CT scan results not favorable

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Comments

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited March 2018 #22
    Sorry about the not so good

    Sorry about the not so good news. My prayers are being sent your way. Keep being positive and believing in miracles, Beth.

  • Phil64
    Phil64 Member Posts: 838 Member
    ((( Hugs )))

    Beth, Someone on this forum once told me “we fight because that is what we do.” 

    Know that I am sending you photons of positivity and prayers during this Holy Week and Easter season. 

    There are many chemo drugs. Praying that one will prove to be super effective against your cancer. 

    Love and Light to you!

    Phil

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    I'm sorry Beth, that's harsh

    I'm sorry Beth, that's harsh news to hear. Bring on the Oxi, if you haven't yet. I'm one who got through it with minimal effects, but in the longer view, I'd go with zx10guy's idea and contact that liver pump Dr. at Sloan. I think PhillyG went there as well, but some have had remarkable turnarounds with the HAI pump. Your in my thoughts..............................Dave

  • LSU2001
    LSU2001 Member Posts: 32 Member
    edited March 2018 #25
    Keep Fighting it's worth it!!

    I too am fighting stage 4 rectal cancer.  When I was diagnosed/staged, I was told that I had 8 major lesions/tumors on my liver in addition to the tumor in my upper rectum that led to all of this.  In addtion to the 8 large lesions I had numerous other lesions spread throughout both lobes of the liver.  I was told then that I was inoperable and that treatment would be mainly pallative in nauture was meant to try and extend my life as long as possible but average was 2-4 years.  I looked at the doc and told him straight up, I am 48 years old, we have to come up with a better plan.  So I started out with a 5 FU infusion pump 5 days a week while I underwend radiation therapy for my rectal tumor. This was done mainly to try and alleviate the severe pain, rectal spasms, and tenesmus.  At that time I was taking morphine extended release pills with liquid morphine available for breakthrough pain.  The radiation therapy relieved those symptoms within a week and a half of treatment starting.  As time went on of course the radiation had it's own effects and while miserable it was manageable with creams, etc.   

    Once the radiation therapy was over, I started on Folfox with Avastin and overall tolerated it well.  My tumors responded well to this regimen and I was able to keep working full time while on chemo but had to fight through the fatigue and nausea I had right from the outset.  

    Fast forward through 14 Folfox treatments and because I had been looking around our local hospitals for a liver surgeon willing to take a shot at a resection and having no luck, I asked for a referral to MD Anderson for a second opinion.  Went over there for a week of scans, tests, doctor's appts. etc.  when all was said and done, the Onc. at MDA pretty much confirmed my diagnosis and prognosis stating that I was on the right chemo regimen and that the results of the treatment showed a great reduction in the size of my tumors BUT he could still see no way I would become operable but he would present my case to the liver surgeons and see what they said.  

    About a month after that visit, I get a phone call from the Onc at MDA, telling me that the liver surgeons think that they can help me and my liver.  I went back to Houston for another round of scans, tests, etc and a visit to the liver surgeon.  Their plan was to operate with a two stage resection with a portal vein embolization in between the two operations.  I was elated and sheduled the first operation in Febuary of 2017.  That surgery went well as did the portal vein embolization two weeks after the operation.  When the pathology report came back about the tumors that were removed, it was great news, on of the tumors was completly 100% inactive and dead.  the other three they removed were 90% necrotic and were mostly inactive/shrinking.  The second operation in April was a tougher recovery mainly because the took out the entire right lobe of the liver including the gall bladder.  I devloped some ascites and had to get on lasics for awhile.  But in the end the liver grew back and the new prognosis was that they were now looking at a curative intent in the treatment.  

    It is now almost two years since my original diagnosis, and while I had a recurrance of a few small lesions on the liver and am now on folfiri with avastin, mainly due to the neuropathy caused by the 18 folfox treatments.  I have also had two microwave ablations on smaller hard to resect lesions and prior to the recurance there were no lesions on my liver.  giAnyway, after all of that, the docs sent me to the colorectal surgeon to evaluate my original rectal tumor.  More tests, more scans, more probes etc. to find out that the primary tumor demonstrated a complete response to treatment and was now healed with healthy tissue with no evidence of cancer activity.  

    I said all of the above to say that despite fighting the side effects, the treatment was well worth it.  I most probably with be left with permanent neuropathy in my hands and feet, I hope the chemo brain and other milder side effects go away if I ever get to NED and get off chemo for awhile.  That may never happen but at least the disease is managed and they have finally addressed my two main side effects of treatment mostly continious nausea/quesy feeling and fatigue.  

    My main local Onc accepted a position at a New Orleans hospital and I had to choose another doc at my local cancer center.  I wasn't too worried because MDA was managing my case and the local cancer center provided treatment and watched over me during the treatment cycles.  Anyway, I had been fighting the fatigue and nausea for a long while and nothing seemed to help inculding marinol, zofran, aloxi, etc.  The new doc noted right away that I had been anemic for many months but not so low as to stop treatment.  He orderded 5 iron infusions prior to and during my first folfiri treatments.  He also said my nausea did not sound like regular chemo induced nausea and that it really sounded like gastritis to him.  He put me on two zantac a day and lo and behold the fatigue and nausea went away completly.  It is amazing that one doc didn't even address these issues as long as it didn't intefere with treatment and another doc "fixed" the long lasting side effects within two weeks of our first meeting.  

    So here I sit feeling great on pretty much a daily basis, still taking chemo but no problem at all.  The folfiri has not caused the feared diarrhea, in fact I have to take a daily dose of mirilax to keep things moving LOL.  

    Just my experience and opinions,  

    Tim

  • airborne72
    airborne72 Member Posts: 303 Member
    Wow!

    Thank you for sharing that uplifting and promising experience.  And, congratulations on your perseverance and victory.

    Jim

  • abita
    abita Member Posts: 1,152 Member
    LSU2001 said:

    Keep Fighting it's worth it!!

    I too am fighting stage 4 rectal cancer.  When I was diagnosed/staged, I was told that I had 8 major lesions/tumors on my liver in addition to the tumor in my upper rectum that led to all of this.  In addtion to the 8 large lesions I had numerous other lesions spread throughout both lobes of the liver.  I was told then that I was inoperable and that treatment would be mainly pallative in nauture was meant to try and extend my life as long as possible but average was 2-4 years.  I looked at the doc and told him straight up, I am 48 years old, we have to come up with a better plan.  So I started out with a 5 FU infusion pump 5 days a week while I underwend radiation therapy for my rectal tumor. This was done mainly to try and alleviate the severe pain, rectal spasms, and tenesmus.  At that time I was taking morphine extended release pills with liquid morphine available for breakthrough pain.  The radiation therapy relieved those symptoms within a week and a half of treatment starting.  As time went on of course the radiation had it's own effects and while miserable it was manageable with creams, etc.   

    Once the radiation therapy was over, I started on Folfox with Avastin and overall tolerated it well.  My tumors responded well to this regimen and I was able to keep working full time while on chemo but had to fight through the fatigue and nausea I had right from the outset.  

    Fast forward through 14 Folfox treatments and because I had been looking around our local hospitals for a liver surgeon willing to take a shot at a resection and having no luck, I asked for a referral to MD Anderson for a second opinion.  Went over there for a week of scans, tests, doctor's appts. etc.  when all was said and done, the Onc. at MDA pretty much confirmed my diagnosis and prognosis stating that I was on the right chemo regimen and that the results of the treatment showed a great reduction in the size of my tumors BUT he could still see no way I would become operable but he would present my case to the liver surgeons and see what they said.  

    About a month after that visit, I get a phone call from the Onc at MDA, telling me that the liver surgeons think that they can help me and my liver.  I went back to Houston for another round of scans, tests, etc and a visit to the liver surgeon.  Their plan was to operate with a two stage resection with a portal vein embolization in between the two operations.  I was elated and sheduled the first operation in Febuary of 2017.  That surgery went well as did the portal vein embolization two weeks after the operation.  When the pathology report came back about the tumors that were removed, it was great news, on of the tumors was completly 100% inactive and dead.  the other three they removed were 90% necrotic and were mostly inactive/shrinking.  The second operation in April was a tougher recovery mainly because the took out the entire right lobe of the liver including the gall bladder.  I devloped some ascites and had to get on lasics for awhile.  But in the end the liver grew back and the new prognosis was that they were now looking at a curative intent in the treatment.  

    It is now almost two years since my original diagnosis, and while I had a recurrance of a few small lesions on the liver and am now on folfiri with avastin, mainly due to the neuropathy caused by the 18 folfox treatments.  I have also had two microwave ablations on smaller hard to resect lesions and prior to the recurance there were no lesions on my liver.  giAnyway, after all of that, the docs sent me to the colorectal surgeon to evaluate my original rectal tumor.  More tests, more scans, more probes etc. to find out that the primary tumor demonstrated a complete response to treatment and was now healed with healthy tissue with no evidence of cancer activity.  

    I said all of the above to say that despite fighting the side effects, the treatment was well worth it.  I most probably with be left with permanent neuropathy in my hands and feet, I hope the chemo brain and other milder side effects go away if I ever get to NED and get off chemo for awhile.  That may never happen but at least the disease is managed and they have finally addressed my two main side effects of treatment mostly continious nausea/quesy feeling and fatigue.  

    My main local Onc accepted a position at a New Orleans hospital and I had to choose another doc at my local cancer center.  I wasn't too worried because MDA was managing my case and the local cancer center provided treatment and watched over me during the treatment cycles.  Anyway, I had been fighting the fatigue and nausea for a long while and nothing seemed to help inculding marinol, zofran, aloxi, etc.  The new doc noted right away that I had been anemic for many months but not so low as to stop treatment.  He orderded 5 iron infusions prior to and during my first folfiri treatments.  He also said my nausea did not sound like regular chemo induced nausea and that it really sounded like gastritis to him.  He put me on two zantac a day and lo and behold the fatigue and nausea went away completly.  It is amazing that one doc didn't even address these issues as long as it didn't intefere with treatment and another doc "fixed" the long lasting side effects within two weeks of our first meeting.  

    So here I sit feeling great on pretty much a daily basis, still taking chemo but no problem at all.  The folfiri has not caused the feared diarrhea, in fact I have to take a daily dose of mirilax to keep things moving LOL.  

    Just my experience and opinions,  

    Tim

    WOW! What a wonderful story!

    WOW! What a wonderful story! Amazing.

  • Cindy225
    Cindy225 Member Posts: 172 Member
    Inspiring!

    Thanks Tim for telling your story and re-inforcing the importance of second opinions and being your own best advocate. It gives us all so much hope.  

    Keep fighting on! 

    Cindy

  • BRHMichigan
    BRHMichigan Member Posts: 368
    LSU2001 said:

    Keep Fighting it's worth it!!

    I too am fighting stage 4 rectal cancer.  When I was diagnosed/staged, I was told that I had 8 major lesions/tumors on my liver in addition to the tumor in my upper rectum that led to all of this.  In addtion to the 8 large lesions I had numerous other lesions spread throughout both lobes of the liver.  I was told then that I was inoperable and that treatment would be mainly pallative in nauture was meant to try and extend my life as long as possible but average was 2-4 years.  I looked at the doc and told him straight up, I am 48 years old, we have to come up with a better plan.  So I started out with a 5 FU infusion pump 5 days a week while I underwend radiation therapy for my rectal tumor. This was done mainly to try and alleviate the severe pain, rectal spasms, and tenesmus.  At that time I was taking morphine extended release pills with liquid morphine available for breakthrough pain.  The radiation therapy relieved those symptoms within a week and a half of treatment starting.  As time went on of course the radiation had it's own effects and while miserable it was manageable with creams, etc.   

    Once the radiation therapy was over, I started on Folfox with Avastin and overall tolerated it well.  My tumors responded well to this regimen and I was able to keep working full time while on chemo but had to fight through the fatigue and nausea I had right from the outset.  

    Fast forward through 14 Folfox treatments and because I had been looking around our local hospitals for a liver surgeon willing to take a shot at a resection and having no luck, I asked for a referral to MD Anderson for a second opinion.  Went over there for a week of scans, tests, doctor's appts. etc.  when all was said and done, the Onc. at MDA pretty much confirmed my diagnosis and prognosis stating that I was on the right chemo regimen and that the results of the treatment showed a great reduction in the size of my tumors BUT he could still see no way I would become operable but he would present my case to the liver surgeons and see what they said.  

    About a month after that visit, I get a phone call from the Onc at MDA, telling me that the liver surgeons think that they can help me and my liver.  I went back to Houston for another round of scans, tests, etc and a visit to the liver surgeon.  Their plan was to operate with a two stage resection with a portal vein embolization in between the two operations.  I was elated and sheduled the first operation in Febuary of 2017.  That surgery went well as did the portal vein embolization two weeks after the operation.  When the pathology report came back about the tumors that were removed, it was great news, on of the tumors was completly 100% inactive and dead.  the other three they removed were 90% necrotic and were mostly inactive/shrinking.  The second operation in April was a tougher recovery mainly because the took out the entire right lobe of the liver including the gall bladder.  I devloped some ascites and had to get on lasics for awhile.  But in the end the liver grew back and the new prognosis was that they were now looking at a curative intent in the treatment.  

    It is now almost two years since my original diagnosis, and while I had a recurrance of a few small lesions on the liver and am now on folfiri with avastin, mainly due to the neuropathy caused by the 18 folfox treatments.  I have also had two microwave ablations on smaller hard to resect lesions and prior to the recurance there were no lesions on my liver.  giAnyway, after all of that, the docs sent me to the colorectal surgeon to evaluate my original rectal tumor.  More tests, more scans, more probes etc. to find out that the primary tumor demonstrated a complete response to treatment and was now healed with healthy tissue with no evidence of cancer activity.  

    I said all of the above to say that despite fighting the side effects, the treatment was well worth it.  I most probably with be left with permanent neuropathy in my hands and feet, I hope the chemo brain and other milder side effects go away if I ever get to NED and get off chemo for awhile.  That may never happen but at least the disease is managed and they have finally addressed my two main side effects of treatment mostly continious nausea/quesy feeling and fatigue.  

    My main local Onc accepted a position at a New Orleans hospital and I had to choose another doc at my local cancer center.  I wasn't too worried because MDA was managing my case and the local cancer center provided treatment and watched over me during the treatment cycles.  Anyway, I had been fighting the fatigue and nausea for a long while and nothing seemed to help inculding marinol, zofran, aloxi, etc.  The new doc noted right away that I had been anemic for many months but not so low as to stop treatment.  He orderded 5 iron infusions prior to and during my first folfiri treatments.  He also said my nausea did not sound like regular chemo induced nausea and that it really sounded like gastritis to him.  He put me on two zantac a day and lo and behold the fatigue and nausea went away completly.  It is amazing that one doc didn't even address these issues as long as it didn't intefere with treatment and another doc "fixed" the long lasting side effects within two weeks of our first meeting.  

    So here I sit feeling great on pretty much a daily basis, still taking chemo but no problem at all.  The folfiri has not caused the feared diarrhea, in fact I have to take a daily dose of mirilax to keep things moving LOL.  

    Just my experience and opinions,  

    Tim

    Thank you for sharing

    Tim, great to hear your experience. I was very pleased with my rectal tumor surgery. It would be good to consider getting myself to a place where I'm a candidate for liver surgery or whatever treatment might help! You had a number of times where you could have given up, but you kept fighting. I really need to do the same.

  • steveja
    steveja Member Posts: 41
    Well that s*x.   But don't

    Well that s*x.   But don't get too hyper till you see a PET scan.  A CT will show some sort of nodes in anyone (the resolution is too good).  They saw an increase in lung nodes on by CT last November.  PET scan was incoonclusive (too small).  Then in February they had vanished.   They suggested swollen lymphnodes from infection.

    Also - there is recent work on 'typing' CRC,   Differnt types respond variably to diffrent tretments.

    https://journals.lww.com/oncology-times/Fulltext/2018/03200/The_Four_Colorectal_Cancer_Consensus_Molecular.4.aspx

    This "waitng for a diagnosis" stuff  is a nasty roller coaster ride emotionally, just missing  the seatbelts and safe ending.

     

    best wishes

  • Marley1983
    Marley1983 Member Posts: 16
    Sending prayers

    Sending prayers and strength.