Well that's good as nodular pirigo is very unpleasant and nothing worked to cure the friend of my mother's.she died about 2 years ago but not from the nodular pirigo.however I would mention it along with mycosis fugoides.to be honest the mycosis fungoides would be much more dangerous,if it is that,as you report possible tumours which in my reading put you in the 2b stage although I've had 4 tumours and they speculate I'm 2a so I can't quite figure it out but obviously 2a is better than 2b!

Hi! Sorry i've been so busy lately, but I did call the doctors and I have a scheduled telephone consultation with my doctor next week which I'm going to mention mycosis fungoides, specifically the folliculotropic one, but will update when I find out more!

Hi canopus7

can I ask where you getting these information from (regarding the life expectancy)?

cause what I have read from sites such as CL foundation and Lymphoma Action, stage 1A, 1B and stage 2A are early stage! At early stage life goes on as normal with regular treatment. Also even at stage 2B (tumour stage) there are multiple treatments these days which can treat tumours or even advance stages.

i suggest you look up CL foundation and Lymphoma Action websites, which are legit and reliable sources/ informations

Kind Regards

Jay

From a Finnish study.

When was this study first published? Cause one of the studies I looked at just now was published in 2005 and the other study that was done, they were looking at patients with CTCL along with other illness which is called comorbidity. now this can progress mycosis fungoides. Even then, those patients in those studies were at certain age and some had good prognosis and some had poor! 
 

jay

I can't find the Finnish study as I've read so much about it since being so diagnosed 2 months ago but the following give life expectancy against a control group;medscape.com 2018 article,'what is the mortality and prognosis of ctcl?'and cancernetworks.com 2010(obviously new developments in the 10 years that have passed (hopefully!)?)'diagnosis and management of mycosis fungoides'.much of the information on mycosis fungoides is based on the 1a stage as 88 percent of people don't progress beyond it and perhaps the authors don't want to worry people with 1a about something which probably won't happen unless they are unlucky as happened to me and they move up stages?

Have you read the whole article on Medscape? Cause it wants you to sign up if you want to read the rest? 
 

jay

No just the initial part are you on the right site?I don't recall it having further internal information.

That's the problem with these sites you won't get the full context of those studies! what was the studies about and why they were doing it! I did the same thing as you did when I was first diagnosed! I started going on these sites and wasn't getting clear cut answers to my questions until I came on here.

my advice (which was given to me by Mori and Andy) would be to go to CL foundation and Lymphoma Action sites. These sites are more informative and accurate. will also tell you about all the treatments that can be done and also other new treatments that are in process. You'll get all the information! 
 

jay