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Pseudo Myxoma Peritonei
I went to surgery to remove a large ovarian and a mesenteric cyst and when I came out I was told I had a rare type of tumor called Pseudo Myxoma Peritonei. surgeons removed my uterus, ovaries, appedix , omentum and lots of abdominal fluid. My gyno (who was told at the time the tumor was benign) put me on HRT. my oncologist (GI tract specialist) later told me it was borderline tumor. I will need chemo in 4 months and Im now worried that HRT might not be a good idea. does anyone know anything about this disease?
New to the forum. My brother just had surgery for peritoneal mesothelioma in Omaha at Creighton University Medical Center. Surgical protocol is virtually identical to PMP. His surgeon is Dr. Jason Foster who also teams with Dr. Loggie. In the short time I've been here in Omaha, I've met several PMP patients who were turned down by Dr. Sugarbaker. One of their comments was that Dr. Sugarbaker "cherry picks" who he does surgery on so that his statistics are high. We're from Denver, and all the information we got from various meso organizations and oncologists in Denver said, "don't go to Sugarbaker". So if you're worried at all about waiting until July to meet with Dr. Sugarbaker, you may want to call the Loggie/Foster team in Omaha ... they've been absolutely wonderful and timely in working with my brother and their other patients worship them. Good Luck!
Take it easy girl.
I know how exciting it is to see first hand how much one can do after surgery, but if someone has to bann you from working, thenyou've done way too much.
Please listen to your body :)
As for loosing 13 pounds.I totally understand what forgetting to eat means. im one of those people who does not feel hunger, but feel suddenly dizzy because I didnt eat for a long while. But I'm sure you're not allowed to let that happen to you now. I found that having the alarm on my mobile phone set for a 4 hour reminder, and a pack of prepared healty snacks helps with this problem.
All the best,
Amani
I know how exciting it is to see first hand how much one can do after surgery, but if someone has to bann you from working, thenyou've done way too much.
Please listen to your body :)
As for loosing 13 pounds.I totally understand what forgetting to eat means. im one of those people who does not feel hunger, but feel suddenly dizzy because I didnt eat for a long while. But I'm sure you're not allowed to let that happen to you now. I found that having the alarm on my mobile phone set for a 4 hour reminder, and a pack of prepared healty snacks helps with this problem.
All the best,
Amani
Hi Amani,
How are you? I still haven't got my scan results - my PMP team manager is on holiday until the 23rd of March, but I've left her an email. Thank your family for their thoughts, they all help! I don't mind Lisa or Liza, I get some weird spelling of my first and last names!
I'm not too worried about the scan, PMP is generally very slow growing and even in the 18 months I've had it I've seen advances in treatment, so there's a bit of a safety net if everything isn't wonderful! I was in contact with a woman in California who was diagnosed and had surgery for OVCA stage 3 about 14 years ago when she was in her early 30's, it was apparently cured. Then 2 years ago she started having problems again, saw her doctor, they did surgery and found it was PMP all along and it had returned. Since then she's had the full cytoreduction and HIPEC is as right as rain again - it gives me a lot of hope that if it does come back it can be sorted out!
I've finished my 12 shifts, was very tired at times but it was more successful than I had imagined it would be! I'm exactly 5 months post op and I actually feel I'm getting physically stong again, my leg and back muscles aren't getting tired and wobbly, I can run up stairs and generally have got back to charging around. My stomach has that tingly, swollen done-to-much feeling though, so I've proberbly done too much lifting. It feels really good, it's taken me by surprise how much I've improved in the past few weeks. Darren has banned me from working this weekend, that's why I've been able to have time to go on the computer!
Going back to work has also highlighted another issue I didn't realise I had. When I was at home I ate small amounts often because of the feeling of fullness from the stomach surface stripping and swelling, I like eating and it was good picking all day! Now I've got something else to think about I've realised I hardly ever feel hungry and forget to eat, I suddenly realise at 10pm that I've not eaten anything since the previous day. I've lost 12lb in 3 weeks! So I'm trying to make sure I eat regularly now, although I could do with loosing some weight and I've I long way to go until I'm a size zero!!!!
Keep positive and smiling!
Lisa xxx
How are you? I still haven't got my scan results - my PMP team manager is on holiday until the 23rd of March, but I've left her an email. Thank your family for their thoughts, they all help! I don't mind Lisa or Liza, I get some weird spelling of my first and last names!
I'm not too worried about the scan, PMP is generally very slow growing and even in the 18 months I've had it I've seen advances in treatment, so there's a bit of a safety net if everything isn't wonderful! I was in contact with a woman in California who was diagnosed and had surgery for OVCA stage 3 about 14 years ago when she was in her early 30's, it was apparently cured. Then 2 years ago she started having problems again, saw her doctor, they did surgery and found it was PMP all along and it had returned. Since then she's had the full cytoreduction and HIPEC is as right as rain again - it gives me a lot of hope that if it does come back it can be sorted out!
I've finished my 12 shifts, was very tired at times but it was more successful than I had imagined it would be! I'm exactly 5 months post op and I actually feel I'm getting physically stong again, my leg and back muscles aren't getting tired and wobbly, I can run up stairs and generally have got back to charging around. My stomach has that tingly, swollen done-to-much feeling though, so I've proberbly done too much lifting. It feels really good, it's taken me by surprise how much I've improved in the past few weeks. Darren has banned me from working this weekend, that's why I've been able to have time to go on the computer!
Going back to work has also highlighted another issue I didn't realise I had. When I was at home I ate small amounts often because of the feeling of fullness from the stomach surface stripping and swelling, I like eating and it was good picking all day! Now I've got something else to think about I've realised I hardly ever feel hungry and forget to eat, I suddenly realise at 10pm that I've not eaten anything since the previous day. I've lost 12lb in 3 weeks! So I'm trying to make sure I eat regularly now, although I could do with loosing some weight and I've I long way to go until I'm a size zero!!!!
Keep positive and smiling!
Lisa xxx
LOL I was cheking in to see if you've posted anything about your results and it hit me for the first time that your name is LiSa not LiZa. Im sooooo sorry, this disease is done something to my brain :)
Please keep me posted
Peace,
Amani
Please keep me posted
Peace,
Amani
Please know that my family and i are crossing our fingers and sending you positve thoughts.
Hope CT is all good news
Peace,
Amani
Hope CT is all good news
Peace,
Amani
Hi Amani,
I always think PMP and the treatment sounds like something science-fiction too, or expect it to be one of the weird diseases on 'House'!
I had my CT scan on Thursday, I won't get my results for a couple of weeks though, so I'm keeping my fingers crossed!
I feel almost back to normal, I've been running around like a crazy woman at work! I've just done a run of 7 days, and have another 5 to go, if I can do that I'll definately know I'm back to better than pre-PMP!
Keep smiling!
Lisa xxx
I always think PMP and the treatment sounds like something science-fiction too, or expect it to be one of the weird diseases on 'House'!
I had my CT scan on Thursday, I won't get my results for a couple of weeks though, so I'm keeping my fingers crossed!
I feel almost back to normal, I've been running around like a crazy woman at work! I've just done a run of 7 days, and have another 5 to go, if I can do that I'll definately know I'm back to better than pre-PMP!
Keep smiling!
Lisa xxx
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