Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

New to the group, would like to share my experience with you.

cbranco
Posted by

I was looking for some information about my problem and i found this amazing group, that has lots of information and has been very helpful. I am from Portugal, so forgive me if my spelling is not very good, but i would like to share my experience with you.

Last November i was feeling some discomfort on my belly and i went to the hospital to try to find out what was wrong with me. At first, after a TAC scan, i was diagnosed with atypical appendicitis, so i had emergency surgery and extracted my appendix. At the time i thought that would be the end of it, but soon i would learn that i couldn't be more wrong.

About two weeks later, i was told that a tumour was found in the appendix (T4A N0) and that i would need another surgery to remove a part of the intestine and clean everything around it. I had that surgery early this month and the results were encouraging, apparently there was nothing left of the tumour, only some minor traces were found in the area were the appendix meets the intestine, that were removed.

The wall of the appendix was already ruptured, when it was extracted, so i will have to undergo chemotherapy for the next six months. Last Friday i had some minor surgery to implant a catheter on my chest and next Tuesday i will have the first of twelve chemotherapy sessions. After each session i will take a diffuser with me, that will be removed two days later.

Everything is new to me, i haven't met anyone that had the same problem or that could give me some much needed advice. I am very glad i found this group, the information you share on line has been very useful and has helped me a lot in preparing for what's to come.

Thank you for your help

Carolyn28
Posted by

hi Cbranco

welcome to the online community

we do have some other Portuguese if you want to make friends  is Paula from the breast group, she's over half way through chemo.

We also have a chemotherapy group where you can chat to others about side effects and diet tips, it's important to have good nutrition to help your body heal.

very best wishes

Carolyn

x

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

pmpsurvivor
Posted by

Hello cbranco, hope everything is going well. Are you seeing an appendix cancer specialist?


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
cbranco
Posted by

Hello Pmpsurvivor,

I am being accompanied by a team of oncologists, lead by a doctor who specializes in intestine cancer (not sure if this is the english term).

I have had two surgeries, an emergency surgery to remove the appendix, before they realized what my real problem was. After that surgery, they found and analysed the tumour on the removed appendix and then i started seeing the oncology team. I had a second surgery, to remove a piece of the intestine and make sure that there were no more traces of the tumour in the surrounding area and that the oncologists had a proper look at everything.

Because the cancer had already grown through the serosa, i am doing chemotherapy (now on my second session, out of twelve), just as a precaution. After this treatment, i will be accompanied regularly by the same oncology team for the next ten years.

Chemotherapy is not the nicest experience i ever had, but my experience (so far) has been much better than what i was expecting. I spend a day in the hospital doing the chemotherapy treatment and then i carry a diffuser on my waist for the next two days. Two weeks later, the "fun" starts all over again, i get sick as an old dog for two or three days and slowly get back to normal again..

Can't wait for all this to be over and start leading a "normal" life again... I miss riding my vespa and having a beer with my friends on a beach bar, at the end of the day.

If you have any advice for me, i will be more than happy to read it.

pmpsurvivor
Posted by

Hi cbranco, sorry, I haven't been on here for a little while. How's your treatment going?


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
pati
Posted by

Olá Cbranco

também sou de Portugal e também tive cancro do apêndice em 2010. 

No meu caso fiz cirurgia + quimioterapia intra peritoneal. 

Está tudo a correr bem consigo?

Michael - Macmillan

Just run this through Google translate:

 - 


Hello cbranco I am also from Portugal and I also had cancer of the appendix in 2010. In my case I did surgery + intraperitoneal chemotherapy. Is everything going well with you?

pmpsurvivor
Posted by

Hope I'm not breaking any forum guidelines here. There is a PMP community on RareConnect which is available in several languages including Portuguese:

https://www.rareconnect.org/en/community/pseudomyxoma-peritonei (the English one, choose your language on the top right).


Using Google Translate / Usando Google Tradutor:

Espero que não esqueça as orientações do fórum aqui. Existe uma comunidade PMP no RareConnect que está disponível em vários idiomas, incluindo portugueses:


www.rareconnect.org/.../pseudomyxoma-peritonei (o inglês, escolha o seu idioma no canto superior direito).


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor