How many people don't finish their chemo regimen?
Comments
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Thank you for the support. INana b said:I had my CEA results every 6
I had my CEA results every 6 weeks it was the only way for him to check if chemo was working, or in my case three chemos not working. The nurses would give me a copy of the blood work each Visit.
Thank you for the support. I didn't go to my onc appointment on Friday and her nurse left me a cranky message this morning telling me I need to be more responsible for my appointments. I've missed the last two but the one before I was too sick to go and called to tell them. On Friday I didn't call but to tell me I need to be more responsible annoyed me big time. It costs me about 25 bucks every time I go there between parking and gas as we live out of town. There's not enough parking so I have to get there early and drive around until I finally get a spot. On Friday it was -24C (-11F) and I can't walk through the huge parking lot with that kind of cold, I have to be dropped off. So I didn't go but I should have called. I guess it was my passive aggressive way of dealing with her. I hate having to drive so far and have the hassle of the cold and she's ALWAYS late, sometimes I've sat there for over an hour, just to be told that things look good. Things look good because they're just checking my overall health, not my CEA.
Dammit, I wish I'd fired her before this chemo.
Cranky Jan
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Cranky JanJanJan63 said:Thank you for the support. I
Thank you for the support. I didn't go to my onc appointment on Friday and her nurse left me a cranky message this morning telling me I need to be more responsible for my appointments. I've missed the last two but the one before I was too sick to go and called to tell them. On Friday I didn't call but to tell me I need to be more responsible annoyed me big time. It costs me about 25 bucks every time I go there between parking and gas as we live out of town. There's not enough parking so I have to get there early and drive around until I finally get a spot. On Friday it was -24C (-11F) and I can't walk through the huge parking lot with that kind of cold, I have to be dropped off. So I didn't go but I should have called. I guess it was my passive aggressive way of dealing with her. I hate having to drive so far and have the hassle of the cold and she's ALWAYS late, sometimes I've sat there for over an hour, just to be told that things look good. Things look good because they're just checking my overall health, not my CEA.
Dammit, I wish I'd fired her before this chemo.
Cranky Jan
You must go to your appointments (there, I sound like your nurse).
My husband drove me the 360 miles round trip, every two weeks to get my chemo. Sometimes it was snowing so bad we could hardly see the road.
-25 is cold though, and I know it hurts to breath when it is that cold. Just tell yourself that whenever you put off a treatment, then it only makes it longer before you're finished.
Right, I shall get down off my wall now. I don't mean to be preachy, but missing appointments just makes it worse for you in the long-run.
Sue - Trubrit
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Okay, 360 miles is a longTrubrit said:Cranky Jan
You must go to your appointments (there, I sound like your nurse).
My husband drove me the 360 miles round trip, every two weeks to get my chemo. Sometimes it was snowing so bad we could hardly see the road.
-25 is cold though, and I know it hurts to breath when it is that cold. Just tell yourself that whenever you put off a treatment, then it only makes it longer before you're finished.
Right, I shall get down off my wall now. I don't mean to be preachy, but missing appointments just makes it worse for you in the long-run.
Sue - Trubrit
Okay, 360 miles is a long drive, wow. I have an hour drive and have to do it the Friday to see her which seems like a complete waste of time and money and then again on the Monday right after for the chemo. I did get them to give me a req for CEA results, though!
I did treatment number five today and tried to keep my hands cool while it was coming in. I may be proved wrong later but at this point I think I have less cold sensitivity than I did when I was done the last treatment. I'm cautiously optimistic.
Jan
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Hey Jan, Hang in there!!!!JanJan63 said:Thank you everyone for the
Thank you everyone for the support.
Winter Marie, my oncologist is about as helpful as Nubs would be. I should have switched before this second round. Karin, thank you for the encouragement. I'm a stage three. I don't want to take a break because I need to get better and get back to work. The cold sensitivity is really bad now because it's so cold here. Today was -24 C with a wind chill of -39 C. That's -11 F and -38 F. It affects so many things. Last week I had to use a glove to talk on my cell phone and make sure it didn't touch my face. I can't take silverware out of the drawer without gloves. It's ridiculous. We keep our house warm but the coldness gets into everything. I have to use gloves to feed the dogs because their dishes are metal. I'm only getting a few days before the next chemo where I can drink something cold but not too cold. Another two months of this is going to drive me nuts.
I didn't see my oncologist yesterday because I can no longer drive myself there due to the cold sensitivity as it's hard to find a spot and they're always far from the door and I can't get into a cold car. My friend was supposed to take me but they had a gas leak avacuation in the middle of the night and she still wasn't able to go home and they had three dogs with them at the hotel.
Jan
Hey Jan, Hang in there!!!! It's really hard but you can do it. Everyone goes through this phase but just keep pushing your way through and look at it as you didn't lose a year of your life, you've gained 20 more. That's truly how I look it at it now. I don't know how I got through it. Wear gloves everywhere, it helps with the neuropathy. Also they have these little hot packets that you can crack and they will warm your hands and feet when outside. They're very inexpensive. I wore my lined boots and kept on my gloves almost all the time. Sleep as much as you can to get through the bad feeling. You're almost at the end. I skipped a few days of xeloda at some point because the nausea was just too much but that was it, try to finish the oxilaplatin. Also you should use the disability spots at your doctors if you can, it's a valid disability. You're almost done with the hard part, there is an ending in sight!!!!!!!!! You can make it.
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CEA is a normal part of yourJanJan63 said:I have no idea what my CEA is
I have no idea what my CEA is because my onc hasn't asked for it. They say I'm healthy other than fighting cancer. Tomorrow is chemo day so I've been upset and stressed for the last few days. I hate, hate, hate it.
CEA is a normal part of your bloodwork. Ask for a copy of your bloodwork and you'll be able to see it on there.
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The one before makes senseJanJan63 said:Okay, 360 miles is a long
Okay, 360 miles is a long drive, wow. I have an hour drive and have to do it the Friday to see her which seems like a complete waste of time and money and then again on the Monday right after for the chemo. I did get them to give me a req for CEA results, though!
I did treatment number five today and tried to keep my hands cool while it was coming in. I may be proved wrong later but at this point I think I have less cold sensitivity than I did when I was done the last treatment. I'm cautiously optimistic.
Jan
The one before makes sense because they're taking your bloodwork just to make sure you can do the next chemo but the one after seems like a money maker. If you do nothing but walk in, she checks you over, then you can skip that appt. I never had to go to one after, just the one before to get my bloodwork done and check my pressure. If you feel like two appts are a waste, just tell her you want the one. She would have to give you a good reason for the second. I can't think of what that would be.
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Do you have a handicap
Do you have a handicap plaque? Your ONC can get you one. Although, I know most at the clinic PATIENTS USE THEM.
I had an hour commute to work, worked 10 hours, then 1.5 hour commute to cancer clinic, then 35 minute drive home. Towards the end I needed help, last two visits. I look back now and wonder how I did it and maintain a home and put dinner on the table. Wow to me. All this so I wouldn't lose my job. Then I did lose my job, and what can I say they will never forget my name.
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Sorry, no I go for one toHelen321 said:The one before makes sense
The one before makes sense because they're taking your bloodwork just to make sure you can do the next chemo but the one after seems like a money maker. If you do nothing but walk in, she checks you over, then you can skip that appt. I never had to go to one after, just the one before to get my bloodwork done and check my pressure. If you feel like two appts are a waste, just tell her you want the one. She would have to give you a good reason for the second. I can't think of what that would be.
Sorry, no I go for one to talk to her and the other is the chemo. So just two times there and no follow up appointment. I don't like her and feel that it could just be done by phone now that it's so cold here and such a pia to get there. And I didn't appreciate the nurse's message at all. But she did give me a form so I could get my CEA results. First she told me to just write it myself on my regular req. Is that professional? It would be like a kid writing a fake note from their parents.
So now I'm scared to do it! If they're low then I want to know, if they're high I don't.
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They don't give out theNana b said:Do you have a handicap
Do you have a handicap plaque? Your ONC can get you one. Although, I know most at the clinic PATIENTS USE THEM.
I had an hour commute to work, worked 10 hours, then 1.5 hour commute to cancer clinic, then 35 minute drive home. Towards the end I needed help, last two visits. I look back now and wonder how I did it and maintain a home and put dinner on the table. Wow to me. All this so I wouldn't lose my job. Then I did lose my job, and what can I say they will never forget my name.
They don't give out the handicap cards for cancer patients. I hate to say it but here would be a lot more cards out there if they did! Maybe then the handicap spots wouldn't be sitting there half empty.
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Sorry it's
So horrible. I did all 12 folfox treatments but my blood counts were so low they cut the oxy in half for number 11 and omitted it altogether for number 12. Oxy is the really harsh one so maybe they can reduce it for you. Good luck and talk to your doctor, tell her how you feel, same with the mean nurse, they need to be more sympathetic!
Eastflip/Richard
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I have a good feeling that
I have a good feeling that you can get through this! You are really really close to the end of your tx. This sounds to me more like you are angry about the holiday.
I can tell you that I totally relate. I had my first tx as 12 Folfox ... (5FU/Oxy) right in the middle of Thanksgiving, Christmas, New Years and Easter, wait .. my birthday and anniversary as well. It was historically one of the coldest winters here with most of it below 0. I may have manipulated the dates so I could "enjoy" the holiday's a bit more, but I also finished all 12 on the 5FU, had the oxy cut back several times throughout tx, and held completely for the last tx. I thought I would feel a lot better on that last one because of the oxy being held, but I was wrong. I felt the same as always, just estatic it was all over with.
We all do feel exactly as you do right now. But, if you were recommended for the tx and can just push through .. then it sounds to me like you should continue. The meetings with your doctor are to be sure that you CAN continue. I would be sure to tell your oncologist every little thing that is going on .. and take it from there. As for if the tx are working .. you may never know. I thought for sure they were .. I did start at the 6 week mark after my first surgery. I did the best I could, having to delay a few weeks here and there for blood counts to raise to adequate levels, and in the end I still recurred and was bumped from stage III to IV.
I had surgery again, this time my recovery was delayed, and so was my next rounds of tx. Faced with the same delema, I opted to go forward, and I have remained NED since. That time I did Folfiri (5FU plus Irinitican) .. It was hard, I wanted to quit both times around tx #5 .. but pushed through all 12. There were delays during both tx's due to blood counts or just having to severe of side effects.
Counting as "only 2 more" after this one definitely got me through as well as my doctors, spouse, this forum, and my Mom. I can not bare to see my Mom so sad as when I was diagnosed with colon cancer at such a young age. So I fight. I am determined to beat the odds and I will continue to fight ... I also love life just a little too much to give it to cancer just yet.
My thoughts are .. if you can do it .. then try your best .. because we were given a gift. We have a purpose. We need to be sure we are doing our best to fufill it however that may be. I would try to get a parking pass for sure!! Your PCP should be able to help you with that.
As for your question on if the few months would have made a difference, that is tough to say. I have been told that my children need to be checked 10 years before my dx date, because colon cancer is a very slow growing cancer. I was stage III at that time.
I did not have my CEA tested during Folfox .. I think once at the beginning and once at the end. It is not always a good marker for cancer either. Mine for instance was under 1 and I had a known growing large tumor. I have heard somewhere in this journey of mine that for some CEA will only rise if there is liver involvement. I have not had that yet so may explain why mine has always been normal, and I am stage IV.
I am sending you all the cyber strength I can to help get you through this. Go, go, go!!! Rest as much as you can between your tx's .. eat when you can, get nice and strong. Talk to your doctors ... they can help, if one does not seem to help, try talking to a different member of your team. You deserve to be heard.
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Thank you hippiechicks. I'mhippiechicks said:I have a good feeling that
I have a good feeling that you can get through this! You are really really close to the end of your tx. This sounds to me more like you are angry about the holiday.
I can tell you that I totally relate. I had my first tx as 12 Folfox ... (5FU/Oxy) right in the middle of Thanksgiving, Christmas, New Years and Easter, wait .. my birthday and anniversary as well. It was historically one of the coldest winters here with most of it below 0. I may have manipulated the dates so I could "enjoy" the holiday's a bit more, but I also finished all 12 on the 5FU, had the oxy cut back several times throughout tx, and held completely for the last tx. I thought I would feel a lot better on that last one because of the oxy being held, but I was wrong. I felt the same as always, just estatic it was all over with.
We all do feel exactly as you do right now. But, if you were recommended for the tx and can just push through .. then it sounds to me like you should continue. The meetings with your doctor are to be sure that you CAN continue. I would be sure to tell your oncologist every little thing that is going on .. and take it from there. As for if the tx are working .. you may never know. I thought for sure they were .. I did start at the 6 week mark after my first surgery. I did the best I could, having to delay a few weeks here and there for blood counts to raise to adequate levels, and in the end I still recurred and was bumped from stage III to IV.
I had surgery again, this time my recovery was delayed, and so was my next rounds of tx. Faced with the same delema, I opted to go forward, and I have remained NED since. That time I did Folfiri (5FU plus Irinitican) .. It was hard, I wanted to quit both times around tx #5 .. but pushed through all 12. There were delays during both tx's due to blood counts or just having to severe of side effects.
Counting as "only 2 more" after this one definitely got me through as well as my doctors, spouse, this forum, and my Mom. I can not bare to see my Mom so sad as when I was diagnosed with colon cancer at such a young age. So I fight. I am determined to beat the odds and I will continue to fight ... I also love life just a little too much to give it to cancer just yet.
My thoughts are .. if you can do it .. then try your best .. because we were given a gift. We have a purpose. We need to be sure we are doing our best to fufill it however that may be. I would try to get a parking pass for sure!! Your PCP should be able to help you with that.
As for your question on if the few months would have made a difference, that is tough to say. I have been told that my children need to be checked 10 years before my dx date, because colon cancer is a very slow growing cancer. I was stage III at that time.
I did not have my CEA tested during Folfox .. I think once at the beginning and once at the end. It is not always a good marker for cancer either. Mine for instance was under 1 and I had a known growing large tumor. I have heard somewhere in this journey of mine that for some CEA will only rise if there is liver involvement. I have not had that yet so may explain why mine has always been normal, and I am stage IV.
I am sending you all the cyber strength I can to help get you through this. Go, go, go!!! Rest as much as you can between your tx's .. eat when you can, get nice and strong. Talk to your doctors ... they can help, if one does not seem to help, try talking to a different member of your team. You deserve to be heard.
Thank you hippiechicks. I'm having so much easier of a time with this last chemo treatment that I know I can stick this out. Hopefully it will continue this way.
I think I'm having a hard time because I was originally told that this will take about eight months in total and it's going to be much longer. It's already been almost a year. We're having major money problems with me not working and not being eligible for assistance. My husband has been pretty good but is coming to the end of his rope and is resenting how much he has to do because I can't and he's being unreasonable and nasty. I'm bored and lonely and have nothing to do or look forward to because I can't go do anything. I have creditors calling several times every day because my husband won't pay my credit card bills and they won't work with me and don't care when I tell them I have no money and try to explain. I'm scared of whether or not I'll be able to work once this is over and if it will only be part time and who will hire me at 51 years old and having had cancer. My husband expects me to do all the housework and cooking and even said the other day that if he had the cold sensitivity he'd learn to ignore it. He got mad yesterday about having to shovel and why can't I do it. Seriously?? He's used to me and my daughter that lives at home doing things like that and he's become very sedentary over the last few years and just sits in front of his computer while he lets us do the work. I even helped her lift and relay sidewalk blocks on her side of the house as well as bringing in sand for under them and filling the side yard with gravel for her dog a week before I started this last chemo regimen. He putterd in the garage while we did all of this and ignored us. He's refusing to put up our outdoor Christmas lights because he doesn't feel like putting them up so we'll be the only hoiuse on our block without them. he says if I want them ic an do it myself. Right.
And I don't like my oncologist and feel that she's wishy washy and useless. Everything I bring up with her she blows off or says it's nothing to do with the chemo. I'm mad at myself for not asking for a new one before this round of chemo. And getting a scolding the other day from her nurse really mad me angry. Sorry, spending $25 every time I have to drive in and sit there for an hour so I can just be told that my blood looks fine and do I have any issues that then are minimized seems so pointless. Plus the cold walk to and from the car that's a nightmare because it's so cold here now that it's winter means I have to get someone to go with me.
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You should know. KnowingJanJan63 said:Sorry, no I go for one to
Sorry, no I go for one to talk to her and the other is the chemo. So just two times there and no follow up appointment. I don't like her and feel that it could just be done by phone now that it's so cold here and such a pia to get there. And I didn't appreciate the nurse's message at all. But she did give me a form so I could get my CEA results. First she told me to just write it myself on my regular req. Is that professional? It would be like a kid writing a fake note from their parents.
So now I'm scared to do it! If they're low then I want to know, if they're high I don't.
You should know. Knowing what you're working with is important. You are the patient, you don't need to sign a form, it's your own info, she should just give it to you. Mine are posted online. Normally you only need the form if you are allowing someone else to see them or speak on your behalf. I had to sign a form for my sister to talk to my doctor and vise versa.
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They sure do. If you are notJanJan63 said:They don't give out the
They don't give out the handicap cards for cancer patients. I hate to say it but here would be a lot more cards out there if they did! Maybe then the handicap spots wouldn't be sitting there half empty.
They sure do. If you are not able to walk a distance, you are handicapped. Chemo can knock the heck out of you. And with oxilaplatin and the cold, you need it. It's a temporary pass but it's definitely a valid pass. They don't give it out for general cancer but they give it out if treatment knocks you down. I had the option to get one. I was taking the train into the city so I didn't need it but my doctor was willing to sign for it.
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Hang in there. Tell yourJanJan63 said:Thank you hippiechicks. I'm
Thank you hippiechicks. I'm having so much easier of a time with this last chemo treatment that I know I can stick this out. Hopefully it will continue this way.
I think I'm having a hard time because I was originally told that this will take about eight months in total and it's going to be much longer. It's already been almost a year. We're having major money problems with me not working and not being eligible for assistance. My husband has been pretty good but is coming to the end of his rope and is resenting how much he has to do because I can't and he's being unreasonable and nasty. I'm bored and lonely and have nothing to do or look forward to because I can't go do anything. I have creditors calling several times every day because my husband won't pay my credit card bills and they won't work with me and don't care when I tell them I have no money and try to explain. I'm scared of whether or not I'll be able to work once this is over and if it will only be part time and who will hire me at 51 years old and having had cancer. My husband expects me to do all the housework and cooking and even said the other day that if he had the cold sensitivity he'd learn to ignore it. He got mad yesterday about having to shovel and why can't I do it. Seriously?? He's used to me and my daughter that lives at home doing things like that and he's become very sedentary over the last few years and just sits in front of his computer while he lets us do the work. I even helped her lift and relay sidewalk blocks on her side of the house as well as bringing in sand for under them and filling the side yard with gravel for her dog a week before I started this last chemo regimen. He putterd in the garage while we did all of this and ignored us. He's refusing to put up our outdoor Christmas lights because he doesn't feel like putting them up so we'll be the only hoiuse on our block without them. he says if I want them ic an do it myself. Right.
And I don't like my oncologist and feel that she's wishy washy and useless. Everything I bring up with her she blows off or says it's nothing to do with the chemo. I'm mad at myself for not asking for a new one before this round of chemo. And getting a scolding the other day from her nurse really mad me angry. Sorry, spending $25 every time I have to drive in and sit there for an hour so I can just be told that my blood looks fine and do I have any issues that then are minimized seems so pointless. Plus the cold walk to and from the car that's a nightmare because it's so cold here now that it's winter means I have to get someone to go with me.
Hang in there. Tell your doctor about the money situation. My doctor was very reasonable. It's not too late to change doctors to a nicer one either, it's never too late. Even in the same hospital, you can ask for a new one. Your doctor is not going to be sensitive to a patient changing to another doctor, she's a doctor, it happens. Do what is best for you. It's very confusing when it's all new, I swore my doctor was incompetent, I'm still not sure who was competent, it seems like they're all just guessing. I was so confused in the beginning but then suddenly a lot of the terms and treatments make more sense as you get more info and ask more questions.
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YupHelen321 said:Hang in there. Tell your
Hang in there. Tell your doctor about the money situation. My doctor was very reasonable. It's not too late to change doctors to a nicer one either, it's never too late. Even in the same hospital, you can ask for a new one. Your doctor is not going to be sensitive to a patient changing to another doctor, she's a doctor, it happens. Do what is best for you. It's very confusing when it's all new, I swore my doctor was incompetent, I'm still not sure who was competent, it seems like they're all just guessing. I was so confused in the beginning but then suddenly a lot of the terms and treatments make more sense as you get more info and ask more questions.
You're right, they areYup
You're right, they are just guessing. Rick's HIPEC surgeon once candidly told me that the oncologists have a list of available drugs, and they usually start with Folfox (for insurance reasons-it's the first line drug), then when that fails, they work their way down the list by then adding Avastin, if that doesn't work, they move on to Folfiri and/or with Avastin, until there's nothing left to try. So, basically, ANYONE can be an oncologist from his description of their job!! And that's pretty much the way I saw it too, but he just confirmed it for me. I'll never forget the last appointment we had at Dana Farber. After Folfiri failed, Rick's oncologist simply stated, (with a smile mind you), "Well, there's nothing left for me to give you, so we're all done here. Take care." And that was it.
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OMG...LivinginNH said:Yup
You're right, they areYup
You're right, they are just guessing. Rick's HIPEC surgeon once candidly told me that the oncologists have a list of available drugs, and they usually start with Folfox (for insurance reasons-it's the first line drug), then when that fails, they work their way down the list by then adding Avastin, if that doesn't work, they move on to Folfiri and/or with Avastin, until there's nothing left to try. So, basically, ANYONE can be an oncologist from his description of their job!! And that's pretty much the way I saw it too, but he just confirmed it for me. I'll never forget the last appointment we had at Dana Farber. After Folfiri failed, Rick's oncologist simply stated, (with a smile mind you), "Well, there's nothing left for me to give you, so we're all done here. Take care." And that was it.
OMG...
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My experience with FOLFOX - 9
My experience with FOLFOX - 9 cycles with the whole shebang. Cycle 10, they took away the 5FU bolus because my labs were in the toilet and they had to postpone a couple treatments and well...one can't just keep postponing. Still had oxaliplatin and the 48 hours 5FU. Labs still not awesome, but just high enough to continue treatment. Cycle 11, they took away the oxaliplatin part of it because of the neuropathy. It was suggested that the impact of removing it one treatment early would be negligible - apparently most people lose the oxaliplatin at some point due to side effects (often around the halfway mark). So just the 5FU-48 hour fanny pack for the last session.
Did it all work? Here's hoping. I had another six month scan today and am praying for the all clear. It will be 16 months since surgery to remove the tumor.
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