My husband is on year 11 with Pseudomyxoma Peritonei, mucinous carcinoma of the appendix.
He has had three cytoreduction surgeries (debulking) each listing 12-15 hours. He has had one with EPIC heated Chemo, one with HIPEC and one without chemo.
Recovery has varied. After the first surgery, his recovery was a good 6 months. After the second surgery with HIPEC, he had to adjust some of his eating habits as he could no longer tolerate dairy. After the third, he has a colostomy and some post op issues with a rectal fistula. However, he felt great.
As for now, the mucin is back, but growing slowly. He lives a full life and we are blessed to have had the best surgeons care for him.
This picture was taken a couple weeks ago!
I would be happy to answer any questions or just be a sounding block from people living with this disease.
Hi Jan, what a story. And what a fish (not a fish story, lol). Like @dntsass01's son's story, your husband's experiences brings hope. I really appreciate your joining this discussion group. I'm sure that @turbo48@scjoyce and @dorcarvajal will appreciate bouncing things off you and having your support.
A few days ago, I finally had my chemo port removed, which was part of me for three years after I was diagnosed with peritoneal cancer. It’s been a long journey and my oncologist was reluctant to have it removed for fear of a relapse. But here I am, in remission, benefitting from the treatment of chemo, immunotherapy and surgery. Grateful to hear the birds sing in my garden and savoring my exodus from cancerland.
Hi Dor, I add my welcome. I noticed that you wanted to post a link to an essay you wrote for StatNews with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
It is a beacon of hope to hear you say that you're "savoring my exodus from cancerland." Many cancer survivors, even when there is no evidence of disease (NED), still don't feel like they can truly exit cancerland. There's the regular checkups and scanxiety, and every medical symptom makes one wonder... What is your tip to others to embrace the exit?
A few days ago, I finally had my chemo port removed, which was part of me for three years after I was diagnosed with peritoneal cancer. It’s been a long journey and my oncologist was reluctant to have it removed for fear of a relapse. But here I am, in remission, benefitting from the treatment of chemo, immunotherapy and surgery. Grateful to hear the birds sing in my garden and savoring my exodus from cancerland.
Congratulations @dorcarvajal!!! You have earned your right to savor your exodus. I truly understand what a milestone this is, as I look forward to the day when I can join you. My 3-year mark will be this fall, I am in remission with NED after a similar treatment experience as yours, although for a different cancer, and my doctors are discussing removing my port. Here's to your continued good health 🙂
Hi Dor, I add my welcome. I noticed that you wanted to post a link to an essay you wrote for StatNews with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
It is a beacon of hope to hear you say that you're "savoring my exodus from cancerland." Many cancer survivors, even when there is no evidence of disease (NED), still don't feel like they can truly exit cancerland. There's the regular checkups and scanxiety, and every medical symptom makes one wonder... What is your tip to others to embrace the exit?
Thanks for posting that essay Coleen. Since I wrote it, I have heard from families all over the world desperate for information about treating this rare form of peritoneal cancer. I wish there was some site that they could turn to for an up to date guide about treatment. Like everyone else, I feel dread every time I have to go for a scan or a blood test for CA125. I simply think in terms of one step forward, fall down, get back up. So far it’s been an incredible relief when the results come in. Meantime, I savor the present.
Congratulations @dorcarvajal!!! You have earned your right to savor your exodus. I truly understand what a milestone this is, as I look forward to the day when I can join you. My 3-year mark will be this fall, I am in remission with NED after a similar treatment experience as yours, although for a different cancer, and my doctors are discussing removing my port. Here's to your continued good health 🙂
Thank you. Since I wrote it, I continue to be contacted by families all over the world seeking information about this rare disease. There is a strong need for up to date guides.
Thank you. Since I wrote it, I continue to be contacted by families all over the world seeking information about this rare disease. There is a strong need for up to date guides.
Hi @turbo48, I moved your message from the Blood Cancers group to the Cancer group (https://connect.mayoclinic.org/group/cancer/). Peritoneal cancer is a rare cancer that develops in a thin layer of tissue that lines the abdomen. It also covers the uterus, bladder, and rectum. I also added it to the Gynecological Cancer group (https://connect.mayoclinic.org/group/gynecologic-cancer/) since peritoneal cancer acts and looks like ovarian cancer.
Turbo, what treatment have you had? How are you doing?
I was dx in Jan 2022 with Primary Peritoneal Cancer. I have battled with repeated UTIs that have caused me to be hospitalized 5 times which delays my Chemo treatments. At the Mayo Clinic now to discuss taking the chemo pill. Anyone else have similar issues?
I was dx in Jan 2022 with Primary Peritoneal Cancer. I have battled with repeated UTIs that have caused me to be hospitalized 5 times which delays my Chemo treatments. At the Mayo Clinic now to discuss taking the chemo pill. Anyone else have similar issues?
Hi Pam, please accept my belated welcome. It can be so stressful to have symptoms that cause delays in chemo treatment. I'm sure you just want to stay on track and get rid of this darn cancer.
How did the appointment at Mayo turn out? Is oral chemo a good option for you?
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Hi Jan, what a story. And what a fish (not a fish story, lol). Like @dntsass01's son's story, your husband's experiences brings hope. I really appreciate your joining this discussion group. I'm sure that @turbo48 @scjoyce and @dorcarvajal will appreciate bouncing things off you and having your support.
Your participation would also be very welcome in the ostomy group here:
- Ostomy https://connect.mayoclinic.org/group/ostomy/
How are you doing with the return of mucin and what lies ahead?
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1 ReactionHi Dor, I add my welcome. I noticed that you wanted to post a link to an essay you wrote for StatNews with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
- Male doctors said my ‘female’ cancer was incurable. Then a woman took command and gave me hope https://www.statnews.com/2018/10/04/peritoneal-cancer-women-men-doctors/
It is a beacon of hope to hear you say that you're "savoring my exodus from cancerland." Many cancer survivors, even when there is no evidence of disease (NED), still don't feel like they can truly exit cancerland. There's the regular checkups and scanxiety, and every medical symptom makes one wonder... What is your tip to others to embrace the exit?
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Hug
4 ReactionsCongratulations @dorcarvajal!!! You have earned your right to savor your exodus. I truly understand what a milestone this is, as I look forward to the day when I can join you. My 3-year mark will be this fall, I am in remission with NED after a similar treatment experience as yours, although for a different cancer, and my doctors are discussing removing my port. Here's to your continued good health 🙂
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3 ReactionsThanks for posting that essay Coleen. Since I wrote it, I have heard from families all over the world desperate for information about treating this rare form of peritoneal cancer. I wish there was some site that they could turn to for an up to date guide about treatment. Like everyone else, I feel dread every time I have to go for a scan or a blood test for CA125. I simply think in terms of one step forward, fall down, get back up. So far it’s been an incredible relief when the results come in. Meantime, I savor the present.
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6 ReactionsThanks @polkagal. Thrilled for you.
@dorcarvajal What an excellent article! Thank you for writing it, although I’m sorry about the circumstances that got you there. Becky
Thank you. Since I wrote it, I continue to be contacted by families all over the world seeking information about this rare disease. There is a strong need for up to date guides.
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2 ReactionsHave you heard of the book: “Unwell Women: Misdiagnosis and Myth in a Mam-made World” ?
I was dx in Jan 2022 with Primary Peritoneal Cancer. I have battled with repeated UTIs that have caused me to be hospitalized 5 times which delays my Chemo treatments. At the Mayo Clinic now to discuss taking the chemo pill. Anyone else have similar issues?
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Like -
Helpful -
Hug
1 ReactionHi Pam, please accept my belated welcome. It can be so stressful to have symptoms that cause delays in chemo treatment. I'm sure you just want to stay on track and get rid of this darn cancer.
How did the appointment at Mayo turn out? Is oral chemo a good option for you?