Questions about maintenance chemo

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laurettas
laurettas Member Posts: 372
in Colorectal Cancer #1
We met with the onc yesterday and began discussing plans after this session of FOLFOX/FOLFIRI. Jake will be finished the end of October. I am probably jumping the gun because he isn't having his CT scan until next week but it doesn't sound like its results will affect his future treatment plan anyhow. So far there has been no progression that can be discerned and his CEA has dropped every month. It was at 10 two weeks ago. He has peritoneal and distant lymph involvement so don't think surgery will ever be a possibility.

So, now for my questions. First, what have all of you stage four people gone to after your first six months of treatments? What determined the decisions? Did you stay on two week routines or go to a less frequent regimen?

What the onc tossed out was 5FU and erbitux. Don't know how often but I went eewwww at the thought of the pump every two weeks! Plus Jake isn't getting any more Erbitux yet after three weeks because he is still too broken out. So, I don't think he can tolerate that more than every three weeks or so anyhow. I am leaning toward three week intervals, can you tell?!

Appreciate any comments and suggestions any of you may have--I know that for some of you it's been a long time since you have been at this point--hallelujah--but I hope you can remember your regimen at the time and why it was chosen. Thanks!!

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
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    Hi L:)
    My story is generally not like anyone else's here as far as the routine goes....I'm a little different, LOL!

    I just finished up 6-months of Folfiri at the end of April. My onc has me on NO maintenance chemo. Of course, I had lung surgery and 30x IMRT radiation with the 5-fu pump in conjuction with that for six straights week during radiation treatments to combine the efficiency for the max dose.

    My 1st scan after that was CLEAR. I just did #2 yesterday (the scan not the other:) and I get the results in a couple of hours, but I'm thinking it is looking good.

    Back when I was doing Folfox, I was on no maintenance chemo either. I did the hard Oxy and Xeloda and Avastin. After my immune system was compromised by the Oxy, I could no longer get my platelets up to an acceptable level to do the Oxy regularly and my treatments kept extending longer and longer, until it was discontinued.

    Scans showed good then...no maintenance chemo.

    First lung surgery was done via Da Vinci robot and were benign. Unfortunately hidde behind those were malingant mCRC cells. Cost me 5 more wedge resections and 2 ribs.

    We did 2 Folfiris and then the rads came, so we stopped big gun chemo and did the rads w/5-fu. When that wrapped, we went back to the Folfiri. I had good response the tumors were gone. And as I said, no maintenance chemo.

    But the X-factor is the fact that your husband has not had surgery, so that's a big game changer as you know. I would imagine that 5-fu or Xeloda will be a prerequiste with Erbitux every 3-weeks if he can take that. I'm not sure about Avastin, but that chokes off blood supply to the tumor, so maybe your onc will consider this at some point.

    I did not start off as a stage 4, but moved up in class until I finally got there through metastasis. 7-years, 51 rounds of chemo, 55 rounds of radiation, 3 stereotactic radiation tx, 4 major surgeries........and I'm still here to talk about it......and no maintenance chemo in the pipeline.

    My onc still thinks I'm curative and I'm just goofy enough to go along with him. After 7-years, you'd figure we'd get it right....and maybe this time we did.

    This may not be of any help to you, but I'm trying. Somewhere on the menu, your hub will probably get 5fu or Xeloda (depending on stock), Erbitux, possibly Avastin.

    Here's hoping that one of those combinations keep things stable for you and yours for a very long time:)

    -Craig
  • westie66
    westie66 Member Posts: 642
    #3
    Options
    Sundanceh said:

    Hi L:)
    My story is generally not like anyone else's here as far as the routine goes....I'm a little different, LOL!

    I just finished up 6-months of Folfiri at the end of April. My onc has me on NO maintenance chemo. Of course, I had lung surgery and 30x IMRT radiation with the 5-fu pump in conjuction with that for six straights week during radiation treatments to combine the efficiency for the max dose.

    My 1st scan after that was CLEAR. I just did #2 yesterday (the scan not the other:) and I get the results in a couple of hours, but I'm thinking it is looking good.

    Back when I was doing Folfox, I was on no maintenance chemo either. I did the hard Oxy and Xeloda and Avastin. After my immune system was compromised by the Oxy, I could no longer get my platelets up to an acceptable level to do the Oxy regularly and my treatments kept extending longer and longer, until it was discontinued.

    Scans showed good then...no maintenance chemo.

    First lung surgery was done via Da Vinci robot and were benign. Unfortunately hidde behind those were malingant mCRC cells. Cost me 5 more wedge resections and 2 ribs.

    We did 2 Folfiris and then the rads came, so we stopped big gun chemo and did the rads w/5-fu. When that wrapped, we went back to the Folfiri. I had good response the tumors were gone. And as I said, no maintenance chemo.

    But the X-factor is the fact that your husband has not had surgery, so that's a big game changer as you know. I would imagine that 5-fu or Xeloda will be a prerequiste with Erbitux every 3-weeks if he can take that. I'm not sure about Avastin, but that chokes off blood supply to the tumor, so maybe your onc will consider this at some point.

    I did not start off as a stage 4, but moved up in class until I finally got there through metastasis. 7-years, 51 rounds of chemo, 55 rounds of radiation, 3 stereotactic radiation tx, 4 major surgeries........and I'm still here to talk about it......and no maintenance chemo in the pipeline.

    My onc still thinks I'm curative and I'm just goofy enough to go along with him. After 7-years, you'd figure we'd get it right....and maybe this time we did.

    This may not be of any help to you, but I'm trying. Somewhere on the menu, your hub will probably get 5fu or Xeloda (depending on stock), Erbitux, possibly Avastin.

    Here's hoping that one of those combinations keep things stable for you and yours for a very long time:)

    -Craig

    Peritoneum Cancer
    Hi: There is surgery available for peritoneum cancer (I see that there has been metatasis there) called peritoneum stripping followed by a procedure called HIPEC whereby the chemo drugs are swished directly into the peritoneal cavity. I have peritoneal cancer from gallbladder cancer. My chemo regime is folfoxfiri - oxaliplatin + irenotecan + 5FU pump for 42 hrs - and it seems to have stabilized the peritoneal cancer and even reduced the size of some of the 5 nodules I have. It is a relatively new treatment here in Canada and something you might check out for maintenance alth0ugh it is a tough one. I am being prepared (perhaps) for the peritoneal stripping surgery.
    Cheryl
  • laurettas
    laurettas Member Posts: 372
    #4
    Options
    westie66 said:

    Peritoneum Cancer
    Hi: There is surgery available for peritoneum cancer (I see that there has been metatasis there) called peritoneum stripping followed by a procedure called HIPEC whereby the chemo drugs are swished directly into the peritoneal cavity. I have peritoneal cancer from gallbladder cancer. My chemo regime is folfoxfiri - oxaliplatin + irenotecan + 5FU pump for 42 hrs - and it seems to have stabilized the peritoneal cancer and even reduced the size of some of the 5 nodules I have. It is a relatively new treatment here in Canada and something you might check out for maintenance alth0ugh it is a tough one. I am being prepared (perhaps) for the peritoneal stripping surgery.
    Cheryl

    Thanks, Cheryl
    we are aware of HIPEC but in my research they will not do it if there is spread anywhere else. Jake has lymph node involvement as far away as his neck so don't think they would accept him as a candidate unfortunately. He also has innumerable mets to the peritoneum. Those that are large enough to detect on the scans are shrinking but who knows about the smaller ones, which are many.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    Options
    Understand
    I understand your situation. I hope that you can have a good, frank discussion with your oncologist about options. I just posted that I am going to have a 'chemo break', which I guess might be one option ('stop-start' chemo) - can give some relief. Monitor through scans. Once I was on Xeloda + Avastin as maintenance chemo -- gave me a lot more flexibility (pills away from hospital, Avastin drip at hospital every 3 weeks). It depends what chemo 'cocktail' is best for him tho of course. I strive for the best treatment option but I am at the stage where quality of life is also very important to me. My oncologist has supported me doing things like postponing a chemo treatment for 1-2 weeks so I can take a trip to see loved ones, etc. Congratulations to you both for having finished 6 months of chemo (wow!). Wishing you all the best for the next stage....

    Tara
  • laurettas
    laurettas Member Posts: 372
    #6
    Options
    Sundanceh said:

    Hi L:)
    My story is generally not like anyone else's here as far as the routine goes....I'm a little different, LOL!

    I just finished up 6-months of Folfiri at the end of April. My onc has me on NO maintenance chemo. Of course, I had lung surgery and 30x IMRT radiation with the 5-fu pump in conjuction with that for six straights week during radiation treatments to combine the efficiency for the max dose.

    My 1st scan after that was CLEAR. I just did #2 yesterday (the scan not the other:) and I get the results in a couple of hours, but I'm thinking it is looking good.

    Back when I was doing Folfox, I was on no maintenance chemo either. I did the hard Oxy and Xeloda and Avastin. After my immune system was compromised by the Oxy, I could no longer get my platelets up to an acceptable level to do the Oxy regularly and my treatments kept extending longer and longer, until it was discontinued.

    Scans showed good then...no maintenance chemo.

    First lung surgery was done via Da Vinci robot and were benign. Unfortunately hidde behind those were malingant mCRC cells. Cost me 5 more wedge resections and 2 ribs.

    We did 2 Folfiris and then the rads came, so we stopped big gun chemo and did the rads w/5-fu. When that wrapped, we went back to the Folfiri. I had good response the tumors were gone. And as I said, no maintenance chemo.

    But the X-factor is the fact that your husband has not had surgery, so that's a big game changer as you know. I would imagine that 5-fu or Xeloda will be a prerequiste with Erbitux every 3-weeks if he can take that. I'm not sure about Avastin, but that chokes off blood supply to the tumor, so maybe your onc will consider this at some point.

    I did not start off as a stage 4, but moved up in class until I finally got there through metastasis. 7-years, 51 rounds of chemo, 55 rounds of radiation, 3 stereotactic radiation tx, 4 major surgeries........and I'm still here to talk about it......and no maintenance chemo in the pipeline.

    My onc still thinks I'm curative and I'm just goofy enough to go along with him. After 7-years, you'd figure we'd get it right....and maybe this time we did.

    This may not be of any help to you, but I'm trying. Somewhere on the menu, your hub will probably get 5fu or Xeloda (depending on stock), Erbitux, possibly Avastin.

    Here's hoping that one of those combinations keep things stable for you and yours for a very long time:)

    -Craig

    Hi Craig
    thanks for all the info! Just FYI, my husband did have surgery to remove the tumor in his colon. It has no cancer in it now, just all those little guys running around in the rest of his body. He also used Avastin for a few months but got a massive blood clot in a varicose vein so had to stop that after two months. He is now on Lovenox shots every day forever. Erbitux is OK but he broke out so much after the second shot that he still is not back on it. I think we might be able to manage things better now and stay on top of the rash. Head and Shoulders seemed to really help in that department plus we have an antibiotic for him to take as well.
  • laurettas
    laurettas Member Posts: 372
    #7
    Options
    taraHK said:

    Understand
    I understand your situation. I hope that you can have a good, frank discussion with your oncologist about options. I just posted that I am going to have a 'chemo break', which I guess might be one option ('stop-start' chemo) - can give some relief. Monitor through scans. Once I was on Xeloda + Avastin as maintenance chemo -- gave me a lot more flexibility (pills away from hospital, Avastin drip at hospital every 3 weeks). It depends what chemo 'cocktail' is best for him tho of course. I strive for the best treatment option but I am at the stage where quality of life is also very important to me. My oncologist has supported me doing things like postponing a chemo treatment for 1-2 weeks so I can take a trip to see loved ones, etc. Congratulations to you both for having finished 6 months of chemo (wow!). Wishing you all the best for the next stage....

    Tara

    Thanks, Tara
    for the encouragement. We don't know exactly WHAT is working for Jake right now since his CEA gets lower no matter what he is taking. Maybe it is the 5FU, who knows?! That is the only thing he has stayed on for over three months because he keeps having issues with the other drugs.

    As long as you have been dealing with this, I certainly understand why you would want a break! At first our onc was talking about stopping everything after the first six months and waiting to see what happened. This last time, however, he talked about maintenance chemo instead. He said that he had been reading up on signet ring cell cancer, which is what Jake has, so maybe he changed his mind. Who knows!

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