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New Discussion Board for Primary and Secondary Peritoneal Carcinoma

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all: I received an email from Greta (the site webmaster) which I'm sure you did too. Here is what she said. She is willing to set up a Discussion Board for Primary and Secondary Peritoneal Carcinoma (peritoneum cancer? which is right?) for a trial period of 3-6 months which will be monitored for use, postings, etc. by folks now presumably posting under the colerectal, ovarian, and rare and other cancers discussion boards. She told me there used to be a dedicated board for it but it wasn't used much. We are collectively to agree that this would be a good Discussion Board to have. I included the secondary bit because a lot of people, like, ended up with it when tumours metatasized from elsewhere rather than started there. The treatments can be similar or not, the symptoms can be similar or not, but the stresses are the same. Can you let me or Greta know this is where we want to go? I do as it would help me sort through the amazing amount of material a lot. We would let the other discussion boards know this is what has been done.
Cheryl

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Can I suggest the board is called Peritoneal Cancer so that people with both primary and secondary can post.

Can you tell me how I can contact the administrator as I have messaged them twice now and have not received a reply.

Thanks Tina xx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Tina: Great idea! There were quite a few people on your original post on the topic who agreed and they could strengthen our case. I'll try and access the email she sent to me (I was likely the last one who emailed her and that is the one she answered)and email it to you through CSN Email? I'm going to try to have two windows open at the same time.
I love your new picture! You have a beautifully shaped head. If my hair all falls out, it will not be good (so far it is just breaking off).
Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Peritoneal cancer/mets are handled quite differently from other cancers.

By the way, Cheryl, the GI chemo that we get (Folfox) doesn't usually cause the hair to fall out (though I lost most of mine from the eyebrows, down!) However, my hair completely changed texture - I never imagined myself with absolutely straight hair! I've had curls since the day I was born. It took almost 2 years for my hair to go back to curly (darn - I was liking the straight hair!)

Alice

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Great news, the Peritonel message board is up and running. Thanks to everyone who lobbied for it.

Tina xxx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Alice: Mine started breaking off around the hair line (especially front, sides, and top) right after the 2nd treatment - so didn't fall out. How interesting that you had the texture/curl change too! Mine went from dead straight (like you want) to sort of curly (like I want) for some reason at the end of the cisplatin/gemcitibine treatments in February. I'll be some angry if it goes back to straight! I'm enjoying this showering, fluffing and fingering, and good to go rather than hours curling it to have it go straight again from the humidity here in summer (and the sweating that FOLFOXFIRI treatment seems to be causing for me at least). I did lose some (not all) of my eyelashes, and arm and leg hair. Lily recommended to me to use L'Oreal Lash Serum for the lashes and it works beautifully to restore them.
Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

I just had the Folfox. I, too, lost most of my eyelashes and eyebrows, and general body hair (except for my head.) All has grown back - eyelashes and eyebrows are normal now.

Glad to see we have our own discussion section now - I'll be posting on the new board in the next few days.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Taking this discussion across to the new Peritoneum Board, since I want them to see it well supported during this trial period
AussieMaddie

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