New Discussion Board for Primary and Secondary Peritoneal Carcinoma
Cheryl
Comments
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Great news Cheryl
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 xx0 -
Peritoneal CancerTina Brown said:Great news Cheryl
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
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).
Cheryl0 -
I agree - a useful boardwestie66 said:Peritoneal Cancer
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
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!)
Alice0 -
Peritoneal message boardabrub said:I agree - a useful board
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
Great news, the Peritonel message board is up and running. Thanks to everyone who lobbied for it.
Tina xxx0 -
FOLFOXFIRI and hair lossabrub said:I agree - a useful board
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
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.
Cheryl0 -
The "Firi" part of your chemo leads to hair loss.westie66 said:FOLFOXFIRI and hair loss
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
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.0 -
Taking this discussionabrub said:The "Firi" part of your chemo leads to hair loss.
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.
Taking this discussion across to the new Peritoneum Board, since I want them to see it well supported during this trial period
AussieMaddie0
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