#45246 07-27-2005 01:12 PM | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | hey Barry and Gail,
i was treated at hopkins in 2001, so your post bring back vivid memories for me. barry's schedule is almost the same as mine was. i started the day after Labor Day. i thought it was a fine time of year for treatment because i had the deep winter for sleeping and recovering, then up and about as spring came.
best wishes to you both. you might want to get some books to read for the waiting rooms. my mother sent me a joke book that worked real well because i could easily pick it up and put it down.
if i can be of any specific help with jhu stuff, send me an email.
cu,
larryb
larrybliven at yahoo dot com
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
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#45247 07-30-2005 04:11 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi Larry --
Thanks for the upbeat message -- we are pretty well ready now (have to be since we are off to Maine on Tuesday, back Saturday and Barry gets his peg on Monday). I also have a very funny book that I gave my mom when she was in NIH for 12 weeks (leukemia trial) -- Dave Barry -- it's the only thing that made her laugh -- so hope Barry likes it as well.
The oncology nurse suggested a portable DVD player as well (with earbuds) -- at Hopkins it is quite a wait for chemo (probably is everywhere) as they have to check bloods, then release script to pharmacy, mix up chemo and then re-check independently, before send up to infusion area -- and then the wait while the drug is administered. They joked and said they will wait until you've finished the end of your movie <gr>,
Will send private ms. re who your docs were, etc.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#45248 07-30-2005 09:59 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Gail, I hope you and Barry enjoy the vacation before the peg insert. You both sound like you're as prepared as you can be otherwise. A cancer survivor friend of mine said to me, before I started chemo/rad, "the worst things you prepare otr probably won't happen and there will probably be some unpleasant things you don't prepare for that does happen so just accept that". It was good advice. Take care.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#45249 07-30-2005 04:19 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Dear Gail and Barry, Wishing you both as smooth sailing as possible for the next few months.Your love for each other stands out strongly in your posts. God Bless. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#45250 08-07-2005 02:56 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi all --
We are back from Maine -- had a great 5 days visting friends, went whale-watching (and saw some!), bird-watching, hit the beach (Barry with SPF 45 sunburn block), ate lobstahs, ate more lobstahs, read books, listened to Salvation Army band every night at Old Orchard Beach pavillion down the street from our friend's cottage, read more books, took walks, etc. In other words, kicked back and tried to forget (for a few days) cancer...
Barry goes in tomorrow to get his fluoride trays fitted (he will use for radiation shields as well) and also, to get the peg inserted (ugh!). We are a bit ambivalent about the latter, obviously it is vitally important for many to let them get through treatment but also allows one to avoid the pain of swallowing and later can lead to serious swallowing issues. As his ENT said (she's been through HNC treatment herself so knows) -- you have to try to keep swallowing no matter how much it hurts -- Barry says if she could do it, no peg in those days, old-type radiation, really massive mouth sores, Barry hopes he can as well. We shall see...
Will post updates as things progress...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#45251 08-07-2005 04:37 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Gail, I'm glad Barry has such a positive attitude!
I just hope he isn't setting himself up for a "pride goeth before a fall" issue. It reminds
me of stories of "momma 1" whose baby just popped out after 10 min. of labor and "momma 2" who pushed for 24 hrs. to deliver. You just never know! Your vacation and the lobstahs have me drooling. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#45252 08-08-2005 10:21 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi --
Well, back from Hopkins and Barry now has his PEG tube inserted -- not too happy at the moment as it hurts (which he expected) but otherwise OK. Taking Percoset. He is not using the tube now of course, and hopefully not for some time, but we decided it was better to get it in rather than wait until he was losing weight and was feeling bad due to the cumulative effects of the chemoradiation.
He also had to have new fluoride trays made -- rather funny, sort of embarrassing for Hopkins, his were done, sitting on the counter for him and disappeared ("misplaced") -- the nurse and I hoped that some other "Cooper" isn't walking around wondering why his trays don't fit. Anyway the new ones will be ready for his radiation walk-through tomorrow. We will also meet with our chemo nurse to go over tube care, flushing, dressing change etc.
Another long day -- and so it begins...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#45253 08-08-2005 10:31 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Gail
Even if he isn't using his PEG yet, don't forget to keep flushing it with sterile water...
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#45254 08-08-2005 11:32 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Gail
I just wanted to wish you and Barry the very best in your forthcoming battle .
He is lucky to have a wife who is so "on the ball" proactive with his care protocol.
Just remember , you are going to be stressed tired and really scared .
Take all the help you are offered and try to have some quiet time on your own to re-charge the batteries.
Many positive vibes coming your way.
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#45255 08-08-2005 12:24 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Gail, you and Barry are in my thoughts and prayers. God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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