Long time reader/lurker now member with recurrence

wbcgaruss

 

Hello I have always been a lurker in the background reading the posts during my bout with throat cancer. Found in late 2012 I started treatment in January 2013.

Probably stage 3 or 4 squamous cell because scope showed my throat was pretty well almost closed but the only indication was a sore throat that did not respond in a permanent way to antibiotics.

I had my treatment at Lancaster General Hospital in Lancaster, PA and Rads and chemotherapy at the Ann Barshinger Cancer Center on Harrisburg Pike Lancaster, PA.

I had a port and feeding tube—The works.

Spent 5 days in the hospital twice on 24 hour a day intravenous chemotherapy with a period in between to get my blood count back up.

Received Cisplatin, Taxotere, and infusional 5 Fluorouracil.

This was to shrink the tumor, they were afraid if they did a regular regimen and used radiation right away it would swell the tumor before it shrank cutting of my breathing and requiring a trachea which they wanted to avoid because it was another pathway for infection and another item needing caring I think.

After that I started the standard regimen of 35 radiation treatments with chemotherapy beginning, middle, and at the end. No Surgery.

That is my history a bit and I feel so familiar with the group because I read every day 2013 and probably up to 2015 or more and come back and visit now and then this place is full of information and great people.

I remember CivilMatt, Skiffin, Phrannie, Patricke, Hondo, Donfoo, Jackflash22, wmc-bill, MrsBD, Grandmax4 etc. and have seen some pass that didn’t beat the monster but put up a heck of a fight.

People like Kteacher, Hondo, Longtermsurvivor, Hawvet etc. hope I have not made any mistakes naming anyone here who is still around out of respect.

Also remember Skiffin’s many struggles especially with healing and his whipple procedure and reading the many folks struggles on here much worse than mine humbles me.

Enjoy Matt’s and others attitude on this forum helpful but informative and relaxed with a bit of humor mixed in.

I still go to our H&N local support group every other month at Ann Barshinger Cancer Center and give handouts to folks directing them to this web site and forum.

 

Clear & Clean with all scans up to this point but now just a month shy of when I finished treatment I ended up with a small sore spot on the bottom of my tongue that wouldn’t go away and my ENT did a biopsy and it turns out to be squamous cell again.

So with the recurrence I decided to sign up this time and make it official and a part of the CSN family.

Not real happy about recurrence but others have gone through repeat Cancers on here.

Good news I guess is ENT Doctor feels he can probably get it all with surgery and maybe

no chemo or rads since it is small.

First thing though is I have to get a PET scan to make sure it is nowhere else in my body

just this spot.

So they are setting up a pet scan for this coming Thursday morning May 31 and we go from there.

Thanks for your prayers.

 

Sorry for such a long Post hope you are still awake.

swopoe

Glad to finally meet you,

Glad to finally meet you, although I wish it was under different circumstances! I am hoping it is just this one small spot and can be taken care of with surgery.  My husband was diagnosed with tongue cancer in October 2015, and we are plugging along as well as can be. 

Small world- My husband and I went to college in Lancaster. We will be back there in 2 weeks on June 7th for reunion. I will send you good thoughts from far away now and then from much closer in June.

wbcgaruss

Thanks for info

Thanks for the info it is good to hear from someone in similar situation that is doing well.

patricke

SCAN

I'm sorry to hear that you are going another round with the Beast, and hope that your doc is on the money with one and done to win.  I have a suggestion to consider and possibly run by your doc in regard to scans. I believe, although I could be mistaken, but I am sure that I am not, an eyes to thighs PET/CT combined scan is the gold/platinum standard for getting the most accurate images of what is shak'in inside.  I've been getting them forever for my periodic follow-ups, so I thought that I would pass on my experience/information in case you might be interested in having a chat with your doc about the pros and cons of the scan.  I send you an abundance of my top shelf positive energy and wishes that your treatment is successful, and uneventful.  Keep It Mov'in Forward.

Patrick    

wbcgaruss

Thanks for suggestion & info

Patrick Thanks for suggestion & info on your knowledge of scans.

I did not know there was a combined way to do the scans or a combination of scans that was done.

I was under the impression that a pet scan alone was pretty much the top shelf and covered everything.

I will call my ENT and run this by them-thanks for your input.

 

wbcgaruss

Scan

Patrick checked with my ENT about the pet scan I am getting.

I and many others just call them a P.E.T. scan his secretary told me, but she

verified that i am getting exactly what you said is the gold standard eyes to thighs PET/CT combined scan.

I also looked at my order papers and that is what the order calls for.

Thanks for being a details guy.

patricke

wbcgaruss said:

Scan

Patrick checked with my ENT about the pet scan I am getting.

I and many others just call them a P.E.T. scan his secretary told me, but she

verified that i am getting exactly what you said is the gold standard eyes to thighs PET/CT combined scan.

I also looked at my order papers and that is what the order calls for.

Thanks for being a details guy.

Excellent

Alrighty then, that's excellent news, I am very happy to hear it.  I wish an excellent, as well, NED outcome from your scan.  Keep It Mov'in Forward! 

Patrick

donfoo

wow

Welcome, you have been a long time lurker. So sorry to hear about the recurrence. That sucks so much because statistically, you are way beyond the chance of recurrence, such a bummer. Treatment for recurrence is more variable than the first time due to all the added factors of previous radiation and such that affect what can be done this time.

As you know since you have followed along, many get through recurrence treatments and are doing well. At least you know the drill, so hopefully it won't be as daunting as the first time. Best wishes for a speedy treatment and recovery. Don

wbcgaruss

Thanks Don

For your support.

Yes I thought I was in the clear but the beast is back.

But I,m ready to deal with him come what may.Yes from reading here there have been many that have had to deal with a recurrence

of one thing or another large or small and that will be helpful.

And there is a lot of knowledge on here.

I look up to you and others who look forward, try to keep the best attitude and deal with what's at hand.

Thanks again.

CivilMatt

wbcgarusss,

wbcgarusss,

Let’s hope I got this all correct..  I had a list with only a few things to do.  And I had your membership card.

Matt

 

 

wbcgaruss

Thanks CivilMatt

It can't get any more official than when you have a card like that to carry.

Thanks for making it official-I think. Also I always looked forward to the CivilMatt

humor and slant on things as sometimes we can forget to laugh a little bit

even in the most serious of times we need a little fun.

Matt you also always seemed to have a memory for your knowledge and experiences you had

and presented it in a helpful easy to understand way that helped many others on this forum.

Take care.

wbcgaruss

Oh--and One More thing

I just realized I forgot to brush my chicken's teeth.

Thank goodness-for the reminder-nuthin worse than a "Mad Chicken"