Hi All, 

I was diagnosed with a hypopigmented variant of MF in 2011 when I was 25. The hypopigmented part basically means that instead of itchy patches on my skin, the colour of my skin disappears (appears white) in patches (I'm of African/Indian) descent. 
I was told when I was first diagnosed that it's an especially rare form of the disease, more common in younger, dark skinned adults. I was referred to a lymphoma specialist and took part in a research programme. 
Now I'm treated locally which usually just consists of either narrowband UVB or PUVA every couple of years and I'm seen by my consultant every 6 months. 
I don't find that I have any symptoms and it doesn't affect my day to day life, other than when I'm in treatment. Although I do find I'm prone to getting ill (colds, recurring shingles etc) fairly often.

Wondered if it was coincidence or if anyone finds they're prone to catching things? 

That's because it's compromising our immune systems so be careful with coronavirus! mycosis fungoides lymphoma attacks the immune system.i have had a cough for over a year.

Hi Mori/Andy

hope you both are well!

In light of this coronavirus, are we (MF patients) at high risk if we contract coronavirus? Is our immune system not as strong?

Kind Regards 

jay

Hello Jay and others

Yes, technically cutaneous lymphoma patients do have a compromised immune system.

I'm not a doctor, but it seems to me that our skin-resident T-cells can sometimes go into overdrive, and produce patches, plaques and tumours.

As to whether that extends to falling ill more often, I just don't know.

Cutaneous lymphoma is not a cancer of a single gene, and everybody's case is different, because multiple gene mutations are at work.

It's obviously worth mentioning to health professionals that you have a weird lymphoma.  A few of them have heard of cutaneous lymphoma.  

Regards - Mori

Coronavirus seems pretty unpleasant even without other problems and the death rate in Italy is terrible over 2000 as I type this and in less than a month.although strangely South Korea has a similar rate of infection but a lot fewer deaths so perhaps the people there have a greater resistance as it seems to have originally come from close(ish/wouldn't like to walk!)by in Wuhan, China.my understanding is those with cancer are in a greater risk group but those undergoing chemotherapy are at most risk.im very worried as when the mycosis fungoides moved to stage 2b it also caused a cough which I've had for over a year now suggesting it's done something inside my lungs or throat?

Hello Canopus

If I had a cough that was a year old, I would get it checked by a doctor.

I've not read of any throat or lung manifestations of CTCL.  I did however read an article about gastrointestinal involvement (rare).

Regards - Mori

Hi Jay Mori Canopus and others,

I was told by a dermatologist that the defective T cells we have affect our skins ability to fight infection, so get a cut on the skin or graze and we might be susceptible to infection.  I got Cellulitis in this way a few months ago.  She didn't seem to think that our immune systems were generally lowered.

I also had a cough about 3 years ago that had lasted for a year.  GP was no use, MF consultant said , "Nothing to do with MF" so i eventually paid out £150 to see a chest doctor privately.  He was great and quickly diagnosed that I had a gastric reflux problem, especially during the night, so I was largely unaware of it.  Due to old age and weak sphincter muscles, gastric acid juices were coming back up my throat and causing the cough.  Treatment was easy - a drug called Pantoprozole for a few months settled it all down and cough went.  To keep it under control now I have to take Ranitidine every night.  Your description of your cough sounds like what I had - it might be worth asking a doctor about the possibility.

On a positive note I have been having UV treatment recently - had my 12th session yesterday and my skin is looking and feeling pretty good at the moment.  Trouble is it wont last but a bit of respite feels great.  This is the 4th series of UV sessions I have had over the last 6 years.

As an old guy 70+ I am now hunkering down to a period of  quarantine to try to avoid this 21st century plague.  I read a book some years ago called the sixth extinction.  It predicts this kind of apocalyptic  disaster.  Very good book well worth a read.

Best wishes to all,

Andy

My consultant on the mycosis fungoides seems to think that the cough is connected to it and is something to do with the immune system but they have never investigated any further.a GP I saw recommend beconase but I don't think it works I still sniff it from time to time.due to coronavirus my appointment in early April has been cancelled and they where probably going to put me on a drug called targretin then.you might care to watch the 1971 film'the Andromeda strain' or read the 1969 book of the same name by Michael Crichton.a satellite brings a strange contagion back to Earth with predictable results!

Targretin is a big success in the US, for both patients and the drug manufacturer.  I've read reports of costs of $26,000 USD for a prescription.  Uninsured folks in the US seem to go without. 

There are very positive reports about Targretin's effectiveness for higher stages of CTCL/MF.

When you're on Targretin, your consultant will need to refer you to another specialist to deal with side effects - lipid abormalities.  Things like triglycerides going through the roof.  So additional meds are needed.  But, Targretin works for most folks. 

And, at this grim time, Memento Mori, Remember Death.

Take care of yourselves and family.

Mori