I don't have anything new to report, but I wanted to say hi to everyone checking out the site.
There have been quite a few hits on this blog this week. While I hope that everyone finds the site at least a little helpful and hopeful, it makes me sad that the likely reason someone visits my site is that they or someone they love is dealing with Cutaneous T-Cell Lymphoma. This can be particularly hard for the loved ones, not knowing what to expect or how to be supportive. For people with CTCL and their loved ones, the most important thing is to be caring for yourself. Stress has a really negative impact on not only our psychological well being, but our physical well being. Care for yourself so that you are able to care for others.
To those who are newly on this journey, remember that it is a long journey, full of options, opportunities, and hope. I would love to hear about your story, either by comment below, email, or on your own blog. When I was first diagnosed, I had a hard time finding information from the patient's perspective, and most blogs hadn't been updated in more than 5 years. It gave me the feeling of being alone in the journey, which is certainly not the case. So I just wanted to say that I am here, if you have any questions, feel free to ask. You aren't alone in your journey.
Greetings!
ReplyDeleteMy husband was diagnosed with MF in July 2014. It seems to be ver aggressive in his case as it appeared in February and large spots were all over his body by July. Uvb treatment 3x a week since July is really helping and spots are becoming normal skin like....except the 4 worst patches on his back.
Any advice you can give dietary or non Traditional? Would be absolutely helpful.
Thank you for creating this blog!
It helps to be as healthy as possible with diet and exercise, but I haven't heard about or experienced any huge improvement from specific diets.
DeleteThe biggest factor I've noticed has been stress. If you can manage your stress level, then the spots aren't as bad. When I'm super stressed, spots pop up within a day or two.
I had great success with UVB but it does take time. My worst spot looked like it wasn't improving for the first 6-9 months, so progress can't always be seen quickly. It took a year before that spot was really gone. It can be hard to be patient, but stick with it.
Let me know if you have any other questions. I wish you the best with your journey.
Hi there,
ReplyDeleteSadly, I just got diagnosed at 22 years old :( I am glad that the prognosis is pretty good though. I was wondering if you had some remedies to deal with the itching? Also if you feel I should start UVB treatments or something?
Thanks!
I wish I had been diagnosed at 22. I've been dealing with it since 12, so trust me, knowing what it is makes everything a whole lot easier to deal with.
DeleteI've tried tons of creams and lotions but nothing really worked well for me and some were painful or made the itching worse. The only thing that worked for me so far are the UVB treatments, so if your doctor says that would be a good treatment for you, I would strongly suggest doing it. Compared to other more aggressive treatments, UVB is really easy to deal with and is no worse than a sunburn at times. Life still goes on as normal even though you're doing treatments. But definitely talk to the doctor. Different people have different things work for them and there are a lot of other treatment possibilities out there. Good luck with everything and let me know if you have any other questions.
I was diagnosed with mycosis fungoides over 30 years ago as a young teenager. Went through several therapies at the university of Pennsylvania. UVB light treatment and a mustergen gel(both oil and then water based). My spots were mostly on my butt and knees.I am 46 now and haven't haven't done any treatments in approx 15 years. My condition has not changed in the 30 years. I was told my my dermatologist that in my case it won't be terminal, I will die from something else. Sorry to be blunt but this was my main concern. Every case is different I know but I just wanted to share my story. My problem is finding life insurance to protect my family should I pass from other ailments before I retire. Any suggestions?
ReplyDeleteHi Gary,
DeleteThank you for sharing your story, it's great to hear from people with a positive outcome.
I'm sorry I don't have any information about insurance. As far as I know it varies based on what area or state you are in. If you are worried about minor children, there are programs in place such as medicaid which can help. That's about the extent of my knowledge.
Thank you again for sharing!
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ReplyDelete