#52289 10-10-2007 09:18 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) |  Platinum Member (200+ posts)
Joined: Jul 2005 Posts: 207 | 1. Depends on individual. For me, it was once per day as long as I took my stool softener. If I forgot, i was very miserable.
2. Any time I was over 100.
3. XClair or BioFine
4. I went downhill from the first week on. I was not able to eat from October 12th to January 29th. Some are differrent, but that was my experience.
Also, I took my nausea meds as a precautionary measure and extras if I needed. I found this really helped.
Hope this helps,
Steve Daib
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#52290 10-12-2007 10:00 AM | Joined: Aug 2007 Posts: 36 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 36 | Thanks guys,
Sorry I've been gone...He went to ER on Mon and tues and has been/is hospitalized with serious case of thrush and has the super mucous/saliva. His PEG is nasty too but not infected (hole is larger than tube,leaks, needs to be redressed every 2 hours.)
Then all these problems started under hospitalization, too many to tell and little but I've been with him since tues and it's all unnerving. Just got home after 3 hour drive..Mom's with him now. JAM I do want to get him a suction machine (totally awesome aren't they?) but I will wait to see because I think the VA may have one coming to us.
Tired. I've never seen him so out of it...Worse part of all of this is how quickly the changes come.
Sorry not to respond earlier but don't get online much when I'm in Iowa City.
Love and thanks,
Mariam
Caregiver to father,Frank -Tonsil SCC spread to base of tongue 2 lymph, T2N2M0 stage 4a, IMRT 35x, Erbitux 8x-stopped after 5 due to thrush infection and strp infection in PEG,diag Aug 07 tx concluded Nov 8 07 PEG issues Inpatient Oct 8th-Nov 8th.
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#52291 10-12-2007 11:14 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Mariam, I know you ae tired also- hope yu can get some rest. It is a long haul. Let me know if you hae any problems getting the suction machine. Amy in the Ozarks
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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#52292 10-22-2007 03:03 PM | Joined: Aug 2007 Posts: 36 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 36 | Update.
We are a week behind. First he was hospitalized with thrush and suction machine, then due to a PEG tube that probably wasn't inserted correctly and crappy hospital care on a wing I have since found out is notoriously bad - He got Cellulitus around the PEG site and most of his belly. He went to intensive for a while and then hospitalized on a good clean surgical floor.
The only good part is that they switched him from Morphine to Fentanyl sp? and he is at least acting like himself. He has not complained once even though he can't even eat through his tube or talk or drink water etc.
The worst part of all of this (for me) is that he spiralled down and his system went completely out of control while I was "managing" everything and totally present. Makes me super angry and feel redundant.
Anyway, he had to stop all cancer treatment for one week, but continued radiation today...I think too early but I'm not there this time of week and I'm not a Doctor now am I?
It seems like everything that could go wrong has and I'm not even worried about cancer anymore...Just whether so and so washed their hands, pneumonia, strep, staph, blood clots and BABY UNIVERSITY DOCTORS PRACTICING ON MY DAD.
Spit. Spit. Spit.
PS JAM they gave us a suction machine, but thank you so much for offering it
Caregiver to father,Frank -Tonsil SCC spread to base of tongue 2 lymph, T2N2M0 stage 4a, IMRT 35x, Erbitux 8x-stopped after 5 due to thrush infection and strp infection in PEG,diag Aug 07 tx concluded Nov 8 07 PEG issues Inpatient Oct 8th-Nov 8th.
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#52293 10-22-2007 04:16 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | oh, Mariam...you two have been through so much! I'm sorry to hear your news~Keep us posted as to his progress..things HAVE to get better!
Thinking of you!
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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#52294 10-22-2007 06:25 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Chin up Mariam things can only get better .
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#52295 10-23-2007 05:03 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 | Marian, hang in! Easy to say-hard to do-we know!
Glad to know he got a suction machine. You can challange the Baby Docs by asking alot of questions and insisting on answers- make them squirm- it will further their learning experience.
Wishing you well. Amy in the Ozarks
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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