Friday, March 12, 2010

The Raccoon Is Back

The Revlimid has started to kick in.  I could feel it yesterday when the skin of my scalp, by the top of my ears, started itching.  I also saw the raccoon eyes start yesterday(bright red spots on the inside of the eye socket).  But this morning - I've not had this before - the insides of my eyes, specifically my eyelids, are swollen and reddish blue.  As if I had been in a fight.  I always had a reaction to the Revlimid within the first 4 days of taking the drug.  See "Son of an Itch" post for the details on my first encounter with this effect.  I've taken a Zyrtec and called in sick (but have to find someone to cover a client meeting).  The effect of the Rev is much more noticeable now that I have no hair.  In addition to the eyes; my ears, and the skin around, is bright red.  I have two red patches that flow down on either side of the front of my scalp (around where the hairline should be located.)  Last, my big red birthmark, usually only subtly pronounced, is now bright red like a neon sign saying, "eat at Joe's".

The only change that's taken place is the addition of some very difficultly named vitamins that the neurologist recommended I take.  I met with the neurologist on Wednesday.  He looked me over and checked my legs with a tuning fork (so much for carrying a tune).  He told me to take Acetyl L Carnitine and Alpha Lipoic Acid along with Vitamin C.  I ran these by the docs in Boston and all was fine as long as I wasn't taking Velcade.  Additionally, he told me to stop taking the Dilaudid as the morphine that drug provides to my body, for pain relief, actually prevents my body from making it's own morphine.  He specifically mentioned that if I was to have acupuncture (currently scheduled for Tuesday, lunch time) it may not work due to the fact that my body wouldn't be releasing the morphine it would usually release with the acupuncture as it's been dulled by the dilaudid I'm taking into my system.  So I stopped taking the Dilaudid as of that day.  And boy were my feet killing me yesterday.

The docs also upped the dosage of the nortriptylene.  I'm now taking 20mg per day (in the evening) and I actually believe that may be helping.  However, it's tough to get up in the morning!  I feel good, but wish I could get this issue with the feet resolved, in addition to the reaction to the Rev.  Hopefully that will be lessened as time goes on.  So now, my daily intake is as follows:

  • Revlimid - 25mg
  • Dexamethazone - 20mg (1x per week)
  • Lyrica - 300mg
  • Nortriptylene - 20mg
  • Accyclovir - 400 mg
  • Acetly L Carnitine - 500mg, 4x per day
  • Alpha Lipoic Acid - 300mg, 2x per day
  • Vit C - 1000mg, 2x per day (revised to 500mg/day by DFCI)
  • Vit b12 - 500mg
  • Vit b6 - 100mg (upping that to 200mg today)
  • multi vitamin - 1
  • baby aspirin - 1
So now for some fun - first, one of my avid readers (who shall remain anonymous) was kind enough to bring to my attention the Wikipedia entry for hiccups (see link).  Now the cure fo hiccups I had written down was not mentioned but he did point out the cure outlined in the second paragraph under the heading "Medical Treatment".  Specifically, this is what you should do before you actually pursue any medical treatment.  Luckily, I was able to cure my hiccups prior to having to resort to these tactics - lucky for my wife, that is!  It was interesting to read about the young girl that had hiccups for five weeks continuously.

This same anonymous reader is the one who sees my video chat at work.  I have strategically positioned the camera so that all you see is the top of my head.  Apparently this person is a bit slow at work as he likes to watch the video of my bald head and has asked if I could potentially put something on the top of my head so that it might better resemble a different part of the anatomy (put your thinking cap on as I'm not describing this in any more detail!).  After trying to find different objects on my desk that might suit this purpose I realized I had a chat open with approximately 12 different people and all of them had the ability to see my misbegotten attempts.  Unfortunately, I will not be able to fulfill his request and have ceased trying to find a way to do so (and embarrassing myself in the meantime!)

Enough for now!


Beth said...

I wondered if your eyes look anything like this?

I thought, when this happened to me when I was on thal/dex, that it was edema. Now I'm not so sure.

rugbyhubby said...

I think that's exactly what I had. Here's what happened (i'm hoping you'll see these replies). I couldn't get my Rev in time so I wasn't able to take my first dose till Monday evening (7pmish). I took my next dose around 2 on Tues and got back to my regular schedule at 630 on Wed. I think that dosage of Rev, that quick together (vs the usual 24 hour split) caused my reaction to be much more than usual. In my case, my eyes swelled up but only on the inside area of my eyes (towards the nose). But i had 3 folds of skin there and all red. My eye sockets will always turn red on the 4th/5th day of the Rev. But this time it was really bad.

So I think your reaction and mine was the same thing, all due to the Rev! Read my earlier post about Rev (think it was called Son of an Itch) as that was really funny as no one had told me what could happen! Which is why I created the page "the drugs and their effects"

by for now.