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.
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.
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 🙂
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?
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 @dorcarvajal Welcome to Mayo Clinic Connect. Congratulations on your port removal! Wow, this is a moment of celebration for you! Three years is a really long time to have to deal with a port! Yes, it’s convenient for blood work and all the chemo, meds, fluids running through the ‘mixer’…. But I remember how long it took daily to put the waterproof barrier over the top just to take a shower and the inconvenience under clothing!
The biggest triumph is that you no longer need it! I can feel the jubilation in your words! It’s a feeling like no other…that visceral sense of accomplishment when you have faced the most aggressive battle of your life and came out the other side as a victor. Yes! The birds sing louder, you enjoy the buzzing of the bees, you have a sense of calm and patience. Do you also feel a brain shift in that you no longer have a tolerance for negativity and anger? There is a new appreciation for every moment and each day is a gift. Yes, I’ve been there! ☺️
Sharing your story is what Mayo Clinic Connect is all about. We are a community of people who have our own journeys to share. By doing so we help each other by offering encouragement, answering questions and most of all, giving a sense of hope.
May I ask what brought you to Connect?
Again, a heartfelt congratulations! I think all the fireworks for today, being the 4th of July, will be for you. Lori.
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.
Dntsass01, I’m sure @scjoyce will appreciate connecting with you. I realize it was 20 years ago, but do you recall what the recovery from surgery was like for your son’s peritoneal cancer?
My husband has had 3 surgeries in the last 10 years. His last was 2018. Recovery has varied each time. His number one recommendation is to walk and build up your heart and lung strength before surgery. He feels that is so beneficial in recovery. He was more fit before each surgery. Also, walking as soon as you can after surgery. A high protein diet helped with recovery and he had to limit ruffage after each surgery. Dairy also became an issue after surgery #2, so he no longer eats any dairy.
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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 Reactions@dorcarvajal What an excellent article! Thank you for writing it, although I’m sorry about the circumstances that got you there. Becky
Thanks @polkagal. Thrilled for you.
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.
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Helpful -
Hug
6 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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Hug
3 ReactionsHi 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?
-
Like -
Helpful -
Hug
4 ReactionsHi 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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2 ReactionsHi @dorcarvajal Welcome to Mayo Clinic Connect. Congratulations on your port removal! Wow, this is a moment of celebration for you! Three years is a really long time to have to deal with a port! Yes, it’s convenient for blood work and all the chemo, meds, fluids running through the ‘mixer’…. But I remember how long it took daily to put the waterproof barrier over the top just to take a shower and the inconvenience under clothing!
The biggest triumph is that you no longer need it! I can feel the jubilation in your words! It’s a feeling like no other…that visceral sense of accomplishment when you have faced the most aggressive battle of your life and came out the other side as a victor. Yes! The birds sing louder, you enjoy the buzzing of the bees, you have a sense of calm and patience. Do you also feel a brain shift in that you no longer have a tolerance for negativity and anger? There is a new appreciation for every moment and each day is a gift. Yes, I’ve been there! ☺️
Sharing your story is what Mayo Clinic Connect is all about. We are a community of people who have our own journeys to share. By doing so we help each other by offering encouragement, answering questions and most of all, giving a sense of hope.
May I ask what brought you to Connect?
Again, a heartfelt congratulations! I think all the fireworks for today, being the 4th of July, will be for you. Lori.
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8 ReactionsA 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.
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Helpful -
Hug
14 ReactionsMy husband has had 3 surgeries in the last 10 years. His last was 2018. Recovery has varied each time. His number one recommendation is to walk and build up your heart and lung strength before surgery. He feels that is so beneficial in recovery. He was more fit before each surgery. Also, walking as soon as you can after surgery. A high protein diet helped with recovery and he had to limit ruffage after each surgery. Dairy also became an issue after surgery #2, so he no longer eats any dairy.
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Hug
8 Reactions