Primary cancer of appendix and secondary peritoneal cancer

HiJimBob99 and a warm welcome to the board. As you say, it is quite a rare cancer and there isn’t a specific forum for it but There’s a really good link in the post  below which will hopefully be helpful? I’ll also tag pmpsurvivor to see if she’s still active on the board and able to help!

 Appendix Cancer - Goblet Cell adenocarcinoma 

Take care

Karen x

Hi JimBob99 

There might also be some helpful information in this group in the community-

Pseudopyxoma Peritonei Group

And there may be more in this group which could be useful

Peritoneal Cancer Group

Sarah xx

Great - thank you

Hi

Not sure if its quite the same but my husband has Caecum cancer which started near his appendix with spread to liver and peritoneal, I've found it very difficult to find anything on this specific cancer but I have found this forum great for support and advice on dealing with the symptoms and treatments. Please feel free to read my profile. 

 Nancy x

Thanks, Kareno62 , I'm still here. Sorry for the tardy jump-in (I've not been well). 

JimBob99 , Please make sure that your case is known to one of the appendix cancer teams. They are in Basingstoke, Birmingham and Manchester. They should review your case before any further treatment is given. In terms of support, the most active group is the Pseudomyxoma Survivor one on Facebook. There's also, as has been pointed out, the pseudomyxoma one here.

Always happy to help (if I can!).

 pmpsurvivor 

Hi Angela 

Thanks for replying - my Oncologist has spoken about the Basingstoke team last week in my first appointment - but said the focus right now should be chemo to reduce/ kill the cancer and then they will make an assessment on operative options etc.

Obv I am all new to this so any advice appreciated

Angela how long since you were diagnosed and what treatment have you undergone - are you in remission? And if yes how long?

Thanks

James

Hi James

Brilliant news that Basingstoke has oversight. I was misdiagnosed with ovarian cancer in 2010 and then had that changed to pseudomyxoma peritonei (PMP) after a hysterectomy. I had cytoreductive surgery (CRS) with hyperthermic intra-abdominal chemotherapy (HIPEC) in 2011. The cytoreductive surgery aimed to remove all visible disease (down to 2mm) with the HIPEC sweeping up any remaining disease.

I was diagnosed with a recurrence about 3 years later and had further treatment in Basingstoke this February. I'm not disease free and that wasn't the intention of the last surgery. The intent was to improve my quality of life, which it has. Scans every 6 months for now to monitor progress.

Angela

Hi Angela 

That’s an amazing journey and just reading it fillls me with hope that there are options out there to fight this. From what the consultant has told me I know I will not be “cured” but I have a 5 and 9 year old  (I was a late starter ), so really focused on extending my life as long as I can for them and my wife and family

Hi Jimbob99

Much Like you I was sent to A&E with a burst appendix when I was 48. 
After Appendectomy and subsequent pathology I was fount to have an ex goblet cell carcinoid tumour. Right hemicolectomy and chemotherapy followed.

I was surveilled for 5 years post chemo and given the all clear.

last month, six years since my treatment I was found to have extensive peritoneal metastases.

I’m 55 now started my Chemo again today, 3 days after you. How did it go?

I just thought I’d reach out to you as our stories seem quite similar.

My oncologist is also speaking to Basingstoke. 

I’m happy to share if I can be of any help

Good luck

Hey Richie

Started last week. I am on Folfox and Vectibix. Seem to be doing ok bit tired and not sure if you get more side effects the further you get into chemo treatment. 

My oncologist has said need to get the cancer reduced then I think Basingstoke do a risk assessment. Main issues for me at the moment are ascities (not sure if you have that issue) - been drained twice and maybe another imminent bit hoping the chemo stops the fluid - also have a bit of that fluid on my right lung which causes some breathing issues but can do most day to day stuff at the moment.

How’s your treatment gone so far? Yeah happy to share info ongoing if that works for you .

Take it easy

James