FOLFIRI (Update)

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fatbob2010
fatbob2010 Member Posts: 467 Member
edited May 2014 in Colorectal Cancer #1

Greetings to my Friends on CSN,

Last scan showed invasion of healthy half of liver at multiple locations, and the left is reinfected as well.  To make things more interesting there is a strange rash at the incision site which seems to be spreading.  Onc told nurse to get referral to dermatology, no luck with that yet.  Oh yes, did I mention that the lung met is growing?Frown

Last surgery was always without high potential for success as a second go at the same area of liver (first surgery was somewhat radical and removed quite a bit of left lobe).  

Tuesday it is back to chemo. Yell 

I am grateful for the chance at this new chemo that is scheduled to take 5 hours to infuse.  

This is starting to become less like the Dodo Race from Alice in Wonderland, where;  “Everybody has won, and all must have prizes.” 

The fight is not over.  There is no giving up.  Yet, as the fires of battle are fanned anew.  There is a more obvious anxiety and sense of reality which has surfaced.  These emotions and feelings had been masked by the appearance of over confidence and false bravado.   How male can one be?

Tally-Ho, tumors at six o'clock low !!

Art 

P.S.  This is starting to give the appearance of a frieght train with poor brakes.  Wedding of youngest daughter is this August.  Dancing the first dance would be nice.

5-6-2014

The loss of Joe was a sad thing that hangs heavy on my heart.

Oncologist said that CEA has over doubled again in two weeks, now up to ~ 150.   He told me he is surprised how good I look.  He said that with that level of CEA he would expect more outward symptoms in my affect.  Dermatology referral to evaluate a spreading rash with an apparent origin in the area of the last incision had not been placed; he said it would get done today.  Seems to still resist the thought that it is time to pull back from the paid workforce.

Added Pantamumab (?) to the FOLFIRI routine already ordered.  He also ordered antibiotics and steroid cream for the anticipated acne like rash.  Oh yes, let's not forget,  he added the 46 hour pump back into the melieu as well.

Not sure how long my employer will be able to put up with my abscenses to handle medical appointments, treatments, and recovery from treatments.  

The scheduled infusion time is 300 minutes (five hours).

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  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Dear Art...

    my heart dropped to my toes, reading your post.  Darn this fight, it can keep knocking us back and back again. Sometimes knowing that others are suffereing as you are, helps, but sometimes nothing helps, at least for a while. 

    May your 'over confidence and false bravado' carry you through those tough moments, and may we be here to carry you too. 

    Off to the fight with you. We're right by your side. 

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    Trubrit said:

    Dear Art...

    my heart dropped to my toes, reading your post.  Darn this fight, it can keep knocking us back and back again. Sometimes knowing that others are suffereing as you are, helps, but sometimes nothing helps, at least for a while. 

    May your 'over confidence and false bravado' carry you through those tough moments, and may we be here to carry you too. 

    Off to the fight with you. We're right by your side. 

    I am truly sorry to hear the

    I am truly sorry to hear the news but you have the right attitude. I am sure you will be able to have that first dance with your daughter.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    Damn, Art.

    Frown

    Not at all happy to read this.  That's a lot going on.  Is this your first time on FOLFIRI?  I haven't had that one, but I have seen quite a few people getting good results from it.  Gotta hope it does the trick well enough to get you back into surgery mode.  I think Jeff (janderson) has had a bunch of his liver removed over the years.  It's amazing how much it can regenerate.

    Did they biopsy that rash?  I find that a little worrisome.  I would want to make sure it's not anything to be concerned about from an infection standpoint.

    You sound like you are still keeping up your spirits, and I'm glad of that.

    Big hugs, courage, coming your way~AA

  • Lisa2012
    Lisa2012 Member Posts: 142
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    Like the little engine that could....

    Art,

    if you are going to be a train, be the little engine that could.....

    i had folfiri I, have you?  It was very successful at cleaning up my liver....reduced 26 mets to two.  Aside from chemo days, I felt pretty good.  

    I am happy to hear that you have a goal....the first dance.  Like Trubrit, I am cheering for you!

    prayers for a good start tomorrow.  Wishing you strength.  Remember "I think I can,  I think I can..."  it will become, "I knew I could, I knew I could"

  • LindaK.
    LindaK. Member Posts: 506 Member
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    You can do it...

    Hi Art, sounds like you've been through the ringer already.  My husband started Folfiri in March, he will have his 4th treatment this week.  He has been doing surprisingly well.  The first session was a little difficult, had more nausea and fatigue, but each session he seems to do better and better.  He goes home with the 46 hour pump.  He doesn't feel so fatigued on the weekends after he gets the pump taken off.  He did 12 rounds of Folfox last year, the oxalyplatin was removed after 5 treatments due to extreme constipation and a bowel obstruction.  He had a large tumor removed in January of this year in his small intestines, now stage IV.  Pet scan in April showed 4 lymph nodes "lighting up" but no other organ inovolvement (yet anyway).  We switched in March to a wonderful cancer center and we both feel so much more at ease there.

    I hope you can tolerate the new chemo and that it helps you.  We are usually at the center for about 4 hours since he sees several people before treatment who all care about him/us.  They are on top of things and it is so comforting especially for me.  It's tough to hear bad news, but there is always hope.  In our long marriage, I was always the pessimist and he was the optimist.  Now, our roles are reversed.  I find myself boosting him up and try not to let him get so down about it.  As long as the doctors are willing to try treatment, the patients have to try too.  I know it's easier to say than do not being the one getting the treatment, but I am with him every step of the way too.

    Good luck tomorrow, you can do it!!

    Linda

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
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    Thanks to all

    Thanks to all for the kind and uplifting comments.  

    Tomorrow is the beginning of the next act in a play that has not yet been totally written.  

    Big boy panties are already laid out for morning.

    Art

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Thanks to all

    Thanks to all for the kind and uplifting comments.  

    Tomorrow is the beginning of the next act in a play that has not yet been totally written.  

    Big boy panties are already laid out for morning.

    Art

    Keep your goal in mind...

    You have to walk your beautiful daughter down the aisle. You can do this!!!!

    My brother has been on Folfiri (with erbitux), but he had a lot of complications, so they had to cut it down to just 5-FU and irinotecan. When he had the fluid around his heart, they think he had a mild heart attack, so they are trying to ease him back onto the full regimen. He was also getting bad diarreah, so right now he is taking it slow. The lung nodules are stable (I thought some of them disappeared, but my brother misunderstood the nurse). They don't see his liver tumor on the CT scan, so either it's just not showing or it's gone. He has 12 weeks of chemo to do (this round), so we'll have a PET scan then. When he was diagnosed stage 4, the liver tumor only showed as a shadow on the CT scan but showed clearly on the PET scan. I am hoping the PET scan in 12 weeks shows that it's gone. Hopefully you'll get great results with Folfiri. His doctor said she's had a lot of good results with it. Good luck! Keep fighting! :)

    Lin

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
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    Thanks Lin

    Your brother is a strong example.  

    Thank you for sharing this bit of hope.

    Art

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Thinking of you today, Art

    Five hours is a long time, so I hope you are able to read, talk, sleep and have it pass fairly quickly. At least the infusion processs isn't bad. 

    Sorry about the hook up. Have you done that before? (if you have, you'll know) you get used to it, though I was always anxious to get it unhooked. 

    Good luck with your employer. You really are a fighter if you contunue with your work while going through treatment. I doubt I could have. 

    Anyway, I'm here thinking about you. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry

    Sorry to hear of this setback.  I'm wishing you well and thining of you as you go forward with your treatment.  Yup Joe's news was hard on me as well.  Hope your work can "work" with your schedule.  Can't understand why any employer wouldn't be held to that but I'm hoping your's does.  May God shine upon you and your treatment forward.

    Kim

  • Lisa2012
    Lisa2012 Member Posts: 142
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    Not gonna lie...

    Art, I am so sorry.  I hate the infusor pump and always started a count down of the hours until I could get it unhooked.  The good news is it worked well for me and like everything, it was temporary.  I cannot believe that the dermatology referral had not been placed.  I hope they finally did that,

    I am sorry for your struggles with your employer.  I certainly hope you are on FMLA.  I have had these same struggles, but to this point I have not had the fear of losing my job and I have several GREAT coworkers who cover for me.  

    If you need us, we are here, and understand.

    hang in there and thanks for the update

    lisa