Michael-after they rule out that there is no infection-they say the Temperature spikes are common. Dad's temp is at bay-His treatment has been delayed for a week (due to his little episode and mouth sores.) He is being kept here so we can ease him into the peg. It's great, I'm emailing from his room. His labs are good. He will be discharged Friday for readmission Monday am. The treatment is beginning to take a large toll on his energy-that is to be expected.

Hi,

At Hopkins if they are not doing surgery (which Barry did not have at Hopkins) and the patient is getting chemoradiation OR bilateral neck/throat radiation, they really push for a gastric tube. And -- they want it done before treatment starts. However some people resist and end up having it inserted when they start to have eating/swallowing problems. This is not ideal but they cannot force folks to have surgery! It is the patient's choice...

Actually, it is done under "twilight" sleep -- the same as when you have a colonoscopy, and not with general anesthesia. Barry doesn't recall any of the actual surgery, but he was semi-awake for the endoscopic tube into his stomach -- which he said was the worst part!

No real pain today but it is tender if you press around the insertion point, and if he does something that involves contracting his abs.

Gail

Gail, I wish I had been told what they told Barry

In any case, I spent most of the day today in the ER.

My fever spiked at 102 and I figured better safe than sorry.

Serveral hours later, it was confirmed that the Xrays all looked normal, the fever had subsided, urinalysis and blood labs ALL normal, and pain/spasms reduced and finally let go to have dinner!

Anyway, I feel better still now, and finished cleaning the incision site and changing the gauze.

I think I got dehyrdated too from fasting for the surgery first, then not drinking due to bloating after.

If anyone else has this done, insist on IV fluids to keep you hydrated, even if it means a cath for urination.

Anyway, what's really starting to bug me now, is the thing I posted about a couple of days ago:

(Of course, you know me, I've always got to have something to worry about:-)

[quote] I "feel" like the cancer's returned to the right tonsil tumor bed !!

I can FEEL something in there, especially when swallowing, like something's stuck in my throat (how post-nasal-drip feels a bit), but it never goes comnpletely away...sometimes it's more noticable than others...

I can kinda feel like it would cause me to gag sometimes if I let it, and maybe make's my voice sound a little "gargle-ie", like I need to blow my nose sounding...

[/quote]So, today, it is now more pronounced than ever.

It seems to actually already be affecting my speech and I feel like it has grown in the last 4 days.

What do I do?

If it has grown back so soon, what does that mean for my prognosis? Bleaker still?

I am hoping it is only scar tissue, etc, but without another biopsy/surgery, how do we know?

Thanks for any advice, or information.

Michael, you gotta give yourself a chance to heal. You will not all of a sudden wake up tomorrow and be over all you have been through. But you can worry yourself into an early demise Try to concentrate on living-1 day at a time. Amy

Amy, isn't that a Day Time Drama TV show??? Or wait, a multi-vitamin???

Seriously, I've always had trouble 'living in the moment' and that's one thing this disease (and even more so it's treatments) forces one to do.

Someone told me early on, that I will have to be patient, and I'm trying.

The fear that I am having an agressive recurrance, just 42 days out of surgery that supposedly had clear margins, is captivating.

I was able to get a same day appt today with the ENT between my hearing test, new EKG, and dental followup, so I'll ask him to scope it and see what he thinks.

Meanwhile, I'll try to assume it's just my body's rapid and effective healing taking place! (It does itch a tiny bit, so I'm thinking that's in my favor:)

I can certainly understand the fear, Michael, but I'm keeping my fingers crossed for you that that's all it is at this point. I had a similar fear right before my chemo/rad treatment started and actually I wodnered the same thing you did--wouldn't the CT they do for the radiation mapping show somehting like that and wouldn't someone say something, if something like that was there. I ended up assuming they would, and never asked for any special checkup then, but maybe I was wrong. Did you ever ask that and get an answer?

Hi Nellie:

Good to hear from you again!

I didn't ask, I saw the Dr review the MRI results (the oncologist) (Dr Pf...)

He kinda frowned and didn't volunteer anything, and I was afraid to ask specifically, although I think I brought up the subject of "feeling something".

He said something about, "...doesn't really matter since the tx plan is the same either way..."

Who knows...I guess it doesn't help to know if it is a recurrance, since it only hurts my odds, and doesn't affect who we approach it.

The only factor that makes an impact is if the tumor has returned I'd like it excised so that I can have an EVA test done on it.

Stanford ruined the tissue sample they removed during my surgery and they couldn't test it!

Hi Michael,

Was thinking about you as I was driving back from Saratoga and hoping everything was going well for you. I don't like the sound of 'this thing' in your throat nor do I like the drs answer. I think I would have pushed him for specifics, unless you really don't want to know. I forget, did they completely remove your tonsils when you had the surgery or just the tumor?

I can sympathize with you over the pain from the gas. While I never had a Peg, I had a tubal years ago and the hospital brought me a huge dish of pasta right after I got out of recovery which I wolfed down since I hadn't eaten for more than 24 hours. An hour later I was in so much pain I thought I was having a heart attack. Lasted for about 4 hours until I got up to go to the bathroom, got dizzy, made it to the bathroom with nurses help and then promptly passed out. That cleared the stomach and intestines and no more pain. No thanks, never again.

Take care,
Eileen

Boy Michael, I am sorry that you went through all that -- the tube has been pretty smooth sailing for Barry except for about 5 seconds ago when our puppy managed to jump up and hit him *right* on the incision area with her little hard paw! He went off hunched over like Quasimodo, saying weakly, "I don't want to play with you any more right now...."

He had his first chemo today -- I will post more on our "in treatment" site (new topic we're starting today as he is no longer "about to start...")

Regarding your feeling that there may be "something there" -- we asked our medical onc about the rationale for not removing ("debulking") some of Barry's base of tongue tumor before the chemoradiation -- it is surficial, that is, it has not invaded into the tongue muscle -- and she said about what your oncologist said, the radiation/chemo treatment plan is designed to take care of all the cancer, that further surgery would not give any better result.

Gail

When does your radiation tx start? I had a biopsy done on the back of my tonge and i swear he took half of the back of my tounge off by the feel of it but a week or so after that i could feel something there too and was told it was swelling a lil from healing.But when i started tx it was very profound till almost 2 months past my tx stop date from the tissue scaring and just from the destruction on the site from radiation. good news is that now i feel nothing there and my next apt. with my ent where i get scoped for the first time is on the 18th of this month.
Good Luck to you on your journy to being cancwer free

Bob Grey