My first appt with the Onc

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Ladyboots
Ladyboots Member Posts: 6 Member

I had my first appt with my Onc today to discuss my chemo treatment plan, and I'd like some feedback on the plan since this is so new to me.

He wants me to be 8 weeks out from surgery (only 4 1/2 weeks out right now) because one of the meds could stop my surgery healing.

I have googled all the meds he told me about, and many of them have some pretty scary posible side effects. My Onc kinda made it sould like it would be much milder than the google sites. That's why I'm looking for actual opinions from all of my new friends on this board.

5 FU

Leucovorin

Oxaliplatin

Avastin (reading about it, it seems very harsh)

Neulasta

Administered with a pump, not an IV

All opinions would be appreciated!!!

 

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Side effects.

    I can link you to my list of side effects experienced. Its EXTENSIVE! 

    Someone else could link you to theirs, and they have very few. 

    Sadly, you won't know what side effects you are going to expereince until you are in treatment. 

    There are some that are a given.  Sensitivity to cold. Keep gloves handy, especially by the fridge, as the shock you will get when picking up cold items is awful.  Mouth sores. I used a combination of baking soda, salt and water and it worked well.  Fatigue in some form or another will get you, especially as you progress into treatment.

    Do you have a Port? You mention getting a pump, which will be hooked up to a port. 

    I remember being very confused about exactly what was going to happen on Chemo day. This was how it went for me. A four hour infusion of FOLFOX, followed by a push of 5FU and then hooked up to the pump, taking it home for 48 hours of continuous 5FU infusion. Unhooked and then two weeks before my next session. 

    And of course, your Onc is right. Chemo inhibits the healing process. I cut my finger right after starting chemo, and it didn't heal for weeks on end; so you can imagine what major surgery would be like. 

    TRU

  • abrub
    abrub Member Posts: 2,174 Member
    edited January 2017 #3
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    The Avastin definitely slows/stops healing

    Many of us have had that chemo regimen:  Folfox plus Avastin.  It is IV, given usually through a port or a PIC line.  You will be hooked up to the pump for 46 hours of 5FU after your clinic portion, which is where you'll get the leucovorin, Oxaliplatin, and Avastin, plus a "push" of 5FU.    Neulasta is to keep your counts up.  Ask the dr about taking Claritin the morning of and for several days after your Neulasta shots - that supposedly helps with bone pain.  I never needed the Neulasta.  

    You will have cold sensitivity from the Oxaliplatin; that is a given.  You may have neuropathy, and other side effects.  Be sure to tell your dr about any and all side effects that you have; they'll adjust dosages or give you meds to avoid side effects.  They start with the highest recommended doses, but then often lower them to cut back on side effects.  Everyone tolerates this chemo differently.

    Good luck.  It's not fun, but it is effective.

    Alice

  • danker
    danker Member Posts: 1,276 Member
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    5fu

    I got 5fu with a pump 24/7 for 5 weeks,  Was also getting chemo 5 times aweek during those 5 weeks.Then 6 weeks rest before surgery. Much diarrhea week 3 thru week 6.  Every one is different, so hard to say what your  effect will be.  I have been NED (no evedence of disease)for the last 6 years.  Good luck to you

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    I was on the 5FU after my

    I was on the 5FU after my cancer surgery. I had a port and I went in every two weeks for about an hour hooked up to an IV. I remember being tired but not too bad. The worst part was the neuropathy/cold sensitivity. They gave me a huge pair of special gloves that I never used because they were all out of the small ones. Touching anything cool is like getting a bad shock from walking across a carpet. During the winter ambient temperature is an issue. Our house was warm but things that shouldn't have been cold still shocked me. Like touching the handle on the bathroom door. I used those cheap cotton gloves you can get to do things like cut up vegetables because they were too cold to hold, even if they hadn't been in the fridge. The worst part was having it in my mouth. I didn't get sores or anything I just felt like whatever I was drinking was like swallowing glass or rocks if it was anything cooler than room temperature. I remember how surprising things would be a shock to touch or I'd pick up something and suddenly be frantic trying to put it down because I didn't expect it to shock me.  

    It took some time to get to that point, though. The first few sessions it wasn't there at all and it gradually got worse until it was almost rght up to the next session. I lasted for two less than I was supposed to get. I can't remember, eight out of ten or ten out of twelve. I was going to tell my onc that I was done but then had the blood clot and that was the end of it anyway.

    I think the neuropathy is a given for everyone but varies in extremes for different people. It comes from the oxyplatin portion of the chemo.

    Best of luck. It's yucky.

    Jan

  • mokomapa
    mokomapa Member Posts: 24
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    Same as mine

    That sounds like the same "cocktail" I had 11 years ago.  I agree with the comments above.  Just remember everyone has different side effects.  My best advice is to ask your DR if you have any concerns, keep positive, and don't google anything.  Best of luck and God bless you.

    Tom

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    I did the 5fu with

    I did the 5fu with Oxaliplatin, with the usual temp effects, and no lasting damage that I notice. My wife had no troubles with Avastin or the Neulasta. The only pump trouble was unhooking the line, so if you do much physical stuff, tape the connectors. Everyone is different, my part is just to say that it can be relatively mild, you'll only know when it happens, so prep for a tough time and feel fortunate if it goes easier then expected....................................Dave

  • traci43
    traci43 Member Posts: 773 Member
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    That's the standard first line of chemo

    Most of us have had the same regimen.  I started before the 8 weeks were up but I don't think they added Avastin until after 8 weeks--same goes with pre-surgery no Avastin for 8 weeks prior to surgery.  Avastin slows the formation of new arteries and veins so that any tumors don't get a good blood supply.  Be sure to get a port, it's much easier than a PICC line when you're attached to the 5-FU pump.  Cold sensitivity is the worst, gloves for the fridge, all drinks at room temperature.  I even used flip flops in the shower to protect against the cold tiles.  Any nausea is usually controlled by zofran and comapzine that you take a couple of days after infusion.  Some experience hair loss, I didn't although mine thinned.  After my first surgery I didn't color or blow dry my hair.  When the cancer returned I said screw it, and found a hair color that wasn't so harsh and continued to have my hair colored with no ill effects.  The first time I had the 5-FU pump, which made me really tired for 3-5 days, including the days I had the pump.  When it recurred, I had Xeloda, the pill form of 5-FU.  I had much less fatigue but had some really awful blisters as the side effect of Xeloda is skin issues.  I learned to use a really creamy lotion to minimize the blisters.  Each person is different and will experience different side effects, the good news is very few people experience all the side effects.  Many of us have been able to continue working and even working out while on chemo.  Take it easy and listen to your body.  Good luck getting through this, we're here if you need support.  Traci

  • NewHere
    NewHere Member Posts: 1,427 Member
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    My Story

    As many above.  I had FOLFOX, 12 sesssions every other week, so 6 months.  8 of the 12 had the Ox part of the mix.

    More details here

    http://csn.cancer.org/user/237551

     

  • blessed39
    blessed39 Member Posts: 90 Member
    edited February 2017 #10
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    "How I Beat Stage Four Colon Cancer"

    Dear ladyboots,  If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

    blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

    blessed39