COVID 2020 Update

No news continues to be good news. Prior to everything getting shut down due to COVID, I had been maintaining my UV treatments once every other week. My doctor was hesitant to take me off the treatments, since I had a reoccurance after 22 months with no treatment previously. He said I would likely remain on a maintenance dose of treatment every other week for the rest of my life (or until it stopped working), just to ensure I stay clear. 

The shutdown caused all treatments to be cancelled beginning in mid-March. At that point, I was clear again with no CTCL spots, so at my next doctor's appointment at the end of March (over the phone), he said that I could just go without treatment until I get any spots again. It's now the end of July, so 4 months and I'm still clear. 

I was hoping to have an increase in energy due to not doing the treatments, but my energy level has been getting lower and lower. Probably more to due with the isolation in quarantine. As a teacher, I really miss my students and have realized how much energy I derive from their excitement and enthusiasm. I'm hoping that we're able to get things under control soon so that life can get back to as normal as it can. 

Otherwise, I'm doing well. I can't complain. I just drink caffeine on the really bad days to try to get stuff done (anything more than laying in bed reading requires energy I don't feel I have). 

Non-CTCL Update to the update on March 29, 2021. 

The lethargy continued for months and kept getting worse. It was a major fight to get out of bed in the morning and I was drinking a lot of caffeine just to be able to function at work. I don't usually drink caffeine so this was a major sign something was wrong. In december I got a non-CTCL rash on my shoulder. It never went away and I started getting intensely itchy spots all over my body. I would wake up in the middle of the night with a manic need to scratch. I went to my dermatologist and he mentioned several possibilities including issues with gluten. He prescribed clobetasol and I went on my way. The clobetasol stung so much when I put it on that I would be in tears for about 20 minutes before the stinging died down enough to be manageable. I stopped doing it after a week of no improvements. I also stopped eating gluten just to see if that helped things. Within 3 days, I was amazed at the difference in my energy level. My lethargy was completely gone, I feel so much better and don't need caffeine to get through the day. Still had the rash though. I went back to the doctor and he did a biopsy test for gluten allergy. 2 weeks after that they called me and said that the gluten sensitivity test came back negative. So I excitedly ate regular bread again. It was the worst decision ever. The next day, the lethargy was back with a vengeance. It took about 3 days again of strictly no gluten to get my energy back. The doctor believes it is eczema and recommended restarting the narrowband UVB treatments which I agreed to. It took about 3 weeks, but that was able to completely clear the rash and no more itching. 

Although the tests say I don't have a sensitivity to gluten, I feel so much better off of it. I feel like last summer was such a blur, but I'm looking forward to this coming summer and actually having the energy to do things on my break. 

Updates on treatments

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.

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.