Scared ... Is Lung CANCER rare, worse in EDSers

March 25, 2004

Dear Caro,

I can't imagine what you and your family are going through! " Scared " is

only the tip of the iceberg I'm sure.

I can't say I have seen anything linking any more prevalance of any cancer

with EDS. A gene switch is triggered with cancer to stay open and keep making

more cells and can't say I see how our collegan problem helps or hurts that.

The one thing I did want to comment on was your question about pain meds.

" What scares me is this. Could the pain meds have numbed the cancer spreading? I

mean, we use the pain to know if something is wrong, but that pain was " turned "

off with all the pain meds ... or not. "

The pain is not " turned off " by the medication. If only they could do that

what a happier bunch of people we would all be!! Even when medication is

introduced for acute pain all they can hope for is a dulling of the pain, maybe

knock it down a degree or two on the pain scale but thats it. Those of us on

pain medication for any period of time will tell you we still feel all our

chronic pains but they are toned down. And boy if we get a new pain we sure feel

it just as strong as anyone else would! Which is why we need additional

medication after surgeries and such. This is because acute and chronic pain

signals are different. They do different things to your body and react

differently to meds.

I just had a very bad neuritis (inflammed nerve) episode with a subluxed

neck vertabre which my fentenyal patch didn't even touch. I was prescribed

oxycodone 10-325's and told to take 2! every 4 hours. The pain just laughed at

it! Didn't even dull it a bit.

I sure wish I could help you more. I hope the above at least helps calm

some of your fears. Good luck and I wish both you and Bill my best.

Hugs,

B.

HEDS, New Jersey, USA

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