do make? No, we need to stand by our decisions good or bad, and if they fail then we have gained a lot of knowledge to make the next decision a lot better choice than the first, and so on and so on...each choice right or wrong is a building block that makes the next one better than its predecessor. Its the same decisions that scientists make everyday to finding a cure for this disease, decision, failure, knowledge, better decision, failure, better knowledge, better decision, finally....success.....that's what you are looking for, the decision made that will be the right one in yours and his case.
Never underestimate the power of instinctive survival mode...you go into it when you decide that mortality is actually real...I think he will as well, but you have to be beside him in his decisions. You need to let him know that his decision is certainly his to make but you should have some say in it as well for at least piece of mind for you.
This is something that all of us will undertake someday, either our spouse or ourselves will be in this situation that we will lose our spouse or loved one...we have to have the ability to realize that all of us on earth will face this....When we learn that it can happen to us, something we never think can, then it really hits home, and we need to make arrangements for our emotional and physical self to maintain control or all is lost.....
No one wants to think of our loved ones passing away, but its inevitable for us all, and sometimes decisions we have to make are life decisions, right or wrong, we make them with the best of intentions, and sometimes we are wrong, but we certainly don't need to beat our selves up when its to no avail to do so...Use the emotion to love, to laugh, to smile, and just maybe when he sees that you are ok with his decisions he wants to make, he may just the same change his mind and decide that he wants to go into the survival mode, and may just the same come out on top.....
Please don't hold yourself responsible for a choice that both of you made, it does you or him any service...but use your emotions and physical being to relish what you have with each other, use your spare free time for niceties on him or yourself. Be kind to him and more to yourself, above all, believe that all will be well, and it will.....
love to you both in every decision.......Clift0 -
Thanks Buzz, very nicelyBuzzard said:Chriss, Please take a minute and reflect on something.......
Wanna blame something, blame the cancer itself...Its not you or your husbands fault, you made decisions, we all make decisions, sometimes they're right and sometimes they're not, but we make them nonetheless. We intend on them being the right decision every time but it doesn't work out that way sometimes. Do we blame ourselves for making wrong decisions, certainly, but why ? Making a decision right or wrong is simply something that happens...its useless to close a gate after the cows have gotten out, so why do we beat ourselves up with it....
Knowledge is a learned lesson normally originated by an experienced failure and usually never forgotten, but its knowledge learned. If we never made mistakes then we would never learn anything or accrue any knowledge or wisdom, there wouldn't be a need, but we can't do that on a 100% basis, not possible.
Should have, could have, would have.....but didn't...it was a choice...the same type that I made, the same type that Buckwirth is dealing with now, as Pete Lost At Sea is dealing with, the same as a lot of people in here deal with everyday to make the choices that hopefully will suit them the best for their individual needs. But all of us know the risks we take when we make or don't make the choices we have in front of us...Do we need to second guess the choice we do make? No, we need to stand by our decisions good or bad, and if they fail then we have gained a lot of knowledge to make the next decision a lot better choice than the first, and so on and so on...each choice right or wrong is a building block that makes the next one better than its predecessor. Its the same decisions that scientists make everyday to finding a cure for this disease, decision, failure, knowledge, better decision, failure, better knowledge, better decision, finally....success.....that's what you are looking for, the decision made that will be the right one in yours and his case.
Never underestimate the power of instinctive survival mode...you go into it when you decide that mortality is actually real...I think he will as well, but you have to be beside him in his decisions. You need to let him know that his decision is certainly his to make but you should have some say in it as well for at least piece of mind for you.
This is something that all of us will undertake someday, either our spouse or ourselves will be in this situation that we will lose our spouse or loved one...we have to have the ability to realize that all of us on earth will face this....When we learn that it can happen to us, something we never think can, then it really hits home, and we need to make arrangements for our emotional and physical self to maintain control or all is lost.....
No one wants to think of our loved ones passing away, but its inevitable for us all, and sometimes decisions we have to make are life decisions, right or wrong, we make them with the best of intentions, and sometimes we are wrong, but we certainly don't need to beat our selves up when its to no avail to do so...Use the emotion to love, to laugh, to smile, and just maybe when he sees that you are ok with his decisions he wants to make, he may just the same change his mind and decide that he wants to go into the survival mode, and may just the same come out on top.....
Please don't hold yourself responsible for a choice that both of you made, it does you or him any service...but use your emotions and physical being to relish what you have with each other, use your spare free time for niceties on him or yourself. Be kind to him and more to yourself, above all, believe that all will be well, and it will.....
love to you both in every decision.......Clift
Thanks Buzz, very nicely said. (o:
We talked last night, and this morning, well, heck, we are talking all the time, but I told him just what you all have suggested. My reasons for wanting him to finish treatment, but that I understood why he wants to stop.
We see Doc tomorrow, not going to think about it today.
Well, other than my visits to the board. (o: But thats like therapy, or having a cup pf coffee with some friends....
Its gonna be a good day...we actually laughed about an hour ago...boy did that feel good.....like it was just said on another thread...its the little things.
Wishing you all a GREAT day!0 -
Moving Forwardokthen said:Thanks Buzz, very nicely
Thanks Buzz, very nicely said. (o:
We talked last night, and this morning, well, heck, we are talking all the time, but I told him just what you all have suggested. My reasons for wanting him to finish treatment, but that I understood why he wants to stop.
We see Doc tomorrow, not going to think about it today.
Well, other than my visits to the board. (o: But thats like therapy, or having a cup pf coffee with some friends....
Its gonna be a good day...we actually laughed about an hour ago...boy did that feel good.....like it was just said on another thread...its the little things.
Wishing you all a GREAT day!
You hear the politicians say that all the time. Moving Forward. Means forget the past, and focus on today.
Move forward.
Best0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 396 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 670 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 537 Sarcoma
- 729 Skin Cancer
- 652 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards