Hi Lauraborg,

Sorry to hear about your fathers diagnosis.

I think based on the 4 weeks or so I have had my diagnosis the most important thing is to get in front of the right professionals who specialise in this field.

They can give you the right advice based on experience and research in this field.

Stay strong and all the best,

George

Hi Lauraborg

your dad has an advanced stage of the disease.  It is very serious when you are staged at 3 or 4.

Changing dressings and stopping infection is critical - the skin barrier has been horribly damaged.  

Death from infection can occur.

Your poor dad must be suffering terribly.

I do hope the specialist can organise appropriate multi-disciplinary help to salvage the situation.  Radiotherapy can dramatically reduce the size of tumours, and very quickly.

Mori

Sound advice George.  This damn disease is so rare that it is quite possible that you end up being treated by doctors who have no idea what to do.  

One must seek out the centres of excellence if it's at an advanced stage.

I hope your stage is low George, if it is, you'll probably die WITH the dease, rather than because of it.

Enjoy your rural lifestyle!

Cheers - Mori

hope everyone had a nice Christmas , my dad saw the Specialist on Christmas Eve and he will be starting radiotherapy New Year’s Eve !he wanted to go alone and would not let my husband drive and got the train , he was told he would have it Mon, tues, wed, thurs and home Friday but he was unsure if he is meant to stay as he has to go up into London for it , I wish I went as I would of asked so many questions  how long is each treatment ? Is it normal to have a week long course ?  I’ve tried looking up the answers , I looked through the letter from the hospital and it’s all long words that I’m struggling with  anyone else find it hard to even understand what’s going on let alone cope ! 

Thanks lauraborg for the update.

I had a great Christmas with the family. No snow for Christmas and not so cold which is not a bad thing. Hope yours was nice also.

Im glad your father is now seeing a specialist. It sounds like your father is trying to not let you worry about him by going alone. I know I would also do that for my daughter.

I am not sure about the length of each treatment... it may be different for each individual depending on how progressed the cancer is. There are some posts in this forum where people share their experiences from radiotherapy... might be worth it to re-read some posts.

One thing I have read online a number of times is that patients with CTCL generally respond well to radiotherapy. That may bring you some comfort.

All the best...and stay strong for your dad.

Regards,

George

My 30 year old has this horrible rare cancer mycosis fungoides to she struggles with every day she can't even manage to look after her child because of it the sores the pain and infection s are the worst right now she's on bexarotene 6 tablets a day but it hasn't kicked in so she's so itchy and in pain she's under a professor who has said if this medication doesent work he's putting her forward for trials in march  because she's has radiotherapy puvs and other treatment s that hasn't worked all the medical people keep saying is u don't die fm this cancer nut boy do u suffer every day fm it , as a mum watching my daughter suffer every day is. So hard on me it's drive me to the point of a nervous breakdown I hate this cancer so much

Hi George

the medical literature refers to Mycosis Fungoides (MF) as being excuisitely radiosensitive.

Tumours and plaques almost melt away.  

 Lauraborg -  hopefully your dad's health should improve with radiotherapy.

Let us know how he is going.

regards  - Mori

Hi Islington

Bexarotene is known by the name Targretin in the USA  (I think it is, please correct me if I am wrong readers).

This is a "wonder drug" and has turned the life around of many Americans with Mycosis Fungoides (Cutaneous T-Cell Lymphoma) and in the US it can cost in excess of $30,000 US dollars per packet (60 tablets?).

It's easy for me to say, but please don't despair.  I have heard of amazing results with Bexarotene.

The other really positive thing is that your daughter is being seen at a centre of excellence.  Probably the best place for her in Europe.

The mention of "trials" is concerning to me.  The professor has signalled that if Bexarotene does not work for your poor daughter, the next step will involve clinical trails of new medicines.  These are the "latest and greatest" medicines, but after that, there may be fewer options available.  Let's pray that Bexarotene works  - it probably will.

mind you, it's a powerful drug, and I have heard that other medicines need to then be taken to control very high cholesterol.

Clinical trials can sometimes produce amazing results, and I'm not suggesting that your daughter should not try them.  But it does signal that your daughter might have MF that is very hard to treat.

I'm sorry to hear that your daugher is having such a horrible time Islington.

for the newly diagnosed reader, please be aware that not all patients progress to higher stages.

mori

Thank u so much for your reply 

Hi i was wondering if your son started off with very dry skin. I've had no one to chat to and i have had this MF for three years. 

Two years ago i had a lump removed under my arm as i was suffering from night sweats. I have started to get very dry skin on my hands legs. Hands particularly become so dry that they hurt to bend. 

I went to my gp who just said use over the counter creams but nothing works. 

I no its not much but sometimes this stresses me out.

My MF has not progressed other than sevre dry skin, and nobody at work understands.