Encouragement

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dmdwins
dmdwins Member Posts: 454 Member
edited January 2023 in Colorectal Cancer #1

It has been a very long time since I have posted but have it on my heart to share… to give you hope and encouragement! I was diagnosed with Stage 4 colon cancer (Mets to my ovaries) in October of 2007 and I have just celebrated 15 years of life since diagnosis and remain NED since 2008. I shared so many of the same feelings you all are experiencing with ups and downs and scanxiety and new normals but want you to know that I’m in your corner during your battle. Prayers to all of you!!

Dawn

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    Congratulations on your 15 years of beating the beast. It is always a boost to the fighters, when long-term survivors post. Thank you!

    I myself was diagnosed 10 years ago. Seems like yesterday.

    Sue

  • dmdwins
    dmdwins Member Posts: 454 Member
    #3
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    https://csn.cancer.org/discussion/comment/1701298#Comment_1701298

    Congratulation Sue on 10 years! That is definitely a big milestone ! I remember just wanting to know that there were Stage 4 long term survivors when I was diagnosed to give me hope! We are proof that long term survivorship can happen !

    Dawn

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited November 2022 #4
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    Thanks for posting your words of encouragement. Congratulations to both of you!

    I am 6 1/2 years Ned now for colon and 4 1/2 years for kidney cancer. Keep positive everyone and keep the faith!

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #5
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    Might as well chime in here. I was diagnosed a month earlier, Dawn, Sept. 25th, 2007, with a mass in my sigmoid section, 2of 17 nodes involved, and according to the onc/surgeon [later], tiny mets were in my liver before chemo, which didn't stop them, requiring liver surgery 3 years later, and 3 years later again. Thanks for sharing your 'journey', people need to read survivor stories, I know I did, back at the beginning....................................Dave

  • dmdwins
    dmdwins Member Posts: 454 Member
    #6
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    Thank you for sharing your stories Sandy and Dave! The successes and survivorship stories were what I longed to see when I was very active on the board. I hope our stories give encouragement to others today. Best wishes for continued health !

    Dawn

  • Johannes79
    Johannes79 Member Posts: 2 Member
    #7
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    https://csn.cancer.org/discussion/325854/encouragement

    Thank you all for sharing and congratulation to all survivors. My best friend has been diagnosed last april with a stage 4 colorectal cancer (with the gene mutation Braf) that has metastasized into the liver. She could not have surgery. She currently receives Folfox for 48 hours: Bevacizumab (avastin)/Ondansetron/Methylprednisolone/Oxaliplatine/Atropine/Irinotecan/Levofolinate de calcium/5-fluorouracile/Neupogen (filgrastim >> 5 days after chemo for a period of 5 days).

    After 5 months of chemo, her tumors got reduced by 69 % which is great. But the side effects are huge (peripheral neuropathy, low white blood cells, low platelets, fatigue, loss of appetite, diarrhea, hair loss, nausea, etc.). and sometimes the chemo has to stop because her platelets and white blood cells are too low.

    The french oncologists (we live in France) are not optimistic. He told us not to expect the tumors to go away.

    Anyone can bring us hope for that type of aggressive cancer? Is there anything you would advice? Thank you all again.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #8
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    https://csn.cancer.org/discussion/comment/1701512#Comment_1701512

    Hello, and welcome to the forum.

    It is hard to watch someone you love, go through such an order. I am all too familiar with the side effects, you listed, plus more. It is not a happy time, yet, you have to find that happiness, somehow, even if it is for brief moments at a time.

    It is good to hear that the tumours are shrinking, and we have members on the forum, who have survived many years with tumours, though it means chemo for life, which is a daunting prospect. I myself can't even imagine doing that. They are truly strong people, with a will to live that keeps them going.

    I certainly cannot say either way, if your friend will ever experience a stage of no tumours, but if she can live with the ones she has, and the treatment that keeps them stable, then that would be great.

    Diet and exercise are crucial at this point, I believe. Our forum friend, NewHere, has survived way past his expiration date, by keeping as active and healthy as he can, during his gruelling treatments - and he has had many. If you search his name on the forum, and read some of his posts, they may give you and your friend, hope.

    When it comes to diet and exercise though, caution is the key. I myself would never go to extremes, as that can be as damaging as doing nothing. Finding a balance, and being sure to keep the Oncologists involved, are important. Meditation also helped me tremendously. I know it is not for everyone, but it is always worth giving it a try.

    Thoughts and good wishes are heading to France.

    Tru

  • Johannes79
    Johannes79 Member Posts: 2 Member
    #9
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    https://csn.cancer.org/discussion/comment/1701518#Comment_1701518

    Thank you Tru for your good wishes. Your message is very encouraging.

    You are right, she will continue chemo as long as her body can accept it. For a longest time possible.

    I checked NewHere profile and messages. Thank you. What a lesson and what a strong will.

    I wish my friend could exercise more and eat better. She goes for a 5 minute walk every day but she can't do more than that. Regarding food, even though she knows that she should eat vegetables, fruits, good proteins and drink water and green teas/ginger water, she just can't. Any vegetable makes her full. She only feels attracted to yogurt, cottage cheese and oat flakes. Sometimes she can have potato gratin.

    I also encouraged her to meditate. I even found an hypnotherpist who offers free meditations for cancer patients. But she dislikes it. She finds a sense of calm in playing with her 2 kids (teenagers) or going with friends see the sunset. She has her own way of finding peace and I believe that's good.

    I was looking online if she could expect anything from complementary medicine (turkey tail, curcumin, omega 3, vital D) but her oncologists discouraged her of taking anything like this as they could interact with her medication.

    For her peripheral neuropathy (fingers/hands), doctors had nothing to propose. I read a few papers on L Carnitine, L Glutamine and Alpha lipoic Acid. Nonetheless the papers are contradictory. Some say they they are good, some say they can worsen the metastasis. Well, not easy to have clear answers.

  • Dwlcw
    Dwlcw Member Posts: 1 *
    #10
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    Hi, I was diagnosed with Stage 4 colon cancer in Oct 2020 w/small mets to the liver. I took Folfox for approx a year and a half. PET scans every 3 or 4 months were coming back NED. Then in Oct of 2022 PET scan showed cancer had come back with mets to brain which didn't totally surprise me because on my last few chemo treatments I had noticed the CEA went up from < 2 to 2.4 to 4.5 and then to 11.4. I had a grape sized tumor removed from my left cerebellum 3 weeks ago. The oncologist switched me to Folfiri. I had my frist treatment last week, and it was worse for me than Folfox. Does anyone have any knowledge of, or experience with IPT or Fenbendazole. Any failures or success stories would be appreciated. I have read some interesting articles on PubMed about Fenben.

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #11
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    https://csn.cancer.org/discussion/comment/1701662#Comment_1701662
    https://csn.cancer.org/discussion/comment/1701662#Comment_1701662

    Welcome, I haven't any experience with those treatments, out side of the 12 of Folfox over most of 6 months. Click on the avatar names to get backstories. Most stories, like mine have a recurrence to the liver, sometimes a lung or peritoneum, having mets get to the brain seems rare to me. I hope you can get the latest of treatments, even trials as they sound so promising. Good luck.......................................Dave

  • Emmanuel89
    Emmanuel89 Member Posts: 16 Member
    #12
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    Thank you all for the encouragement! It's great reading about so many successful treatments. My son is 33 years old and was diagnosed on December 2021 with stage 4 CRC with mets in liver and lungs. Since then he had colon surgery (took tumor and most of his colon), he's on his 19th session of chemo. Last 2 have been maintenance. He started with folfoxiri and Avastin. Last 2 scans show liver Mets are resolved and tumors in liver are shrinking, even during maintenance. It's been a hard year, especially that first week after diagnosis. We've changed oncologists too because his old one was very doom and gloom and kept saying he would never be able to have liver surgery because too may mets. But we have an unbreakable faith that he will be NED and he'll be able to have surgery. We are very hopeful, he's convinced he will live to change my diapers when im old 😆

    It's awesome to see that the first doctor (not an oncologist) that gave us his diagnosis was wrong! He gave him 6 to 24 months because stage 4 and as we see here, that's not always the case!

    Thank you all again, I love reading succes stories!

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