Hi Renata

thank you for your welcoming reply.

I am a dinosaur and not very good on the computer. so have 2 seperate days 3rd march and 11the march trying to get on the cancer chat forum. I did manage to read all the Mycosis Fungoids messages and wanted to reply. Is it possible for the one I have typed above to be put on the discussion list as I have been talking to one of your colleagues on the phone and he was very patient trying to put me through - with no luck!   I have to go now but would appreciate if you could move the above and perhaps give me advice when I come back on the computer where to find the chat line again.... I cant remember!!!   Thank you   Marionos

Hi there Marionos

I'm not exactly sure what discussion list you mean but maybe I can give you some guidance to make it easier to find things. 

First of all if you click on your name you get taken to your profile. From there, you can see any posts you have made and any replies you have received.

If whilst browsing the forum you find other discussions you are interested in, simply click the ‘follow discussion’ link which is at the top of every thread. This will save the discussions for you and you can also see these listed on your profile. This makes it easier to find those conversations without having to search for them every time you sign in. You will also get an email notification if anyone posts on any thread you are following.

I’m not sure who you were speaking to on the phone or who they were trying to put you through to. I am guessing maybe they were trying to connect you to our nurse helpline. If you would like to talk things through with one of our nurses they are available 9am-5pm Monday to Friday on this number 0808 800 4040.

I hope this has helped and you are able to find the discussions you are referring to. If you need anything further you should be able to find most questions answered over in our Help topic area or you can contact us directly by going to our contact a moderator page

Kind regards

Moderator Sarah

Thank you Sarah

Very helpful

Kind wishes

Marion

Hi,

I'm not sure if I'm posting in the correct place, but it seems to be about Mycosis Fungoides.

I'm 22 and I have had a rash for over a year now that has been on and off extremely itchy on my lower abdomen on both sides, it has gone from red to brown and and comes and goes alongside itchiness that has been particularly bad at night. It hasn't responded to steroid and other fungal treatments and has very slowly grown over the year and mycosis is the only thing I have found that matches the description in looks and itchiness. I have been to 6 different doctors and all have given a different conclusion. Over the past 3 months a few glands on the left side of my neck have grown larger than the right side also. I am getting a full blood count on Monday and scared sick for the result.

I don't suppose anyone has any advice or similar experiences? I'm terrified. X