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Thread: My FOLFOX Diary

  1. #161
    Super Moderator Top User sheila's Avatar
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    Jul 2008
    Location
    bethel park pa
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    6,679
    Baz- sounds to me like David is taking a break from the forum- I think his next scan is in april- he will probably update after the results.
    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.

  2. #162
    Wonderful news to be chemo free and hopefully cancer free!

  3. #163
    Moderator Senior User
    Join Date
    Oct 2012
    Location
    Pembrokeshire, UK
    Posts
    234
    Sorry for my absence, I was a bit down really when taken off the chemo, though at the same time very relieved.

    I phoned the cancer nurse today to ask why it had taken so long for me to hear anything about the results of scan on the 2nd April.

    The answer was that the oncologist had had a bereavement, associated time off, and was behind.

    But she filled me in on the report of scan - apparently I have a degree of diverticulitis, which is not really a problem, and no sign of any cancer

    Long may that continue.

    Starting part time work again on 1st May, but still having trouble with feet, so cannot walk as I used to.

    Seems to be slowly improving though, and on the plus side I recently received a Blue Badge so that I can park in some restricted areas.

    Have enjoyed getting to grips with new camera more and more as the weather has improved and I've got a bit stronger.

    David

  4. #164
    Top User
    Join Date
    Jan 2013
    Location
    Lake Jackson, Texas
    Posts
    1,492
    i am so happy to read about your no cancer report. Hopefully your feet will continue to improve as well as your proficiency with the camera. Enjoy this nice weather. Prayers for a full recovery.

    Amanda
    Caregiver to son, 32 , 5/18/2011 Stage IV
    Sigmoid colectomy , liver biopsy 5/18/2011
    6cm sigmoid tumor, low grade (well-to-mod. differentiated)
    6 of 33 lymph nodes +
    FOLFOX /Avastin 6/2011-8/2011
    Rt hepatectomy on 9/20/2011---70%
    2012
    FOLFOX /Avastin 4 cycles 1/31 stopped-low platelets
    3/5 CT clear
    4/ PET scan showed peritoneal mets
    4/24 splenic embolization for low platelets
    FOLFIRI/ Avastin 5/12-8/12
    Consult for HIPEC 8/12 denied---tumors too many, possibly in ureter.
    5FU/ Avastin 8/2012-2/2013
    12/5/12 scan tumors stable
    12/12 aranespt
    2013
    3/5 tumor progression in abdomin
    Restart FOLFIRI/ Avastin with lower dose of Irinotecan 3/11-3/25
    nuelasta shots
    ER - bowel obstruction 4/4
    Port removed 4/12
    Port replaced 5/9
    ER 30 hrs
    Erbitux in, Irinotecan lowered 5/20 & 6/17
    9/17scan indicates stable
    9/18-27 & 10/7-11 small bowel obst.
    Erbitux & Irinotecan 11/5, 12/2
    Bowel obst. 12/31
    2014
    1/8 urether stent
    1/17 Hospice
    3/27 started his heavenly journey

  5. #165
    Super Moderator Top User sheila's Avatar
    Join Date
    Jul 2008
    Location
    bethel park pa
    Posts
    6,679
    David- glad to hear you got some good news Im sure you will really feel like taking your pictures now. hopefully your strength will return thanks for the update
    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. #166
    Newbie New User
    Join Date
    Jan 2013
    Posts
    5

    Terrific News...

    I am so happy for you, David!!!
    Judy

  7. #167
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,744
    David,
    We knew you were taking time off, but never the less many of us were concerned by your absence.
    Good news indeed, I'm delighted with your NED results.
    I know you live in Pembrokeshire and there are some great wildlife locations.
    Many years since I was in Pembroke ate the refinery, we used charter fly into Haverfordwest West the disused old RAF base. Talking about hairy landings and takeoffs as the pilot used to fly over and down the runway to scatter the sheep. In that time thee was no control tower it was just a runway.
    Take off was equally hair raising as he would taxi the full length of the runway then back, turn round and open the throttles. Normally we flew in a twin Cesna Super Comannche.
    It was 1 hr 40 flight time as opposed to 10 hrs by train and about the same by car.
    I used to visit the old hangers where the Sunderland flying boats were built.
    Lovely area.
    Take care my friend and get out when you can and let us have some of your photos.
    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, 23/08 now 8.2.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    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, too many bullets at moment.

  8. #168
    Super Moderator Top User sheila's Avatar
    Join Date
    Jul 2008
    Location
    bethel park pa
    Posts
    6,679
    david hope your enjoying this time and not having aby problems- thinking of you.
    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. #169
    Regular User
    Join Date
    Sep 2016
    Location
    Indiana
    Posts
    22
    Glad your doing well!

    I have to start Folfox next week sometime, so this thread really helped me know what to expect, and I hope I can have your outcome

  10. #170
    Newbie New User
    Join Date
    Apr 2017
    Posts
    3
    This forum truly helping me a lot more everytime I read the concern replies & good advice. I thank you all, my sister's & brothers out there. We're all on the same boat but we know we're getting to our destination safe and sound.

 

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