#33674 09-03-2004 07:55 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Ed, You're welcome! :p Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#33675 09-03-2004 08:06 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | By the way, I just used Senekot-S as an example. You're right, it isn't harsh like laxatives and some other remedies. But even the harsher remedies need to be taken daily in most cases. Like many others have said, if you don't keep on top of it, the constipation can be brutal. And it also affects so many other things. When Heather got in bad shape, the constipation affected her digestion in general.
Of course, she had mega-problems with her PEG tube anyway, but when her bowels didn't move, anything that was put in the tube couldn't get through her intestines either. It literally backed up into her stomach. Obviously, her case was more severe than most, but severe constipation is nothing to fool around with. Find a remedy that works and then use it daily. The possible damage from the laxatives is probably less harsh than the damage that can be caused by the constipation.
Rosie
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#33676 09-03-2004 09:18 AM | Joined: Oct 2003 Posts: 89 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2003 Posts: 89 | Hi Nicki, I had radiation in December (but no chemo). Nausea was minor, the soreness to the throat began after a couple of weeks - that seemed to be the hardest part, making it difficult to eat or swallow, so try to "stock up" on calories now if he can with milkshakes, whip cream, etc!
Also fatigue is a major problem. His job now is to fight the cancer, so try to get lots of rest and don't plan on doing much.
Good luck and hope things get better after chemo & radiation! michelle ps Not everyone has trouble with constipation, maybe he will be one of the lucky ones as I was (Sometimes with all this you forget to think about what does go right!)
History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
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#33677 09-03-2004 02:04 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Oh! You all are great! You make me laugh, and I am able to fill Tom in with a smile on my face and a positive attitude. Actually, it makes it so much easier to bring him up to speed on what to expect by reading your posts....instead of things out of a book. I'm keeping copies of these most important 'tips' in our treatment notebook for quick reference! Danny, I'll re-send a photo, because I can never tell if things are delivered. It is a pix of Tom and me with a grandbaby We are focusing our prayers tonight for Don and Karen, and again, you will all be included. We love you! Nicki Guess I'd best go watch my Redskins play! We've got Joe back, and this MIGHT be a really fun season - esp. with Tom's new TV!
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#33678 09-07-2004 06:27 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Nicki,
I am lazy today so help me out. Did Tom create a Prayer Garden...is he a landscaper? If so, I would love to see the Prayer Garden and maybe even honored to (attempt to) duplicate it or copy it.
Thanks, and Go JOE!!
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#33679 09-09-2004 01:43 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Ed, You can be lazy It is sometimes a good thing! Yes, my Thomas is a most talented landscaper who owns a landscape contracting company in the Manassas, VA area. We live on 30 acres, with about 3 of them in lawn/garden status. He's amazing, and even though our house has gotten a bit large for the 2 of us (our 3 children are almost all grown and gone), I can't imagine leaving the little bit of heaven he has created here. The Prayer Garden is still in its infancy, but it is lovely already. I'll grab his digital tomorrow if the weather is nice and get some shots for you 3 down/32 to go on the rad treatments! (Sounds like it's time to for the end zone pass, don't you think?) Gee, that reminds me that the office football pool has begun, and I haven't had the time to see who looks good/bad! Can't win any money that way! Now if I was to make it to Vegas......... I realize everyone from this group who get there is already blessed, but I'll hope they are all LUCKY, too! Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#33680 09-10-2004 02:55 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Nicki, Sorry to be so long in getting to your post. Hurricane Frances and now Ivan are interferring with my plans and schedules. Tom is different than I, but our cancer is very similar so my experience may be similar. The radiation was the hardest of all of the treatments because it was so long and continuous. At first it was a breeze, then difficult, then a pain, then brutal. By the end, my neck was bleeding outside (treated with a with cream-like stuff)and mucous was so thick inside that it caused periodic vomiting. Swallowing was out of the question and my only nutrition and medicine intake was through the peg. Within 3 weeks after rad ended, though, things got better and it has improved weekly since then. My rad doctor told me 2 years before all of the side effects were gone or as close to gone as they were going to be. So be patient, it will get better and better after treatment ends. During treatment, it gets worse and worse, but after treatment it gets better. He will need all of your help and understanding as rad is even worse than the tonsilectomy. You both are in my prayers, as always.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#33681 09-10-2004 05:18 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Apr 2002 Posts: 80 Likes: 1 | Hi Kirk, saw your posting on the Charley, and Frances. My son is a lineman w/City of Wilson and right now is in Gainesville tring to help those people. Don't know if they will pull him back because of Ivan. We really feel bad for those people down in Fl. My son said it would be a long time for everything to be back to normal or anything close. Lots of prayers for everyone.
JOAN
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#33682 09-10-2004 09:44 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Joan, thanks for the prayers. We need all we can get after 3 hurricanes hitting the state in a couple of months, what with Bonnie, Charlie, and Frances, and Ivan on the way. Hopefully, this will be the end of the storms for this year. It's getting very boring.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#33683 10-04-2004 06:04 AM | Joined: May 2004 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2004 Posts: 31 | Nicki!
I'm sorry about the return DX. I can't even imagine what you and he are going through.
I don't know much about anything here, but wanted to say my prayers are with all of you.
Kimberly -friend to paitent mom to 3 boys
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