How to know if you are getting enough chemo? All of your different regimens make me wonder

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polarprincess
polarprincess Member Posts: 202 Member
edited March 2014 in Colorectal Cancer #1
For colon cancer you read that 6 months of Folfox is the standard treatment, and that seems to be generally what most colon cancer patients get. However i keep hearing my onc telling people in my cancer center that 14 treatments are the standard for colon. Where is she getting her info from? I sure have not found it on the internet. For rectal cancer, what people get seems to be all over the place, and i am constantly finding myself questioning whether or not i am getting enough chemo and i wish i could stop worrying about it. I am stage IIIa T1 with 1 node positive out of 26. Had polypectomy as they were sure it was benign, then had LAR with no residual carcinoma identified. Moderately differentiated.Rectosigmoid junction. Garden variety adenocarcinoma in a 3 cm polyp. No lymphovascular or perineural invasion noted. Mayo recommended to me 4-6 months of chemoradiation which means 6-8 cycles of folfox, and 6 weeks of radiation. The local onc said with stage IIIa she typically does not even use Folfox as they reserve that for the big cancers, but we decided to go with it anyway because of Mayo's suggestion.

I keep reading however from other sites and some here of how other people with rectal cancer in the same stage as me with same amount of nodes are getting 6 weeks radiation plus 12 cycles of fulfox. Others are getting only 3 months of treatment instead of the standard 6. So are there guidelines posted somewhere that tell the doctors what to do or is it just a guessing game? I am more than happy to be done at 8 cycles, but should i be asking for 12? If i end up with a recurrence because i didn't get enough chemo i will be so upset, but i am wondering how does a person find out?

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  • polarprincess
    polarprincess Member Posts: 202 Member
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    due to the lack of responses, can i assume that no one else wonders about this at all? When you think about it, the doctor that we choose can make the difference as to whether or not we survive this disease..and everyone must just put the utmost trust in their doctor. I guess i need to learn to do the same...
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    due to the lack of responses, can i assume that no one else wonders about this at all? When you think about it, the doctor that we choose can make the difference as to whether or not we survive this disease..and everyone must just put the utmost trust in their doctor. I guess i need to learn to do the same...

    not a lack of interest
    PolarPrincess,

    I don't think the lack of answers is that no one cares or is interested or has ever wondered what is the right amount of chemo... but no one can answer your question. Some questions you do have to ask your oncologist. I'm sure you have done that and what was his/her response? Why are you getting the amount you are getting and not less or more? How did they come up with the right dosage for you?

    For me personally, it's true, I DO trust my oncologist, who specializes in chemotherapy, 100%. She had put me on the standard chemo of 12 rounds of 5FU/Leucovorin/Oxalpilatin after the surgery for a colon resection. Since I had an abscess around the tumour and that abscess was attached to my abdominal wall, she also ordered 6 weeks of daily radiation to the abdominal wall. She told me that this would be the ideal plan for me, but what it meant was they would be bombarding me with all guns blazing. When I was on radiation, she would stop the 5Fu/Leucovorin/Oxalpilatin, but she wanted me still on chemo during radiation so put me on the oral chemo (cebatacine ). It was the combination of the oral chemo as well as the Oxalipilatin that did the damage to my feet and shins. So she did stop the Oxi after 8 months, but I did complete all 12 rounds of the 5FU/Leucovorin.

    All along, she told me to let her know when/if I had any difficulties or problems... that we could always adjust the dosage or even change the chemo if need be. The actual amount of chemo that is given is based on a a whole bunch of factors -- weight, age, state of health, reaction, side affects, etc.

    So ya... there's no one answer for everyone... nor is there any exact same solution for everyone, even if you share the same type of cancer. As I was told by my oncologist... there are standard chemo drugs for each different cancer, but depending on the type of cancer, the stage, your age, your tolerance, your health, and so many other factors, a chemotherapist comes up with a cocktail of drugs made specifically for you. A lot of times we do talk about "Oh ya, I was on those same chemos for the same length of time", but it does not mean we actually had identical treatments. You may be 105 lbs and I may be 200lbs... trust me, our dosages are going to be different ;)

    If you don't feel your oncologist is paying attention to you or you just don't click with him/her, you might want to look at changing oncs. But if you are comfortable with him/her and you were just asking a question... well the answer is, "It all depends" :)

    Huggggs,

    Cheryl
  • dorookie
    dorookie Member Posts: 1,731 Member
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    same thoughts
    Polarprincess,

    I too had the same questions as you are asking. I was told that I was NED on the day I was supposed to have my last (12th treatment of IV chemo). Needlessly to say I didnt want to do the last treatment. My partner, my sister and mom were there and I just didnt want to do it. They all asked me to go ahead and just do this last one, just to make sure, just for good measure. They asked my ONC and he said that if it were his loved one, he would be asking them to do the last treatment too. So long story short, I did it, and guess what, cancer back in 3months! So who is really to say what is the standard, or what really works. I had the thought if I didnt do the last treatment and it came back, then I would kick my butt hard, but look what happened. I am not sure I am answering your questions, just sharing with you what happened with me, and to let you know I too had the same questions. I am now on Xeloda and I am asking myself, is this enough, why didnt my ONC put me on Avastin too? I havent had to many bad side effects, so does that mean the chemo isnt working this time? I am scared, and I am really pissed off, sorry going through a really rough time now.

    Just know your not alone!
    God Bless
    Beth
  • polarprincess
    polarprincess Member Posts: 202 Member
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    thanks
    thanks for the responses. I guess what i would really like is for people to post what their dx was as far as T stage and how many lymph nodes positive, and what their regimen was so i can compare..see what everyone else got. I often wonder if they made a mistake when they changed it from a year to 6 months. Seems like the more cycles you have the more cancer it would kill, but i guess the doctors know more than we do. I know it is a different kind of cancer, but Lance Armstrong was in a pretty bad situation as far as his cancer and they were very aggressive from the get go and cured him.. why with colon cancer do they not use the most aggressive treatment from the start why do they wait until you are already stage IV and it is harder to cure you? Is it because of toxicity isuues, or just because they haven't studied it or what? In my case it is interesting because memorial Slaon kettering has this nomogram calculator where you can put in your info and it will give you what would be a very accurate 5 year and 10 year disease free survival and for me it comes up only 1 % difference if i have chemo compared to not having it. They claim this is more up to date than the current staging system..so then why on earth was chemo recommended to me then? I am going through this for a 1% benefit? Yet you read online that it offers a 15%-20% benefit with OXY as an added 7%..It all just really confuses me...
  • msccolon
    msccolon Member Posts: 1,917 Member
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    thanks
    thanks for the responses. I guess what i would really like is for people to post what their dx was as far as T stage and how many lymph nodes positive, and what their regimen was so i can compare..see what everyone else got. I often wonder if they made a mistake when they changed it from a year to 6 months. Seems like the more cycles you have the more cancer it would kill, but i guess the doctors know more than we do. I know it is a different kind of cancer, but Lance Armstrong was in a pretty bad situation as far as his cancer and they were very aggressive from the get go and cured him.. why with colon cancer do they not use the most aggressive treatment from the start why do they wait until you are already stage IV and it is harder to cure you? Is it because of toxicity isuues, or just because they haven't studied it or what? In my case it is interesting because memorial Slaon kettering has this nomogram calculator where you can put in your info and it will give you what would be a very accurate 5 year and 10 year disease free survival and for me it comes up only 1 % difference if i have chemo compared to not having it. They claim this is more up to date than the current staging system..so then why on earth was chemo recommended to me then? I am going through this for a 1% benefit? Yet you read online that it offers a 15%-20% benefit with OXY as an added 7%..It all just really confuses me...

    dx etc info
    If you look at our profiles you can get the information you are seeking. I believe the reason colon cancer is treated differently is just that it is a particularly determined beast and seems to be fairly resistent to most chemo drugs. The ones that DO work are very toxic. Plus, there just hasn't been as much research done on it as say breast cancer. We certainly have more options now than even 10 years ago, when the standard was 5FU and Leucovorin ONLY. Oxaliplatin came along and it has proven to be fairly successful against colon cancer, but we all know how toxic it can be! CPT-11 is also fairly new. Avastin has done such a good job they are now looking into using it as a first line instead of only upon recurrence and on other types of cancers. It's the reason we agree to the chemo and it's myriad of side effects; time. Time to find a cure, time to find a drug that works better, time to find drugs that better manage side effects, etc.
    mary
  • polarprincess
    polarprincess Member Posts: 202 Member
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    msccolon said:

    dx etc info
    If you look at our profiles you can get the information you are seeking. I believe the reason colon cancer is treated differently is just that it is a particularly determined beast and seems to be fairly resistent to most chemo drugs. The ones that DO work are very toxic. Plus, there just hasn't been as much research done on it as say breast cancer. We certainly have more options now than even 10 years ago, when the standard was 5FU and Leucovorin ONLY. Oxaliplatin came along and it has proven to be fairly successful against colon cancer, but we all know how toxic it can be! CPT-11 is also fairly new. Avastin has done such a good job they are now looking into using it as a first line instead of only upon recurrence and on other types of cancers. It's the reason we agree to the chemo and it's myriad of side effects; time. Time to find a cure, time to find a drug that works better, time to find drugs that better manage side effects, etc.
    mary

    tstage
    most people just put what stage they are on their profiles, but many leave out the T-stage and according to my doctors that makes a big difference in the treatment decisions.. i don't think that most people are T1 and that is why i have such a hard time finding someone to compare my story with. thanks for the info
    Dorookie.. i think alot of people do better on tha Xeloda as far as side effects.. probably because it is the leucovorin that makes the side effects worse on the FoLFOX
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    T staging not always indicative
    Hi,
    Just a comment on the T staging. Knowing what happened to me, I'd be hesitant if I were someone not taking chemo because they were "T staged" early. I was found to have NO positive lymph nodes and was given staging of "a T2, N0 rectal cancer".
    Two days later, I was given my first CT scan and numerous tumors were found in my liver and in both lungs. A biopsy proved that it was metastasized rectal cancer. When I asked how did it spread if it wasn't found in the lymph nodes, I was told that sometimes rectal cancer can spread directly via the blood stream, as major blood vessels pass from the rectum directly into the liver & that this probably happens to more people than is known. It wasn't until recently, a year and a half later, that an affected lymph node showed up on a scan (in my lungs), so it obviously spread in another way. I was obviously bumped up to an immediate stage IV. Because of this, I've worried about people I know who have had low stages and haven't had any chemo because they were thought to be safe when it's possible microscopic cancer cells are floating around their bloodstream. Not to freak anyone out, but to make you all aware of this possibility. Definitely something to discuss with your oncologists, if it's an issue.

    By the way, I did find a website called chemoregimen.com that has recommended chemos listed. One thing it doesn't mention, which I've wondered about, is how often these doses should be given. I hear of some people getting treatments weekly, some every two weeks, and some every three weeks. I wonder how they decide on that.

    Take care, everyone!
    Lisa
  • polarprincess
    polarprincess Member Posts: 202 Member
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    lisa42 said:

    T staging not always indicative
    Hi,
    Just a comment on the T staging. Knowing what happened to me, I'd be hesitant if I were someone not taking chemo because they were "T staged" early. I was found to have NO positive lymph nodes and was given staging of "a T2, N0 rectal cancer".
    Two days later, I was given my first CT scan and numerous tumors were found in my liver and in both lungs. A biopsy proved that it was metastasized rectal cancer. When I asked how did it spread if it wasn't found in the lymph nodes, I was told that sometimes rectal cancer can spread directly via the blood stream, as major blood vessels pass from the rectum directly into the liver & that this probably happens to more people than is known. It wasn't until recently, a year and a half later, that an affected lymph node showed up on a scan (in my lungs), so it obviously spread in another way. I was obviously bumped up to an immediate stage IV. Because of this, I've worried about people I know who have had low stages and haven't had any chemo because they were thought to be safe when it's possible microscopic cancer cells are floating around their bloodstream. Not to freak anyone out, but to make you all aware of this possibility. Definitely something to discuss with your oncologists, if it's an issue.

    By the way, I did find a website called chemoregimen.com that has recommended chemos listed. One thing it doesn't mention, which I've wondered about, is how often these doses should be given. I hear of some people getting treatments weekly, some every two weeks, and some every three weeks. I wonder how they decide on that.

    Take care, everyone!
    Lisa

    chemo
    yes, i know of someone on another board i visit that had a cancerous polyp- stage I, was not given any treatment and now is stage IV. Of course it happens, in about 3-10% of the cases..that is why there is no 100% cure rate. Yet, there does not seem to be any evidence that chemo in stage I has any beneficial effect, so possibly the people who are going to have the recurrences, just have adverse factors that chemo cannot take care of like a more aggressive cancer, or the lymphovascular or perineural invasions...
    Lisa 42, I am confused about something... you mention you had a T2 with no nodes, and they staged you T2 N0, but they must have had to do surgery to stage you, so how come during surgery they did not see the cancer on the liver?
    Thanks for the chemoregimen website. Will check it out.
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    didn't have rectal surgery
    To answer your question, I actually never had any surgery on my colon/rectum. My staging was done during a ultrasonic flexible sigmoidoscopy, which I had done a few days after my original colonoscopy, so they could get the staging. I don't know what they would have staged me at, had I had surgery right away. With the flex sig (also referred to as a UE- ultrasonic endoscopy), they could supposedly see through everything in that area- through the bowel wall and all around it. Not everyone gets this done because not many hospitals have the equipment to do it. As with rectal cancer (as opposed to colon cancer), radiation on the tumor prior to any surgery is fairly standard now. It was during that that my rectal tumor completely went away, which is why I never ended up having the surgery (I did have liver surgery later, but never a rectal resection). I was never officially restaged since finding out the cancer had spread- I just knew I was a stage IV because it had metastasized, but I never got another official T staging. I was going to have another UE this past Septemeber, but then I had my recurrence then and my oncologist said it was an unneccesary procedure at that time since we knew from the CT and PET scans that I needed to go back on chemo. Don't know that I agreed w/ that, but I haven't had it redone yet. The scans still show my colon and rectum free of anything, thank goodness- the recurrence was in my lungs.
  • traci43
    traci43 Member Posts: 773 Member
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    6 vs 12 months
    Polar princess - In June 2007 I was diagnosed stage IV, never really figured out the other parts, just knew it was bad. My Dr. perscribed 12 treatments (6 months) 5-FU (bolus and 46 hr. pump), oxaliplatin and avastin. It took me 10 months to totally recover and have all my blood levels back to normal. One thing you may want to consider is what if what you have is killed after 6 months, you don't want to go on treating nothing, in case God forbid, you need it again in a few years. Talk to your Dr. and get the answers you need, they're used to it. If you don't get the answers you need, go for a second opinion. It's your body and your life, you need to be comfortable with what's happening. Traci