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Thread: My FOLFOX Diary

  1. #11
    Moderator Senior User
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    Thanks, Baz

    Sitting at home now with a pump and chemicals in a bumbag around my waste.

    My day started with anti nausea med, 4 Dexamethasone and one Ondansetron. One more of those to be taken tonight, and more of both prescribed over the next two or three days, and then again before the next dose of folfox.

    Also have domperidome to take as required.

    Everything actually has gone as smoothly as I could have hoped for, except the minor irritation of a wait for a ride home.

    I'm well aware from other threads that it will get harder rather than easier, but at least I'll be starting from an easy base.

    Side effects mild, though I haven't asked for trouble by washing hands in cold water or taking stuff out of frig unprotected.

    All I had was a bit of sharp pain at the left side of my mouth when I had my first two bites of lunchtime sandwich, which jogged my memory of people having discussed this, and then again a sensation at the back of my mouth which I could describe as a sore throat, but it is not quite like any sore throat I've ever had, so I reckon the chemo had something to do with it.

    As I say, though, mild.

    The only other advice I'd give is that if you have a tablet, like an ipad, kindle or android device, stock it up with pictures, books, video stuff or whatever you like and take it in. Less bulky and easier to handle than most books, and containing more choice than a bagful of books.

    I have also found loading it up with stuff to access in hospital a welcome distraction, first of all from the coming operation, and now from the chemo.

    All in all though - I feel better about the whole thing at the end of day one than I did at the beginning of it, and even then I was pretty positive and far from breaking rule one.

    A couple of hours later - just a bit of tingling in the fingers.

    Can feel it especially when I touch something, like a keyboard.

    David
    Last edited by DavidNB; 11-13-2012 at 06:32 PM. Reason: to add

  2. #12
    Super Moderator Top User Baz10's Avatar
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    David,
    Well day one is nearly over. They sure have you on enough anti nausea medications.
    As my mate Dave, he's on 4th cycle, still getting down to the pub on a Saturday and drinking with Thinsulate gloves on as he says keeps his fingers toastie so they don't come in contact with the cold glass.
    He reckons by the end of pint 2 of Spitfire beer his mouth and throat feel much better. Not that I'm promoting drinking whilst on chemo, but Dave seems to get pleasure from it, so i say good for him.
    Best wishes
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20.
    Prostate Cancer confirmed Gleason 3+3.
    Active surveillance for time being.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile.

  3. #13
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    Pembrokeshire, UK
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    Those anti-nausea quantities were just for taking before going in, and I have enough to do the same again, as prescribed, in 2 weeks time for the next one.

    The dose is lower over the next 2/3 days, then just the optional ones until the next course.

    The tingling less severe now. I'm trying to notice what is going on, and I do find that soft touch like hitting a keyboard is more tingly than pressing 2 fingers firmly together.

    I have a bottle of Spitfire ready to open if I feel like it later. Might bring it up to summer room temperature, or close to it, in the microwave, but then again I might just leave it until Friday. Time will tell.

    The nurse says the tingling and reaction to cold should die away after the couple of days when the dose is going in until next time. She wants to know about it if they get bad, and particularly if they stay bad once the dose has stopped going in.

    David

  4. #14
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    First morning with pump on after very disturbed night which I don't really put down to the pump. Woke at 3 and took about 3 hours before grabbing another hour, Feeling very wakeful.

    Nearly had a panic moment - yesterday evening started sneezing, nose started running, got stuffed up, nearly took my temperature forgetting that I'd recently had a hit drink, which I'm sure would have caused a degree of consternation until I remembered the drink. Took temp 20 minutes later - not elevated, and the symptoms seem to have vanished as quickly as they came. Odd, but there it is.

    I've been thinking a bit about the nerve damage that can arise from FOLFOX, and it strikes me that I do not know if overstimulating the nerves during the treatment, taking a gulp of a cold drink, or picking something out of the freezer unprotected is just something that will wear off, or contribute to long term damage.

    I don't know if anyone knows, but I would certainly like to, if anyone can help. I'll ask my cancer nurses and/or onc when I see them, if the answer hasn't emerged by then.

    In the meantime I intend to take as much care as I can to avoid such incidents, but I'm well aware that I will probably make mistakes out of habit at some points, and I'm not going to beat myself up if that happens.

    In any case they have told me that this sort of effect generally dies down when the input of drugs ends, or shortly after, like within a day, until next time. How does that meld with other people's experience?

    Breakfast next, and mustn't forget my nausea tabs. Then a walk with camera and binoculars, I think, since it ain't raining.

    David

  5. #15
    Super Moderator Top User sheila's Avatar
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    bethel park pa
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    David- moms extreme side effect to cold hot did slowly dwindle as the time went on if you go out in the cold wear a scarf around your mouth so the air isnt so cold on intake. wearing gloves at the supermarket while near the meats and dairy section helps too. the tingly numbness part of the neuropathy has not gone away for mom in her feet legs and hands it subsided but she had so many treatments over and over that in her case permanant damage was done. so that all depends In any case I hope things go well for you with your treatment and hoping you wont be affected too much by the neuropathy and cold sensitivity.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  6. #16
    Moderator Senior User
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    Pembrokeshire, UK
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    Thanks Sheila.

    Round here at the moment we are getting temperatures of 9-10C throughout the day, which is 48-50 F, and which doesn't seem to be any problem.

    What sort of air temperatures, I wonder, would be crucial? Bearing in mind that there is going to be some variation.

    Very few tingly moments today, main side effect is that I haven't passed a motion today, which is very unusual for me. I was warned about this.

    Just to make it clear, the cancer nurse told me that I needed to tell her if cold on hands or drink continues to be a problem for more than a day after the end of each treatment, not the course as a whole - or so I understood her to say, anyway.

    I like a little nightcap (or so), so I think that for that say 4 day period of the treatment and a day or so afterwards I shall drink hot water, squash or lemon juice, honey and a tot of rum instead of my more usual beer or wine.

    David

  7. #17
    Super Moderator Top User sheila's Avatar
    Join Date
    Jul 2008
    Location
    bethel park pa
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    6,679
    Im not one to advocate drinking anymore but if the nightcap is ok with the treatment your on and it helps you relax and sleep I say go for it. ah could add to the constipation tho. then again could be just what you ate the day before.
    Ive heard people getting constipated with treatments but 85% lean more towards the diarhea.(sp?)
    if it keeps up maybe you will change it to a prune juice night cap. (just kidding). hope things stay about the same and you are able to tolorate it.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  8. #18
    Moderator Senior User
    Join Date
    Oct 2012
    Location
    Pembrokeshire, UK
    Posts
    234
    Not too much to report today.

    The District Nurse has been round and disconnected me etc, and has arranged for the doc to send a prescription for a laxative for me. I am not used to constipation, and don't like it much, but should get sorted out soon.

    He seemed to think I'd been doing well, and was a bit surprised when I told him I'd had a walk this morning.

    I asked him my question above about whether overstimulating oversensitive nerves could do anything that would make them worse in the long term. He said not, but when I asked him if he was sure, he said, in effect, that he couldn't see any mechanism for it. No more can I, but still I think I'll ask further and try to be careful in any case. Even if just to avoid instant discomfort.

    Nothing now till bloods next Mon, unless side effects change for better or worse. All comments and questions welcome.

    David

  9. #19
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
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    David,
    Good to hear your koping well
    Keep beating the odds friend and keep the updates coming.
    Really pleased, maybe you are one of the few that(hopefully) only has mild chemo side effects.
    Best wishes
    Barry
    Last edited by Baz10; 11-15-2012 at 07:15 PM. Reason: Finger wont do as I tell it and IPad thinks it knows best.LOL
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20.
    Prostate Cancer confirmed Gleason 3+3.
    Active surveillance for time being.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile.

  10. #20
    Moderator Senior User
    Join Date
    Oct 2012
    Location
    Pembrokeshire, UK
    Posts
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    Got constipation prescription, which was the sort of pre-colonoscopy gloop. Hate it! So decided to leave till morning, and succeeeded in the meantime

    One of my anti-nausea prescriptions was over, felt a bit nauseous so took two of the optional ones as prescribed. Felt better, but not quite right, so leaving nightcap alone tonight

    David
    Last edited by DavidNB; 11-16-2012 at 03:19 PM.

 

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