Hi all Back from my travels after a particularly long and tiring trip from Sydney - with the time difference, was travelling for 36 hours! Just wanted to send...
155
Lovita Crasto
lovita_crasto
Jun 2, 2009 1:10 pm
Hello Lynn, I am of Indian origin, While I was on PUVA the psoralen made be queasy too but not very often. Whenever it did my mother would squeeze half a...
156
george janiszewski
georgeyboy_111
Jun 3, 2009 3:42 am
well thks people because i too am getting ready for some new puva treatmrent ...pisses me off because in hamilton ontarion canada at this hospital i had the...
157
Judy Jones
judy905
Jun 3, 2009 3:21 pm
George, Sorry you are going to have to travel so far for treatment. Unfortunately, there are fewer options in Canada for treatment locations. On the positive...
158
Judy Jones
judy905
Jun 3, 2009 3:24 pm
Jessica, There used to be a group that met every 2-3 months, but it fell apart. There are several patients in the area, since there are two CTCL clinics in ...
159
judy905
Jun 4, 2009 1:44 pm
I am thrilled to announce that registration is open for the upcoming Cutaneous Lymphoma Summit in New York, NY, October 9-11. This groundbreaking event will...
160
Jessica Torres
j.torres59
Jun 4, 2009 8:29 pm
Judy, Â Thank you for your quick response. I'm currently enrolled in a clinical trial at UT Southwestern Medical Center in Dallas, Dr. Amid Pandya. I have yet...
161
alliance15
Jun 9, 2009 5:11 pm
Well here is what I do and it has worked fine for about 10 years....If I want the effect of a "puva like" light session...I will eat a couple of sticks of...
162
george janiszewski
georgeyboy_111
Jun 9, 2009 11:48 pm
thanks you know i just might do that....better than waiting for a month till they find out the the hec is going on.. regards george ... From: alliance15...
163
willjay17@...
willjay17...
Jun 18, 2009 3:42 am
After daily treatment for a month, my legs are much better,but have three small ulcers, which a District nurse comes in to treat. Carers come in 3 times a day...
164
willjay17@...
willjay17...
Jun 20, 2009 1:14 pm
Still in PJs and still very sticky, getting used to a never ending creaming. My feet are still being dressed as the ulcers are quite painful. One of the...
165
pat.dreyer
Jun 20, 2009 5:58 pm
Hi all Firstly it was good to hear from Jim - although your treatments may be yukky, they seem to be causing an improvement - so enjoy being fussed over. ...
166
pat.dreyer
Jun 20, 2009 5:58 pm
Hi all Firstly it was good to hear from Jim - although your treatments may be yukky, they seem to be causing an improvement - so enjoy being fussed over. ...
167
willjay17@...
willjay17...
Jun 23, 2009 7:42 pm
Dear all, this is rather a longer one than last time. My time on the twelfth floor at St. Thomas's was a wonderful experience, with lots of good food and being...
168
Judy Jones
judy905
Jun 29, 2009 9:57 pm
What: Free Teleconference: Current Developments in the World of Cutaneous Lymphoma When: Wednesday, July 22nd. 1:30 to 2:30 pm EST (open to all countries) ...
169
brendabillam
Jul 3, 2009 3:31 pm
hi All, Having a bit of a bad time at the moment as my skin is weeping and bleeding pretty much all over and is so sore and painful I can hardly move...
170
pat.dreyer
Jul 4, 2009 1:55 pm
Hi Brenda I'm so sorry to hear that you're really going through such a bad time. For all the fluid retention - have the docs not suggested that you take a...
171
Mary Katherine
starshine2727
Jul 7, 2009 5:01 am
Hi Pat, Sorry to hear that you are having more difficulties. I read your previous email about the allergic reaction to Penicillin. I have developed an...
172
alliance15
Jul 7, 2009 10:41 pm
Pat, Sorry to hear about the angina...and yes I may have a little of this going on too and I also am allergic to that penicillin. I had a shot of it when I was...
173
willjay17@...
willjay17...
Jul 10, 2009 6:40 pm
Dear all, Have been home several weeks now from St.Thomas' hospital, my legs are still bad and being dressed by a lovely Nurse, Ruth, every day. Small ulcer on...
174
babytigerbos
Jul 13, 2009 11:33 pm
Has anyone had any white bumps that look sort of like warts or white bumps on their body that become sort of inflamed and irritated after awhile? I've had...
175
george janiszewski
georgeyboy_111
Jul 14, 2009 2:57 am
well i had a spot for yrs on my chest and was red and icchy and was eventually diagnosed as m f but the strange thing was that when i used the steroid cream it...
176
babytigerbos
Jul 14, 2009 3:36 am
These spots have been white and on my fingers. They are totally different than the red flat areas that seem 'normal' to Mf. I wondered if anyone else had...
177
pat.dreyer
Jul 14, 2009 8:22 am
Hi All Delighted to report that the angiogram showed no blockages. Am glad to have had the procedure as it gives such peace of mind. There is a history of...
178
pat.dreyer
Jul 14, 2009 8:24 am
Hi Jim I have a suspicion that you're enjoying all the attention and the carers!! Hope the treatments are starting to show benefits. Keep us posted....
179
pat.dreyer
Jul 14, 2009 8:38 am
Firstly, welcome back to the group Adriane! The skin is such a complex organ and there are so many things that can appear! You mention the biopsy - was this...
180
Judy Jones
judy905
Jul 14, 2009 3:05 pm
What: Free Teleconference: Current Developments in the World of Cutaneous Lymphoma When: Wednesday, July 22nd. 1:30 to 2:30 pm EST (open to all countries) ...
181
babytigerbos
Jul 15, 2009 1:38 am
Thanks for the welcome back Pat. No, this is the second biopsy I've had. All of these spots have been on my fingers. I've had a total of three. The first...
182
alliance15
Jul 18, 2009 8:41 pm
pat, Glad things went well for the heart... Baking soda...hmmm I have been using this in each pot of coffee now off and on for about 6 + months....and no...
183
willjay17@...
willjay17...
Jul 19, 2009 3:15 pm
Sorry, but not enjoying Carers very much.Am cutting down to 3 a day. They are very liberal with 50/50 and have to change pyjamas twice a day. Washing machine...
