To begin radiotherapy for Cutaneous T cell lymphoma on my tummy.

Hi Ridgeway - Please forgive my late reply as I spend the vast majority of my time and effort reading and analyzing with doctors, instead of patient forums. Please contact me directly for my story, treatments I have had and doctors visited.

To briefly touch on your two questions:

Re Bleach

The recommendation for bleach baths are for 2 to 3 times per week, 1/2 cup to 1 cup of bleach, for 5 to 10 minutes. Some doctors are against bleach, but it is fairly standard. I really depends on your skin and stage; if your doctor is against it, seek second opinions. I recommend going to at last 4 doctors.

I deviated from this, based on my skin and activity levels. When my skin was very bad and open / shedding, I have done up to 5 soap/shampoo showers per day, and bleach baths every day -- occasionally two bleach baths per day. I would even increase it to 2 cups of bleach for almost always for much shorter duration, measured in seconds (10-20 seconds),

This is not a recommendation, I am stating what I have personally done and there are reasons why this would work. I wouldn't do these 2 cups for long periods because it damages the skin.

The goal for these baths are two folds. The first is everyone knows, which is to stop/limit infections, as they cause progression. I had skin openings and needed to limit infections to give a chance for skin to heal.

The second reason involves a mouse study by a respected university, but was flagged here, but we can discuss privately.

Do I still take bleach baths? Yes, though I am now on the recommended schedule, and will soon may spread so it is even less frequent.

I have developed a checklist for minute (very small) signs that tells me my body is going into an inflammatory cycle, even before it is noticeable. (If it does, I will no doubt immediately restart daily baths.) My lesions follow these cycles, and these lesions can take months to heal even tough I may no longer be in this inflammatory stage, the damage has been done. For this reason, I try to stop the cycle in its tracks with baths but other things as well which can be discussed it seems we have gone through something similar and it may work for you, I can provides things I have done, the signs, etc which you can discuss with doctors.

Re CD30

The question is, where did the CD30 come from? If it was faintly in the blood, the lower it is the more likely for brentuximab to work. There are doctors that strongly believe in BV and will try to push it for long durations. If it works for you, ask to have it spread out, where instead of every 3 weeks it is every few months. My side effects were mild and stopped after I stopped taking it.