• mtnraindancer's Avatar

    mtnraindancer posted an update

    I haven't posted in a while. I have been working hard to rest and recover from the liver resection. I finally feel like I may be turning the corner. I was suppose to start the mop-up chemo I have left on Tuesday but one of my blood counts was just a tad low and my oncologist wanted me to have one more week of recovery . So, I will be in the chair this coming Tuesday to knock it out I hope. So far, things have been going well. I dropped about 10 lbs with the surgery and I am trying hard to gain back before chemo. My appetite is just starting to wake back up and I have to eat small meals because I get full quickly. I'm hoping I do as well on the mop-up chemo in regards to "no nauseau" as I did with the first rounds I had. One bit of good news I wanted to share was that my CEA was 39 when I was diagnosed. After the first 4 rounds of chemo it dropped down to 12 and then to 9. As of last week, it is down to 1.7...yay!! I know it's not a marker for everyone but I sure hope it stays down. I am back in my mountains and soaking up this Spring sunshine before I have to start on the last of my chemo. Wishing all of you good things! Hugs, M

  • mtnraindancer's Avatar

    mtnraindancer posted an update

    I almost forgot...Both surgeons said all looked great. My colon surgeon took 19 lymph nodes during the resection and all were negative. It seems the chemo worked well on the colon tumor but not so much on the liver tumors. My oncologist said she thought it was because the liver tumors were so large. She still wants to do the Folfox wihout the Avastin for the mop-up so I guess that will be the plan. Hugs, M

  • mtnraindancer's Avatar

    mtnraindancer posted an update

    Just sharing an update. I had my surgery on the 19th...the took the right lobe of my liver, my gallbladder and my sigmoid colon all at once. I came home to my daughter's a week later and I am recovering well. My liver surgeon said he got clean margins but I am waiting on my colon surgeon to get path results back on the lymph nodes removed during surgery...hopefully good news. I go back to MUSC this Wednesday and hopefully will have the staples removed. I walking thru the day and getting used to my new colon pipes, lol. Surgery was no picnic and I have had some rough days but very grateful to be doing so well. Thank all of you for the prayers and thoughts. Hoping life is catching each one of you with gentle hands.Hugs, M

    2 Comments
    • Jayne's Avatar
      Jayne

      Dejavu! I was just thinking of you. So glad you got some positive results and hoping for more! Take it slow....I learned that pushing myself only resulted in incision openings which lead to very unsightful scars. Wish I had listed to my doc about that. Thanks for the update!

      about 1 month ago
    • JaneA's Avatar
      JaneA

      I am so glad to hear that you are recovering nicely. You've been in my thoughts and prayers.

      about 1 month ago
  • mtnraindancer's Avatar

    mtnraindancer posted an update

    I had my colonoscopy at MUSC today and the surgeon said based on what he saw that he will do the colon resection during the liver resection surgery. He said he will do it laparoscopically and doesn't think I will need an ostomy unless there were complications from the liver resection. He said he was able to advance the scope into my colon since the tumor had shrunk a good bit and he didn't see anything else within my colon. (yippee!)
    I had all of my preop work done today so February 19th can't come soon enough. I have been blessed in so many ways with the journey. This board is such a wonderful site of support. Thank you and bless each one of you for the hope and support you so graciously give to others. Hugs, M

    1 Comment
    • JaneA's Avatar
      JaneA

      That is awesome news. I am so happy for you. I just got my 6-months scans results - still NED 4 years and 4 months after my Stage IV diagnosis. You're on the way to NED.

      3 months ago
  • mtnraindancer's Avatar

    mtnraindancer posted an update

    One step closer. I met with the colon surgeon today. He wants me to do another colonoscopy next Friday to assess the tumor location (oh fun, lol). My tumor was described as being at the recto-sigmoid junction. He said if we did a simultaneous surgery of both colon and liver, a temporary ostomy would give me time to heal and take stress off my liver as well as it heals. I also asked him if he were the one in my shoes, would he do mopup chemo...he said yes. So far, I like both doctors and they seem to work together for the best outcome for the patient. I guess I will know more after the procedure Friday but for now, I think the talk with him is leading me toward the mopup chemo I had questioned before. Hugs to all, M

    1 Comment
    • JaneA's Avatar
      JaneA

      I like the idea that they are considering doing both at one time - I doubt that you'll be in any more pain and have any longer healing time. You're ahead of the game - do the mop up - get reversed. You're done. Best wishes!!!!!!!!

      3 months ago
  • mtnraindancer's Avatar

    mtnraindancer posted an update

    Happy Dance!..Happy Dance!...Happy Dance!..I met with the liver surgeon in Charleston today. He is planning on doing the liver resection around the end of February. He did tell me that my tumors are close to the vena cava and that it would be a major surgery but he thought he could get all of it. He said I stand a great chance of beating this with the surgery based on progress so far. He wants me to meet with the colon surgeon for a scope and determine the timing of the colon resection. Getting both at the same time would compromise my recovery from liver surgery and would probably result in a temporary ostomy which I don't want. He suggested doing the liver resection first and follow up with the remainder of my chemo cycles after healing from the resection. Then do the colon resection with no more chemo afterwards. He said an ostomy would be less likely that way but we will see what the colon surgeon thinks. That makes more sense to me. The only thing I wonder about is how it makes sense to put more chemo on top of a newly regenerated portion of liver. I realize it is to mop up "floating" cancer cells but it still seems to contradict the "healing" process. Again, any advice on these surgeries and any suggestion on what I can do to prepare for them would be greatly welcomed. I am HAPPY to be off of chemo for the surgery but I still have that little fear that something will grow without it. As much as I hate the chemo, I know how crazy that must sound, lol..Hugs to all!..M

    3 Comments
    • Jayne's Avatar
      Jayne

      Great news!!!! It does make sense to me that you would have one major surgery at a time. The body is amazing but it does have it's limits! So happy to hear you have a positive move forward - check mate, cancer! Interesting question on the follow on chemo - I already told you about mine so it would be good to hear from others. BTW, you are not crazy about the Chemo! :-)

      3 months ago
    • Teelee3's Avatar
      Teelee3

      I’m so happy to hear your news! I had an APR surgery in 2015 and have had two liver resections since then. After the first surgery, I did not do chemo as I had a bile leak for 7 months and my drs said the chemo would not be very effective after all that time. I had a second liver tumour a year later. That was removed last February. It was an easy surgery and chemo was started 8 weeks later. I have been NED since. I wish I could have had chemo after the first surgery and the second tumour may not have reared it’s ugly head. If it were me, I’d do what the drs recommended. I also have a permanent ostomy my and it’s really no big deal...small price to pay to get to “stay” lol
      Congrats on the great news!!!

      3 months ago
    • JaneA's Avatar
      JaneA

      Your liver regenerates - this is standard protocol to keep those stray cancer cells from rearing their ugly head. I am so happy for you. I have a friend who was treated for a complex colorectal cancer that was next to her bladder. They did a complex surgery on her, and everything was GOOD. That was four years ago for her. I am doing the HAPPY Dance for you.

      3 months ago
  • mtnraindancer's Avatar

    mtnraindancer posted an update

    I had my 4th treatment yesterday (Folfox w/Avastin) Everything went well. Expected fingertip stinging and finger curling arrived like clock work. I haven't slept well so after discussing things with my doctor, we decided to pull the two day doses of dexamethasone and see what happens. I think I am on steroid overload. I crashed from no sleep and I suppose all the premeds/Benadryl I got yesterday so I did sleep better. One thing that is working for me I will share in case it is of help/interest to someone else. I have been doing coconut oil for "pulling" every morning. I take a scoop of oil first thing when I wake up and swish with it for twenty minutes as I go about my morning routine. After spitting it out, I follow with a warm salt water rinse. This has worked wonders for me and I have had no mouth soreness. It will also whiten your teeth. I have added organic peppermint oil and clove oil to it at times as well. The clove oil has antiseptic properties which heal and sooth. Just the pure coconut oil is great alone. I always have it on hand. Hope this is helpful to someone!

    1 Comment
    • lo15's Avatar
      lo15

      Hey there, glad you are doing ok. Don't be afraid to add those steroids back in , they do help and are given for a reason. We used to live in SC and started treatment there. When we told the new Dr's we were getting Benadryl they laughed and said no way, no wonder your tired. Keep up the good fight, you've got this!!

      4 months ago
  • mtnraindancer's Avatar

    mtnraindancer posted an update

    First, thank you for all the prayers and well wishes for my CT scan results. For others going thru their own trials and tribulations to graciously share and give insight, it is a gift I will always be grateful for. My original CT scan was not available to the radiologist when he read my scan from yesterday so he compared it to my PET scan. King Kong (my largest liver tumor) started at 10.1 x 7.7 and Baby Kong (the smaller but still BIG!) started at 7.9 x 7.3.
    King Kong is down to 9.5 x 6.4 and Baby Kong is down to 6.6 x 5.5. Not the colossal shrinkage I hoped for but I am responding I suppose. My CEA went from 35 down to 12. So, at this stage of the game, I will be back on the chemo boat for round 5 Jan.2 ready to fight, fight, fight. Huge hug for all you here...M

  • mtnraindancer's Avatar

    mtnraindancer posted an update

    Good vibes needed!! Going for my CT scan this morning and praying for enough shrinkage on tumors to do surgery. Prayers said and fingers crossed!!

  • mtnraindancer's Avatar

    mtnraindancer posted an update

    Grateful and blessed...I had an appointment with my oncologist today to assess treatment so far. My CEA has dropped 60% after 3 rounds of chemo and I have responded well. No pain in liver area at all and bowel movements are actually "normal" which she said indicates shrinkage of the tumor.(maybe TMI?!?..lol..I know I'm among friends) I have my first CT the day after Christmas and I have sent up my Christmas wish with my prayers...shrink me enough for resection!! My side effects have been minimal with the biggest being tingling/burning in my fingers and weakened grip at times. No naseau, weight loss, diarrhea or severe fatigue yet. My doctor said we will monitor progression and could lower the Oxi if needed I don't want to yet. I love my oncologist. I cried to hear the news today and she cried with me.(hugs are powerful medicine) She shared stories of 10+ year survivors who were her patients and believes I have a chance to come out on the other side of this with treatment and resection. Who knows? All I know is today was a good day...

    4 Comments
    • Marzbarz's Avatar
      Marzbarz

      Good for you!!!! Your going to kick this.....

      4 months ago
    • BruceB's Avatar
      BruceB

      About the BMs (yes you are among friends) --- she said that I would experience a lessening of symptoms if the chemo was working. When I reported that my BMs were becoming more normal, she said that was a good sign, and sure enough, when they did the next CT it showed significant shrinkage. You're doing well!

      4 months ago
    • JaneA's Avatar
      JaneA

      You sound like you are responding to the chemo. After three rounds, my CEA dropped from 37 to 3.0 (normal). I am thrilled for you. Keep on doing what you are doing and BELIEVE in miracles.

      4 months ago