Wednesday, March 6, 2013

Bob update: New diagnosis

Bob and Red Kitka
I think I may have posted at some point that Bob has been dealing with some skin issues -- several years ago he had an acute skin rash that came from out of nowhere, it seemed. Back then the doctors were all scratching their head, but it was eventually diagnosed as full-body psoriasis. I had trouble wrapping my head around this, and we went to many doctors in our area, and at UPenn, for alternate opinions. Everyone was in agreement -- it's psoriasis.

Psoriasis treatments
How very lucky we are to have insurance that covers the very, very expensive treatments for psoriasis. Many people, we learned through online support groups, don't have access to these drugs. Enbrel, Humira, and similar drugs are many thousands of dollars but usually very effective.

Treatments don't work!
Oddly, 'spensive as they were, they didn't really having an effect on Bob's condition. The body rash  never really improved much, despite these state-of-the-art meds and topicals recommended on support groups. This winter it was particularly bad, and my husband grappled with constant itching, pain 'like a bad sunburn,' chills, fingertip infections, to say nothing of going through life with "dots" all over. In late January, his hair started to fall out in patches. The dermatologist did another skin biopsy, which was inconclusive but showed a particular pattern suggestive of another kind of problem. Hoping for something more definitive, he did four more biopsies.

Not psoriasis after all
This time the results came back with a conclusive diagnosis, from two different pathologists: cutaneous T-cell lymphoma. In one sense it is bad news, because the 'L' word is a scary word. In many other ways it is good news. Most importantly, the prognosis is good, but also:
  • It is a chance for symptom relief -- skin issues, especially full-body skin issues, are a real blow to quality of life.
  • The initial treatment is non-invasive,with few side effects.
  • It can go into remission -- that's the goal.
 The first standard of treatment is light therapy, three times a week, and with any luck that'll be all that is needed. Normally, I'm all about research and a friend once chided me about my compulsion to go after  a topic and "understand it to death." I read a little about this back when Bob was diagnosed with psoriasis (apparently it is often misdiagnosed as psoriasis), and I've read a bit in the last few days. No more. Sometimes research opens you up to worries that never come to pass, and I don't want to go there right now. The doctor is upbeat, Bob is upbeat, and all the signs are good. That's enough for me...


  1. so sorry for what I hope and assume will just be aggro and nothing more - right?!! sending all the good, healing energy we've got - look after yourselves and rest on Harv's neck when you need a breather.

  2. What's wrong with understanding something to death when it is affecting your loved ones? As long as it is not affecting your mental health knowing things, then research away. Just take some time away from it every now and then to focus on something completey unrelated and happy. ;)

    My prayers are with you and Bob. I pray he can be restored to better health and that you both can have a peace and fortitude about you throughout the whole thing.

  3. That is a very nice photo of Bob and Kitka. I'm so glad you finally know what is going on (amazing in this day and age that it took so long to figure it out), and can now attack the illness properly. Sending lots of good thoughts!

    (And yes, furry necks are pretty much the best comforters ever)

  4. Sending tons of good thoughts your way. Kind of a mixed blessing. While the actual cause of Bob's problems is serious, on the other hand, at least now you know what it is and hopefully treatments will bring fast relief. Sounds as if you have some excellent doctors there to deal with it, so all will be well.

    And I add a third to the suggestion to hug a horse. It's an amazing healer of hearts.

  5. That is good news, because now his condition can be treated and he will finally have some relief. Best wishes for the light therapy!

    I love the pic with Red Kitka.

  6. I agree that a diagnoses is definitely good news! Good for you for vowing stay upbeat. Prayers and thoughts that this is cured easily and quickly.

  7. I'm so happy you finally have a concrete diagnosis. That is half the battle. Sending healing thoughts Bob's way.

    Make sure you take care of yourself, too. Maybe Harv and his "people" can help you guys out a bit. (-:


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