CTCL Sezary syndrome

Dear Imsk. I am sorry to hear of your mothers diagnosis but this is indicative of the rarity of the condition. When I first encountered a problem in 1995, of a small dry skin patch, and a biopsy was taken, I was not told anything about it being MF only that it was "T-Cells", it was not until a flare up of the condition in 2011/12 when I exhibited exactly the same problems your mother describes, that I was prescribed Phototherapy treatment, for approximately two months, which did not help to reduce the problem, with further investigation and referral to Haematology it was decided to refer me for treatment with a process called Photopheresis (Extracorporeal Photochemotherapy (ECP), if you have access to the internet I would suggest you could google "Treating your skin condition with Photopheresis" via the website for Guy's Hospital in London 'www.guysandstthomas.nhs.uk'. This treatment was controlling the condition for quite a while but on another check up with Haematology later in 2012 it was found that cancer had progressed into my blood as Sezary Syndrome stage lll, for this to be controlled it was decided to prescribe the use of a drug called 'Interferon Alpha-2a' which I have to inject myself with three times a week again you could google this as above and look for "Interferon treatment for your cutaneous T-cell lymphoma (CTCL). These treatments may not be for your mother, as the Consultants she is under, have to take into consideration many different strains and levels of the disease and what is the best combination of medication is suitable for her. I hope this is of some help and consolation to you both as it will always be work in progress for life. Never be afraid to ask questions of the doctors and always give them as much information and feedback as you can it does help.

Always optomistic, Andrew

Dear Andrew,

Many thanks for your very personal and very detailed information. I feel some kind of relief knowing that there are indeed other people who suffer the same disease and know how horrible the itching can be. I will certainly follow the suggestions mentioned in your post and talk to the consultants about these. Many things are not clear (to me anyway) and I would like to have a consult in short notice with the consultants to find out more.The only thing my mother knows for sure is that the skin condition is caused by a very rare type of cancer, that it is not curable and that they are trying to find a way to ease the pain/itching to create better and acceptable living conditions.I learned that (as you also write in your post) a cure for one person is not necessarily a cure for another person. There is no standard treatment for Sezary and that makes is even more a terrible fight for those who suffer from this disease. 

Again thank you very much for you reply and hope your Interferon injections will reduce your symptons.

Inge

Dear Imsk

My sister Helen suffered from Sezary syndrome.   She lived in the USA and I live in the UK.  Both Helen and I received a lot of support and advice from the US based CTCL Foundation.   I think they may be able to advise you about any information and help in the Netherlands.  Their website is http://www.clfoundation.org/.  With very best wishes to you.  I know so well how hard it is caring from someone with this awful condition.   anna

Dear Anna,

Thank you very much for your reaction. I am so very sorry to learn that your sister passed away. I only found out this weekend about the foundation mentioned in your reply by coincidence, I haven't been able to study all the information gathered at their site (not in the least because I have to translate it). My mother had her first radiation therapy last Thursday and we also went to a specialised hairdresser to fit and order a wig since the doctors told her that she will loose all her hair within 2 or 3 weeks. That was very very difficult for my mother. It was so very heartbreaking to watch it. At this moment we can only hope that the radiation therapy will do something good also, in that way the loss of her hair isn't for nothing.

Thanking you all for your support!

Inge

My mum has this and was treated by photophoresis which resulted in her getting sepsis. This has left her drained but is now on methotrexate which is leaving her tired

Hi again, so sorry to hear your mum is still struggling, this journey can be a mission and a half.

Tiredness is indeed an issue with Methotrexate, it is hard but she does need to keep some activity going as this will help overcome the build up of fatigue but yes when she needs to sleep let her. 

It would also be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

((hugs)) all round.

AndrewG My name is LeeWell I am new to the forum.  I notice your listing was place over 5 years ago and wanted to know how you are doing these days? I had MF that has now gotten into my blood stream as SS.  Its been almost two years since I was diagnosed with SS, but I had MF for over 10 years misdiagnosed as eczema. I am about to to try Photopheresis combined with Bexarotene (Bex). in advise or help that you can give will be appreciated.

Thanks

Hi  and welcome to our corner of the Community. As you noticed this post started over 5 years back but let’s see if any of the folks are still looking in.

My story is rather long being diagnosed with MF (CTCL) back in 1999, you can hit my community name to see the long version.

We never did try Photopheresis but was on our ‘todo’ list but was on Bexarotene for a good two years before everything became aggressive and it was doing a good job.

The Bex did a great job and we ran PUVA at the same time as my skin was bad....  but my Cholesterol went up to 12.2 and my Thyroid was closing down (a side effect of Bex) so the Bex was reduced and various other drugs were used to get these new issues under control but this allowed my main CTCL to get out of control.

What I can say is that in 1999 I was told Incurable but treatable and would never see any remission...... fast forward to Sep 2016 I was told I was in remission and living the dream.

Happy to talk more at any time.

Thanks Highlander for the words of inspiration and hope. Are you still in remission?

Hi mikey66 I have sezary and have been trying to let my body heal itself with a good diet, good spiritual life, and Photopheresis. getting ready to start Targretin  I will start on a low dose and increase it if necessary and continue the Photopheresis two consecutive days once a mont. Feel free to reach out anytime