What next.

Wow. That was a lot of people asking a lot of questions that I don’t have the answers to.

Now I’ll hope the topical treatments take care of the problem and it never rears its head again.

I probably won’t be that lucky. This is something that can’t be cured, but can be controlled about 90% of the time (depending on which published report you decide to quote from). Most likely the cancer will become what they call “refractory” to the steroids. That’s when we move to another treatment, like retinoid creams. Ironically for a skin cancer, CTCL can also be controlled by exposing it to UV B light. They also use topical mustard creams. In all there are perhaps a half a dozen or so regular treatments, and a lot more experimental and “orphan drug” treatments. Each time it flares, my derm doctor will decide what to do next.

BTW, will there ever come a time when you can stop taking the medications that prevent organ rejection? Like can your body eventually and gradually adapt to the liver? Or do the doctors just not want to take that chance?

For obvious reasons, there hasn’t been many controlled studies to find an answer to that question. Sometimes transplant patients (like heart patients or asthma patients or diabetics) stop taking their drugs the way they’re supposed to. In transplant patients that usually means that they are setting themselves up for organ rejection. However, there are some recorded cases of patients who fail to comply with their doctors’ orders and yet have not yet rejected their organs. Nobody is quite sure why this is. Dr. Liver has suggested that there may come a day when I can stop taking my meds, but that day is not likely to come for a long while. To be honest, I’m not willing to risk it until they understand why some people don’t reject and can accurately predict if you are safe in discontinuing the immunosuppressants.

Here’s hoping whichever treatment you are put on eradicates it for good!

There’s always a chance they’ll find a cure, but right now I have no reason to get greedy and expect that. This will come back, off and on, throughout my life. While they didn’t find any of the malignant T-cells in my blood, they are there. They’re just in numbers too small to find. That’s how I’ve gotten so many patches of this stuff in different places in my body. Fortunately, these cells are attracted to skin, and specifically look to lodge in the dermis. While we are highly unlikely to exterminate them, we can bring them to the brink of extinction.

What happens now?

Due vigilance. I go for regular check-ups to the dermatologist. I look for any signs of a new eruption, and I co-opt The Prof into doing the same thing. I make sure I apply the prescription every night. And I make myself familiar with the current research, so if something does come up I can make sure I’m first in line for the treatment.

If it’s appropriate to “yay” in a post that concerns cancer:

Cheerful optimism is always appropriate. Tasteful jokes are also appropriate. In fact, inappropriate jokes are appropriate. If you can’t laugh at this stuff, then it wins.

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17 Comments

  1. Oh, that is WONDERFUL!

    It’s probably a testament to how well you take care of yourself that you found it so early.

    Now I’ll hope the topical treatments take care of the problem and it never rears its head again.

    BTW, will there ever come a time when you can stop taking the medications that prevent organ rejection? Like can your body eventually and gradually adapt to the liver? Or do the doctors just not want to take that chance?

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