OK, here's the chemo deal...

Options
Patrusha
Patrusha Member Posts: 487
edited March 2014 in Colorectal Cancer #1
True to my word, my husband and I sat down and talked with two very nice oncologists at the University of Michignn Comprehensive Cancer Center today. As you all know, all the research so far says chemo is not recommended for Stage II colon cancer, especially like mine with no lymph nodes involved (out of 14 tested).

The oncs told us that people with my path report usually reach the 5-year mark 89% of the time with surgery only. However, they pointed out, there are those 11% who relapse.

U-M is taking part in a study of Stage II colon cancer folks with no lymph node involvement to see if they can predict whose tumors indicate a likely relapse. It is part of a nationwide study of more than 3,600 survivors, only 36 of us from U-M. They follow us like puppy dogs for 10 years.

Here's the deal: They take a piece of your tumor and send it to a special lab where they'll evaluate two tumor markers: 18q LOH and microsatellite instability (MSI), whatever the heck that all is.

Supposedly these marker evaluations will place you in a group, either low-risk for tumor reoccurrence or high-risk for tumor reoccurence. If you are deemed low-risk you will have no chemo but participate in all of the follow-up office visits and tests they would normally do anyway, except they follow you for 10 years.

If you are deemed high-risk for reocurrence they you will be put in one of two "arms". Arm A is a standard two-day regimen of Folfox given on days 1 and 2, every two weeks for a total of (12) two-week cycles.

If you are placed in Arm B you'll get the same Folfox regimen followed up with Avastin on day 1 every two weeks.

I was intrigued by the idea of having my tumor tested to see if they can truly predict who is low-risk and who is high-risk. I signed up. I am of the general feeling that I will be deemed low-risk (ever the optimist) and placed in the control group. However, should they deem me high risk I am ready to undertake the chemo (while rebuilding my immune system with the vitamins and minerals I have already started taking). While they made it clear that I shouldn't sign on the dotted line unless I clearly would be willing to do the chemo (and you're randomly assigned into one of the two regimens), they also said you can opt out anytime. I figured I have nothing to lose... except maybe some hair if I get in Arm A or B. Like I said, I hope I am in the control group.

I'm also having part of my tumor sent off for genetic testing. Get this: they said my crummy primary insurance insists I get authorization for this testing. My secondary will cover it; I just need to get a referral from my secondary provider.

The oncs assurede me that all the records for the study and the genetic testing are strictly confidential and would not be released to my insurer unless I signed a release (which I did not and won't). I am not in fear of any problems arising with my job because of this as I feel pretty secure where I am. However, I want to know if there is a genetic component that my kids, siblings and cousins should know about.

So that's it for now. My tumor goes off Monday in two different directions. I'll talk to the oncologists on Aug 14 to find out what group they would place me in and then meet with them on Aug 18 for the first blood tests, etc...

Another piece goes out for testing for the genetics and I am told that takes at least six weeks. That's fine, cuz the first appointment for a new patient of the geneticist is late October anyway!

Oh, and did I tell you? My CEA, even before the surgery, was only 1.5! Perhaps CEA isn't going to be a reliable marker for me, eh?

So what do you guys think? Can you give me the lowdown on these two treatments? For either Arm A or Arm B the Folfox regimen is Oxaliplatin 85 mg/m2 IV Day 1; Leucovorin 400 mg/m2 IV Day 1; 5-FU 400 mg/m2 IV bolus Day 1; 5-FU 2.4 gm/m2 continuous IV infusion over 46 hours (Day 1 and Day 2). If you are in Arm B you also receive 5 mg/kg Avastin (bevacizumab) via IV on Day 1 as well.

So what do you guys think? I know, it's long. Thanks for reading this whole thing. Any input is appreciated!

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Options
    Hi Patrusha,

    I think it is a good plan. As far as CEA, per my mother oncologist CEA does not mean anything unless it is too high. My mother's CEA was very low even before her surgery. She also is stage II.

    Please do let us know what comes out of your testing.

    Best wishes, Eleonora
  • vinny3
    vinny3 Member Posts: 928 Member
    #3
    Options
    It sounds like a wonderful opportunity. There are studies indicating that microsatellite instability is associated with a higher risk of recurrance. I don't know about the other. The chemo I am doing is the same as B. It is tolerable so far although I don't like the numb feeling in the fingertips. Although tolerable, as I have indicated before, there are times when I think of quitting it. The best would be if you come out with low risk, then there would be no question, for me, that I would not do any chemo.

    Good Luck in making your decision. You can access abstract summaries of studies by going to PubMed (Entrez Pubmed) and then putting keywords in like microsatellite instability.

    ****
  • goldfinch
    goldfinch Member Posts: 735
    #4
    Options
    Sounds like a plan. Here's to you being in the low risk group!
    Mary
  • jerseysue
    jerseysue Member Posts: 624 Member
    #5
    Options
    Plan A- will make you tired after your infusion for a few days. Will make your fingertips and toe tips go numb. May thin out your hair.

    Plan B - I didn't have any side effects with Avastin that I know of.

    I hope that you are in the low risk and don't have to deal with the chemo. I think chemo does more damage to our other organs then we know about. Lots of luck and keep us posted.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    Options
    I think this whole thing is sooooo encouraging! Colorectal cancer was, well, not one of the 'spoken about' cancers...in polite company. Stage II is soooo...on the fence. Thank you for being a pioneer! And many other FUTURE beast fighters, if they knew, would thank you as well.
    It's things like this that have made breast cancer chemo morph into it's 3rd generation...each time a little kinder, gentler.
    "When you are up to your arse in aligators, it's hard to remember the goal was to drain the swamp"...too many cancers, so little time...sigh

    BIG HUGS to a VERY brave soldier!!!!!

    Kathi
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #7
    Options
    Patrusha -

    I think this trial sounds like a great opportunity. Either you are deemed low risk for recurrence (what a comfort that would be) or you get chemo and CRC chemo is not all that bad. Sounds like this trial is aimed at determining if Avastin can reduce recurrence among patients with a higher liklihood of recurrence - Avastin seems to have almost no negative side effects in terms of how you feel - in theory it can raise blood pressure and cause bleeds if surgery is done - but I never had any problems with it.

    Oxaliplatin isn't exactly fun, but not like the chemo horror stories you may have seen in the media.

    Here's hoping you are part of the low risk group, but either way this sounds like a very good deal.

    Take care,
    Betsy
  • Patrusha
    Patrusha Member Posts: 487
    #8
    Options
    Thanks for the replies all. I got FOOD POISONING on my first real night "out" since surgery and have been vomiting and having diarrhea all weekend! Haven't been able to get to the computer.

    I'll know on the 14th of August what group they put me in so I'll be sure and let you know. I'm with Vinny... if they call me low-risk I wouldn't even think og doing chemo. If they say high risk I'd feel more like a stage 2.5 and that might push me into it.

    I still want to do naturopathic stuff, too, but it is takinga long time to find a doc and I am sure it will be money out of my pocket that we don't have right now....
  • nanuk
    nanuk Member Posts: 1,358 Member
    #9
    Options
    Patrusha said:

    Thanks for the replies all. I got FOOD POISONING on my first real night "out" since surgery and have been vomiting and having diarrhea all weekend! Haven't been able to get to the computer.

    I'll know on the 14th of August what group they put me in so I'll be sure and let you know. I'm with Vinny... if they call me low-risk I wouldn't even think og doing chemo. If they say high risk I'd feel more like a stage 2.5 and that might push me into it.

    I still want to do naturopathic stuff, too, but it is takinga long time to find a doc and I am sure it will be money out of my pocket that we don't have right now....

    Parrusha: just remember that you are a trial subject, and not a patient. The maddening thing about this disease is that it is microscopic, and often can't be seen with existing equipment/tests.
    If your cancer is going to spread, it probably will regardless of whether or not your participate in the study. I'm not sure any of thier chemo works. Cancer is a result of a compromised immune system, and/or diet-(my opinion) Strengthen your immune system. Bud

Discussion Boards