Namely, cancer.

Hello all my old friends - it's been a few years (4 I think) since I last posted here. As you might guess from the above the reason is a touch of the old C, which while never offering quite the exquisite pain of our friend The Beast nonetheless has a lot to commend it in the generally screwing up your life department.

To make a long story short I managed to beat that particular bugger (I think) and at the end of this year will be 5 years out from diagnosis, which is kind of a final landmark. Not that it can't come back after that, but if you get to 5 years you're in pretty darn good shape. For the record my particular cancer was called Metastatic Squamous Cell Carcinoma, and went from a still-unknown site most likely at the base of my tongue to a couple of lymph nodes under my chin. I had surgery and radiation.

The cancer hit me about 6 months after my last major cluster cycle in spring of '08. Guess what? Yup, just started another cycle last week. Oh well.

Complicating treatment for this one is the fact that recently I'd been diagnosed by a rheumatologist with something called Raynaud's Syndrome (or Reynaud's Phenomenon), which is a vaso-constrictive condition in the hands and feet, mainly the former in my case. For about the last year my hands have been cold, numb and tingling.

And therein lies a bit of a rub. The Rheum doc told me to eliminate caffeine from my diet and has me on a nitro cream normally used for angina treatment that I spread on my hands. You see where this is going... no coffee being, as we all know, a bad bad thing for helping maintain a painless CH day. I've been weaning myself off my daily two large capuccinos onto, at present, a single that's half decaf. Bleh. But the hands thing is really annoying at this point. Still, if the non-coffeeness doesn't help I'm definitely going back to it.

Meanwhile I dug my old welder's tank out of the basement and got it refilled with O2, and yesterday started back on good old Dopeymax, which worked well for me during the last cycle even if I felt loopy and lost 10 pounds. And after losing 30 during my cancer treatment and gaining back only maybe 8, I really don't need to drop any more weight!

Not glad to be back here of course.... except from the point of view of sharing things once more with all of you good people.

Wishing you all many painfree days!

all the best,

David

Damn, glad to see you neat the bg "C"'s ass....he's a seriously scary dude.  :(

Since you've been away a bit, please check out this link:

Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH! It's kind of the latest and greatest thing since 02 around here. Has had me off cycle coming up on 3 years.

JOe

There are certainly things more deadly than CH. Lots of them.

None that offer quite the exquisite level of pain, though. At least none that I can think of.

Glad you're still with us.

Thanks, guys. I've checked out Batch's supplement page. Looks promising indeed and I'll be making a trip to the drugstore later today to pick all those vitamins up. Hopefully along with a new supply of Sumatriptan...

One word of warning from a guy who was doing sumatriptan while ramping up the vitamin and mineral levels: the sumatriptan is going to cause rebound headaches, and you end up treating the rebounds with the stuff that caused the rebounds, etc., etc., ad infinitum, and you end up in a downward spiral.

If you can, dump the triptans while you are increasing your serum levels of vitamin D. In retrospect, I think I would have become pain free much faster.

At the same time, everyone here understands that you have to do what you have to do.

Thanks, Brew. Since it's been 5 years since my last real cycle, and since I more or less suffered in silence for years before going to a neurologist for that one, it was the first time I'd experienced either Topomax or Sumatriptan. He too of course advised me not to use the latter too much even as he was phoning in my prescription. I'll hit those supplements in the recommended doses and keep my fingers crossed!

Oh and Guiseppi, you're absolutely right about the pain. No question about it. Radiation treatment is horrible and they give you good drugs like Oxycodone and Fentanyl for the pain - which is bad and unrelenting but not of course as bad as we know it... but at least you know it's all going toward saving your life. Ah well.

Hope you are well. Just when you think you have it bad, something worse comes along. Stay healthy.

Scary to think that the strongest pain meds can't beat down a CH attack, though, huh.