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Thread: AFP number growing fast...

  1. #1
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    Hey guys.

    My story is similar to the ones many of you has but complicated by the fact that i am in the US and my dad is France. He is also Italian... Lots of pride and very little communication until very recently when he opened up for the first time in 40 years.
    He s an heavy drinker, very heavy smoker. Got diagnosed with a 2cm 'spot' on his liver 3 years ago. AFP number was 10 ug/l (you guys are using ng/ml i think but the numbers don't change from one unit to another). He was diagnosed with cyrhosis... ascite ... he had everything. They even sent him to the hospital and drain 2 gallons of fluid from his abdomen.
    He avoided the doctors for 3 years...continuing his heavy drinking until recently when things started to turn into something pretty bad. Blood test came normal except for his AFP that jumped from 10 in 2009 to 3050 ug/l. Doctors checked his liver and found a 45mm 'lesion' that suggested liver cancer. Since then, the doctor confirmed that was indeed cancer. No need for biopsy but a lot of analysis (MRI, video inspection of his throat, esophagus (he has problem swallowing... possible esophagus varicose) and a varicose covered stomach). The doctors do not think he will survive either surgery or chemo with his current general health. A new blood work analysis was done yesterday... and the AFP doubled in just 2 weeks time! it s is now close to 6000 ug/l . Since AFP level is directly related to the stage of the tumor (or the spread of it, i am hearing AFP level can also come from other sort of cancer beside, mainly, liver).
    I am reading testimonies about 5000 ug/l (or 5000ng/ml) with a unhappy ending within weeks. With 6000 ug/l, i am beginning to think i need to travel to France to see him ASAP before it s too late.
    Any advice ?
    Thanks
    Last edited by juntha; 04-13-2012 at 11:57 AM.

  2. #2
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    Another day, another number crashing

    Gamma Glutamyl transpeptidase thru the roof and platelets crashed to 80 000... Still waiting for a day with at least ONE good news. Today is time for a camera exam of his throat and stomach... and monday time for an MRI

  3. #3
    Administrator Top User Didee's Avatar
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    Hi. I am sorry that I have absolutely no experience or knowledge of this cancer.
    If with all your researching that you feel you should go to him then please DO IT.
    There may never be another chance or there may be many. No one knows anything for sure.
    The last thing you need is, if the worst does happen, that you had the chance but thought it would be ok and you didn't go.

    All I can do is send cyber hugs and say how sorry I am that your family is facing all this.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    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. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

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    Out of all the things I have lost, I miss my mind the most.

  4. #4
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    More analysis.... Chance of surviving

    More details for those this could help.
    Dad is too fat for MRI (I should mention my dad is french living in Paris... I however live in the US). he went thru a whole lot of analysis. Got pix of his eosophagus covered with varicoses (which i suspected when my mom started to tell me he sometime has trouble to swallow), numerous ulcer on his stomach. With 80 cigarettes a day, bad health habits and tons of alcohol with a cyrrhosis diagnised 5 years ago : Initial prognostic from the doctor is 70 percent chance to survive surgery or death within 6 months.
    More precise idea soon with his heart doctor. My dad has tachycardia, arrhythmia tons of medications (including a blood thinner that might explain why his platelets counts were low) and was diagnosed with irregular heartbeat today during his doctor appointment talking about his chances to survive surgery.
    Everyone is happy... missing the point that with 10 percent average liver cancer survival within 5 years, adding 70 percent chance of surviving surgery makes his chance even slimmer to be alive in 2017.
    Distance between me and him does not help things and i have to react with a cool head and an analytical mind. (which makes me look heartless and cold from my familly s point of view in france but that s another issue.)
    More details to come.

  5. #5
    Super Moderator Top User sheila's Avatar
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    juntha- well all those numbers and figuring doesnt sound good but aside from all that- the doctor has a plan.
    plan is good.
    If that were my dad I would try to get there right before the operation be there through it. let him know your there and will be supportive, help out a bit with the family stress.-Probably the best thing you could do right now and something you will not regret doing in the future.
    Alot of issues hes dealing with -just withdrawl alone when hes in the hospital not being aloud to smoke or drink if he is that addicted can be a terrible experience in itself.
    How can one be heartless and cold if they care? I wouldnt worry about them and their thoughts The goal is to spend tiime with dad and be there for him-If he knows and understands that-really thats all that matters.
    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. #6
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    Today is surgery day.

    Left suddenly for France to see him for a week 2 weeks ago. Work was very cooperative in making it happens.
    After 8 years away from him, i almost got a heart attack seeing him in serious bad shape at the airpost. Hernias all over the place and an odd shape belly.
    Moral is low... as expected. For my mom and brother living with him, it s hard everyday. For me, after one week with him, the feeling is mixed. His reaction was very erratic and illogical. He is italian... His life is like a movie... and it is hard to see when what he says is true or just exageration.
    I can only imagine what he feels by comparing to my behavior if i was in his shoes... It wouldn t be erratic at all. It would be always the same... scared to death.
    Talked to him about surgery... (a 3 inch tumor surgically removed and liver observation)
    Not quite sure how i feel about it... Like i mentionned earlier, he s too big to go into an MRI. They can't see anything precise with only an echography and a scanner... His prognosis (60-70 percent surgery survival or death by july) is not good... especially since they ll open him up to actually see what they were not able to see with an MRI.
    Would you risk not to wake up the following morning just to know if you can survive past july ? I am a scientist and i am not sure i like the odds.
    It is his decision at the end but i am not sure i would have gone with surgery.
    Today is surgery day. They got him off blood thinner medicine and gave him 2 injections to control his heart problems. Surgery is for 11pm tonight my time (8am France time) and will last 5 hours. They are worried of course about complications related to his cyrrhosis, heart problems and basically everything in his belly that suffered and got torn up when he litterally inflated with almost 2 gallons of fluids 3 years ago because of his cyrrhosis.
    If he survive surgery, then it is 3 days under morphine....

    More to come.

  7. #7
    Super Moderator Top User sheila's Avatar
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    juntha- said a prayer that he will survive the surgery if this is what is best for him.
    wanted to say- easy for us to say is it worth it? but only he knows that to him maybe even a month longer is worth it but if they can do something for him and they arent giving up yet this part is good.
    moms chances of even waking up out of this last surgery was grim but we prayed hard trusted her doctor and supported her. and she did make it yet again. odds have been against her from day one -6 years ago.
    I lean towards the scientific way of thinking yet I am very flexable because everything has ye to be proven with alot of lifes mysteries.
    hang in there -Im glad you were able to make it home and good luck with his surgery. keep us posted
    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. #8
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    Post surgery news

    EIGHT hours ! He had an 8 hours surgery ! And not all they wanted to do was done. Mostly because he was too weak to get thru everything.
    They removed his 3 inch tumor from his liver but decided against repairing the damages done by his fluid accumulation he suffered 2 years ago.
    They looked at the liver and it is pretty much shot. Entirely cyrrhosed.. Hardly a surprising news considering the amount of alcohol he gets in his system everyday. Still, when the surgeon is shocked, i cannot even imagine what he saw in there...
    The surgery went well (they removed the tumor) but he is too weak right now and they wont give any prognosis. The problem is that now that a part of the liver was cut, the rest will have to work harder to compensate... and since the rest is in really bad shape...
    He is being kept 'under' until monday.
    According to the doctors, the next 5-6 days are going to be the true test.

    More later

  9. #9
    Super Moderator Top User sheila's Avatar
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    juntha- I know that waiting is soo very difficult -but he did make it through the surgery actualy maybe his liver will function a bit better altho some missing it can grow back and hopefully with the cancerous part out it will havew a better chance to function
    glad they are keeping him under for the first few days for they truly would be the toughest.
    He was strong enough to get through the surgery so hopefully he will pull through this critical time. I think it just may take him a bit longer because of his other health issues- plus being off the alcohol he will have to be monitored closely so they can also slowly detox him. keep us posted 1st big step is over.
    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.

  10. #10
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    a week later...

    More news almost a week after the operation:
    Still in intensive care. But awake... Was supposed to be out of intensive care today. His 'numbers' for his heart and liver has not changed since right after the surgery. The doctors to this date still dont want to give any prognostics. Nothing has changed in one week... beside his heartbeat that went down (with the help of his usual heart medicine, so this is not really an improvement.)
    Kidneys are the thing that worry the doctors now. My dad complained a lot of bruning sensation while urinating months before surgery. All the exams he went thru did not show anything. (at least with the exams that i was able to see...). The doctors are talking to us about the kidney issues like this is something we all knew about. Truth is that we did not. I suspect my dad hid this from us also. Another thing to worry about i guess.

    If you show the real side of yourself when you are in serious crisis, then it has been an eye opening experience for me. He is a shadow of what he was before the operation. We all knew he was on the needy, shallow and sometime mean side... but that was nothing compared to what we are all witnessing right now. It is particularely bad on my mother side where he litterally treats her like absolute crap. With me far from France, he complains a lot to his familly... (in Italy) and they are now wondering what the hell is going on. I totally understand the great deal he is going thru but i am a big believer of 'growing some balls and deal with issues head on and on your own' and it is not going at all like i thought. I usually do not help people that don't help themselve first and I have stayed on the side for the moment but I am afraid this experience is going to take a toll on my mother's spirit. And i am not going to let him (even in the shape he is) acting like he does right now, for long.
    I have been very lucky so far not to have to deal with death or close to death event in my immediate familly and i have reached 40 year old without any lifechanging experience (knocking on wood). This is a lot to take all at once.
    It is already a lot to ask to be supportive when all my dad did for 30 years was to smoke 120 cigarettes and 2 bottles of alcohol a day. I still sometime think he did this to himself, so... why should I care ? I cannot shake the idea of deep disapointment and anger starting to sink in. And i am not ashame of those feelings... This is what disturbs me the most about myself. I feel selfish but incredibly angry...
    For now, this is still about him until he recovers but things are not going to be the same once he gets out.

    More news to come.

  11. #11
    Super Moderator Top User sheila's Avatar
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    sorry your so angry Sounds like part of that anger is carried over from childhood. anyway I wouldnt worry what he says to the rest of the family-if they dont know what hes like by now(you know what I mean). dont think you really need to worry about it-I hope they figure something out for him.
    The extra nasty is comming from his own fears
    I see what your saying about the poor health habits but usually one doesnt do that on purpose -theres always an underlying reason for an addiction and you really should try to understand that. Besides hes really paying for that now.
    Just him having to stop it while he is in the hospital may be part of the problem his body is dependent on it now.Its got to be very difficult for him.
    On the otherhand you and the rest of the family are suffering in your own ways- it IS alot to deal with -we have been dealing with this almost 6 years and its only a bit easier we still worry and panic and get depressed everytime anything goes wrong.Huge emotional drain. hang in there keep us posted and I hope things turn around for him.
    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.

  12. #12
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    Still at the ER

    Surgery was 2 weeks ago and he is still in intensive care. He should have left a week ago. Doctors stopped talking to us. Dad probably asked them to stoP communicating with anyone but his sister. Oh well... If the news are bad, we will eventually hear about it.
    He had two liters of fluids removed from his abdomen two days ago. He has now a new tube that remove the liquid all day long. His urine turned dark red yesterday... He drinks a lot and eat regular food. His medicines have not changed ... Not sure why his urine is red...
    Starting to regret having surgery and wondering why he did not listen to me.

    All this tends to scare me a little. With his sister staying longer than planned and some weird comments from the doctors tha my brother caught yesterday, I am beginning to wonder if he is hiding a bad diagnosis...

    More to come.

  13. #13
    Super Moderator Top User sheila's Avatar
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    Juntha- sorry to hear he is still there but while hes having these problems its probably the safest place to be.-hopefully the dark red is a sign of it healing-as opposed to the bright red. unless hes having difficulties somewhere higher ip in his body He may also be having the liver or kidney issues (which you mentioned that earlier) they are probably working on solutions to that at this time which is delaying him getting out of the ICU. The fluid removed from his abdomen is usually caused by some type of liver misfunction and more than likely will be a proceedure he has to do now and then. There are some things they may suggest he take for that as liver support which could help him have less fluid retention problems . Some can clear it up pretty much completely depending on the severity of the problem.
    Time will tell its the waiting and wondering thats soo difficult. please keep us posted and I hope he strts to heal.
    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.

  14. #14
    Regular User
    Join Date
    Feb 2012
    Posts
    15

    Kidneys

    Well finally. My brother finally managed to have the doctors on the phone. They were hiding from my dad's sister constant nagging. Who would blame them, she is now the only person my dad want to see and think she is now a nurse... The news is not good... Contrary to what his sister told us... One kidney is dead. The other is half working. They are now pessimistic and think he won't make it. My dad's sister keep prolonging her stay (she s from Italy , he is in France ). He is kicking himself for not listening to me when I asked him not to go thru surgery.
    Alright. Now we moved from IF to WHEN...

  15. #15
    Regular User
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    Feb 2012
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    15

    Doctor meeting

    Doctor got my mom, my brother and my dad's sister in his office this morning. My dad's kidneys are shot and he could go into a coma or die at any time now. He bloated a little overnight.
    Nurses are getting very busy all of a sudden with him and it freaks out everybody.
    I was asked to come over once more but i won't, this time around. I made my arrangement with my dad when I flew back to France, 3 weeks ago. We both knew that this was either the last time i saw him if things dont go well or the first of many other times if he got better. There is nothing i can do from here beside helping my mom and brother the best i can to deal with this. Distance is not helping.

  16. #16
    Regular User
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    Feb 2012
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    We can't understand him when he speaks. He doesn't seem to recognize the people talking to him. His brain is probably starting to feel the effect of his kidneys problem. My mom cannot stop crying. My brother is holding but it is the first time I hear him cry ever. I called my dad's sister. This must be difficult for her also no matter what and it is not the time for anger. Not much to say beside thanking her to be there for my dad.
    I am now waiting for a phone call from france i only imagined in my worst nightmares.

  17. #17
    Super Moderator Top User sheila's Avatar
    Join Date
    Jul 2008
    Location
    bethel park pa
    Posts
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    juntha- Im sorry to here this news. Its a shame he went through the surgery and it really isnt a benefit to him. praying that he doesnt suffer much. Im glad you were able to see him when you di..ad your right not much more you can do but to be there for for the family.
    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.

  18. #18
    Regular User
    Join Date
    Feb 2012
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    15
    This is not the right forum to post these updates anymore but for some reason it brings me peace. Forgive me if those posts do not follow the rules...This forum has turned into an outlet to express myself (being far from my family in France) and I sincerely hope this will help someone else down the line. I sure know you guys helped, i am returning the favor...

    My dad fell into an in and out coma today. The toxins got the best of his brain.
    The nurses told my mother that they won't leave him suffer for long.
    Distance is not my friend right now as she and my brother have to handle a situation that is more and more impossible.

    The analytical freak that I am is trying to figure out what happened. For me, there has always been a need to know and understand to be at peace. I am not the religious kind and 'God only knows' is not working for me.
    To each his way to grief.

    How can one go from Liver cancer surgery to Kidney failure in just a few days... I know he had high blood pressure and that, combined with his heavy drinking, this usually works against your kidneys... But it is usually more a progressive failure rather than a sudden total shutdown.
    The other possibility here is a sudden drop in blood flow... This could have only occurred during his surgery.

  19. #19
    Super Moderator Top User sheila's Avatar
    Join Date
    Jul 2008
    Location
    bethel park pa
    Posts
    6,620
    juntha- Im guessing that both liver and kidney are part of our filtration system is probably the reason.
    If his kidneys were already comprimised then had to assist the liver more than they could handle. The lack of proper filtration can cause a backup of toxins which is probably whats happening here. Im so sorry your family is going through this- and its a good thing that you can vent here -I keep the same post going -actually since 08 I think its easier for people to follow the people and get to know them better..less confusing too.
    hang in there.
    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.

  20. #20
    Regular User
    Join Date
    Feb 2012
    Posts
    15
    The doctor and nurses decided today to give my mom access to my dad's bedroom tomorrow all day instead of a couple of hours a day as usual. I think this is it.
    I read a lot about death the past few days and I heard that my dad might b able to hear people talking... Even in a coma. My mom will go tomorrow. She talked to him all the time when she s with him. She promised him to go to italy when he gets better. Or asks something as weird as what he wants to eat when he gets back. My mom and my dad had a rocky marriage but it s heartbreaking to see them react. The good thing is that I made her laugh today on the phone. When I went back three weeks ago, I forced him to drive me thru Paris by nite as we used to do when I was younger. He was ok with that at first, then I started to film the whole thing with my phone. I watched today the videos and I hear him complaining " I hope you are not showing that to your friends in America, imagine what they gonna think I they know you are forcing an old person with cancer to b your personal driver!'. This is so typically him. We laughed on the phone for the first time in a month.
    Tomorrow might be the day. He is such a pain in the ass. Lol
    I am glad I got to see him two weeks ago. And I am glad I listen to people including some of you guys who convinced me to do so..
    The journey continues...

 
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