I had my first bout with appendix cancer in 2015. I had an appendectomy, hemicolectomy and 12 rounds of chemo at that time. I was doing quite well and cruising along until my recurrence in 2021. It came back on my ovary. As strange as it sounds, my husband and I were somewhat hoping it was ovarian stage 1. Unfortunately, it was stage 4 appendix adenocarcinoma (goblet/signet cell). It's rare and aggressive cancer without much encouraging data. I went in for cytoreductive surgery with heated intraperitoneal chemo. I had a radical hysterectomy, choleycystectomy, peritonectomy, omentecomy. I will never forget how many times I was told this was a palliative surgery...that I would never be cured...that I needed to "get my affairs in order". I think I still have a little PTSD from all those conversations. I got lucky as the disease was not as widespread as they thought. I got to keep my spleen and did not require an ostomy at that time. It was a tough diagnosis and subsequent surgery. I'm 2.5 years out with NED. I've plugged back into the living world and I am finally feeling a bit more like my old self. I find the emotional and psychological aspect of carrying a stage 4 diagnosis to be the most challenging part of this entire ordeal. It changes you and it can be a little isolating. I'm still relatively young. I had to bid farewell to my fertility, my dreams of motherhood and learn how to live again in this new reality. Sometimes it seems unreal...like a bad dream; but then I look in the mirror and the scars remind me. I'm grateful for the grace I've been shown.... but wow....what a ride it's been!
I can relate so much to your story and all the losses, ptsd and indescribable feeling of being yet not being connected to the world. I too lost my fertility and was told with my diagnosis not to expect to be around for than about a yr. @princessmaza. and @turbo48 what can I do to help or what are you most wanting to know?
Colleen - how are you doing? I was just diagnosed with the same, and don't know what next steps will be, as I have to wait to get into oncologist for another week. Please tell me... are you getting through that ordeal OK?
My wife had a double masectomy 3-1/2 years ago. On her final visit to the reconstrucivesurgeon, he took samples from lymph nodes adjacent to the surgeries. Lo and behold, Sloan Kettering, who analyzed the cells, said they found peritoneal cancer cells. Now, after all this time and on the second set of oncologists, all any has done is give her oral chemo. No one has done the imaging to find where it is located so no biopsies. Her CA-125 went from 32 to 55 in the past few months, which has caught her oncologist's attention, Very frustrating.
Hi, I had surgery for ovarian and peritoneal cancer 5/31/23. So far chemo is going great and my ACR number is down to 8. I’ve been taking Enterade, an oncology food that helps with gastrointestinal function (i.e. bowel movements) It’s expensive, but you may be able to get insurance to cover it. Just thought I’d pass this along.
Hi I was diagnosed in March 22 with advanced 3c primary peritoneal cancer.Had chemotherapy last summer,should have had 8 lots but stopped after 5 due to side affects.
Was due to have debulking September 22 but cancelled it.
I have been really ill January to May this year ,infection,sepsis and lung drain. Was given 6 months life expectancy in February and put on palliative.
Started to pick up in June had scan and showed stable desease,have felt really good since🙏
It's a miracle 🙏
Hi I was diagnosed in March 22 with advanced 3c primary peritoneal cancer.Had chemotherapy last summer,should have had 8 lots but stopped after 5 due to side affects.
Was due to have debulking September 22 but cancelled it.
I have been really ill January to May this year ,infection,sepsis and lung drain. Was given 6 months life expectancy in February and put on palliative.
Started to pick up in June had scan and showed stable desease,have felt really good since🙏
It's a miracle 🙏
@elle797 You have been through so much. If you feel comfortable sharing, I'm curious why you cancelled surgery last September. Since you entered palliative care in February I'm thinking that perhaps you decided that enough was enough with the treatments.
I'm very happy for you that you feel much better and that the scan showed stability and even a decrease. This is very good news.
Do you have support from family? A healing prayer circle?
@elle797 You have been through so much. If you feel comfortable sharing, I'm curious why you cancelled surgery last September. Since you entered palliative care in February I'm thinking that perhaps you decided that enough was enough with the treatments.
I'm very happy for you that you feel much better and that the scan showed stability and even a decrease. This is very good news.
Do you have support from family? A healing prayer circle?
Hello Thankyou for your message... again just before I was due to have the operation my scan showed the cancer was stable.
When I finished chemo I went on a mostly all organic diet and lots of organic carrot juice,made by myself with ginger and turmeric,I put the stable desease down to that , and with only the knowledge of the op going to give me just an extra 6 months I chose to decline it.
I had 4 good months till January this year then I was taken ill with a bad infection.
When I was told in February my life expectancy was 6 months,I decided to start taking medical cannabis and started improving more or less straight away,the first time I had felt like myself for a long time and I just kept getting better and better,
None of us know what the future holds,I believe god sent me a miracle, however long it lasts no one knows 🙏
Hello Thankyou for your message... again just before I was due to have the operation my scan showed the cancer was stable.
When I finished chemo I went on a mostly all organic diet and lots of organic carrot juice,made by myself with ginger and turmeric,I put the stable desease down to that , and with only the knowledge of the op going to give me just an extra 6 months I chose to decline it.
I had 4 good months till January this year then I was taken ill with a bad infection.
When I was told in February my life expectancy was 6 months,I decided to start taking medical cannabis and started improving more or less straight away,the first time I had felt like myself for a long time and I just kept getting better and better,
None of us know what the future holds,I believe god sent me a miracle, however long it lasts no one knows 🙏
Congratulations on helping control your disease process with complementary therapies. I have also done that and am in year 12 with metastatic squamous cell carcinoma. I recommend a book titled The Rebel's Apothecary by Jenny Sansouci to learn about medical mushrooms (not hallucinogenic) and also marijuana information. She kept her father alive for over 3 years with pancreatic cancer and I learned a lot from all her research and shared information. I know of another patient who controlled his advanced prostate cancer for over 14 years with medical marijuana, supplements, and diet and exercise. I'm so glad that you are enjoying life again. Stay strong and continue your march toward good health.
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I can relate so much to your story and all the losses, ptsd and indescribable feeling of being yet not being connected to the world. I too lost my fertility and was told with my diagnosis not to expect to be around for than about a yr. @princessmaza. and @turbo48 what can I do to help or what are you most wanting to know?
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2 ReactionsColleen - how are you doing? I was just diagnosed with the same, and don't know what next steps will be, as I have to wait to get into oncologist for another week. Please tell me... are you getting through that ordeal OK?
How awful for your son, & his parents to go through this disease. How is he doing now?
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1 ReactionMy wife had a double masectomy 3-1/2 years ago. On her final visit to the reconstrucivesurgeon, he took samples from lymph nodes adjacent to the surgeries. Lo and behold, Sloan Kettering, who analyzed the cells, said they found peritoneal cancer cells. Now, after all this time and on the second set of oncologists, all any has done is give her oral chemo. No one has done the imaging to find where it is located so no biopsies. Her CA-125 went from 32 to 55 in the past few months, which has caught her oncologist's attention, Very frustrating.
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Helpful -
Hug
1 ReactionHi, I had surgery for ovarian and peritoneal cancer 5/31/23. So far chemo is going great and my ACR number is down to 8. I’ve been taking Enterade, an oncology food that helps with gastrointestinal function (i.e. bowel movements) It’s expensive, but you may be able to get insurance to cover it. Just thought I’d pass this along.
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Helpful -
Hug
4 ReactionsActually, Enterade is something you drink. I don’t know why the label on the bottle calls it a food.
Hi I was diagnosed in March 22 with advanced 3c primary peritoneal cancer.Had chemotherapy last summer,should have had 8 lots but stopped after 5 due to side affects.
Was due to have debulking September 22 but cancelled it.
I have been really ill January to May this year ,infection,sepsis and lung drain. Was given 6 months life expectancy in February and put on palliative.
Started to pick up in June had scan and showed stable desease,have felt really good since🙏
It's a miracle 🙏
-
Like -
Helpful -
Hug
9 Reactions@elle797 You have been through so much. If you feel comfortable sharing, I'm curious why you cancelled surgery last September. Since you entered palliative care in February I'm thinking that perhaps you decided that enough was enough with the treatments.
I'm very happy for you that you feel much better and that the scan showed stability and even a decrease. This is very good news.
Do you have support from family? A healing prayer circle?
-
Like -
Helpful -
Hug
3 ReactionsHello Thankyou for your message... again just before I was due to have the operation my scan showed the cancer was stable.
When I finished chemo I went on a mostly all organic diet and lots of organic carrot juice,made by myself with ginger and turmeric,I put the stable desease down to that , and with only the knowledge of the op going to give me just an extra 6 months I chose to decline it.
I had 4 good months till January this year then I was taken ill with a bad infection.
When I was told in February my life expectancy was 6 months,I decided to start taking medical cannabis and started improving more or less straight away,the first time I had felt like myself for a long time and I just kept getting better and better,
None of us know what the future holds,I believe god sent me a miracle, however long it lasts no one knows 🙏
-
Like -
Helpful -
Hug
6 ReactionsCongratulations on helping control your disease process with complementary therapies. I have also done that and am in year 12 with metastatic squamous cell carcinoma. I recommend a book titled The Rebel's Apothecary by Jenny Sansouci to learn about medical mushrooms (not hallucinogenic) and also marijuana information. She kept her father alive for over 3 years with pancreatic cancer and I learned a lot from all her research and shared information. I know of another patient who controlled his advanced prostate cancer for over 14 years with medical marijuana, supplements, and diet and exercise. I'm so glad that you are enjoying life again. Stay strong and continue your march toward good health.