Mycosis Fungoides UK

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Nickname	Twinks_Lynn
Name	Lynn
E-mail
Location	Enfield, North London, UK
Birthdate (& Year if you brave enough!)	4th September 1965
Family	Married to John since 1987, two boys aged 17 and 13
Interests	I love F1 and Motorsport, Reading, Music, Going out to Pubs/Clubs/Restaurants
How did you find this group?	Started the group on 30th July 2002
MF History	'Spots' first started to appear in 1989 when I was 24 and pregnant with my eldest son. I went to my local hospital for about 10 years and had numerous biopsies and was given various different creams to try - nothing worked. Asked to be referred somewhere else, my theory being that someone somewhere must know what this was. I was then referred to St John's Institute of Dermatology based at St Thomas's Hospital in Westminster, London. After one biopsy MF was confirmed in December 1999. By this time I had a patch on my left upper thigh, two on my right upper thigh, two on my lower abdomen and horror of all horrors, spots also appeared on my buttocks and breasts . I started PUVA in January 2000 and had two sessions a week until October 2000. The patches almost completely disappeared and to the untrained eye there was nothing there. But I can still see them!! Although I am relatively clear spots still flare up every now and then - mainly in the area on my left upper thigh where it all started.
Updated	5/3/2007

Nickname	leesgotmf
Name	laura lee
E-mail
Location	California, U.S.A.
Birthdate (& Year if you brave enough!)	Jan 27 1946
Family	Husband of 41 years,married daugher36, a son 35 , a sister.We also have two grandsons.
Interests	I love to read, do crafts, go to the movies, garden and go to Las Vegas, NV.
How did you find this group?	iI was on msn, and just entered "mycosis fungoides groups"
MF History	The first time I remember seeing a spot was about 12 years ago At first I thought it was 9 years ago but we since have been able to put a place with a memory of the first time my forearm was red.Since it didn't bother me, and it went away quickly, I forgot about it. The spot and then more kept coming and going and I could never get into the doctor at the right time to be diagnosed. The first time a doctor actually saw it , she said "it must be an allergy". The second doctor said "it must be red spots from leaning your arms on a chair". Finally, about 9 months ago, my body went crazy with spots popping up every where and in areas that were new.I made an appointment to see a dermatologist and had to wait 6 weeks to get in. While waiting ,I started getting the intense itch , which I had never had before, and also peeling spots which were very attractive.. My face and neck became covered with them and I was frantic. I knew something was happening, the condition whatever it was was becoming much worse. The doctor took one look at me and knew what it was because he had interned at a large well known cancer hospital in Houston, Tx. and saw many cases of M.F. After blood work, and biopsies to confirm the diagnosis , I used cortisone cream for a while, but that wasn't working .I started on puva and have been doing that twice a week for about 6 months now. I've had practically no itching since starting puva , no new spots,plus the old ones are gone. I can still see them when I am in the shower and warm, but nobody else can .I'm looking forward to being through with puva so I can start feeling more normal. Starting this March , my treatments are down to once a week-Hoorah!!!!! Yeah, its June now and I''m down to once everyother week. Hopefully no new spots will come out with this new schedule. On Jan 21st, 2004 I finally was able to quit puva for now. I'm hoping for a long remission. Will update if I become "spotted" again. It's March 20th and I .Just had my 2 month check up and since I'm still clear, I don';t have to go back for 6 whole months... Well, i got a few spots eventually and am using targretin gel now and the date isNovember -2004 . Here I am, July 2006.I've been using topicals on the occasional spot I've gotten, but have been mostly clear even though going through some stressful past few years. So much for the "stress can bring out more spots theory". Hopefully things will continue on this way for a long long time. The date is July 16th, 2007. Next month I'll be celebrating my 5 year anniversary of joining this group.. What an amazing 5 years it has been. I've gone from thinking I would die, to knowing I'll be fine, but always keeping an eye on my skin so that things don't progress.
Updated	7/17/2007

Nickname	Roxy
Name	Roxanna
E-mail	Readnlady@aol.com
Location	Myrtle Beach, SC
Birthdate (& Year if you brave enough!)	Sept 2, 1952 Yup I'm 50
Family	Hubby, and 3 girls 29,27,21
Interests	Reading,Cross stitch, swimming, walking on beach
How did you find this group?
MF History	Started out with one spot in 1988, went to 2, 3, and so forth. Went to derm, gave me stuff to put on, bathe in, nothing helped. Went on until Jan 1999, derm took biopsy and they called 24 hrs later, told me it was cancer. Did 2 years of PUVA, now doing UVB maintenance once every other week. Doctor said I can stop after being clear one year.
Updated	2/18/2003

Nickname	Pat
Name	Pat
E-mail	pdreyer@icon.co.za
Location	Cape Town, South Africa
Birthdate (& Year if you brave enough!)	26 July 1943
Family	Married with son (28) and daughter (27)
Interests	Golf, field hockey, golf, equestrian admin, run website for hockey, run a small livery of 3 horses (looking after other peoples' horses in our stables on the property), my animals
How did you find this group?	Link from MF Foundation
MF History	I first noticed a dry, red area on my forearm in 1995, but have had red patches for years, which a couple of dermatologists blandly stated were"dryskin" or "vascular problem." One did two biopsies on my back (without telling me the real reason - both were negative - and told me that I was reacting to a drug). I thought no more about it. I switched to another in late 2003 because I had to wait too long to gain an appointment with the current one and this one became suspicious when my skin did not respond to treatment, so took 3 biopsies in Jan 03 from various areas and all showed MF. I was devastated to hear I had cancer... Arms, legs, upper back, face - red blotches and patches (only one on typical area - buttock). I have Rheumatoid Arthritis (not too severe) and was on Methotrexate which was stopped so that I could begin taking Psolaren for PUVA treatments. Saw a haematologist as well, who agreed that PUVA was the route to follow. I was told that I'd have 3 months of PUVA. HAH! Began bath PUVA in March 03 (X 3 per week), changed in May to "normal" PUVA - taking psolaren capsules and then in October, after unpleasant reactions to the buildup of psolaren, back to bath PUVA. It took some 80 sessions before any significant clearing was seen. Because my skin is sun damaged from years of exposure in our hot climate, the PUVA caused more and after 105 treatments, it was stopped in Feb 04. Although there was still evidence of MF, it was felt that the skin damage indicated that it needed a rest. I took Neotigason (a retinoid drug) for a couple of months, but also developed a sensitivity to this. Topical cortisone had been applied throughout this period and became the main type of treatment. During this time, numerous blood tests and biopsies were taken, so as to monitor the disease. During this period I appeared twice before a panel of dermatologists, who find my MF atypical in that my skin seems to have more of a rash than clearly defined patches and the reddened hair follicles on my legs and arms make me resemble a plucked chicken! During the intervening period, the red areas on my face spread and almost cyclically thickened and then scaled, which is very unattractive. Biopsies in early May 05 revealed that Follicular Mucinosis is added to my list of woes... I was put onto an aggressive course of Methotrexate (50mg once a week). This was supposed to be for six months, but after five, my liver was painful and I was seen by another "problem clinic" panel of dermatologists, who agreed that the MF was spreading and that I should try going onto Tetracyline as they also suspected that I'd developed cortison-induced rosacea. My face (see photos page) was worsening and my eyes were now also affected, so my derm sent me off to see a radiation oncologist (had seen him early 2005) and he agreed that it was time to take stronger action! So on July 12 06 I start a six week course of total body radiation - once a week. The oncologist uses a decades-old X-ray machine for this and so it should not be as harsh as TSEBT (Total Skin Electron Beam Therapy). Time will tell! In the meantime, I'm living a normal life, as active as ever, although I do try to cower under my umbrella when out in the sun playing golf... My eyes bother me the most - periods of puffiness and what seems to be a film over them, causing constant blinking - and they burn... Will update this profile after the course of radiation - so watch this space!
Updated	7/9/2006

Nickname	caza
Name	Carol Pringle
E-mail	pringlea@lisp.com.au
Location	Sydney Australia
Birthdate (& Year if you brave enough!)	24/03/46
Family	married, hubby Arnie 1 daughter 35, 1 son 33. 4 grandsons & 1 grandaughter
Interests	apart from grandchildren, reading, tennis, fishing,theatre
How did you find this group?	doing more research on mf.
MF History	l had extremely dry skin also very red and very itchy, after a lot of mis-diagnosis over a 2 year period. l was diagnosed in 96 with mf. After a initial stay in hospital for intensive baths / puva therapy to try and bring my condition under control l have been doing my own puva treatment at home since. with the help of my derm/dr,l have been in remission for 15 months, but am alas once again having to go back on puva treatment
Updated	3/5/2003

Nickname	steve
Name	Stephen Wilding
E-mail	stephen.j.wilding@talktalk.net
Location	Suffolk, UK
Birthdate (& Year if you brave enough!)	5 September 1938
Family	Wife Jenny 60 in March 2003 40 years married, 4 sons & 1 daughter 1964 - 1978, 6 grandsons & 1 grandaughter.
Interests	Enjoy retirement !
How did you find this group?	Search on internet
MF History	Patches for several years treated as eczema then psoriasis without any sign of improvement so GP sent me to hosp dermy consultant who arranged biopsy - result MF. Been on Elocon then Eumovate for few months which has stopped itching and flaking but patches remain. Seeing consultant this week ( 7 March 2003 ) to learn about next stage of treatment - expecting PUVA but don't really know what lies ahead or how to guage progress or otherwise. Strongly suspect cause is exposure to nuclear radiation when Royal Navy at Christmas Island H bomb tests 1957/58 but nobody prepared to admit this possibility so far. A doctor friend who has only met two cases in his career reassured me that I am more likely to die WITH MF than to die FROM MF. Update: 29sessions of UVB Sept - Dec 2005. Feb 2006 Lost action against MoD claiming MF due to exposure to nuclear radiation despite letter from Consultant Dermatologist supporting it. MoD found that because I could not PROVE my MF was caused or contributed to by nuclear radiation at H bomb tests my claim for War Pension was dismissed. Burden of proof wrong way round! Now, April 2007, have Basal Cell Carcinoma on chest to be cut out in August 2007. Family now 8 grandsons and still just 1 granddaughter. Next grandchild due Sept 2007 - what chances a girl?
Updated	4/12/2007

Nickname	Nancy
Name	Nancy
E-mail	najer@nycap.rr.com
Location	Adirondack Mtns. Upstate NY
Birthdate (& Year if you brave enough!)
Family	My Significant Other, Trevor, and I have been together for 15 years. I have a grown Son who lives in Hollywood, FL.
Interests	I love Travelling, Horseback Riding, Downhill Skiing, Sailing and Selling Real Estate which is both my Profession and a source of challenges and satisfaction.
How did you find this group?	It was mentioned in a booklet I got from a Clinic for treating MF at Yale New Haven Hospital.
MF History	I was diagnosed in Jan. 2003 after 2 1/2 years of having a mysterious rash that would come and go. In late September 2002 I developed a pronounced red oval mark on my neck which was about an inch long. It had a very occasional slight itch, but in general didn't hurt and I wouldn't think of it until I looked in the mirror when I was getting dressed. I finally went to a Dermotologist in November when it didn't go away and seemed to be getting larger. He didn't know what it was but did a biopsy which was inconclusive. I saw another Dermotologist in FL when I was down there for the month of Dec. and he suggested a Gene Rearrangement study be done by the Lab who evaluated the biopsy. This was done when I got back in Jan. along with another biopsy for a several areas--the neck and my knee and upper arm where I had the rash. This time we got a definite diagnosis of MF and my Dermotologist referred me to a medical Oncologist and a Radiation Oncologist. They did blood work and a CT Scan and Chest X-Ray which were all basically negative. They made referrals for me to be seen at Yale New Haven Hospital in CT where they have a special Clinic that treats Mycosis Fungoides and also to Beth Israel Hospital in Boston which has Doctors connected to Harvard who also treat this disease. The concensus is that I'm in Stage 1A which is good. I started Spot Radiation treatments a week ago of the Plaque on my neck and they recommended PUVA for the Patches which appear on my upper thighs and buttocks and arms sometimes. However, since I'm going back to FL when my Radiation is finished and since my other rashes are fading and I don't have any new spots, I'm planning to try plain old Sunlight with low SPF sunblock to let the UVA rays through under the direction of the FL Dermotologist and see how it goes before committing to the PUVA. The Spot Radiation was done 5X per week for 3 1/2 weeks and the last week was hard because the sore on my neck began to blister and "ooze" and I felt like I was getting too much and should stop. I'm used to "listening to my body". (You can view my gruesome photos under "Pictures") The Radiologists convinced me to finish the course of treatment on the basis of the importance of having enough radiation to destroy the cancer cells based on previous experience. I went along with it but wasn't happy about it. I left for 3 weeks in FL 2 days after my Radiation ended. The salt water was wonderful for healing the sores on my neck but it still took 2 weeks to heal. My other rashes responded well to the "sun treatment" and I was pretty well cleared up when I came back to Northern NY. However, after I was home 2 weeks, I began to get blotchy spots again--mostly on my thighs and buttocks. I had my 2nd (follow up) appt. with Dr. Peter Heald from Yale New Haven Hospital in CT in mid June '03 and he told me I really needed to start PUVA because I had a very good chance of keeping the MF in check, and the PUVA had an excellent track record with the kind of ongoing flare-ups that I experienced. I called Dr. Richardson's office to schedule my PUVA & they informed me I needed to have new specific blood & urine tests done & a special exam by an (MD) eye doctor with all results forwarded to Dr. R. + the Psoralen prescription ordered before I could start. I did all that and started PUVA at the end of June '03. I started at 1/2 Joule for about 20 seconds. The 1st month I experienced the increase in symptoms, (more rashes), that others have noted. I've gone 3X per week for July & August and early Sept. and then left on vacation for 3 weeks (which Dr. Heald said would be fine). I was up to about 8 Joules for about 7 min. when I left and my skin was almost completely cleared up with only faded marks where the rash had been. Since resuming in early Oct. I have dropped back to 2X per week. I developed a new quarter size rash on my upper thigh just before I returned which is now fading. I use the cortisone ointment on it 2X per day and I went back for my follow up appt. with Dr. Heald 10/21/03 and he was very pleased. He said I should continue 2X per week until I go to FL for 6 wks at the end of Nov. and then get as much sun as possible. Then when I return in Jan. he wants me to get PUVA 1X per week for awhile longer. I'm now up to 9+ Joules for 7-8 min. I had a pretty good base tan from the FL "sun treatment" in May which I think helped me from burning.
Updated	10/28/2003

Nickname	Vickey
Name	Vickey
E-mail	vickeyr@hotmail.co.uk
Location	Yorkshire
Birthdate (& Year if you brave enough!)	11/12/69
Family	8 cats and 1 partner
Interests	Family History Research
How did you find this group?	Via Google
MF History	I was diagnosed in 2003, aged just 33, aparently quite young for this condition. I have had patches all over my body for years, but I was diagnosed as having psoriasis in my early teens, and so did not really think much of it until they began to get more frequent and redder. I started PUVA, but it seems I'm one of the few who are allergic to the drug, so had to stop; I have also had a Cat scan (thankfully clear) and at present I'm just being monitored by dermatologist at 6 monthly intervals. Like most, when I discovered I had this disease, it took me by surprise, and I don't mind admitting I cried buckets, but the support and kind words of this group pulled me through...... Now I live with it, and don't let it get in the way of really living. Love & Best wishes to you all, V.
Updated	6/14/2005

Nickname	Cats2u22
Name	Colleen
E-mail	ColleenKillick@hotmail.com
Location	Croydon, Surrey
Birthdate (& Year if you brave enough!)	24 Sept 1964
Family	3 daughters Martina 21, Rebecca 18 and Danielle 16
Interests	horses, reading, gardening, music
How did you find this group?	searching
MF History	I'm just the mum. Rebecca has had a patch on her thigh for 2 years. It was treated for a year as a fungal infection with steroid cream but it didn't work. The patch grew so she had a biopsy. The diagnosis in April 03 was Poikiloderma Atrophicans Vasculare. Much searching on the net told me this was a form of MF, so when we saw the consultant, I told her all that I had found out about the condition. She said that not too much was known and that we would try differant treatments. Bec has just had her first blood tests and she is due another biopsy in June. St. Thomas's has also been mentioned . Bec has a patch and three smaller spots on her left thigh. Thank you all for being here, it's taken me ages to find you...and people in England too!
Updated	5/8/2003

Nickname	Nader
Name	Nader
E-mail	Kasem_omer@yahoo.com
Location	libya
Birthdate (& Year if you brave enough!)	6.2.1971
Family	one child
Interests	get friends
How did you find this group?
MF History	i complained from white patches constrained in knee and arms 2 years ago. 6 months ago the patches spread on my arms ,legs, and buttack. i did two biopsies and the result was MF, i did the first puva ttt yesterday and applying steriod cream.
Updated	5/11/2003