Hi, stage 4 colorectal cancer here

Posted by wifemom3 @wifemom3, Apr 23, 2022

Hi. I am new to the group. My name is Michele and I am located in Florida. I was recently diagnosed with stage 4 colon cancer on January 19th 2022.
I am currently on my 7th round of chemo. Is anyone else newly diagnosed with stage 4? Looking for a little support.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@yannis

Michelle good morning ..my husband was diagnosed with stage 4 colon cancer with liver metastasis on dec, 07, 2018 and in January 2019 he underwent surgery for right Cecal mass and in February started chemotherapy. My hero did it all, avastin bev,irinotecan, the put on pills of capecetabine, for quite a few months, then he tried oxiplatin but the neuropathy was too much so we went back to capecetabine..all through 2019/2020 and late 2021 he underwent mapping of liver then Y90 treatments to right and left lobe of liver. Then we did Lonsurf We fought together a strong battle against cancer together. We were inseparable caring and loving of each other. We came to Greece in December for what was to be a visit home again and was hospitalized for 7 days but sadly my soul mate left me in my arms…the most difficult period.
Ask questions many of them of your oncologists, what options you have and research all hospitals and even European treatments available …there are some new treatments on the horizon but only beginning.
Cancer speaks and changes language in the body it affects, and no two cases are the same. Ask ask ask questions again and again.
And I call on all here to write and flood their senators lines to fund 1 trillion dollars for cancer research. Ask them how much toxicity in chemo can they tolerate, how much suffering are they willing to handle, how many losses of life will they put up with.
The treatment CAN be found and it must. We must all raise our voices together and fight for everyone who has cancer.
With all my prayers to you and to your caregiver(s) for healing. Prayers are a part of this journey. We become more spiritual in our journey together.
May the sound minds of the doctors and research scientists all over the world unite their efforts in Finding the Cure.
With all my heartfelt love,
Yiannis

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Am hearing all the love for your husband, the grief from his loss, and the concern for those who are seeking healing. I want to offer my condolences to you, Yiannis, and thank you for your insight and encouragement. Could you share more about the European treatments you mentioned? I would like to know what is available overseas that is not available in the U.S.

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Good morning and thank you for the above message. Grief is hard and when alone even harder. I saw recently on BBC about a treatment in England that they have which uses I believe histrionics is what they called it. Involves trial for a form of radiation but less toxic. I can’t remember the exact name.
Also memorial Sloan Kettering has developed some new forms of immunotherapy . A Dr. Diaz who hails from Hopkins, a Dr Cerceck and several other doctors there have used a treatment again in trials. At Hopkins they have a superb group of oncologists and radiologist who did the Y90 therapy.
Since we were closer to Hopkins we found their group superb and close to us.
Also the other groups at Mayo , MD Anderson are working on therapies.
We also did all the pills chemo therapies.
All I can say I had a brave husband who gave encouragement to others, the doctors and to me. Love is eternal and still continues … the words said to me have remained engraved in my heart, spirit and soul forever.
Be brave, research everything and above all ask ask questions.
These oncologists are superb doctors and their search for the cure is on going
And I always said in my prayers for God to guide their minds and their hands in the search for the cure.
With all my love
Yiannis

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Michelle, my blessings unto thee for a healing of this cancer. We did chemo therapies, pill forms of chemo, y90 therapy, and of course while travelling back home to Greece the latest pill ( name escapes me) which we had enough for several months.
Research all the great oncologists in the USA for what they offer and always ask ask questions and always have your charts with you wherever you in paper form and on line.
Finally I can say that I never stopped the prayers 27 each night for healing.
My prayers are with you and if you need more of our experiences in this journey please write.
My love and my blessings
Yiannis

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Michelle any time you wish to write please feel free to write me here.
I just remembered the latest therapy we were on..it was Lonsurf
Ask your oncologist if this is right for you.
Prior to that in 2015 we were on another pill for five months which allowed us to come to our beloved home in Greece. I am trying to remember that name which I will look up for you.
So in essence we started feb 2009 with chemotherapy the usual folfiri etc..we tried follow but that causes neuropathy and since my love loved to cook did not tolerate, then we went to the pills I wrote about, back to chemotherapy and then we had the liver mapping and weeks later we had Y90 therapy on the left liver lobe, and then weeks later same on the right liver lobe..
And after that we started Lonsurf.
So there you have the treatment we were on, but each persons case is different, so explore and ask your oncologist lots of questions. No matter how redundant they may be just ask…I did lots of this…
Love Yiannis

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Susan the deep spirituality cometh from the Holy Spirit and it manifests in us when our beloved passes away and leaves in your arms, and the day before tells you that he loves you, that you were always there when his family did not care and that he would marry me again. We choose when we leave and in whose ar,s we leave..our beloved…this is what I relive everyday and research the word love and where it is born and created.
Altho alone now in the world I still have the beautiful memories of my beloved..
Prayer, reflection, researching theological texts is my help.
When he left I went to the church close by and said to the priest crying I am mad at God, but I still love God for taking my beloved and not listening to my prayers. He just stared at me like a mummy and I got pissed off and made a determination to dedicate my life and become a priest …fortunately I found a priest confessor in another local church who is truly a man of the clothe …and seek him out often. He has done the memorial trisagion…requiem aeternam in Greek for my beloved. So my journey is beginning…
With agape,
Yiannis

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@colleenyoung

Welcome @wifemom3. I love the inspirational poem you posted. Did you write it?
Allow me to bring in some fellow stage 4 colorectal cancer warriors, like @eddiebu @pjebp @tinad @sundance6 @duckduck2020 @margreet and others. Some are recently diagnosed, others have been living with stage 4 for sometime.

Michelle, this is still all so recent for you, and reading your bio, it seems like things moved very fast. Since surgery, what treatments have you had or are you having? How are you doing?

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Colleen, thank you for the email here on this site. Please feel free to let me know of I can be of help as a spouse of a cancer patient.
Yes, I have much to say and to add regards this as it will be the wish of my husband who is alive today and everyday in my memories and my prayers.
Not a day goes by that the candle of light for him is not lit, not a day goes by that I do not venture down to my local church to write his name in the list of departed souls that the priest mentions during the liturgy, and not a day goes by that I do not have my spiritual confessor do a requiem aeternam in Greek for him.
I am in Greece now where I love with trips often to USA and to meet with the oncologists at John’s Hopkins to see them and share my thoughts.
Yes, my beloved kept a writing of his journey and the messages he wrote about our Love and how we were soul mates in this journey of Life.
This journey has made me more spiritual about Life, Love and the Life to come.
My research is taking me into paths I never experienced and it is a journey I take alone now with the help of my spiritual confessor. Having been to many churches here, I found one where people wait 10-20 a day to have him do a confessional. Never have I seen a priest do this and in my neighbourhood many people speak of his spirituality.
Whenever, whatever you wish and whenever and whatever your friends on this journey wish please write. I am here to serve cancer patients with an open heart and an open soul.
We were lucky in that the doctors at John’s Hopkins have kept in touch with me and remark about our love for each other.
I try to read these letters he left for me and I am getting much encouragement to publish his wise words for others. You see he was a brave young man, a wise young man, an artistic and creative person.
With all my love
Yiannis

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I am terrified
My husbhas stage 4 colon cancer and is on Folfiri and avastin. I do not know what suffering lies ahead and how I will cope

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@colca

I am terrified
My husbhas stage 4 colon cancer and is on Folfiri and avastin. I do not know what suffering lies ahead and how I will cope

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@yannis I think that @colca could use some of your support from the perspective of a caregiver caring for a loved one with stage 3 colon cancer.

Colca, I know you are scared and worried about potential suffering that lies ahead. How are you doing today?

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@colca

I am terrified
My husbhas stage 4 colon cancer and is on Folfiri and avastin. I do not know what suffering lies ahead and how I will cope

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Dear Colca, my husband was diagnosed with stage 4 colon cancer which started with a decal mass tumor. We met with gastroenterologist surgeon who was tops and after speaking we had operation to remove the mass.
We then started chemotherapy with irinotecan, avastin bev etc.
I know you are scared and afraid but the most important for you is to be strong for your husband and yourself. Do not let fear cloud your thinking in not asking lots of questions from your oncologist. I don’t know where you are going for treatment, but always ask questions .
Lab work is always important especially cea which your oncologist will explain. Things in the area of cancer treatments change constantly.
Make sure your liver oncologist provides you with as much information as possible.
Ask about the neuropathy side effects of the treatment you receive or will receive.
After a while the chemo would not work, and then we went on a pill which he took morning and evening which is expensive, but many states offer these at no charge to patients. Will try to remember the name…this afforded us time to come home to Greece…all went well .
Other options you should look at are immunotherapy, which we did not have.
I also spoke to liver surgeon about treatment but our case was not treatable. We did upon recommendation of our liver oncologist Y90 therapy with radiation beads placed on both lobes of the liver, at different times. Before hand we had a superb surgeon who did liver mapping so that the radiology department could perform the treatment placing radioactive beads in the liver.
Finally we ended with Lonsurf pills …
In this journey there are always side effects which you will encounter and you must be ready to meet them with testing and meds.
There are new methods being tried and as I said to my oncologist, cancer speaks different language in people and it changes direction fast.
Diet plays an important part, we are Greek so we cooked Mediterranean diet snd foods with Greek olive oil always.
Again I do not know where you are in USA , for there are many university hospitals with specialists who are top notch. Always research your options carefully and again ask ask many questions, and what options are open for you.
Always be prepared for everything, and when with your husband be strong, brave, fill your days with love and caring. I never stopped prayers 27 every night to our Holy Mother for healing.
Any time write and I will be here to help in whatever way I can.
I still keep in touch with our doctors at John’s Hopkins and truly the staff, the doctors, the nurses, the triage unit were fantastic and they always remarked about the love we had for each other.
My husband was the bravest soul who endured all treatments with bravery , courage and humour ..
With all my love and prayers to you both.
Yiannis

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@yannis

Dear Colca, my husband was diagnosed with stage 4 colon cancer which started with a decal mass tumor. We met with gastroenterologist surgeon who was tops and after speaking we had operation to remove the mass.
We then started chemotherapy with irinotecan, avastin bev etc.
I know you are scared and afraid but the most important for you is to be strong for your husband and yourself. Do not let fear cloud your thinking in not asking lots of questions from your oncologist. I don’t know where you are going for treatment, but always ask questions .
Lab work is always important especially cea which your oncologist will explain. Things in the area of cancer treatments change constantly.
Make sure your liver oncologist provides you with as much information as possible.
Ask about the neuropathy side effects of the treatment you receive or will receive.
After a while the chemo would not work, and then we went on a pill which he took morning and evening which is expensive, but many states offer these at no charge to patients. Will try to remember the name…this afforded us time to come home to Greece…all went well .
Other options you should look at are immunotherapy, which we did not have.
I also spoke to liver surgeon about treatment but our case was not treatable. We did upon recommendation of our liver oncologist Y90 therapy with radiation beads placed on both lobes of the liver, at different times. Before hand we had a superb surgeon who did liver mapping so that the radiology department could perform the treatment placing radioactive beads in the liver.
Finally we ended with Lonsurf pills …
In this journey there are always side effects which you will encounter and you must be ready to meet them with testing and meds.
There are new methods being tried and as I said to my oncologist, cancer speaks different language in people and it changes direction fast.
Diet plays an important part, we are Greek so we cooked Mediterranean diet snd foods with Greek olive oil always.
Again I do not know where you are in USA , for there are many university hospitals with specialists who are top notch. Always research your options carefully and again ask ask many questions, and what options are open for you.
Always be prepared for everything, and when with your husband be strong, brave, fill your days with love and caring. I never stopped prayers 27 every night to our Holy Mother for healing.
Any time write and I will be here to help in whatever way I can.
I still keep in touch with our doctors at John’s Hopkins and truly the staff, the doctors, the nurses, the triage unit were fantastic and they always remarked about the love we had for each other.
My husband was the bravest soul who endured all treatments with bravery , courage and humour ..
With all my love and prayers to you both.
Yiannis

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Thankyou Yannis. I live in India. We met with several oncologists before choosing our doctor. The oncologist is encouraging and says one survives on hope. The gastroenterologist however, who did a laprascopic investigation last month painted a grim picture. He said there were 10 to 12 nodules too small to show up on the pet CT in the pelvis and lower abdomen. Mymind wants to believe he is a pessimist. He was the doctor who operated on my husband in July 21 and after 9 and a half hrs in the OT working on my husband,popped out and said I give him 2 yrs. Immunotherapy apart from the formidable costs will not work on him due to some mutations. He has to work his way through four more cycles of folfiri/Bevacizumab and then we will know where we stand. My main anxiety is the suffering that lies ahead and how to cope as the disease progresses and the suffering that comes with it.What I have understood is he is beyond cure. Thankyou so much for your caring response and prayers. What I need is strength to cope with his suffering

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