Crapsicle. (Not cancer bad, but quite annoyinig)

[Moondoggie22]

Well, I went to the dermatologist this morning and he took out all of the stitckes he put in my arm last week (one). He also had the pathology results from my skin biopsy. Any guesses as to what it said? C'mon, you guys know the drill for me by now:

Inconclusive.

Crapsicle. Yes, it's good that there wasn't a bad result (that flesh eating bacteria's still out in the wild, right?), but still, it's just one more test that's told us absolutely nothing and left us all scratching our heads. At this point I'm craving some kind of bad result just so we have a definitive plan to fight this. I mean, I was happy with a cancer diagnosis last time - couldn't they find something slightly less worse with an actual name?

Frickin' Itch.

Anyway, the main reason I'm posting (other than I know that everyone constantly refreshes the page just to see if I've piosted anything, right?) is just in case my latest appointment helps click anything in the brain of a fellow itcher's doctor and then we can all be helped. So here's what Dr. Heald else had for me today.

He was most impressed this time with my band-aid scar. Since it was one little stitch, I just had a band-aid over it the first couple of days. Then I discovered what I had forgotten. At some point during ABVD, I became strangely sensitive to tape. I say strangely because A) I never had been in the past and B) it was never consistent. Today, the band-aid breaks out my skin and I need paper tape. Tomorrow it doesn't, but it's paper tape that flares up. We've gone through the gamut of different bandage adhesives, and every one of them will work some times and break out my skin other times.

Dr. Heald said that sometimes through chemo and the SCT process, your skin can become hyper-sensitive. Even though you're using your Dove soft and gentle soaps and your perfume and dye free detergent, you can still wind up having a reaction from your clothes touching you. Like an allergic reaction, but more annoying. And sadly, the Northeast is no place to become a nudist, Polar Bear Club or no.

On top of the clothing/chemicals thing, he said that sometimes even the steroid creams like he was giving me before will have just a trace amount of preservative that sets everything off. So I might have been aggravating all of this back in the day when I still believed in creams.

The Elidel he gave me has been working wonders on my forehead, and he said I could go ahead and try that on my body too, but mentioned that not only is the stuff kinda pricey, but that it's only available in those stupid smaller tubes. No jumbo-size like the steroid creams. That makes it a little tougher to consistently coat your body.

He gave me a prescription for another cream, one that's in a different class from the other creams we've tried and that might not have stuff in it to set me off. I would tell you guys what this stuff is called, but I haven't dropped off the prescription yet, and damned if I can read his writing.

He also suggested lotioning up with Eucerin or Lubriderm immediately after getting out of the shower. Aside from the obvious moisturizing effects, it works as a little barrier between you and your toxic clothes.

Lastly, we're holding tight with the Doxepin. It takes time for it to build in the system, and since I've been noticing a little bit of effect, we'll let it build up some more before we change anything. He did say that we've got quite a bit of wiggle room on this one. I'm taking 50mg of it and he has other patients who are taking 250-300mg for itching.

So that does it on the Itch adventure until January 19th when I check in with him again. Here's hoping the Doxepin keeps building and one of these stupid creams finally does its job.

[roswelldeb]

Brian,

Sorry to hear that there is no answer, but I choose to think that any news that isn't definitely bad must be good.

My sister went through almost a year of miserable itching (yes, after my diagnosis), and at my insistence had all the x-rays, scans, bloodwork, etc. done -- what showed up? Nothing at all. Granted, hers started with a terrible reddish purple rash, but after many, many doctors and many, many meds, nothing helped much but some mega-shots of steroids the dermatologist gave her for a period of months. She had to stop taking all medications (including those for arthritis) to see if any of them were causing the problem, but in the end, she just had to tough it out. She gradually started adding back in one medication at a time, but still has to be very careful with soaps, perfumes, lotions, etc. She is finally doing better, but the doctors have no idea what caused this reaction (other than perhaps a reaction to the flu vaccine she had a couple of weeks prior to the initial rash, or maybe an antiobiotic she was on for a tooth infection). Needless to say, for any of us who are intimately acquainted with the Hodge (or our loved ones), an itch like that causes much anxiety. I hope the Doxepin is working on both fronts for you!

With all your body has been through, it may take it awhile to readjust -- don't give up on it just yet. Maybe you could add some of those cute little back-scratcher things to your Christmas wish list -- I want to see pictures of the "Scissorhands" look when you get about a half-dozen in each hand to take care of all the spots, though!

Just another thought, but have you considered acupuncture? (I posted about my experiences with that on another thread earlier today --) They are using it regularly these days for pain control, anesthetic use, etc., so maybe it could get your some relief, even if only temporarily.

[MaryIN]

thank goodness. I've been refreshing my page ALL DAY waiting for a new post from Brian... :-) Sorry for the inconclusive itch-formation, bub. You just can't seem to catch a break, can you?

[jam]

Brian, you may be on to something (or ON something)... flesh-eating bacteria. Maybe you could get a small tube of that, smear it on a test area, after it eats off the Frickin' Itch, go on an antibiotic to kill the bacteria, see if non-itchy skin grows back in its place. Whatta you think? It couldn't hurt. And it doesn't sound that much different from a lot of the stuff they do to us to kill the hodge. I think you should give it a shot. Tell 'em John sent you.

[SarahSmile]

Brian, you may be on to something (or ON something)... flesh-eating bacteria. Maybe you could get a small tube of that, smear it on a test area, after it eats off the Frickin' Itch, go on an antibiotic to kill the bacteria, see if non-itchy skin grows back in its place. Whatta you think? It couldn't hurt. And it doesn't sound that much different from a lot of the stuff they do to us to kill the hodge. I think you should give it a shot. Tell 'em John sent you.

Freaking hilarious!!

Yep, still feelin' the love...

[AMD45]

Brian, I don't have the itch -- at least it's one thing I don't have -- but your post made me think of a couple of things. First, I've had a terrible time with tape. I can't even do paper tape -- ever. Earlier this fall when I was dealing with the infections from my port, my biggest problem I had when they took out the port and put in a PICC was that I was so allergic/sensitive to the adhesive thing they put over it to keep it sterile that my arm was bleeding every time my dressing was changed. Because there really is no other way to keep the site sterile, I was having my dressing changed at least every other day. And I still ended up getting an infection in my PICC . I had an awful time with the tape and dressing for my Hickman when I had my SCTs that we must have tried 10 different kinds of tape before we found one I could tolerate. To this day I have a bigger scar from what the tape did to me than where the Hickman came out of me. The tape that finally worked was called Metflex (I think). The other thing I was wondering was have you tried using the aloe gel that works great for radiation burn? I have no idea whether it would work but it might make you feel cool all over for a little while.

[pine soul]

I hope the Doxepin is working on both fronts for you!

This might be the problem. Most people have a back and a front. I'd get that checked out.

I know my simple humor can't begin to measure up to yours Brian but I'm hoping if I read you long enough...!!! You're my humor idol.

[drexel6337]

OK, well this isn't going to solve your itch problem but as a fellow chronic itcher who has learned to just live with it, I will share with you my least offensive moisturizer. Coconut oil. I get the pure virgin coldpressed kind you can eat and use it everyday after showering. It is at the top of all the healthfood doctors "good for you" fats, and it happens to be great for the skin too. It just gets rid of the dry skin part of itching that can make whatever is the real itch problem worse.
I hope you get to the bottom of this for all of us!

[izzydoesit]

Brian,

I have no humorous riposte. Itching is not fun. Neither is any chronic and annoying malfuction of the body, a constant reminder that we only inhabit our skinbags, we don't control them (dammit).

I personally think we should petition God and tell him that due to our particular bodily malfunctions--and because our bodies came without operating instructions, warrantees, or tips for troubleshooting--we deserve to trade them in for identical ones that function perfectly.

Can I get a witness?

May your dreams be itch-free.

Kim

[lovelife]

I don't have any answers, but have had similar experiences. A couple of weeks after my SCT I started getting a terrible itch everywhere - scared me a lot but no evidence of anything of course. After a while it went away and I chalked it up to the re-growth of all of the invisible hairs on my body, that I didn't even realize had fallen out (or that I had in the first place).

I also have a terrible tape and bandaid sensitivity that I don't recall having before cancer - only paper tape for me and even that's tough sometimes.

As for the itch, well as you know Brian, it's back for me as well, 8 months out from my SCT. Plus pain in my right arm, plus new "spots" on my lung in my latest scan. What's it all mean? Your favourite word: inconclusive. I agree with you - I would like to hear a diagnosis one way or the other, just to put my mind at rest.

Anyway, hang in there and if you find something out (although I don't recommend following John's advice re: the flesh-eating disease test) let us know! My fingernails have almost all fallen off from scratching and scratching and it's getting hard to open the ice cream container without them...

Maggie