I went to see my specialist on Friday and it went well. I've been clear for a couple months now so I'm officially on "maintenance" treatments. It means I get to see the doctor every 6 months instead of every 3 months which is nice. He still wants to do the full body checkup once a year just to make sure I've not developed any skin cancer/moles from the treatment, but this is very unlikely given the low risk from UVB.
He also said that although he wants me to stay on the once a week treatments indefinitely, if I wanted to skip a treatment every once in awhile, he'd be ok with it. This is a huge relief since I have a 10 day trip overseas coming up in March. I knew I'd have to skip a week's treatment but having his approval is nice. It's also good to know that if I'm ever just having a bad day or sick, that I don't need to worry about it.
Another change is that they replaced the lightbulbs in the machine I use for nbUVB which means that the time I spend in the machine is less. Right before they swapped the bulbs out, I was at 2 minutes 30 seconds. Then afterwards, it adjusted to 1 minute 40 seconds. This provides the same dose, it was just a stronger bulb. As time has gone on, I've been increased to 1 minute 50 seconds as the bulbs have worn out. My dosage itself hasn't changed at all since this summer though.
I likely won't have more updates unless anything changes. As always, I welcome any questions so feel free to contact me even if I haven't posted here in awhile.
Hi dear i was just reading the comments in this site and i felt much better after my husband was dignosed last november with ctcl Mycosis Fungoides stage 1A, im so worried about him hes 37 years old but im so worried that i keep reading everryday online.
ReplyDeleteHe started UVB NB therapy and i guess he got some burnes and he started to feel itchy that he cant sleep although before the treatment he never had any. His session is 3 minutes 21 seconds. I just need to understand is it something that much serious to worry about since it has the word (C).
Thanks dear and i hope you always feel better
Hi I have been wondering if a diet change or lifestyle can reduce the MF symptoms
ReplyDeleteHello, you mentioning that you think the disease started manifesting on your skin since when you were 12?, were there like rashes that you had?, my wife has been diagnosed with sezary last year ago and recently my daughter had this plaque that appeared from nowhere, she said it was itchy and I couldn't help to think if she is going to have this at some point of her life.. thanks
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