Hi Janet...

Thanks for checking in, give us an update on your husbands journey when you have a chance.

Seth is doing OK so far, thanks for asking.

He made at least 4 trips to the pharmacy yesterday and didn't complain once (which is unusual since he typically complains even if he isn't running around spending money on expensive things for me), just kidding, he has been quite the trooper.

I am grateful and lucky to have him to help me through this.

Where in Cleaveland is your husband getting treatment..?

Danny, hi. Sorry I didn't end up in Houston, I was looking forward to hanging out!

As far as the neuropathy, the Dr today again went through the possible side-effects of the Chemo, which all sound reasonable. The biggest concerns for long term effects are neuropathy, and hearing loss.

I have an audiologist's appointment on Thursday to get a baseline for future comparrison.

I am also going to see the Opthomolgist and Dentists on Thursday also.

Then Fri, I have the Setup for Rads.

In the meantime we are finalzing our apartment search, trying to narrow it down...I think we are going to go for convienence to Sloan, vs. extra nice.

I figure a few weeks in to it, I'll be greatful the apt is less than 50 feet from the entrance to Sloan :-)

Barb! Congrats!!

Wasn't today your last day!?!?

Thanks for sending me the good wishes!

Hi Michael --

Barry had his PEG yesterday and Hopkins Dr. specifically said -- liquid diet only for 12 hours and then eat carefully for a day -- so guess he knew something -- anyway Barry's incision hurt last night (like you said, the muscles) -- took Percoset 3x and had problems finding a comfortable sleeping position. But this am it only hurt a bit, took one painkiller before leaving for the hospital for his tomo walk-through, and none after that. It hurts if he presses around it, but all day he's been able to eat normally. Just burping more than normal.

We were really happy about this, some folks have had nausea problems after the g-tube was inserted.Today, the chemo nurse showed us how to flush the tube once a day and how to clean the dressing around it.

The walk-through (where they check the plan and re-scan to compare with simulation) took a long time which was a real pain as he is somewhat claustrophobic and being in the mask for so long started to get to him. They recommended that he bring some CDs tomorrow to play to distract him.

The fact he's gained 16 pounds since the simulation (sort of a record, he attributes to 3 weeks of cashew nuts and high-calorie smoothies) meant they had to re-calculate some things but they are very pleased he gained weight as he was thin before ("ideal weight" but not for entering chemoradiation therapy!)

Barry has his first real radiation treatment tomorrow and is getting amiphostine -- hoping he can handle it -- has serious anti-nausea meds to take beforehand. Chemo (carboplatin) Thursday, first of 6 treatments.

Good luck Michael, hope you can enjoy some of New York and that the weather moderates! This has been one h*** of a summer in the east for heat and humidity...

Best, Gail

There are many things I read on this forum that leave me "scratching my brain". Some of the posts above[along with others about PEGs] to name one. John never got the choice of if or when to have a PEG. It was inserted during his tumor surgery which seems[to me]to be the ideal time. The 1st 3 days after surgery, he was on morphine drips "on demand" and that controlled most of his pain. His memory of those 1st few days is that the catheter and the "boots" on his feet to increase circulation to his legs were the things that bothered him the most. When we went home, the peg was and still is an irritant, but not another surgery to face during the rest of treatment. It's really interesting[mind boggling] how many different approaches are out there.

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!