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Thread: My FOLFOX Diary

  1. #1
    Moderator Senior User
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    My FOLFOX Diary

    Inspired by Dennper's chemo diary thread, in which he recounts his similar treatment, and which I found useful leading up to mine, and would recommend to any new people due to walk the same road.

    But every case is different, and I hope mine will also be useful to some people, and it might also help me by letting me vent, getting some clarity of thought, whatever.

    Actually in this introductory post I have yet to start my treatment, but I did see the chemo specialist for a consultation this morning, and then a longer chat with the specialist chemo nurse, who I will be seeing a lot of, about side effects, being sure to report anything I'm not happy about (especially if high temperatures are involved) and stuff like that. I have been given a thermometer.

    One thing I found very encouraging was that the specialist said that my treatment was aimed at a cure. I asked about this, suggesting that what he meant was a long term remission. No, he said he was aiming at a cure. Now that is a C word I like

    Next on the list - PICC line going in on Monday, then first treatment in hosp on Tue, then a couple of days of being at home with poison being pumped into me out of a bag. I'm a bit worried about how I'll sleep, but the nurse seemed unconcerned.

    There are always questions I forget to ask - must remember to talk about bathing with the PICC line in next time.

    She is going to organise transport for me, and get the district nurse to come to sort out the bag and line when it is empty.

    I'm so grateful to the Brit NHS. People whinge about it sometimes, but when you really need it it is a wonderful organisation.

    If anyone has questions or comments, pile in.

    David
    Last edited by DavidNB; 11-08-2012 at 04:50 PM. Reason: typo

  2. #2
    Administrator Top User Didee's Avatar
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    Thank you for doing this, David. It will help so many people just as Dennper's will and has.
    Chemo can be different for so many people even with the same chemo.
    I suggest to Baz that it might be an idea to make both threads a sticky so that those that follow can find them easily if he wishes to do this.
    Aussie, age 59
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo or hap transplant. Onc says long remission was good. Still very fixable. All I needed to hear. I am pumped and ready. BRING IT ON

  3. #3
    Senior User dennper's Avatar
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    David,

    Thank you for the kind words and thank you for doing this. I was honestly surprised at the amount of attention my little diary attracted, but folks want to know what to expect, and being able to see what is going on with others in a similar situation obviously helps. As you say, every case is so individual and different. Gathering as much information as possible is a great thing. Also, just having a place to come and talk about what was/is happening to me has been a comfort.

    I wish you the best of luck on your journey and I will keep checking in.

  4. #4
    Super Moderator Top User Baz10's Avatar
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    David, Dennper and Didee,
    I'll be delighted to sticky both as I do agree it's not a walk in the park, but a road many on here will unfortunately travel or are doing so or in David's case about to start.
    What delights me is David's Onc saying he's aiming for the BIG C -CURE.
    Now that will be a day to open a bottle of the cyber champagne.
    David,
    If your PICC line team are as good as those that did mine last year they were absolutely brilliant.
    As far as the Brit NHS, you certainly won't get any negatives from me. It has problems yes, but it is truly the envy of the world.
    David
    Title up your chemo diary (what you would like it named) and as soon as you start posting it will become a sticky.
    Dennper,
    Any objections to making your diary a sticky ?.
    Best of luck
    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.

  5. #5
    Senior User dennper's Avatar
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    Hi Baz10 - no objections at all to making my thread a sticky if it will help people.

    Quick question i don't know if I ever understood - what is the difference between a PICC line and a medi-port, or are they the same thing?

  6. #6
    Super Moderator Top User Baz10's Avatar
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    Dennper,
    Thanks for the permission to sticky your diary.
    PICC line V Medi port
    Maybe different terminology between the UK and US.
    A PICC line is a Centrally Inserted Catheter placed just below or above or on below the elbow into the main artery. The catheter carries a tube which goes through catheter up the artery with the delivery end located adjacent to the heart. In my case as my bowels went on strike for 17 days post surgery, obviously I couldn't consume any food so they used the PICC line to deliver liquid food.
    After installing the PICC line I needed series of X rays to ensure the end was sitting in the right location before they could start IV feeding. The catheter in my case had 2 large IV connections, sometimes I believe it can take 3.
    Maybe the Medi port is similar but I'm totally unfamiliar with what a Medi port is.
    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.

  7. #7
    Senior User dennper's Avatar
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    Thanks Baz10 -

    Ok they are different things that serve the same basic purpose. A medi-port is a port placed under the skin on one of the shoulder/upper chest areas either on the left or right. Mine was on the left side just under the collar bone area. The port has a tube that runs up near the collar bone and then down into a main artery or vein just like the PICC line. So they sound like similar devices with different placements on the body and maybe slightly different purposes. I don't believe that Medi-Ports can be used to deliver nutrition, and think that they are only used for delivering drug treatments and for drawing blood if needed. There is more information about these ports available on line if you google them.

  8. #8
    Super Moderator Top User sheila's Avatar
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    bethel park pa
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    Den- no the ports cannot do PTN the picc line is a tube thats fed through a main artery and is stitched in place can be placed in the upper arm (thats where moms was when she was home.)
    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.

  9. #9
    Moderator Senior User
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    It started today with the PICC line being put in.

    I was offered sedation, and after some humming and haa-ing, opted for it. I remember the knick when they put the sedation in, and I thought I remembered more about the rest of it than I do. I think I've forgotten more in the meantime. Feel fine now, though - the nurse said she'd given me something afterwards to counteract the sedation.

    She also told me that I'd complained of a little pain a couple of times, but I had no recollection of that.

    Bottom line for those coming after - getting PICC line put in is really nothing to worry about at all. I hardly feel it now.

    Tomorrow I have to be at hosp for 9am, for first treatment. Have some anti-nausea pills to take with breakfast, so hope transport is in time.

    More when I get home from that.

    David

  10. #10
    Super Moderator Top User Baz10's Avatar
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    David,
    I hope your first treatment goes well.
    DONT forget to keep taking the anti nausea medication.
    Keep us posted
    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.

 

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