NBUVB times

I've been keeping track of the times that my NbUVB treatments go for on this second round of treatment. During the first round, I only went up to about a minute and a half. So far I'm up to 2 minutes 20 seconds with a probable goal of around 3 minutes.



I'll post updates (maybe) as I go along. So far I've been going twice a week since March 27th. The real values they go off of are dosages in milliJoules, but they don't tell me that unless I ask for it. The graph is of the length of time the treatment is (because they do tell me that each time). For example, the last treatment may look like a decrease (it was 6 seconds shorter), but that's just because the machine was operating differently that day. The last treatment was actually the same dose as the one before because I burned at 2 minutes 20 seconds, so instead of increasing it again, they kept it the same dose.

Starting treatments again

My last post was titled "Seeing a new doctor soon" so I suppose I should start with that visit first.  Basically, he went over everything that my previous doctor had sent over, said "yup, you have CTCL", and "yup, you should start up narrowband UVB again". 

So, today (yes, it's taken me 4 months to actually set up a nUVB appointment, don't judge) I went to my first treatment (for this round). 

I've already made a post about what the nUVB experience is like, so I'll focus on the differences this time around. My previous place had you wear goggles and a face shield, this place has flimsy sunglasses and asks you to put sunscreen on your face. They provide the mineral oil which is nice because I had to bring my own each time before. 

The biggest difference was that this place has a fan in the booth so that you get nice cool air circulating around. It never got terribly hot, but was just comfortable. They started me at 53 seconds which is a lot more than my previous place started me, but I'm not quite as fair as I was back then (still classified as a level 1 skin, the palest). 

They also let you see the calendar and write in your own appointments which is nice. 

Afterwards, I have the sensitive, tingly, I'm kinda burned but not really, feeling all over my body. I'm exhausted, hungry, cranky, and worn out. On the drive home I realized that I'm in for another year or two of this feeling which sucks. Then I remembered that compared to most people's "cancer treatments", this is nothing and I need to stop being a big baby. 

I hope everyone is having a great day. Now I'm off to eat, sleep, whine, and lotion. 

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.