folfox #8 today went well how are we all going on folfox ??????

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
Its was that time today, got my emend, dex, oxaliplatin, 5fu and locuvorin.

Had a few special visitors like my mate dane who has visited every cycle so far.

Old friends keep you close, while other keep distance as you cannot fit their plans. thats life, just an observation.

Was 10 minutes late picking up the kids from school, but the school is so supportive, instead of puttinmg kids in afternoon care costing $42, they just watch them in the office. I have been so grateful for the little practical helps offered when you don't expect it.

Bloods dropped a bit from last week, not to bad but my charmed run maybe wearing thin.
Still fine to get the infusion.

Saw ONC yesterday and and she is not a big Vitamon D fan, but ordered blood test. She also supports asprin after chemo as a preventitive. She checked out all my supplements, I put them on her desk. So said no studies for all of them, she would rather the money was spent on more chemo drugs. It was a philosical exchange, but at least she know what I am doing clearly. her only concern was grade 1 nuropathy and my diarrhea. She is genuinely worried going to get worse on my last 4 cycles.

On that subject if you followed the my post about liver health, she agreed to provide a codience only script for diarrhea.

Tired going to sleep. Its frusting not being able to swim at the pool, buit at least tonight I did a movie with a friend "127 hours" well worth seeing and did a walk.

How is everyone going on folfox ? well i hope.

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  • Love2Cats
    Love2Cats Member Posts: 127
    my second 5-fu with oxy, leuc and avastin
    Hello, I am sitting at home with my little black box by my side. So far this second treatment has gone a little better. I was really nauseous last night, but unlike the first time, I didn't actually get sick. I do have the cold sensitivity a little more this time, feels like needles in my hands and feet, and my face feels slightly numb. Also, the first bite I take of anything, makes me pucker for about a minute, like it is the sourest food I have ever eaten. Even a piece of warm toast makes me pucker. Once the first bite is over, it is no problem. The most annoying thing after the nausea is the constantly running nose (not a bloody nose) and I keep sneezing and waking up my cat. So now in addition to toting around the black box, I have to constantly keep a box of Kleenex with me too. Oh well, at least I still feel good on my non-chemo weeks, so life is still good.

    Hope everyone is having a great day!

    Sandy
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Love2Cats said:

    my second 5-fu with oxy, leuc and avastin
    Hello, I am sitting at home with my little black box by my side. So far this second treatment has gone a little better. I was really nauseous last night, but unlike the first time, I didn't actually get sick. I do have the cold sensitivity a little more this time, feels like needles in my hands and feet, and my face feels slightly numb. Also, the first bite I take of anything, makes me pucker for about a minute, like it is the sourest food I have ever eaten. Even a piece of warm toast makes me pucker. Once the first bite is over, it is no problem. The most annoying thing after the nausea is the constantly running nose (not a bloody nose) and I keep sneezing and waking up my cat. So now in addition to toting around the black box, I have to constantly keep a box of Kleenex with me too. Oh well, at least I still feel good on my non-chemo weeks, so life is still good.

    Hope everyone is having a great day!

    Sandy

    First bite of food
    Hey Sandy,

    That bit where you said when you take that first bite of food you have to pucker up... that is very common. I didn't get it myself when I was on the 5-FU/Oxy but many did. They described it as a pain in the jaw with the first bite of any food... but then it would go away. The Oxy cold-sensitivity is a real bummer... but I don't think you can get away from it. It's just part of the nastiness of that wicked drug ;)

    Me... I won't go into my week , since there's a whole saga of a post in another topic. But my heart goes out to everyone who experiences chemo-related nausea or intestinal cramping/spasms! I'm not sure which is worse... they both are horrible!! :)

    Pete... glad to hear things are going relatively well... as well as can be expected, all things concerned. And it's great to read you have friends who are hanging in there and supporting you. That makes all the difference in the world!

    Kathy... Hi neighbour! :) As soon as my head clears up, I may have to PM you again and get a list of the alternative stuff you are doing. I had told my onc that I'm not really into alternative stuff, but I'm also not into turning down ideas until I've proven they don't work for me. So I might be seeing what alternative stuff I'd like to try in conjunction with my chemo treatments :)

    Cheryl
  • LindaJS
    LindaJS Member Posts: 20 Member
    First round right now
    My husband had his first round yesterday - still wearing the bottle until Friday. It seemed to go well - we had to make a night time dash back to the hospital because there was some bleeding around his port - but a lovely nurse had a look & rebandaged it. Its bleeding a little this morning after he stretched so I think he must have a little tear in his skin near it. So 1 down, 11 to go.

    We are interested to see how he will react. He had quite hot feet last night & a slightly sore tummy this morning. I think as he slept through most of the infusion he just wasnt tired enough at bed time. We will try for some mild exercise today & yum cha. He had a stent put in on Tuesday & his surgeon was quite happy with that but he was kept on clear fluids only for two days - so hubs is keen to eat a proper meal!

    Good to hear you are doing well on it.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    LindaJS said:

    First round right now
    My husband had his first round yesterday - still wearing the bottle until Friday. It seemed to go well - we had to make a night time dash back to the hospital because there was some bleeding around his port - but a lovely nurse had a look & rebandaged it. Its bleeding a little this morning after he stretched so I think he must have a little tear in his skin near it. So 1 down, 11 to go.

    We are interested to see how he will react. He had quite hot feet last night & a slightly sore tummy this morning. I think as he slept through most of the infusion he just wasnt tired enough at bed time. We will try for some mild exercise today & yum cha. He had a stent put in on Tuesday & his surgeon was quite happy with that but he was kept on clear fluids only for two days - so hubs is keen to eat a proper meal!

    Good to hear you are doing well on it.

    yum cha is my favourite lunch
    i have steamed only, no fried. i love it.
    i cannot believe 4 to go now.

    welcome to the board.

    pete
  • yum cha is my favourite lunch
    i have steamed only, no fried. i love it.
    i cannot believe 4 to go now.

    welcome to the board.

    pete

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  • LindaJS
    LindaJS Member Posts: 20 Member
    unknown said:

    This comment has been removed by the Moderator

    :D Yum cha aka Dim Sum -
    :D Yum cha aka Dim Sum - Chinese brunch/lunch. Lots of dumplings & tea. Glad we got to go because poor James has had nausea since his bottle came off and not too interested in food. Going to our daughters swimming lessons today though so hopefully a good swim & some walk laps will help.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    unknown said:

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    its the merry go round everyone wants to get off
    hi graci,

    i hope your oxi problems have settled.

    some new people join and some experienced riders jump off.

    the oxi joys, i will miss the night sweats, the diarrhea and oh yes the nerve damage. oh and the thrush. this is humour, i am being sarcastic.

    well heres just hoping all the pain is worth the gain, who knows! i have been contemplating my future a little and the uncertainty thing is challenging to say the least.

    i try to live in the moment but am counting down the days until the oxi is finished.
    4 cycles to go.

    i am off to see 3 naturopaths over the next 6 days. it just happened that way. i'll compare all their stories and advice and go with the cheapest. only joking i'll go with the one i like the best. i figured i saw 3 surgeons and then 3 onc, so i might as well give these naturopaths a run for their money and they do know how to charge.

    i hope all the oxi people stay well

    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    LindaJS said:

    :D Yum cha aka Dim Sum -
    :D Yum cha aka Dim Sum - Chinese brunch/lunch. Lots of dumplings & tea. Glad we got to go because poor James has had nausea since his bottle came off and not too interested in food. Going to our daughters swimming lessons today though so hopefully a good swim & some walk laps will help.

    i forgot i had nausea as well
    hi linda

    i love yum cha, its a shame james had nausea. tomorrow is my families day for yumcha, we go after church.

    does james swim? i love getting the bottle off, we have been swimming every weekday after school and my kids and i love it.

    we just have alot in common , ie oxi, nausea, yumcha and swimming lessons. what a small world it is.

    i hope you have a great weekend.

    pete
  • VA-beekeeper
    VA-beekeeper Member Posts: 6
    folfox side effects
    I underwent #3 on Valentines Day - what a way to spend VO - hooked up and infused with a bunch of drugs. My only saving grace is repeating to myself - 3 down, 9 to go. My effects have been alot of what everyone is mentioning - tingling fingers (I can't seem to touch anything cool and cold - forget it), throat issues - felt like glass was in my throat during #1 and #2 - seems to subsided as they gave me a dose of benedryl. My mouth and tongue feel like I have a coating of thick velvet on them, my vision is blurry, my hair is thinning, my nose is running (thanks for who ever mentioned this - didn't know what was going on with that), stomach cramps almost nonexistant this round, food is tasting weird and metalic (but I am eating), all i really want to do is lay around and do nothing. I am pale and my look weird - i feel like I am being poisened! I hate that damn pump (is that the black box referred to above)- I have named it Cruelella Deville, the necessary evil twin sister. She goes everywhere with me for around 30 hours until disconnect - then I totally crash. I am really trying to be strong - just have my moments. Then the effects are gone early the following week and I feel like a million bucks! Only for about 4 days and then I go at it again. I am hanging in there and I will get through this. This is havee a bery helpful site. Thanks everyone!