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   Author  Topic: Cancer, Chemo, and Clusters  (Read 696 times)
RichardN
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  lastchantsranch   babbleontn
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Cancer, Chemo, and Clusters
« on: Dec 14th, 2005, 2:33am »
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Hi All
 
  I have been contemplating this post for months now, started to write it a few weeks ago and when I was several paragraphs in . . . . lost the whole damn thing.  Puter' has been off getting stripped and a new one built for us and (so far) seems to be working . . . so, . . .will try again.
 
  I considered the topic "Cancer Cures Clusters - Get U Sum" (sic) but thought that might be a bit much even though we clusterheads tend to appreciate gallows humor.  Now let's see how brief I can be.
 
  I will be 59' in March.  My CHs started 1/01 as the result of (I believe) a head injury.  A year of tests (all normal of course), CTs, MRI, non-working meds and they just got worse and worse.  When my wife found this site 2/02, I was having 6-8 per day, KIP 5-9, and sometimes 3-5 per night.  Within weeks, with help from you guys I had my first PF day.  The next year gave continued relief using Verapamil as preventative and 02 as abortive . . .  chronic, but somewhat in control . . . not afraid to take my grandson to the woods.   Then . . . and only a very few here know . . .  
 
 . .  March 03, in emergency room for strep . . . then found to be meningitis . . . proceded to encephalitis (sp?).   I was in the hospital 21 days, very close to dead for 11 of those days.  My wife had the tough duty . . . . I was out of it most of the time.  So . .. . survived that and . . . .
 
  May, 03 followup from the above . . . blood in urine . . . more tests . . . urologist . . . tumor = surgery (TURBT), supposed to followup with BCG treatments, but could not tolerate that particular physician . . . got referral to excellent urologist who had to take his own "look" (another procedure, another recovery), then on with the six week BCG treatments . . . (during this time I also took accupuncture and herbal treatments from a well-known area practioner which I believe was beneficial in several areas).  Well, the treatments took care of most, but not all of the malignancy . . . bladder would have to come out (and prostate at the same time).  So . . . .
 
   . .. . . I'm getting to the clusters . . . . I promise . ..  
 
  On to Vanderbilt University where Dr. Michael Cookson performed a radical cystectomy and built a new bladder and re-hooked the plumbing . . . . I don't have a stoma.  Amazing surgery.  Unfortunately, cancer was in the llymph nodes so chemo was next step.    Now . . .  .
 
 ...... during this whole time, I was also dealing with the clusters.  You wouldn't believe the looks I got from various medical personnel when I expressed more fear of the CHs than of the various procedures and potentials for my demise.  I took every opportunity to explain the prn 02 and how it worked to anyone who would listen . .  . three hospitals and scores of medical personnel . . .  and more to come.   Then the chemo . . . .
 
  Before I started the chemotherapy, I stopped taking the Verapamil (240mg at the time), Altace, Zocor and Zetia.  My blood pressure was running low (not normal for me) and low bpm.  Also I had confidence in my ability to abort most with 02.   Strange thing is, that as the chemo progressed (Gemcitabine (sp?) & Cysplatin (sp?), my attacks became less frequent and severe.  By the end of the three months, I even quit carrying my E tank and regulator all the time, until . . .
 
  about a month after the chemo I was in a local tavern and they ran out of my Busch NA (non-alchoholic) and I (stupidly) thought, "what the hell, haven't had a bad one in a while", and ordered a real beer.  Half way through it and in the space of 15 min., I had the second worst attack, including (the only time) projectile vomiting, total body sweat.  Had a full B tank (the little one) in the van but no regulator, so cranked it open with a crescent wrench and sucked it empty in a hurry.  Gave them a great show, pacing rapidly arround the room with friends and strangers threatening to haul me to the emergency room and one old gentlemen praying up a storm before I "passed".   That was a year ago last Sept.   Since then . . . .
 
  The attacks have gotten fewer and fewer . . . less and less intense . . . and I'm getting very close to "30 days PF without medication"  Had four ounces of wine at Thanksgiving .  .  . no problem.   Had a watered-down brandy a few days ago . . . minor shadow . . . I'll leave it alone.
 
  Bob P . . . I never forgot about the project . . .Julia still has the file . . . still think it's a good idea.
 
  I've been in and out of the site these last three years, usually to message a newbie and push 02 on anyone I could, but you have all been my family during the above ordeal, even though only a very few were aware.  But  be assured, I've been rowing along with you.  My "numbers" are good and it looks like I might be arround a bit longer.
 
  I and my oncologist (who I'm educating about CH) are interested if anyone has had, or knows someone who's had a similar experience.
 
  So, with that I'll end the longest post I've ever attempted.
 
  Love you guys,
 
    Be Safe,
 
 Richard
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 I and my oncologist (who I'm educating abou
« Reply #1 on: Dec 14th, 2005, 2:43am »
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. . . someone who has had a similar experience?
 
I think you are one of a kind.  Good luck.
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RichardN
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  lastchantsranch   babbleontn
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Re: Cancer, Chemo, and Clusters
« Reply #2 on: Dec 14th, 2005, 2:56am »
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  We are all "one of a kind" . . . . and I consider myself very lucky already . . . I'll get to see my grandson turn nine in a few months, and if I stay lucky, we'll be moving to our patch of Tennessee woods next year.
 
  PFDANs
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I can live with the beast as long as I don't have to "dance" with the bastard.
Melissa
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Re: Cancer, Chemo, and Clusters
« Reply #3 on: Dec 14th, 2005, 3:48am »
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Oh wow Richard... I had no idea. Sad  
 
Sorry I don't have anything to offer to you, but just wanted to tell you that after reading what you've gone through, it puts the kip 7 I just had into perspective.
 
Thank you...
mel
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