CT scan results not favorable

BRHMichigan
BRHMichigan Member Posts: 368
in Colorectal Cancer #1

Well, I had to go ahead and read my CT results on the patient portal, and they revealed I have gone from 3 spots on my liver in December to at least 17. They are growing rapidly. I have yet to consult with my Oncologists, but I am fearing the worst. If I wasn't a candidate for surgery with 3....how can they help me now? My particular cancer spread during my neoadjuvent chemo and radiation. I took Xeloda. I really don't want to spend the rest of my life being miserable on chemo if I can help it. The statistics are lousy both with or without chemo. 

Does anyone have any experience or success stories with so many Mets to the liver? My lungs are clear for now. But this appears to be very aggressive. I am just so sad for my family. Having lost my own mother to cancer when I was 26, I know how devastating this can be. 

I want to keep fighting, just need some inspiration and motivation now. This is so difficult. Thanks, everyone. -Beth

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Comments

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #2
    Beth I am so sorry

    there are other options for chemo besides Xeloda, possibly even ones specific to your type of cancer.  My husband did not want to do chemo, but he had to. If he wanted to fight he finally had no choice and For him the chemo wasn’t so bad. I know everyone reacts differently. I also know for his cancer the oxaliplatin as much as it sucked was the key to shrinking things. Get another opinion if you need to, i have no idea what your surgical,options are but if you can shrink them sometimes it changes things. Don’t take no for an answer and get in there and find a dr who will help you. 

     

    I am editting this to add to add one thing I kept saying to my husband was how hard this surgery was going to be for him and how long the recovery could take. His reply, yep it’s going to suck, for a while maybe even a few months but if it gets me to good and free of this beast for a while I will take the bad to get to the good. 

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #3
    Thank you, Ruth

    I won't quit. I will go to a Center for Excellence if I need to. I would just love to remove the larger tumors. My recovery from rectal resection was tough, but I'm thinking liver might be even tougher. And I haven't tried the oxilaplatin yet, but I have seen that it sometimes is key to the battle. I need to keep an open mind, as the natural stuff is making me feel great but not touching the cancer yet. I can't wait too much longer. 

    I sure appreciate your comments. Thank you. And may God shine down on all of us. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #4
    Maybe use both?

    traditional and non traditional? I know you feel great  and that’s awesome! But you know you what you need to do, no one can make that decision or choice but you.   

  • Mikenh
    Mikenh Member Posts: 777 Member
    #5
    This is an awful turn of

    This is an awful turn of events. There are clinical trials but I've seen that here can be minefields with those too. The chemo is no picnic and nobody wants to stay on them forever. The Oxaliplatin may help but it's pretty hard on most people. I have seen some where the side-effects were mild but they were the few.

  • greg98466
    greg98466 Member Posts: 21
    edited March 2018 #6
    At a loss of words...

    Beth good greif I wish they would get better at killing this,, I will pray for you its all I can do...

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited March 2018 #7
    Thanks, everyone

    I really need to chill out until I meet with my doctors in the coming weeks. But I want to be prepared. I have looked into some clinical trials and there few if any available for my particular cancer. We have Karmanos nearby and they may have some different ideas. 

    I believe in the power of prayer and positivity. You are all in my prayers daily.

    I'm going to pick up a book now to inspire me. As long as I can keep doing things, I need to go out and do them. Don't want to wallow around the house. 

  • Macdougal
    Macdougal Member Posts: 18
    #8
    Kitchen sink

    They‘ve never bothered to count all the mets in my liver & it’s a very aggressive cancer.  

    My oncologist is treating them aggressively back with folfoxfiri + avastin.  It’s working quite well, my bloodwork is good and the largest tumors have shrunk by 30%.  I feel good and work full time.

    Moving quickly on this before your liver metabolism gets too messed up is a good idea.  I accepted the risk of high chemo and tolerate it well except the neuropathy from the oxaliplatin is starting to build after round 10.  

    Good luck, be aggressive back and take care of yourself.

    -Doug

  • abita
    abita Member Posts: 1,152 Member
    #9
    BRHMichigan said:

    Thank you, Ruth

    I won't quit. I will go to a Center for Excellence if I need to. I would just love to remove the larger tumors. My recovery from rectal resection was tough, but I'm thinking liver might be even tougher. And I haven't tried the oxilaplatin yet, but I have seen that it sometimes is key to the battle. I need to keep an open mind, as the natural stuff is making me feel great but not touching the cancer yet. I can't wait too much longer. 

    I sure appreciate your comments. Thank you. And may God shine down on all of us. 

    I have to agree with try

    I have to agree with try oxaliplatin. In 4 rounds, it shrunk my tumors by almost half. I am about to switch to irinotecan. I am told that it has totally gotten rid of tumors in someone. There are many alternatives. I am so sorry that your doctor didn't check your progress sooner.

  • abita
    abita Member Posts: 1,152 Member
    #10

    Remember, if the side effects are too bad, you can stop. Deciding to see if another drug works doesn't mean you must finish all the rounds. 

  • airborne72
    airborne72 Member Posts: 303 Member
    #11
    Speechless

    Beth:

    I am stunned by your news and all I can do is let you know that there is someone in Tennessee praying for you.

    Jim

  • lizard44
    lizard44 Member Posts: 409 Member
    #12
    Oh, Beth

    So sorry   you didn't have better results. But do discuss  all options wih your oncologist.  My first CT scan showed several  lesions in my liver but only one  lit up on the  subsequent PET scan. It shrank when I was on FOLFOX plus Avastin, then grew 18% when I was on   5FU alone.  My onc  switched me to  Erbitux and Irinotecan and the liver tumor shrank enough to be ablated. When the liver surgeon did the ablation he also zapped all the little  hypodense lesions as a precaution. My oncologist told me in the beginning  she has a whole arsenal of  weapons to use and while we may one day run out of ammunition, we plan to keep the beast at bay for as long as we can without sacrificing quality of life. I have a CT scan scheduled for next month so we'll see how everything is working then.  So far I've been lucky in not  having  a lot of nasty side effects from the chemo or radiation.  I hope if you do   decide to go with  more aggressive chemo treatment that you'll also be able to avoid any debilitating side effects. I'll be  keeping you in my thoughts  and sending positive energy.

    Grace/lizard44

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited March 2018 #13
    Not giving up

    I sure appreciate everyone's advice and support here. This place has truly saved my sanity on so many occasions. It's the one place where I can cry out for help and get advice from people who can empathize. 

    I do feel good overall, and consider that a gift and a means to keep fighting. That and my husband, 5 children, grandchild,  my 4 siblings and wonderful friends. Whether it's months or years, I need to keep living. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #14
    I'm so sorry hear your bad CT

    I'm so sorry hear your bad CT scan result, Beth. It could be hemangioma or a fatty liver that they all show spots on the scan. Don't fret until you have discussed it with your oncologist. I like what Ruth said above...you have to take the bad to get to the good and that's what chemo does. I know Oxaliplatin is very harsh but it does its job. Mean time keep yourself busy until you meet with your oncologist. Thinking and praying for you! 

  • Cindy225
    Cindy225 Member Posts: 172 Member
    edited March 2018 #15
    Keep Living!

    Beth -  You and your family are in my thoughts and prayers...

    You are so strong and focused... Keep fighting and living...

    Cindy

         

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #16
    It is difficult

    You are allowed to feel overwhelmed every now and again. But you're a fighter and a positive one; and that can only be good. 

    Lets see what your Onc has to say now. Some of those spots could be unrelated to Cancer. 

    Tru

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #17
    Sorry

    So sorry to hear that news.  I'm hoping that your team of doctors can give you something other to try.  There are others on here that have given you much advice on your situation and others that will.  You need to just get with your doctor and get some questions answered and a plan moving forward.  You can also get a second opinion if you think your doctor doesn't have your best interest in your long term plan.  Wishing you the best and you are in my prayers.

    Kim

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    #18
    Prayer

    is our most powerful weapon in battling this so I'll include you in my prayers.  I will also pray for your discernment to come up with the decision.  I am not a strong advocate of chemo but I did it anyway because if its the reason to keep the beast at bay, I'll take the risk.  The side effects for me were not debilitating so don't be afraid to go with it.  If you can combine it with alternative therapies, you can also do so, that is, if your onco is fine with it and it won't conflict with the chemo.  I've had chemo but I integrate it with TCM and some other herbs.  I don't know what's inside of me as I'm due for a PET scan soon but I'm just happy that I'm still alive.  Keep living beth, news like these puts us down but I know you'll get up and put up a fight. 

  • zx10guy
    zx10guy Member Posts: 273 Member
    #19
    Consider contacting Dr. Nancy

    Consider contacting Dr. Nancy Kemeny at MSKCC in NYC.  She has specialized in treating people with difficult liver metastatic spread.  She invented the HAI pump procedure which has helped people control their liver tumors and even get to the point of being able to have surgery.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #20
    Thank you, Cindy, Tru, Kim, 'train', & zx

    I sure appreciate all of your comments, thoughts and prayers. My husband and I are starting to discuss what we do to prepare if I lose this battle. And that is actually making me feel more relieved. I worry more about my family than myself. I need to focus more on me for sure. I've tried to resume normal activities and need to make some changes now.  Fortunately, God has granted me the opportunity to do this. If I survive? Win win. LOL

  • PamRav
    PamRav Member Posts: 348 Member
    edited March 2018 #21
    So very sorry

    regarding your scan results.  I hope you will find a treatment plan that you are comfortable with and that kicks this cancer’s butt.  Don’t be afraid to get a second and even third opinion   

    I was dx back in Dec ‘17 with stage IV With 3 mets to the liver.  My initial chemo had oxi in it.  It only took 3 doses to shrink the mets to an operable condition.  I am fortunate that I have no residual effects from the chemo. 

    I wish you peace and strength 

     

    pam 

     

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