Cancer Spreads with Chemo?

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  • kimby
    kimby Member Posts: 797
    Spread on chemo
    Well, I'm one of THOSE. I'm chemo resistant, meaning that my canzer spread while on chemo. First on folfox, then on folfori w/erbitux. We are now trying mitomycin, xeloda and avastin. I am very hopeful that this will work, but I'd say 'cautiously optomistic' is more accurate. If you look at the list of fda approved drugs for this disease, well, I'm out of options here.

    I'm in trials, too and having radiation to my inoperable liver. We are quitting yet. Now that my celiac lymph nodes are involved I have fewer options. Just need a good chemo (*good* chemo? LOL) cocktail to get the job done!

    Kimby
  • Shayenne
    Shayenne Member Posts: 2,342
    kimby said:

    Spread on chemo
    Well, I'm one of THOSE. I'm chemo resistant, meaning that my canzer spread while on chemo. First on folfox, then on folfori w/erbitux. We are now trying mitomycin, xeloda and avastin. I am very hopeful that this will work, but I'd say 'cautiously optomistic' is more accurate. If you look at the list of fda approved drugs for this disease, well, I'm out of options here.

    I'm in trials, too and having radiation to my inoperable liver. We are quitting yet. Now that my celiac lymph nodes are involved I have fewer options. Just need a good chemo (*good* chemo? LOL) cocktail to get the job done!

    Kimby

    But....
    I wonder if something didn't work the first time around, like Folfox, what if a second go did the trick? just to keep on the beast anyway! have you gotten other opinions on your liver if it's inoperable or not? they never mentioned if my liver was or not, that scares me.

    You are so in my prayers all the time kimby, I hope this round does do the trick, and they do find something to get this cancer already for you!

    Hugss!
    ~Donna
  • kimby
    kimby Member Posts: 797
    Shayenne said:

    But....
    I wonder if something didn't work the first time around, like Folfox, what if a second go did the trick? just to keep on the beast anyway! have you gotten other opinions on your liver if it's inoperable or not? they never mentioned if my liver was or not, that scares me.

    You are so in my prayers all the time kimby, I hope this round does do the trick, and they do find something to get this cancer already for you!

    Hugss!
    ~Donna

    2nd chances
    It isn't that folfox and folfori didn't shrink the tumors (which they didn't), it's that my canzer spread during chemo. There are no 2nd chances really. Once a chemo cocktail fails you don't go back to it.

    I have gotten several opinions on my liver mets and actually convinced my surgeon that I was a good candidate for a 2 stage, very complicated resection. It was he who found the celiac lymph node mets. No, with that involvement my liver isn't resectable. I need a systemic chemo to work before anyone will resect.

    Folfori is very, very effective for most everyone. You are in good hands and should expect a good prognosis! I am just exceptional! LOL

    Kimby
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    lisa42 said:

    wishing everyone well & having an EKG
    Hi, Everyone,
    Beth, I wish you well on your PET scan results. I definitely know firsthand how hard and awful that waiting is! I will have a scan myself in about another 3-1/2 weeks & am wondering if I'll have results that are better or are the same. My last CT scan the day before Thanksgiving, I had been on chemo for almost 3 months and my lung mets showed that they were "stable". That wasn't good enough for me- so I pray and hope after 3/1-2 more months of chemo (by the time of my scan mid March)that it will all be gone this time!!

    I have something else going on too. I have to get an EKG tomorrow morning. After having had to give myself neupogen shots 3 days in a row this past Wed-Fri, I had some symptoms Fri and Sat that I was just told today by my onology nurse (because I just told her about them today), that they weren't "normal" side effects or symptoms of neupogen. I had read about people having bone pain & also read that sometimes the pain can concentrate in the sternum. Well, with this in mind, I just assumed that my pains were related to the neupogen. About 30 min. after giving myself the 3rd shot on Friday, I got a gripping pain in my sternum that radiated around to my spine and down to my hips. It lasted about a minute & I had it 5 or 6 times over Fri-Sat. I haven't had it happen since Saturday, but my oncology nurse talked to the Dr. and said they'd all feel better if I got it checked out just in case.
    Great- this is all I need! Hopefully, it's nothing.
    I did check my blood pressure (I have a blood pressure machine) and it was a bit high, so I popped another Atenolol (which I take 50 mg./day already) and an aspirin in case anything is actually going on w/ my heart or arteries.

    It's always something when you have this beast, isn't it??

    Hope you do well!

    praying
    Hi Lisa,
    I am sorry to hear about the pain you were in over the weekend. I'm glad they are checking things out. I pray that it is something that will just pass. I will keep you in my prayers for your scan too.
    Kathleen
    (I read that you are a teacher.... I was thinking you look like a teacher... I am a teacher too.)
  • msccolon
    msccolon Member Posts: 1,917 Member
    kimby said:

    Spread on chemo
    Well, I'm one of THOSE. I'm chemo resistant, meaning that my canzer spread while on chemo. First on folfox, then on folfori w/erbitux. We are now trying mitomycin, xeloda and avastin. I am very hopeful that this will work, but I'd say 'cautiously optomistic' is more accurate. If you look at the list of fda approved drugs for this disease, well, I'm out of options here.

    I'm in trials, too and having radiation to my inoperable liver. We are quitting yet. Now that my celiac lymph nodes are involved I have fewer options. Just need a good chemo (*good* chemo? LOL) cocktail to get the job done!

    Kimby

    one of THOSE
    that sucks! And the worst of it is just what you said "If you look at the list of fda approved drugs for this disease, well, I'm out of options here". That's what sucks so much about this particular kind of cancer and what's so hard to get people to understand! It's so hard to treat that the drugs that DO work are so toxic, and then the choices are so limited! That's why it's so important to participate in trials when available; to help those that come after us! I pray that if my children have to deal with this down the road that what they have to fight this beast is so much better than what we experience! I continue to pray for you! I was wondering why you were getting mytomycin... I remember that is what was going to be infused during HIPEC if I had gotten it done back in 2006, and I remember saying it was an older chemotherapy drug. I actually haven't asked Dr. Levine what chemical will be used when I go in for the IPHC in May (same procedure, they're using a different name now), but figure it's probably going to be the mytomycin. I will find out before I head in. How do you fare with it?
    mary
  • lisa42
    lisa42 Member Posts: 3,625 Member

    praying
    Hi Lisa,
    I am sorry to hear about the pain you were in over the weekend. I'm glad they are checking things out. I pray that it is something that will just pass. I will keep you in my prayers for your scan too.
    Kathleen
    (I read that you are a teacher.... I was thinking you look like a teacher... I am a teacher too.)

    Kathleen
    Hi Kathleen,

    How funny that I "look" like a teacher! (I've been thinking the many last times I've seen my picture that it's a bad one and I need a different picture- just haven't gotten anything more recent, though).

    Anyhow, I've been teaching since 1989. I taught 6th for 2 yrs, then moved south an hour when I got married in 91. Couldn't find a full time teaching position for 2 yrs, so I subbed in K-8. Then, got a job teaching 4th gr, which I did for 3 yrs until taking off to have a baby. Since going back after that, I taught 1st gr. for 6 yrs & then moved up to 5th grade for the last 5 yrs. I literally was diagnosed w/ cancer 2 weeks before the new school year began in Aug 2007. I had my classroom pretty much ready to go, but then my principal and I had to scramble to find a sub for me. At that time, I thought I'd only be out about 4 months- that was before I knew it had spread to liver and lungs. Needless to say, I haven't been back. It was a sad day for me when I went back the last week of school that year to clean out my classroom and bring everything home. I don't know when, if ever, I'll go back again. I know someone who lives near me who has stage III rectal cancer and just finished chemo & just went back full time. So, I know some people do work/teach while dealing with this. I don't know if that will ever be me, though. I was off my chemo the first time just 4 months before having to start it all back up again. I'm on STRS disability through my teacher's retirement fund right now (basically getting my retirement early). I don't know yet how that would work if I were to go back. I'm told I'd qualify for my retirement benefits again if I went back and could put in 3 full time years. My worry is what if I went off the disability, then had a recurrence again before the 3 yrs- would I then be qualified to get nothing? I don't qualify for state disability, as we don't put into the system. Right now, on the STRS disability, I'm getting 80% of my salary (50% for me & an additional 10% for each of my 3 kids). I've had many people suggest teaching half-time (job-sharing a class), but then I'd be working plus getting a lot less money than I am currently! I don't feel guilty about that, though, because it's legit & because it's my own retirement account!

    Lots of rambling here, sorry- I just thought you'd be able to relate as a teacher.
    Do you teach in the public school system? Obviously, you're not teaching right now, since I know you're here in L.A. and live in Hawaii. What have you taught?

    Blessings to you and your husband!
    Lisa
  • dixchi
    dixchi Member Posts: 431
    msccolon said:

    one of THOSE
    that sucks! And the worst of it is just what you said "If you look at the list of fda approved drugs for this disease, well, I'm out of options here". That's what sucks so much about this particular kind of cancer and what's so hard to get people to understand! It's so hard to treat that the drugs that DO work are so toxic, and then the choices are so limited! That's why it's so important to participate in trials when available; to help those that come after us! I pray that if my children have to deal with this down the road that what they have to fight this beast is so much better than what we experience! I continue to pray for you! I was wondering why you were getting mytomycin... I remember that is what was going to be infused during HIPEC if I had gotten it done back in 2006, and I remember saying it was an older chemotherapy drug. I actually haven't asked Dr. Levine what chemical will be used when I go in for the IPHC in May (same procedure, they're using a different name now), but figure it's probably going to be the mytomycin. I will find out before I head in. How do you fare with it?
    mary

    Lisa, Kimby, Msccolon and Beth
    ....all of you are true courageous survivors of this shaggy monster.....
    i admire all of you for your determination to win.....you are an
    inspiration to me and give me the motivation to keep on going....
    each time you tell us something about your journey you are passing
    on your courage to the rest of us. God bless you.

    Hugs,
    Barbara
  • kimby
    kimby Member Posts: 797
    msccolon said:

    one of THOSE
    that sucks! And the worst of it is just what you said "If you look at the list of fda approved drugs for this disease, well, I'm out of options here". That's what sucks so much about this particular kind of cancer and what's so hard to get people to understand! It's so hard to treat that the drugs that DO work are so toxic, and then the choices are so limited! That's why it's so important to participate in trials when available; to help those that come after us! I pray that if my children have to deal with this down the road that what they have to fight this beast is so much better than what we experience! I continue to pray for you! I was wondering why you were getting mytomycin... I remember that is what was going to be infused during HIPEC if I had gotten it done back in 2006, and I remember saying it was an older chemotherapy drug. I actually haven't asked Dr. Levine what chemical will be used when I go in for the IPHC in May (same procedure, they're using a different name now), but figure it's probably going to be the mytomycin. I will find out before I head in. How do you fare with it?
    mary

    Mitomycin
    Hi Mary,

    Sorry to hear you need another procedure (ick!) but I'm so grateful that it's there for you. Amazing what we strive for and are happy about in canzerWorld! Mitomycin is an old drug. It's been around a long time and I don't think it's used much anymore but since the newer, "bigger & better" drugs haven't worked for me we decided to give it a try. I believe it was most often used for rectal/anal canzer, not so much for colon.

    Due to the possiblility of it stripping the bone marrow I only get the mitomycin infusion every 6wks, avastin every 3wks and xeloda 14days on - 7days off. That being said, I have only had one mitomycin infusion so far. I didn't really have any side effects from mitomycin but with premeds, who knows? The avastin only infusion and xeloda have given some side effects but nothing really from the mitomycin. Now let's see if it works!

    Good Luck and keep us informed!

    Kimby
  • ron50
    ron50 Member Posts: 1,723 Member
    long term effects of chemo
    Last year I happened to have a job to do near my old oncology unit. I dropped in to see my oncologist and friend John. During the conversation I asked him what he thought the long term results of my chemo were. His reply was "it saved your life, I don't believe it has long term side effects". I said what about all the health issues I've had since. He suggested that's life ,you were probably destined to get them anyway. He has always been a straight shooter and I feel he truly believes what he says. Right from the start he made no promises about chemo. He said it will either work or I'll have mets from the soles of my feet to the roots of my hair. Fortunately for me , it worked. Cheers ron.