You can leave your comments here and your messages to other survivors or visitors to the website. We’re interested to know what brought you to our website, how we can improve the site to provide better support and other ways we can help. Or maybe you just want to say hello, that’s ok too.
We look forward to reading them. You can also get in touch on Facebook, Instagram or Twitter as well.
nine years since diagnosis, six since CRC and HIPEC with Dr. Martin Goodman at Tufts in Boston. NED and enjoying life. A PMP Survivor !
Thanks, Terry, and congratulations on 9 years!
My brother was diagnosed 2 years ago, had debulking surgery plus HIPEC. Didn’t get it all but yearly scans and he’s still fighting.
Great
Hi. It is now 10 years and 4 months since my big operation and thanks to Brendan and his wonderful care. I am able to enjoy life with my daughter and grandaughters in Hampshire. If I am able to help anybody with the same problem, I am happy to.
Hi, Doreen, congratulations on reaching 10 years!! And thank you so much for your offer of help. Perhaps you would consider becoming one of our buddies.
Angela
Hi Doreen,
Congratulations on your 10 years. I am currently struggling with my diagnosis and the future and would really appreciate any advice and support.
Thank you
Lucy
Congrats, that’s amazing. I was diagnosed six months ago after a hysterectomy and was expecting to have the big op in Basingstoke in two weeks but just been told they just going to do an appendectomy as my scan, etc, looked good.
Best wishes for your upcoming operation, Denise!
Hello ! I live in the north of Sweden in Umeå I an 61 . I had CRS and HIPEC six years ago at the Academic hospital in Uppsala . I had a great fortune to meet a fantastik surgeon – Haile Matheme. He and his team saved my life and I an greatful for every new day I can spend with my highly loved family. I have even been blessed with two grandchildren.
Hi all,
I live in the US and have been a PMP survivor since 2002. Started a blog because I felt the need to give back somehow. I love seeing all the positive comments and success stories on your site! If anyone is interested, you can find my blog on https:// cancertalk-patient2patient. com. I just set it up and I hope it works! Sorry about how long it is. My husband says I should break them up into smaller sections but I’m learning.
**admin edit: The blog is no longer available.
I live in the US and have a long standing history of PMP will multiple MOAS surgeries. I was diagnosed in 2002 while in my early 30’s. Prior to being a PMP survivor, I worked first as a Registered Dietitian in a hospital and then went on to go to become a Physician Assistant. Despite this, prior to my diagnoses, I had never heard of or treated anyone with PMP.
I plan on trying to continue living until I’m 100 yo and think that as a group; PMP survivors can help facilitate the ultimate total cure by advocating for ourselves and by keeping up on new research. I started a blog as a way to ‘give back’ somehow. If anything I have to say can help someone else then it is all worth it. Thanks and here’s to living well despite PMP!!!
**Editor’s note: The link to Linda’s blog has been removed as it is broken.
Thank you for sharing your blog with us, Linda! It’s so great that you want to give something back to the PMP community. Perhaps you could write a post for our blog sometime?
As survivors and caregivers, we are not health care professionals. We are all individuals, everyone is different. We recommend that you take advice from your doctors for specific information.
It is now 6 weeks since my operation and HIPEC at Basingstoke and I start more chemo on Wednesday. I think all the team at Basingstoke are amazing and show the NHS at their best. The care was exceptional and they are totally focused on the patient’s recovery. If anyone is going to Basingstoke, have total confidence in the team.
Hi Alan
Just read your post and hope that you are doing OK a year on from your surgery. I’ve been diagnosed this year with PMP. Having Folfox chemo & have had 2 drains. My oncologist has to send results of CT scans 3rd to Basingstoke but have been told it’s inoperable at present.
Would value a response as it’s all rather daunting.
Best regards Clive
Clive,
I am fine thank you. At present we are on QM2 heading to New York and I am doing three miles a day on the treadmill where I discovered what turned out to be the PMP tumour.
I was just diagnosed with appendiceal cancer. Getting HIPEC in Pittsburgh on Jan. 29th. I would love to know specifics from anyone about after surgery experiences. Thank you.
Greta
Hello Greta,
I’m sorry to hear about your diagnosis. Specifics are do individual, it would be hard to say. I would suggest that you join our Facebook group – the details can be found on our Community page.
Angela
Joining the FB group is a good idea. It was there I finally found out what was wrong with me after years of misdiagnosis and the wrong treatment. Hearing and seeing others having similar experiences and also the same treatment as me was a huge help. It literally was a life saver!
I just found out on May 10, 2019 I have this. I went to the hospital for fluids because I thought I had a virus. They took my appendix, a valve in my bowels was removed and a large tumor in my bowel, and they did a bowel resection. It has been a whirlwind of emotions. This website has brought me so much hope. Thank you! At this point I am researching to find a doctor in the United States that specializes in this. It is hard to find anyone. I live in the Midwest. Any recommendation would be greatly appreciated. Thank you!!
21cm 4lb tumor burst. Was originally being treated for ovarian. Until they noticed my appendix during a complete hysterectomy. Took some of my omentum. Stage 4b Appendiceal Mucinous Neoplasm. CRS & HIPEC scheduled for 14 May. Your page is extremely informative, thank you.
Thank you for your comments, Melissa. Here’s hoping for an uneventful recovery upcoming surgery.
ACPMP 6 year survivor. Sending lots of love and prayers to all of those who have had, and to all of those who continue, to fight this disease.
Hi everyone, I’m two years post HIPEC surgery performed at Basingstoke where they are an absolutely amazing team, I had six months chemo locally in Milton Keynes. Now, I’m on annual checks with Mr Mohammed at Basingstoke. Stay strong be focused on your treatment, medication & diet. Be kind to yourself. Be as fit as you possibly can before surgery. Stay calm. PMP changes your life & others in your family. You have to re think & make changes. Good luck to anyone facing the surgery you will get through it & come out the other side….. happy to help anyone who needs support facing PMP surgery or diagnosis.
Hi Julie
Thanks for your support and encouragement for those who have it all to come!
Angela
Thanks everyone for your comments, this is the first time I spent hours searching for more information on PMP. I think I had been on denial. I’m 59 years old and was diagnosed with Appendix Cancer and PMP in August 2020, and had my CRS and HIPEC in September, surgery was performed by Dr. Ihemelandu at Medstar Washington Hospital in Washington DC. It’s been six months since surgery, however, I still experience a acute abdominal pain. I underwent a second trimestral evaluation last week and will have a doctor’s appointment in two days to discuss the CT Scan results. Trusting that everything will turn out just fine after reading all your valuable comments. THANK YOU!
Thank you, Frances, we’re so glad that the website has helped you. It’s early days for you yet in your recovery, you’ll et there. If you feel ready, please do consider joining our online community offering peer support for pseudomyxoma peritonei and appendix cancers.
Mum is 3 days in recovery post cyto and heated chemo in Hampshire. She phoned me for the first time today. Same old mum, a real fighter. Wanted to say hello to the community and thanks to whoever has made this excellent page.
Hi, my name is Richard.
I have PMP and I am due surgery (HIPEC) on 20th May in Basingstoke Hospital, reading the above comments have put me at ease slightly.
Getting a bit nervous as my admission into hospital gets closer. Also I live approximately 125 miles away from the hospital and being there for three weeks with no visitors will be extremely difficult for myself and family.
Would like to hear from yourselves for advice and support.
Thanks Richard.
I had my CRS/HIPEC on 21st September 2023. Recovering well at home. My family lived 150 miles away and couldn’t visit. I was in Basingstoke fir 4 weeks
What a surprise to watch Anderson Cooper on 5/24/21 and see his tribute to Faith Kleppinger, CNN staff woman (still living!) who has PMP. I went on CNN today and re-watched. My brother, Lou Houston, Bainbridge Is, WA, was diagnosed 2001 and passed 2-15-11. He had two surgeries at MD Anderson/Dr. Mansfield. All PMP’ers and families had an annual gathering in the Monterey, CA area with people attending from far and wide. When the amazing organizer passed about 2014 the PMP website she set up did not continue. Applause to all of you who have picked up the baton.
Love and Hugs to all, Linda
Hello, I. Am just recovering from pmp surgery, I had major surgery this November after it was discovered this august (2022). I have had my kidney removed, my spleen removed, my gall bladder removed and my appendix removed. My liver, diaphragm, top bowel received treatment as my did my pelvic area. I had no symptoms of this illness. I had the HIPC surgery. I am trying to cope with everyday life which is now different for me, but I have survived.
Hi Shirley
It has been 18 months since my HIPEC surgery in Calgary. It was tough but I was out in about 10 days and here I am still going!! I do feel that my symptoms of stomach distension and constipation diarrhea are recurring and i am booked for my annual CT scan in Nov..a month away. It seems you need to be on guard the rest of your life? Is there a particular diet for pmp. I was originally diagnosed with LAMN. I’m very confused about this whole disease. This site has been the most informative. Thank you!