New to all of this - Mom diagnosed Stage 4 last summer.

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Gold44
Gold44 Member Posts: 8
in Colorectal Cancer #1
Hi everyone,

To start - I have been incredibly inspired by this online colorectal community on ACS. Thank you for your wise and experienced posts regarding Stage 4 - the thoughts have given me a wealth of information.

I wanted to finally register as a member, and did so today. I'm 27, have a mom in her early 60's who was diagnosed Stage 4 last June. She had been feeling terrible with her GI system for about a year with her doc's saying it was hemorrhoids or a fissure - turned out to be totally incorrect.

CT and MRI showed a grapefruit size mass in her rectum, lungs, and liver. She was put on Folfox for 8 rounds, then started Avastin, was in the hospital last Christmas for a week b/c of a lower spine met. She developed a fistula from Avastin (the drug I can take it or leave it).

She was going ok for the last 2 months, energy, out and about, until last week when they scanned again and found that she became resistant to Folfox. A shock, which says it lightly. Again - increased growth in liver and lungs after Folfox had initially cleaned them up. They were going to do a colostomy, but that has now been pushed off.

She started round 2 of Folfiri this week and the plan is to scan in 5 weeks.

I'm not really sure to what to think, but a few questions I thought I'd put out to the group.
1. HOPE has been my new word, is there anyone here who is in a similar situation with Stage 4? What has kept you going?
2. For those in a similar predicament, what have been the advantages and disadvantages of FOLFIRI for you?

Thanks again everyone. Thought I'd introduce myself, and get moving on becoming part of this amazing/moving community.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
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    Welcome
    So very glad you have joined us, but very sorry about your Mom.

    I can't really answer your questions, but I do know from the stories of others here that being Stage 4 or having to change chemo does not mean that all is lost.

    Hoping that the new chemo does wonders for your Mom and that she will once again be feeling much better.

    Please keep us posted and continue to ask questions as more than likely someone here can offer their experience.

    Hugs,

    Marie who loves kitties
  • have2believe
    have2believe Member Posts: 134
    #3
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    Hang in there.
    Hi Gold,
    I'm so sorry to hear that she has become resistant to Folfox. I know it's hard to always be on pins and needles, especially when it comes to scan time, and finding out which drugs may or may not work.
    1. I'm also 27, and my mom was diagnosed in Nov. 2009 with stomach cancer. It's hard being a caregiver and staying strong, but you have to keep going because, as my mom says, "Time passes by all the same...it makes no difference if you spend it being happy or sad, so just make the most out it." Also, find some time to take care of yourself.
    2. My mom has been on Folfox, and she's had Irinotecan (part of Folfiri), and I believe the major side effects are nausea, neuropathy, and stomach cramps. It was her first chemo, so my mom didn't have too bad of time with it though I think diarrhea or constipation is also another side effect. You can look it up on treato.com to see what other people have said. For neuropathy, some people take l-glutamine or l-carnitene. Acupuncture has also proven to help with neuropathy.

    I hope your mom can tolerate Folfiri and that she has great success with it. Best wishes.

    Lana

    strongbecause.blogspot.com
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #4
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    Welcome
    I'm new to the board too, but glad I found it. I'm stage 4 mets-liver and I'm on Folfiri, my 5th round is this coming Wednesday. They put me on Folfiri because I already have neuropathy in my feet (for some unknown reason). She said it will cause less of that side effect than Folfox. My side effects have differed each time, but have revolved around diahrea (bad to none), nausea (not too bad) and really dry skin. Also have chemo brain and that weird jet lag feeling. But my CEA has gone from 44 to 43 to 12 to 4 to 1.8. I don't have anything to compare it to, but it's working on me at the moment. I'll find out tomorrow results from CT scan last week and if I'm a candidate for surgery. I've been "inoperable" since dx in January. So -- I wish your Mom the best on Folfiri and keep the faith -- and hope! Hugs, Dan
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #5
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    Welcome to the group
    Praying for your mom.

    *hugs*
    Gail
  • steveandnat
    steveandnat Member Posts: 886
    #6
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    sorry hearing about your mom
    Welcome to the board and the great people here. You'll find this is such a wild ride that evertone is on. I pray your mom will be good.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #7
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    Oops!
    Look like you had a double-post and got some replies...that's good. We don't miss too many and I thought the other had gone unanswered.
  • Unknown
    Unknown
    #8
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