The group was on MSN which is closing down in February 2009. Because of this, the site was migrated to Multiply, but it appears to be causing our members some...
2
leesgotmf
Feb 2, 2009 4:27 am
Hi to anyone from the mycosis fungoides Uk or the Multiply Mycosis Fungoides international groups.. I hope everyone can find the new group here.. Leet...
3
Anton Peploe
anton.peploe
Feb 2, 2009 9:23 am
Hello all: Just to confirm I too have joined / transferred my membership to this Yahoo group. My IT skills are such that I may have already sent a similar...
4
Who Wants to Know?
readnlady
Feb 2, 2009 3:21 pm
Okay, have followed to Yahoo. I already had a Yahoo id so was easy to join. I like this better than the other site, I never did get to actually just join the...
5
roger13030
Feb 2, 2009 4:14 pm
Hello members, I have joined the group with no problem whatsoever. Perhaps the reason it was easy is that I already have a Yahoo i.d. even though I had not...
6
stephenjwilding
Feb 2, 2009 4:27 pm
I was a member of the 'old group' since 2003 under the name 'Steve' but for the past couple of years have been unable to get in - although still receiving the...
7
pat.dreyer
Feb 2, 2009 8:24 pm
Hi This seems to be much easier than Multiply - we already have 14 members, whereas on Multiply after a number of weeks, we had 30. Am still finding my way...
8
leesgotmf
Feb 2, 2009 10:06 pm
Hi ya Foxy Roxy-lol Long time no hear from you. I'm glad to know you're still around and doing well.. lee ... up...
9
mishaloots2
Feb 3, 2009 12:50 pm
hi all. thanks pat for shifting over to yahoo...I just wasn't "getting it" with multiply. michelle....
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pat.dreyer
Feb 3, 2009 7:32 pm
Hi Have any of you used Aldara on your plaques/patches - and if so, with any success? A friend has been diagnosed with MS and she's been told about ...
11
judy905
Feb 3, 2009 8:25 pm
When I was first diagnosed, I belonged to a lymphoma support listserv and really felt out of place. That is why the CTCL-MF listserv came to be. After hearing...
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brendabillam
Feb 4, 2009 12:43 am
Sorry to be the party pooper but whilst this site is possibly easier to negotiate I feel this site is a bit too open to anyone to join. You just click join...
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pat.dreyer
Feb 4, 2009 6:44 am
You're not being a party pooper - I'm in the midst of finding out how to screen prospective members. While doing "research"; about sites, I joined the LyP...
14
starshine2727
Feb 4, 2009 12:17 pm
Hi everyone! This seemed a lot easier and it is great to see some familiar names. To Jim and some of the others it is not that difficult to negotiate Yahoo!...
15
pat.dreyer
Feb 4, 2009 8:09 pm
I've added a photo and given a brief synopsis of my MF history - how about you all doing the same? It is nice to put names to faces - the few who had done this...
16
judy905
Feb 6, 2009 3:55 pm
One of our members sent me this interesting article about the effects of using green tea with Velcade. Velcade is being used in some combination studies for...
17
pat.dreyer
Feb 9, 2009 10:03 am
Hi Just to reassure you that I figured out how to screen people, so anyone joining now has to apply and be approved. How are you doing with your treatments?...
18
jacquelinebo@...
jacquelinebo...
Feb 9, 2009 10:52 am
... anyone ... Hi Pat, I had a profile on the MSN site, jacquelinegab1. But: I was diagnosed in 2006, age 48, stage 2B, after years of itching and plaques in...
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brendabillam
Feb 9, 2009 11:09 am
Hi Pat and all, I have added to my profile as suggested but the first time I tried it didn't save what I had entered because I had gone over the limit of ...
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brendabillam
Feb 9, 2009 11:58 am
Hi Pat me again, I decided to go onto multiply and cancel my membership as obviously all on yahoo can see me but as I am only on there for the forum I didn't...
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pat.dreyer
Feb 9, 2009 3:06 pm
Hi I've been looking at both sites - when I click on your or my name, photos and your intro do come up. Bit concerned - went into Multiply and this laughter...
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pat.dreyer
Feb 9, 2009 3:15 pm
Hi again... Further to this: I used my husband's laptop (he has a different email address so the site wouldn't recognise me) and called up our site. It says...
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arenalesmf
Feb 9, 2009 7:29 pm
I am too in this group from the MSN. I can not collaborate very much because I am Spanish and my fluency in English is... well, you can see. However, I read...
24
george
georgeyboy_111
Feb 9, 2009 9:41 pm
I am a little confused with the iching areas i have are not generalized but are circular in nature and white...my initial diagnosis was a red patch that was...
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pat.dreyer
Feb 10, 2009 6:33 am
Hi George Itching seems to be a problem which presents in different shapes or forms. I can itch from what looks like flea bites, clear skin or dry patches....
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brendabillam
Feb 10, 2009 12:36 pm
Hi Pat, I had realised only members could see 'our stuff' on this site but on multiply it is not the case any one can go on and look at the photo's as well as...
27
Jim Taylor
willjay17...
Feb 10, 2009 3:09 pm
I restarted PUVA twice a week, and skin stoppeed flaking off, but am now getting a lot of Plaques and other spots. Still hoping to be referred to St Thpmas's...
28
Lovita Crasto
lovita_crasto
Feb 11, 2009 2:08 pm
Hi All, Â Sometime ago Pat had forwarded a message from Megan who had then recently joined MSN/Multiply. Megan wanted to know if there were any young patients...
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brendabillam
Feb 11, 2009 2:44 pm
Hi George, As you have already had a biopsy which proved positive for MF then you do not need to have anymore patches that show up biopsied unless your...
30
brendabillam
Feb 11, 2009 2:58 pm
Hi Jim, Good to hear from you on this new site. Sorry to hear that your skin is under fire again and that it is making you so miserable, though I do know...
