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

Gold44
Gold44 Member Posts: 8
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

  • Sundanceh
    Sundanceh Member Posts: 4,392
    Hi there!
    I'm sorry that your post has gone unanswered the past couple of days - I was looking through and saw it dangling, so I wanted to bump it back up to the top.

    There are plenty of instances where chemo works for awhile and then begins to slip and then not work altogether. The body can adapt and mutate to those chemical changes and eventually become resistant.

    Folfiri is another chemo that is good at shrinking and holding the line on growth. It's side effects vary from person to person - the same as they do with Folfox. Side effects run the gaumut of losing your hair to nausea and fatigue etc.

    Your mom's mis-diagnosis rings an all familiar chord with many of us - mine was the same thing and it was dismissed as a hemi for 3-yrs...alot of times if we've never been sick, we don't think to question or pursue another opinion.

    I'm sorry this happened to your mom.

    Hope can sometimes be a moving target, but is essential in giving us the incentive to try and fight - this is its biggest benefit and our biggest ally.

    I'm sorry we missed you earlier - but glad to meet you...and welcome!

    -Craig