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Thread: New Update because treatment goals have changed (stage IV)

  1. #1
    Regular User lsu2001's Avatar
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    New Update because treatment goals have changed (stage IV)

    Good day everyone,

    I have not posted in quite awhile mainly because I have been very busy with appts., work, and dealing with chemo side effects. First the good news, I have continued to have a very good response to my treatments so far. Each, CT scan has shown continued reduction in both tumor size and number. All liver lesions have significantly shrunk with some of the smaller lesions disappearing completely. The side effects of chemo have continued to get worse but all in all still quite bearable.

    Now for the bad news, in the thread Newly diagnosed, I had mentioned that I was expecting to begin liver resection after my 8th treatment. I followed up with the liver surgeon after my 8th treatment and scan and initially his nurse practitioner told me that I would begin surgery on November 21st and that I needed to come in the following week for a final plan of attack and to meet with the colorectal surgeon to determine if they would do the rectal resection at the same time as the liver. Fast forward one week and the doctor had reviewed my scans and determined that he could not do the resection of the liver and the colorectal surgeon said that there was no need to remove the primary tumor without the liver resection. I was quite upset to say the least. I understood the reasoning behind the call so I didn't really question the decision. What pissed me off was the cavalier way in which the Nurse practitioner had scheduled the surgery and jerked me around without proper consultation with the surgeon. I had already made arrangements for people to assist in the care of my chickens, had made arrangements to kennel my dog, made hotel reservations and my parents had made arrangements to stay in an RV park near the hospital. I had to undo all of these arrangements along with rescinding my application for medical leave at work. While this was not difficult to do, it was an annoyance that should have never been necessary.
    In addition to the arrangement issue, I had delayed my chemo treatment and due to this my normal chemo day changed which caused further disruptions in my work schedule and plans. I was very upset about all of the above.

    After consulting with my medical oncologist, I decided to go to MD Anderson cancer center for a second opinion and a review of my treatment thus far. I returned from MD Anderson yesterday after a 5 day stay in Houston. The docs there did a thorough review of my medical records, previous scans and ordered tests and scans of their own. After a review of their scans and tests, the docs told me that they could not see anyway that I would be able to become operable in the future. The extent of my disease in the liver was simply too widespread and even though I was having a fantastic response to treatment it, sadly would not be enough to have a resection. They also recommended that my chemo be changed to a maintenance regimen to alleviate the rather severe neuropathy in my feet and legs caused by the oxyliplatin until my disease progressed and then move to a second line treatment.

    I had anticipated this prognosis but it was still difficult to have it confirmed by the leading experts in my region. I will discuss all of these recommendations with my medical oncologist tomorrow prior to my 11th chemo treatment. The overall feelings of the MD Anderson docs was that my treatment goals needed to change from potentially curable to management of the disease for as long as possible. To say this is emotionally difficult is a huge understatement. Basically what this means, at least at this point, is that i will remain on chemo of one type of or another until the cancer eventually claims my life. What I don't know and can't know is how long that will be. It could be months or years in the future before my cancer progresses but it is something I will have to deal with from here on out. I am currently exploring some alternative treatments including Rick Simpson Oil but I really don't hold out much hope that they will be any more effective than my current mainstream therapy.

    Sorry for being so long winded but I needed to vent and post my story to this point.
    Tim
    48 year old Male
    High grade Rectal adenocarcinoma
    Met with Surgeon 4/21/2016 CT Scan and Endorectal Ultrasound ordered
    4/28/16 CT scan done
    5/3 surgeon called to cancel ultrasound, CT scan showed liver Mets and "many" lymph nodes involved. Diagnosed Stage IV.
    5/6/16 Pet scan complete
    Oncologist confirmed stage IV proposed 6 weeks of radiation and 5 FU to start
    5/23/2016 Started Continuous infusion of 5 FU
    5/26/2016 began radiation treatment (scheduled for 28 )
    5/30/16 met with liver surgeon he pronounced that I may be potentially resectable Yay!!!
    6/6/2016. CEA 233.5
    6/20/2016 CEA 86
    6/30/2016 2nd CT scan of liver and pelvic area (waiting on results)
    7/5/2016 Last Radiation treatment CEA 17.5
    7/19/2016 begin FOLFOX with Avastin (scheduled for 12 cycles) CEA 9.8
    9/6/2016 CEA down to 4.0
    9/14/2016 Scan shows all tumors responding to treatment and shrinking YAY!!
    9/27/2016 CEA down again to 3.2

  2. #2
    Top User mojo's Avatar
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    Hi Tim, I'm sorry the nurse practitioner cause you such heartache. That's not right and I would hope she would at least apologize for it. Md Anderson is a good place to go and I'm sorry you didn't get better news. It sounds like you've been reacting pretty well with the chemo as far as taking care of some of the tumors and keeping it status quo. But I will tell you to look at some of the people on this form and other places who have lasted long long long time with chemotherapy there is no time limit on your life it's not over till it's over. Don't let this take away your positive attitude. Regroup And keep on going. People here will support you. I just wish it would've been better news but it could always be a lot worse. Mojo

  3. #3
    I am sorry to hear of your woes. My husband who lived with Stage IV colon cancer for 11 1/2 years had mets to colon and liver with lymph nodes involved. He had a colon resection within one month of diagnosis. Six weeks after colon resection, he started chemo to reduce the tumor sizes in liver. After almost two years of original diagnosis and many rounds of chemo, he had a major liver resection, about 80 percent of liver removed. More chemo cocktails.... He was approximately NED for 18 months and then the beast reappeared in his liver. He probably went a little over a year without chemo before the ugly beast appeared and appeared quite large. More chemo rounds and then another liver resection where they removed approximately 75 percent of his liver. More chemo cocktails. Finished up a 12 round treatment, no chemo for 6 months. The beast resurfaced again in his liver. This time and several other times over the next few years, they did RFA to the tumors in the liver. Everytime one popped up they did RFA. I believe he had about 6 separate RFA procedures. He was on a maintenance treatment of Avastin for many years to keep the tumors from growing. Eventually the cancer won over the avastin and spread to his lungs. Once the cancer was in his lungs, he elected to not do any more chemo or avastin as the avastin was not effective any more. His oncologist was quite upfront when my hubby asked what would the chemo do in regards to longevity. His oncologist told him that he may get two additional months of life if he chose to do chemo. My husband decided that he was not going to do chemo. He wanted to feel as well as possible and he would probably be sick for two or three additional months of life. He did have 6 weeks of radiation to a very large tumor that was constricting his breathing. He lived with the cancer in his lungs for about three years before he was called home. We had a LOT of good times in those 11 1/2 years. Our relationship was good before the diagnosis but was fantastic afterwards and throughout the battle. We did a lot of horseback riding, both my husbands and my passion. We would go camping/trail riding as much and as often as possible. I had and still have a wonderful boss who wanted me to spend as much time as I could with my hubby. Of course there were a lot of hurdles during these years but with my husband's attitude, his super oncologist and the good Lord above he overcame many odds. After my husband passed this summer, his oncologist and I met and he referred to my husband as his miracle man. Don't ever give up!! Third opinions are not bad to get either. Perhaps you could send your images to another oncologist without the reports to get another opinion and not have to travel and take off work. By the way my husband's name was Tim so you are already a fighter! Will keep you in my prayers and wishing you the best of luck on this journey. Take care!
    Hubby diagnosed in 2005 with Stage IV, January...Journey on this road has had some major obstacles ..... God continues to help us endure each one.... enjoying life and doing as much as possible!

    My Carolina Cowboy gained his angel wings in August, 2017, 11 1/2 years with Stage IV. It was an amazing journey on this bumpy road. His attitude in fighting this beast was like no other. He did not want anyone's sympathy or pity so much that a lot of our friends did not even know he was in this battle. Many, many thanks to our super oncologist, surgeons, radiologists, staff, and etc. Most thankful to our God above for letting my soulmate be with me all this time! Amazingly, most of the time in this fight was great! We enjoyed trail riding every chance we had to go and so many other things that life offered to us. Even took a few rides with a 5FU pack. My cowboy was a tough one, John Wayne had nothing on him!

    Don't give up! Keep the fighting attitude!! Blessings to all!! May a cure be found!!

  4. #4
    Experienced User
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    Wow talking about pulling the rug out from under your feet.
    I'm sorry to hear the second opinion did not go well.
    I don't know much about the Rick Simpson oil butt it might be worth a try. I do know people on chemo who do smoke pot to help relieve symptoms. They say it helps appetite and takes the edge off chemo. I could not do it. I don't like the feeling.
    Hopefully they will come up with a plan B for you to put you on the road to NED
    Keep the good attitude up
    53 yrs old
    4/30/15 colonoscopy Mass found
    5/21/15 staged 3 C rectal cancer
    7/3/15 finished xeloda and radiation 28 rounds
    9/30/15 LAR
    10/29/15 picc line installed
    11/2/15 start chemo 5 fu Oxaliplatin
    3/7/16 Finish Chemo
    3/16/16 C T scan clear pulmonary embolism blood clots in lungs 2
    3/17/16 start lovenox
    4/29/16 Ileostomy Reversal.
    5/1/16 start warfarin
    7/13/16 colonoscopy clear.
    9/10/16 C T scan clear

  5. #5
    Regular User lsu2001's Avatar
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    Thank you all so much for your replies,

    So for a new update, I did have a bit of good news last week. My doctor at MD Anderson called and said he had presented my case to their multidisciplinary team that included a surgical oncologist who specializes in hepto-billary surgery. This surgeon, wants to have a consultation with me this week so I will return to Houston for an appt. with him on Wednesday morning. Hopefully, the prognosis will be more positive concerning potential liver surgery to remove the mets there. I guess I will see!! I am not getting my hopes up and will carefully question this doc concerning risks vs. rewards and potential for a cure vs. management. If there isn't much hope for a cure, I will have to think long and hard about whether or not to go ahead with a surgery. I hate the up and down concerning this surgery and of course the ramifications of both having the surgery and not having it. I must say that I understand now how and why people give up on chemo treatments because while it is helping control the cancer, living with the side effects is not living it is surviving. I am getting to the point where I would rather feel good for awhile and let the disease do what it will while I enjoy some quality of life. I am not ready to give up yet but I definitely can see why some people do refuse treatment.
    Cheers, and Happy New Year
    Tim
    48 year old Male
    High grade Rectal adenocarcinoma
    Met with Surgeon 4/21/2016 CT Scan and Endorectal Ultrasound ordered
    4/28/16 CT scan done
    5/3 surgeon called to cancel ultrasound, CT scan showed liver Mets and "many" lymph nodes involved. Diagnosed Stage IV.
    5/6/16 Pet scan complete
    Oncologist confirmed stage IV proposed 6 weeks of radiation and 5 FU to start
    5/23/2016 Started Continuous infusion of 5 FU
    5/26/2016 began radiation treatment (scheduled for 28 )
    5/30/16 met with liver surgeon he pronounced that I may be potentially resectable Yay!!!
    6/6/2016. CEA 233.5
    6/20/2016 CEA 86
    6/30/2016 2nd CT scan of liver and pelvic area (waiting on results)
    7/5/2016 Last Radiation treatment CEA 17.5
    7/19/2016 begin FOLFOX with Avastin (scheduled for 12 cycles) CEA 9.8
    9/6/2016 CEA down to 4.0
    9/14/2016 Scan shows all tumors responding to treatment and shrinking YAY!!
    9/27/2016 CEA down again to 3.2

  6. #6
    Regular User lsu2001's Avatar
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    Another quick update, I met with Dr. Claudius Conrad at MD Anderson and he feels that he can do a 2 stage liver resection with curative intent. He stated that due to my age and overall good health that he wants to be aggressive with the surgical options. So the plan is that I will have my first stage of the resection done on Feb. 20th. He also told me to lose as much weight as I can prior to the surgery because 5-FU causes fat deposits in the liver and I need to get those out by losing weight. He said my goal should be 30 lbs. I have lost about 35 lbs since my treatment started and my medical oncologist was trying to have me maintain my weight. It has been stable for a few months now with no loss and no gain. I am 6' tall and currently weigh about 190. If I make the goal he wants I will be about 160. I havent been that light since 7th grade lol.
    In any case more up and down emotions concerning this surgery but at least it seems to be moving in a positive direction right now.
    THanks,
    TIm
    48 year old Male
    High grade Rectal adenocarcinoma
    Met with Surgeon 4/21/2016 CT Scan and Endorectal Ultrasound ordered
    4/28/16 CT scan done
    5/3 surgeon called to cancel ultrasound, CT scan showed liver Mets and "many" lymph nodes involved. Diagnosed Stage IV.
    5/6/16 Pet scan complete
    Oncologist confirmed stage IV proposed 6 weeks of radiation and 5 FU to start
    5/23/2016 Started Continuous infusion of 5 FU
    5/26/2016 began radiation treatment (scheduled for 28 )
    5/30/16 met with liver surgeon he pronounced that I may be potentially resectable Yay!!!
    6/6/2016. CEA 233.5
    6/20/2016 CEA 86
    6/30/2016 2nd CT scan of liver and pelvic area (waiting on results)
    7/5/2016 Last Radiation treatment CEA 17.5
    7/19/2016 begin FOLFOX with Avastin (scheduled for 12 cycles) CEA 9.8
    9/6/2016 CEA down to 4.0
    9/14/2016 Scan shows all tumors responding to treatment and shrinking YAY!!
    9/27/2016 CEA down again to 3.2

  7. #7
    Senior User Doug K's Avatar
    Join Date
    Dec 2014
    Location
    Columbus, OH
    Posts
    471
    Quote Originally Posted by lsu2001 View Post
    Another quick update, I met with Dr. Claudius Conrad at MD Anderson and he feels that he can do a 2 stage liver resection with curative intent. He stated that due to my age and overall good health that he wants to be aggressive with the surgical options. So the plan is that I will have my first stage of the resection done on Feb. 20th. He also told me to lose as much weight as I can prior to the surgery because 5-FU causes fat deposits in the liver and I need to get those out by losing weight. He said my goal should be 30 lbs. I have lost about 35 lbs since my treatment started and my medical oncologist was trying to have me maintain my weight. It has been stable for a few months now with no loss and no gain. I am 6' tall and currently weigh about 190. If I make the goal he wants I will be about 160. I havent been that light since 7th grade lol.
    In any case more up and down emotions concerning this surgery but at least it seems to be moving in a positive direction right now.
    THanks,
    TIm
    TIm, sounds to me like you are doing great! The news is great and I would love to weigh 200 lbs...at your same height... so, get on with the treatments and living your life! Great news... keep it coming...
    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    Jan.6, 2014 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2.
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk good,CEA .9
    Mar.2015Follow up BlWk continues good, CEA .6
    June 2015 Follow up BlWk good, CEA .7
    Sept2015Followup BlWkgood CEA .7 CT ScanClear NED
    Dec2015SurgicalHerniaRepair surgery, recovering.
    Sept2016Followup BlWkGood CEA .7 CTScanClear NED
    Continue ColoRectal Support Group monthly.

  8. #8
    Hope your visit gives you the results you are hoping for!
    Hubby diagnosed in 2005 with Stage IV, January...Journey on this road has had some major obstacles ..... God continues to help us endure each one.... enjoying life and doing as much as possible!

    My Carolina Cowboy gained his angel wings in August, 2017, 11 1/2 years with Stage IV. It was an amazing journey on this bumpy road. His attitude in fighting this beast was like no other. He did not want anyone's sympathy or pity so much that a lot of our friends did not even know he was in this battle. Many, many thanks to our super oncologist, surgeons, radiologists, staff, and etc. Most thankful to our God above for letting my soulmate be with me all this time! Amazingly, most of the time in this fight was great! We enjoyed trail riding every chance we had to go and so many other things that life offered to us. Even took a few rides with a 5FU pack. My cowboy was a tough one, John Wayne had nothing on him!

    Don't give up! Keep the fighting attitude!! Blessings to all!! May a cure be found!!

  9. #9
    Moderator Top User Fourlegsgood's Avatar
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    Aug 2011
    Location
    UK Leicestershire
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    801
    Quote Originally Posted by lsu2001 View Post
    Another quick update, I met with Dr. Claudius Conrad at MD Anderson and he feels that he can do a 2 stage liver resection with curative intent. He stated that due to my age and overall good health that he wants to be aggressive with the surgical options. So the plan is that I will have my first stage of the resection done on Feb. 20th. He also told me to lose as much weight as I can prior to the surgery because 5-FU causes fat deposits in the liver and I need to get those out by losing weight. He said my goal should be 30 lbs. I have lost about 35 lbs since my treatment started and my medical oncologist was trying to have me maintain my weight. It has been stable for a few months now with no loss and no gain. I am 6' tall and currently weigh about 190. If I make the goal he wants I will be about 160. I havent been that light since 7th grade lol.
    In any case more up and down emotions concerning this surgery but at least it seems to be moving in a positive direction right now.
    THanks,
    TIm
    That's a very promising update and thanks for letting us know. It just shows that the goals can get better as well worse. I am pleased for you.

    Luckily I have always seemed to burn up food rather than put on weight and this worked against me when I had my original operation and lost weight that I didn't have to lose. Last week I found another way to lose weight called the norovirus but I doubt that you would have wanted any of my germs to help you lose weight!

    Good luck. I suspect that it is good to have a target to work towards.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping after 8 weeks and first competition 10 weeks after operation. July 2012, CT scan clear. June 2014, CT scan clear. December 2014, Colonoscopy clear.

  10. #10
    Senior User Bob W's Avatar
    Join Date
    Sep 2014
    Posts
    319
    Hello Tim, The weight issues confuses me a bit, at 190 they want a 6 foot man to drop 30 pounds, wow. I got told that it was great that I was packing to much weight (6' 230 lbs) as that way we would have some reserves. (lucky I did not need the reserves)(but could stand to lose oh say 30 lbs.).

    Bob W
    now 61 years old
    Diagnosed, CRC July 14, 2014
    CT spotted worries on liver and kidneys
    MRI said no big deal
    Sigmoid out, resection September 3, 2014
    September 4, 2014 advised stage 2, no node involvement
    Home September 5, 2014
    Hemorrhaging September 8, 2014
    In hospital found a bleeder
    Home September 12, 2014
    10/14/2014-Carcinoembryonic antigen measurement (CEA) 0.8 ng/mL
    11/24/2014-Carcinoembryonic antigen measurement (CEA) 0.9 ng/mL
    02/20/2015-Carcinoembryonic antigen measurement (CEA) 1.6 ng/mL
    05/14/2015-Carcinoembryonic antigen measurement (CEA) 1.5 ng/mL
    07/21/2015 follow-up colonoscopy 1 year post diagnosis-not whistle clean but dang near it!
    08/24/2015-Carcinoembryonic antigen measurement (CEA) 1.4 ng/mL
    12/24/2015-Carcinoembryonic antigen measurement (CEA) 1.5 ng/mL
    03/25/2016-Carcinoembryonic antigen measurement (CEA) 1.7 ng/mL
    06/21/2016-Carcinoembryonic antigen measurement (CEA) 1.2 ng/mL
    09/20/2016-Carcinoembryonic antigen measurement (CEA) 1.2 ng/mL

 

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