Done with chemo... what happens next?? scans? testing?

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mark440
mark440 Member Posts: 63
edited March 2014 in Colorectal Cancer #1
Just finished 6 months 12 treatments of 5/fu--lucevorian---oxailplatinum dx with stage 3 upper third rectal cancer.. pt2 pn1 mo cleveland clinic will do a sigmoid on the 9th. I had 65 lymph nodes removed 3 were cancerous a foot of colon removed and the tumor was removed back in Jan.. Now what?? my Onc. is horrible she argues with me about everything, I told her of first bite jaw spasms on oxy and she would say I never heard of that! I told her about the intense pain in my hands and feet she says it shouldnt be that way... I live in a very small town in northern michigan so my choices of oncologist are none... my question is when do I get a pet scan, ct scan , colonoscopy, bloodwork??? how do I know I am beating this ??? Im very confused about what to expect next.. All my time and effort has been concentrated on comp[leteing the 6 months of chemo. anytime tables or schedules on tests any info will be greatly appreciated!!! Thanks my friends! Do I keep my port?? how long??

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  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #2
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    Hi Mark, Congratulations on

    Hi Mark, Congratulations on completing the 12 rounds of chemo - it's not an easy thing to do! My partner, Rick, also just completed 12 and we had these very same questions. One initial issue was that three oncs. had three different opinions, but with the help on our on-line friends here and a bit of research, we ended up trusting our Mass. General doctor's decision, which is as follows:

    1) Pet/CT no sooner than 6 weeks after last chemo treatment (also backed up by research by Stephen Curley of MD Anderson Center) - otherwise there's a good chance of it showing a false positive, and we certainly don't want that! :-)

    2) A CT scan and blood work every three months after the Pet/CT scan for monitoring. After two years, the scans will taper to every 6 months.

    3) A colonoscopy a year after the initial one was done. In Rick's case, it will be this December.

    4) We were told that he should keep the port in, no time table for it's removal. He'll need to have it flushed every 6 weeks or so.

    And in regard to the jaw pain, it seems to be quite normal according to many people on the board. After chemo treatment, Rick would have intense pain on the first bite of food. This lasted for about 4 days then eased up as the week went along. And his fingers and bottoms of his feet are numb and tingly, which is also normal, unfortunately. He was told that it could take a year or more for the side effects to subside. I'm sure that others out here can elaborate more on the topic.

    I hope this helps a bit. Best wishes always, Cynthia
  • dmdwins
    dmdwins Member Posts: 454 Member
    #3
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    LivinginNH said:

    Hi Mark, Congratulations on

    Hi Mark, Congratulations on completing the 12 rounds of chemo - it's not an easy thing to do! My partner, Rick, also just completed 12 and we had these very same questions. One initial issue was that three oncs. had three different opinions, but with the help on our on-line friends here and a bit of research, we ended up trusting our Mass. General doctor's decision, which is as follows:

    1) Pet/CT no sooner than 6 weeks after last chemo treatment (also backed up by research by Stephen Curley of MD Anderson Center) - otherwise there's a good chance of it showing a false positive, and we certainly don't want that! :-)

    2) A CT scan and blood work every three months after the Pet/CT scan for monitoring. After two years, the scans will taper to every 6 months.

    3) A colonoscopy a year after the initial one was done. In Rick's case, it will be this December.

    4) We were told that he should keep the port in, no time table for it's removal. He'll need to have it flushed every 6 weeks or so.

    And in regard to the jaw pain, it seems to be quite normal according to many people on the board. After chemo treatment, Rick would have intense pain on the first bite of food. This lasted for about 4 days then eased up as the week went along. And his fingers and bottoms of his feet are numb and tingly, which is also normal, unfortunately. He was told that it could take a year or more for the side effects to subside. I'm sure that others out here can elaborate more on the topic.

    I hope this helps a bit. Best wishes always, Cynthia

    Cleveland Clinic
    Hi Mark...just a suggestion but since I believe some of your care has been at the Cleveland Clinic have them outline your post chemo treatment for your "not so nice oncologist" back home so that both you and she will know what the standard of care should be.

    Smiles,
    Dawn
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #4
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    Time table
    Hi Mark
    I live in a small town too, but am lucky in that my onc is very good,up on the latest, and sends to James cancer center for second opinion when asked. I am now 6 years out. The first two years I had cea levels done every 3 months, a CT once a year, and colonoscopy yearly. I am now on cea every 6 months, scope every 2 years. I am getting a CT every 6 months now because some "spots" are showing on liver, but they showed some disappeared and the largest shrunk by half on my last scan. I kept my port for 4 years, because of the high chance of reoccurrence in stage 4, just make sure it is flushed out every 6 weeks. Hope this helps some, and good luck to you!
    Pam
  • HollyID
    HollyID Member Posts: 946 Member
    #5
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    Hi Mark...
    I've decided to keep my port just in case. It doesn't hurt and I don't even know it's there until they do flush it. I get it flushed about every six weeks.

    I have a CEA drawn every 3 months for 2+ years then every six months for 3 to 5 years.

    CT scan once a year for up to 5 years unless the CEA comes back funky .

    I'll have a colonoscopy this November (which is a year from the original one) and then if this scope is clear, I think I get another in three years after this one. If there are polyps, he might change it to every year. Treatments say if there is advanced adenoma, they'll repeat in 1 year and if no advanced adenoma, they repeat in 3 years and then every 5 years.

    These guidelines were based on the Practice guidelines in oncology for colon cancer. My onc gave it to me when I was done with chemo as well. They pretty much follows what all onclogists do, so they say. :)
  • grammadebbie
    grammadebbie Member Posts: 464
    #6
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    Hi Mark,Everyone has pretty
    Hi Mark,

    Everyone has pretty much covered the scheduling of tests, scans etc. I just wanted to address something that I experienced. I was so happy to finish my chemo (only made it thru 11 due to allergic reaction) but found myself getting depressed. I guess it happens to alot of people. For so many months we go to the chemo clinic 2 times a week and talk with the nurses and other patients. It's hard on us but we also get to be with others and are reassured by our nurses, get all our questions answered and feel a sort of comfort that everything is moving forward. Then we think it's going to be wonderful not to have to go 2 times a week. Well physically it's nice but emotionally I had a hard time. I felt lonesome and like I needed to be doing something. When you are on chemo you feel like you are fighting the battle. After chemo I felt lonely and was just waiting for something else to happen. Crazy huh! It's hard to explain but I wanted to let you know that if you start having these feelings you are not alone. I was already taking anti depressants and anti anxiety medications so just had to work thru it. I did start attending support groups and that helped. Of course this wonderful board helped me deal with my feelings also. I wish someone had told me about this before it happened to me. I think it would have helped to know that it's kind of a normal thing for some of us. Others sail right thru it....hopefully that will be your experience. Just a little heads up incase..

    Big Hugs and Prayers,

    Debbie
  • grammadebbie
    grammadebbie Member Posts: 464
    #7
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    Oops...double post

    Oops...double post
  • Steve Z
    Steve Z Member Posts: 51
    #8
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    Congrats on Finishing
    I'm 5 month from my last treatement. I had the jaw pain, I have the hand pain. My Onc had one other patient with the jaw pain and none with the hand pain. I think we're just lucky enough to be in a very small percentage of patients that experience those side effects. The jaw pain went away and the hand pain is ok as long as I don't play too much golf, don't tell my wife. I had a colonoscopy, CT, and blood work with in 3 month of finishing treatment and I'll have more blood and CT scans every 3 month and the scope annually. My suggestion about your Onc, if things are going to be spread out(1 appointment every 3 months) make the trip to the big city. The port is partly a personal decision. My Onc lead me to believe I can have it out when I want, but a reoccurence means it goes back it. I'll probably have it out this winter.

    There has been some anxiety over the last several month for me. Every ache and pain, I ask myself if it's back? Then I remember the borrito and micro brew I had the night before and I usual lean toward it not being cancer. Press on, stay strong, and keep in touch.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #9
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    Congratulations!
    Congratulations on finishing the chemo! I think the port removal is an individual thing, between the patient + the doctor. Good luck with next steps.

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