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Thread: Stage IVB survival & treatment?

  1. #1
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    Stage IVB survival & treatment?

    My wife has Stage IVB colon cancer - 50% liver involvement and 4 to 6 lymph nodes. I can't find prognosis or survival data specific to IVB, only IV. Any suggestions welcome?

  2. #2
    Super Moderator Top User Baz10's Avatar
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    Peterz,
    Welcome to our forum, but terribly sorry about your good ladies condition.
    This is a forum, where many are testament in having fought and are still battling this awful disease.
    Frankly no one on here would attempt to provide a prognosis as we are not medical professionals nor do we have the full details of your wife's condition.
    Survival data is a number and not particularly current or completely accurate and cannot be relied on to provide a true % of survival by stage over a given time period.
    What stands out is that the best prognosis is dependent on having the best cancer specialists, the best specific treatment regime.
    I can only suggest that you approach your good ladies cancer team and ask them the same question, as they alone have the full details and are the only ones capable of giving you an answer.
    Maybe our other members will chip in with good advice based on their specific conditions and experience.
    May I wish your wife and yourself the best of luck.
    Please if you feel you can keep us updated and whatever support and assistance you need we shall do best.
    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.
    Stop grumbling Baz, your still alive and kicking so far.

    Motto
    Do what I love doing, when I can until I can't.

  3. #3
    Top User DulcimerGal's Avatar
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    I'm with Barry, once in a while I get statistics happy and try to find just what the latest stats say....but as he points out, the data is always old as it might be the five years stats, and well....Lots more treatments have come out in five years that improve all the odds for us NOW!

    When I get this way...I always go and read Sheila's posts about her Mom. She is a one woman survival story with stage 4 something cancer and has been around now for 7 or 8 years!

    We are each individuals, and we have to take charge of our own survival, you and your wife will get there after dealing with this for a while. Meanwhile, start writing your questions down and ask them ALL next time you see your Docs.

    so - welcome to the forum, stick around and let us now how things are going. We have several caregivers who post, as well as those of us dealing directly with this disease.

    Cheers
    dulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

  4. #4
    Super Moderator Top User sheila's Avatar
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    sorry your dealing with all this but as you see mom at her age-77 and stage IV from day 1 is still here going on 6years in april- but thats too far away we live for today and have been since day one.
    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.

  5. #5
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    thanks for the replies....Yes, I am aware that individuals might radically depart from the norm but I think that understanding what the norm is can be helpful - we need to know what we're facing. The Oncologist kind of blew the question off, choosing to focus on discussing her longest lived patients as examples, which is good for my wife to hear. The data , as I wrote, was not that detailed. I am also aware that at best the data is several years old and that, expecially with colon cancer, survival is improving over time. It is not critical to nail this down, as staying on top of the therapy and ensuring my wife's nutrition status is maintained and we are doing all we can to keep chemo side effects at a minimum, and many other things, are the key things....just thought someone here might have better data they could point me to....thanks again...

  6. #6
    Senior User Buzzard's Avatar
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    Peter, I assume you are familiar with the concept of a Bell curve-the distribution of results for any group sampled. Skinny on the left and the right, and fat in the middle. The fat part of the bell curve for Stage IV is survival of a few years, say 2-4. HOWEVER. If your result is out on the right side for the curve, your good wife may be around for many years to come. And while not common, there are instances of people dx'd stage IV that are NOD (No evidence of disease) a few years later. Does this mean they are cured? Who cares, as long as they are alive and kicking.
    As my oncologist told me, after a fairly clinical appraisal of my expected survival time-at my request-if you are alive, the survival rate is 100%.
    When the cancer first recurred, I was kind of obsessed with how long I had. While it is still interesting information to have, after a while you move on to what to do today to enjoy life and be happy around your loved ones. What's gonna happen is gonna happen.
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
    Lung biopsy confirms that nodules are metastatic, enrolled in clinical trial at Huntsman. 11/14
    Sounds like a lot of fun, doesn't it?

  7. #7
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    thanks Buzzard. yes I am well aware of the bell curve, and the implications, and it's nice to hear from people who are out on the far right. My point was just to get a handle on where the average was for IVB as opposed to IV..

  8. #8
    Top User mojo's Avatar
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    What is stage ivb , I know about dukes abcd. And stages 1thru 4.

  9. #9
    Senior User Buzzard's Avatar
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    Quote Originally Posted by peterz54 View Post
    thanks Buzzard. yes I am well aware of the bell curve, and the implications, and it's nice to hear from people who are out on the far right. My point was just to get a handle on where the average was for IVB as opposed to IV..
    Spent a little time nosing about. I could find no separate survival statistics for IVB-or IVA for that matter. Every survivability statistic is just for stage IV combined. Obviously IVB involved more distant metastasis to organs or parts of the body quite a ways away from the original tumor site, and all stage IV are playing in the big leagues, so to speak. I went stage IV more than two years ago, and while the nasty little tumors are still out there, a combination of cyberknife radiation and current chemo has kept them under control so far. How much longer before they start to outwit the chemo, no one knows. FWIW, I have never been told A or B, just stage IV due to the recurrence in more than one distant area.
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
    Lung biopsy confirms that nodules are metastatic, enrolled in clinical trial at Huntsman. 11/14
    Sounds like a lot of fun, doesn't it?

  10. #10
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    just scroll down for the definition of IVB as opposed to IVA. basically just more than one organ beyond the colon. Liver plus lymph glands would qualify


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    Last edited by Didee; 12-27-2011 at 01:08 PM.

 

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