Forums

From Leo (phiber) tri-owner of A Band of Brothers CC, who is battling cancer

• mgbirish 4,019 Posts

  Mon, Apr 28 2014 8:14 PM

  From Brother Leo today:

  Long day in homesville today brothers.  LOts of good, little bad but my brothers need to know the "changes"

  1.  We will NOT do a CT scan tomorrow.  Reason?  The injections that are required for this type of scan are potentially damaging to the kidneys and with my recent bout of diabetes, the Doctors say we need to wait a week to do the scan.  Good thing, bad thing?  In my opinion, very good thing, I need to get some strength back before getting out that much.

  2.  Thursday's #7 Infusion - Amanda says it may be a full blown infusion including Oxilaplatin.  Definitely not good.  She says it all depends on my bloodwork and glucose levels.  She says, also, that it may not be a full blown infusion but only a partial 5fu (definitely a good thing).  Blood chemistry will tell it all.  She is not happy with my weight loss (27 pounds since Inf#5) BUT she says it is NOT cancer related but rather a result of the incredibly high glucose.  Now, what that means...it means that most of the weight loss is muscular and the re-establishment of that muscular mass will take some work and dietary adjustments to compensate and rebuild the strength.

  3.  My vision..The doctor says that we can do NOTHING until my sugar is stabilized and when it does, the vision will auto correct.....that's pretty cool, but it will take 4 weeks or more.

  4.  Doctor says I can have a Mich light!!!  Or any other light... but only one.

  5.  Best news of all, God is my pilot and all my friends are co pilots so all I have to do is just sit here, love God and my Friends, and I will be just fine.

   

  Oh, one last thing.   I have the best wife in the world and I love her dearly for her undying dedication and the strength she has shown through all this.  She's still my bride and my best friend after all these years and it's all her fault.  Thank you God for her!

• newcastleb 1,813 Posts

  Mon, Apr 28 2014 11:21 PM

  mgbirish:

   Best news of all, God is my pilot and all my friends are co pilots so all I have to do is just sit here, love God and my Friends, and I will be just fine.

  Oh, one last thing.   I have the best wife in the world and I love her dearly for her undying dedication and the strength she has shown through all this.  She's still my bride and my best friend after all these years and it's all her fault.  Thank you God for her!

   

  Well said....don't ever loose sight of those two great statements; remember your pilot is never off duty and hang on in there.

  Thomas

   

• mgbirish 4,019 Posts

  Tue, May 6 2014 9:46 PM

  Latest from brother Leo (phiber):

  "Got R Done"  Hopefully I will get a call from Mandy in a day or so saying that everything looks cool and we can get on a maintenance program instead of infusions....

  I feel good about it....probably going to take a day or two the first of the week and go up into the mountains to do some long needed brookie hunting and serious soul searching.  Had a few tempting offers from some of the guys in the FFC and from my brother so will probably do that depending on what that good Doc has to say and how my legs progress.  Right now they feel like rubber, 10 minutes from now they will be fine then it goes back to the rubber thing real quick.

  See you guys later on tonight probably.  Hopefully, no grandkids or visitors tonight, wife says I am in a pissy mood after driving in the Nashville traffic and waiting on "idiots" to get out of my way....'magine that!!!  I love getting old, people make fun of us for getting in these moods but the tolerate it a lot more than they used to

• mgbirish 4,019 Posts

  Thu, May 8 2014 3:23 PM

  From Brother Leo (phiber) today!

  First off, thanks to all of you for all the thoughts and prayers over the past 4 months.  They are absolutely priceless and appreciated.

  When one gets diagnosed with Stage IV Esophogeal Adenocarcenoma that has metastasized to the liver, the prognosis isn't really good and it can be deafening to the mind as the mind thinks and evaluates all of the unknowns and possibilities that the future holds.  I thank God for giving me the patience to go through all of this.

  We just did the second CT Scan on Tuesday and my doctor just called me and told me that the results were much, much better than she expected them to be and gave me a few numbers (which I had to look up to translate to inches....).  The primary tumor in the Esophagus was  3.7 cm when we started the Chemo in February...thats nearly an inch and a half in diameter...pretty big to be in the Esophagus.  It is now right at .7 which means it shrunk 81% roughly.  The two spots on my Liver experienced about the same amount of shrink.  This is some of the best news I have had since Dec 30th, relative to my health.  I am not sure what comes next, but I think it will mean a maintenance program to keep the cancer under control.

  I wanted to share that with all of you and to tell you how much all the thoughts and prayers have meant to me and to my family.  Each of you Brothers and Sisters are important to me and now, with some HUGE positive feedback from the best Doctor in the world, I hope to get back onto the game gradually as I come off the bad chemo,  and to be more involved in playing and being a part of club activities again.

• newcastleb 1,813 Posts

  Fri, May 9 2014 10:17 AM

  Having read that my Friday just got a whole lot better  :))

  Stay strong

  Thomas

• Dougie4042 4,410 Posts

  Wed, May 14 2014 3:21 AM

  Hang in there!  Stay strong.  :-)

• allenmiller 34 Posts

  Wed, May 14 2014 7:34 AM

  God bless you Leo. MY name is richard I been battling esophageal cancer for almost two years i had radiation chemotherapy  and had my operation on july 16 2012 it was a hard operation they cut my esophagus out and pulled my stomach up to make another one. you got to remember to eat very small amounts when you eat and you might need to eat 4 or 5 times a day I will keep you in my prayers if I can help answer any kind of questions i will try to help any way i can. 

   

• mgbirish 4,019 Posts

  Thu, Jun 5 2014 8:43 PM

  From Leo today:

  Had a nice long chat with the doctor today, mostly about 3 "small" issues then got a nice hot blast of Oxaliplatin, then the 5FU.

  I asked her about the CT scan, again, because I wanted her clarification of the findings on the liver and the two spots I have on the liver.  This is what the report says "Stable right inferior hepatic mass with imaging features consistent with a cavernous hemangioma." (now I know why it takes so long to educate a doctor, they have to learn all those 50 cent words and what they mean)  This is what she said.  "Don't worry about those.  Basically what that means is that the cavernous hemangioma is a benign mess of blood vessels that are basically harmless and they will go away with a little more time.  If most people were to be checked for them they would find the same thing in various parts of their body."

  So then I asked her about the treatments from here on out.  She said "you will be on this folfox as long as you live or if and when it quits working on you barring some miracle of remission" .

  There was one more sentence in my records that communicated to me the importance of what all is being done and what has happened.  This goes back to the first CT scan on the doctors analysis on Jan 27th.  This is what it says.   The patient DOES NOT HAVE a limited life expectancy (likely to be less than 6 months)  and as you can imagine, that is pretty scary.  This is what she said.  "Thats the problem with reading your medical records and not looking at the date of the record.  That was the prognosis before you started Chemo and from what the CT scan and the biopsy showed, that was normal.  Now your prognosis is that you still have the adenocarcanoma, and it is typically a terminal disease but you are in partial remission with a propensity of doing even better.  Thats why I want to use the oxaliplatin if you are ok with it.  My only comment was 'GIDDYUP".

  Got there at 8:00 am, had five appointments including 2.5 hours of infusion, and out of there by 1:15.

  Now let's just see how bad this Oxaliplatin really thinks it is!  I am ready to kick some Oxy butt!!

  Love you guys

  LD

   

• frappefort 3,994 Posts

  Fri, Jun 6 2014 4:20 PM

  Keep  fighting  ,  I am still  pulling with you .

• mgbirish 4,019 Posts

  Mon, Jul 7 2014 8:03 PM

  From phiber (Leo) round 10: sent 7-3-14

  I have tried to send this 3 times.  4th ain't charm but it better work or I am writing to Obama to make an executive order...

  long ass day to day brothers...

  first off, they didn't get the port access aligned properly the first time and after about 20 minutes, my left pectoral was about a 44d.  It was pumped full of anti nausea and steroids.  Huge problem, the port had shifted.  They sent me to x-ray where a surgeon removes the port access and used the graphics of the x-ray to relocate it and I watched the whole thing.  They didn't deaden anything either so I am pretty sure Ieft indention's on the gurney where I gripped it so hard.  He had to stick me 5 times to get it in the right place and that hurt like hell.  The nurse kept saying I know that hurts and I am so sorry, the doctor did too, and one of his assistants said no pain no gain and every one laughed but that was when he got it in the right place.

  #10 was a full hot shot and is running as we speak.  On Wednesday of next week, at 5 pm we shoot the CT scan so by Friday, I should know what to expect next.

  Amanda said we are not going to take off that long, maybe 2 months max because if she gets a clean scan this time, she doesn't want it to come back and that way we can stay away from the Oxaliplatin most of the time.  She told me I shouldn't be surprised by the issues with the port today, she said that I am overall the exception to the rule on most everything so the port should not be excluded.