Seeing a new doctor next week

Last summer, my doctor recommended a different doctor whose office is closer to where I live. It will be much more convenient which means I may actually go more often. We're supposed to set up narrowband UVB treatments again. With the immense amount of stress I was under with selling our house, my 60 hour a week job (that doesn't qualify for overtime), and my 20 hour a week volunteer gig, I was going insane. I've gotten new spots on my legs, arms, and back. None are terribly bad but new spots, especially in so many different areas is still concerning.

I'm hopeful that I'll like the new doctor, but at least if I don't, there are two other doctors in the same practice that my previous doctor said would be good to see. Also hoping that I can get the UVB set up quickly and get back to being clear soon.

Doctor checkup

Back in May I went to see Dr. Pacheco at UC Denver Anschutz. It was a much better appointment this time around but that may have been because I didn't have to get blood drawn. In general I don't mind getting blood drawn and have no issues with needles, but last time it took like 4 people and countless sticks before success.

So the doctor checked me over, noted my current spots, and recommended that I go back on Narrowband UVB treatments since that was effective previously. She also mentioned that I should keep up once a month maintenance treatments for the rest of my life after getting clear, just to stay clear. I know that there are in-home units you can buy so I'm going to check into my insurance to see if they'll cover it at all. She also recommended a doctor closer to me so I don't have to take the 1-2 hour trek to Denver just for checkups. I plan on checking him out once I can afford my co-pays for appointments and treatments.

It would be good to get clear again and even better if I can get an in-home unit so that I don't have to go to the doctors office multiple times a week. I got my teaching schedule for next year and at least it will allow me to get treatments fairly easily as opposed to this past year when I was teaching almost all day every day.

Other than that, not much of an update. I currently have feint spots on my left arm, with darker ones on my right breast and right flank. They aren't as bad as they've been in the past so I'm not too worried, they're just annoying right now. The one on my arm isn't easily visible right now but if it does get darker, it will be the first spot in a place that is seen when I'm fully clothed which is a bummer, especially since it should be getting sun and UVB rays anyways.

The journey continues...

New spot, brought on by stress

Yesterday I noticed a new spot on the inside of my upper arm. It's rough, pinkish in color and wrinkly. I told my wife about it and she made me put lotion on it. It stung really bad (which is normal) but it didn't go away (which is not normal). We washed the lotion off and I put a super soft long sleeve shirt on and am doing better. I know that my stress level is through the roof right now (as it always is towards the end of the school year). This has caused my regular spot on my lower back to get darker (and spread to 3 separate spots) but now that it has gone to my arm, it has me more concerned.

I need to go see the doctor again but I'm really resistant due to my previous bad experience at Anschutz Cancer Center. Given that they're the only option for CTCL clinic in Colorado, I don't have much other choice. 😞 It also sucks that I have to take a whole day off work to go.

I guess I'll be setting up an appointment tomorrow.

New treatment study needs participants

I am posting this survey request and new pilot program in the hopes that other Stage I and II MF patients will participate. I did not receive any compensation for this post.

Did you know there is a pivotal Phase 3 clinical study available to early stage (IA, IB, IIA) MF patients currently enrolling participants throughout the United States? The Fluorescent Light Activated Synthetic Hypericin (FLASH) Study is open for the treatment of mycosis fungoides. Read more about this novel new approach to light therapy in the attached article.  One of the critical ways we, as patients, can contribute to the advancement of research and science in cutaneous lymphoma is to volunteer to participate in a clinical study.    Phase III clinical trials are hard to fill because they require a large number of participants (over 100).  In a rare disease like cutaneous lymphoma, this can be very challenging.  It is the last phase of the clinical trial process before submitting the data to the FDA for final approval and commercial availability.  A special pilot program is being considered for patients who live in Texas and Louisiana. In order to determine if satellite centers can be opened to provide easier access for people participating in the study, we invite you to answer this brief survey. It will help the company find new locations for delivering the treatments. Click here to take the survey:   https://flash-study.typeform.com/to/Zwdwp1 You can view the specifics about the study on our website:  http://www.clfoundation.org/research/clinical-trials/usa. Or on the Clinical Trials government website:   https://clinicaltrials.gov/ct2/show?term=SGX301&rank=1. Take advantage of the chance to play the most important role in advancing medical knowledge about mycosis fungoides. Your participation can help make new therapies available to people around the world living with cutaneous lymphoma. Let’s do our part! Thank you for your time and consideration.

An extremely sensitive day

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.

Trying to set up an appointment at University of Colorado - Anschutz Cancer Center

I moved to Colorado this summer and things have been going well. A large amount of personal life stressors have meant the small spots on my lower back are getting noticeably worse. My wife saw them and got really upset that I hadn't already set up an appointment to be seen by the specialist here.

So I'm trying to get an appointment with UC - Anschutz Cancer Center and there are quite a few hoops to jump through. I am glad that there is an actual CTCL clinic there though; it even has a dedicated phone line, just for CTCL patients. I'll be seeing Dr. Pacheco and her nurse Ellen has been helpful in guiding me through all the hoops to jump through.

1. Insurance - This one makes sense. What doesn't make sense is that the first time I called, she said she couldn't set up an appointment without my insurance information. Ok, I called back when I had it, spoke to a different person who said that they couldn't take my insurance information unless I had an appointment set up first. I knew I had a lot more hoops to jump through before getting the appointment set up, so it made no sense to set up a fake appointment just so they could enter my insurance information. Finally she just took my info so hopefully it's in the system now.

2. Dermatologists information - I had my original biopsy done by the dermatologist I had gone to in order to get treatment for "eczema". The dermatologist did the biopsy, gave me the news of the diagnosis 2 weeks later, and I've not seen or talked to her since then. It seemed bizarre that they'd rather have the dermatologists info than my CTCL specialist's info.

3. Pathology Report -  I suppose knowing my original diagnosis condition is helpful, but it seems to me it would be even more helpful just to check out where I am now.

4. Biopsy Slides - One company has my original biopsy slides, a different company has the pathology report made off those slides. New doctor wants both.

I get that they need to verify that I actually have CTCL and am not making it up, but I don't get why they want my reports that are 3 years old rather than my current info from my most current doctor.

I'm hopeful that they can get the reports this next week and set up an appointment fairly quickly. It would be nice to get treatment (hopefully nbUVB again) going as soon as possible. Thanksgiving break would be a convenient time to start treatment back up and get acclimated to the mild sunburning.

Slow is the name of the game

I've still yet to go see Dr. Wickless at UT-Southwestern although I really should. The spot on my lower back has grown to about the size of my whole hand. It's still thin and not too itchy but has definitely spread out. I've been under a lot of stress (both negative and positive) so I'm not too surprised about it. I've always been highly reactive to stress and usually work to not let stress get to me.

The reason I've not been to Dr. Wickless yet is related to the recent stress. We made the decision to move to Colorado and I've been job searching. It's been stressful considering that there are very few positions in the state for what I do let alone finding an available job. Despite the odds, I lucked out and was offered a position at my dream school. We'll be making the move this summer so I've decided to wait and just start seeing a doctor there, likely in Denver. I'm still researching possible doctors and I haven't gotten the details about the new health insurance yet.

I'm hopeful that once we get settled in Colorado in the next 3-4 months that the stress will come back down and the spots will go back to being dormant or at least stop growing.

Slow is the name of the game.