I've just set up my first appointment with my new doctor in Denver. I'll be seeing her on December 1st which is good because today was a. really. bad. day.
Not just my regular spots, but two other areas are being extremely sensitive. Painfully sensitive. The weather has turned colder and drier and I know I need to use lotion more, but just the thought of putting on lotion right now is enough to bring me to tears. The sensitive areas are not red or noticeable in any way but they hurt really bad. My regular spots are darker than normal too.
I really hope I can get back into nbUVB treatments soon. I had forgotten exactly how bad my spots could be here in Colorado. When I lived here 12 years ago, that's when my spots were their absolute worst and pretty much stage 2 plaques. I also really hope that the increased issues with CTCL won't become the cost of being able to live in Colorado.
I was diagnosed with mf this week. Looking back at pictures I have been suffering with this disease for over 10 years without a diagnosis. I would use moisturizers and topical steroids and the plaques would improve so I assumed it was eczema that I suffered from since I was a child. I am 38 years with 3 children and this has caused immeasurable stress. I am hoping as this improves with time although I have yet to see the experts at memorial Sloan Kettering where they will stage the disease. How have you been able to cope with the stress of this? I just started with topical steroids and laser therapies this week. I was wondering if you could tell me how long your plaques/patches took to clear on these therapies?
ReplyDeleteit is hard to find testimonials given the rarity of the disease. I hope your disease is improving.
I have often said that getting a (correct) diagnosis was the best thing ever. I too had been told it was eczema and I do also have eczema but the creams never worked for me and some were extremely painful. What really worked for me was narrow band UVB light treatments. It took about a year and a half for me to get completely clear on the nbUVB treatments, but I did see slow progress throughout that time. Lighter/smaller spots went away first. It was only the major spot that I'd had for 20 years that was stubborn and took longer. I highly recommend nbUVB, although it does take a long time, it doesn't have bad side effects and it is pretty much only an inconvenience.
DeleteAs for the stress, I'm feeling more of it recently. Usually it is enough for me to think about how I've had it for 20 years and overall, I'm still fine. I can fully expect to live a long life that will just have this annoyance that I have to deal with periodically throughout. While each person is different, it sounds like you are probably in the same boat. You've had it for 10 years, and you're still here, doing well. I would suggest going to any events put on by the Cutaneous Lymphoma Foundation. Sessions can be found at http://www.clfoundation.org/programs-resources/educational-opportunities/patients-and-caregivers. Looking now they have a patient get together in New York City in February. You mentioned Sloane Kettering so I'm assuming you're in the NYC area. The ask-a-doctor and information sessions are great, not only because of getting to talk to the expert doctors, but more because of getting to talk to other patients. I met a woman at one who had had tumors covering her face. She had an insane amount of treatments and was doing better at the point I met her, but it made me realize how really good I have it. Also in terms of stress, my body really reacts to stress, I can tell how stressed I am in general by how bad the spots are. Whenever I feel major stress or frustration, I ask myself if stressing over something is worth gaining a few more spots and I usually realize that what I'm stressing about is not worth it in the big picture of everything going on.
Feel free to contact me any time. I remember how frustrating it was not to find patient stories online when I was first diagnosed. I'm an open book when it comes to any aspect of CTCL, so let me know if you have any other questions.
Please help me. My son is suffering with this. He was first diagnosed with eczema. But now having a lot of itching . Tried the phototherapy. Dr made him stay fir 8min too long Startex peeling . Haven't stopped peeling it's been 2 months. He was taking acitretin. But now started bexacarotin. Still has itching and peeling.probably not drinking enough water. He has bipolar too. Can you help. Any encourage
DeletePlease help me. My son is suffering with this. He was first diagnosed with eczema. But now having a lot of itching . Tried the phototherapy. Dr made him stay fir 8min too long Startex peeling . Haven't stopped peeling it's been 2 months. He was taking acitretin. But now started bexacarotin. Still has itching and peeling.probably not drinking enough water. He has bipolar too. Can you help. Any encourage
DeleteHi Za Grif,
DeleteI'm so sorry your son has to deal with this. It is weird that he hasn't stopped peeling after 2 months. Is he still doing the phototherapy?
How old is your son? Drinking more water and staying hydrated is helpful.
Being bipolar does complicate things, he likely feels a lot more stress, and stress can really aggravate his skin and itching.
My advice would be to try to find another doctor for a second opinion. I know that it can be hard to find someone who is knowledgeable about these conditions, but it is important to be sure he's getting proper care.
It would also be helpful for him to go to a patient meetup. I know there are locations all around the US, but am not sure about other areas of the world if you are outside the US. Meeting other people with his condition can really help him psychologically. It's always great to know you are not alone.
Let me know if you have any other questions.
Thank you for the time and care you've put into your blog. I haven't seen any updates here lately. Hope things are going well for you now.
ReplyDeleteThings are going well, lack of updating is due to crazy hectic life, but I'll try to post soon about the new treatment.
DeleteThanks for checking in!
Great blog. Please do continue. I feel like such a weirdo most of the time so it's great to read about others experience. I'm at the beginning of the "skin thing" journey. I had mono over two years ago and that's when they started following my chronic lymphocytosis. I got to Moffitt Cancer center every 6 months. Just had 3 biopsies at a local derm for the craziest of rashes mostly in my clothes areas but also on my scalp. Some patchy hair thinning too. It really sucks. Hope u r doing well.
ReplyDeleteI also have the patchy hair thinning too. I've always had really thin hair, but in small areas its almost bald. I never noticed until I shaved my head really short and my family let me know that I had random bald spots. Now I keep it long enough that it's not noticeable.
DeleteI will definitely continue with the blog, but for the most part, I don't have much to report. I've also been insanely busy recently and trying to manage the stress so that my spots don't get out of control.
Good luck with everything. I hope things can improve for you.