| Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | You folks are awesome. We also have been advised by Richard's dietician that he needs to take in 2500 calories. Christine, good wisdom, and I will encourage him to try no matter what, even when he does not feel up to it. He has never had a problem with drinking more than enough water, currently is taking in 2 1/2 large bottles of SMART water per day. He has lost about 6 pounds since treatment has started, currently at 219, we will try to keep that slippery slope of weight loss down to a minimum. You folks are amazingly supportive to strangers (what did our Moms tell us about "talking" to strangers - in this forum, that truism does not hold water). I am the computer geek and caregiver. Richard does not do computers, too bad, he is missing out on some wonderful internet fellowship!! Thank you! Barbara (wife and caregiver of Richard)
Last edited by bjlral; 07-09-2013 11:20 AM.
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | If your husband is not computer savvy, print out some things for him to read. If he is they type who wouldnt want to read it then you can 'accidently' leave it lying some place where he will be sure to 'find' it and read it. Of course it would be an accident that you left it lying around. LOL! Give it a try, let me know how you make out.
I dont know what SMART water is. I do know that he needs plain old H2O, just regular water (bottled or tap is fine). I was told iced tea, coffee, sodas, etc do not count that it must be plain old regular water. I know 2500 calories sounds like a lot but in reality its the bare minimum. He must take in enough every single day, trying isnt enough he MUST do it. I was one who learned the hard way, after becoming dehydrated and malnourished landed me in the hospital a couple times, I cant warn others enough about this. If he is dropping weight while he is taking in 2500 calories, then he needs alot more, maybe 3000 or 3500. His body is burning up calories at a tremendous pace fighting the cancer and the effects of treatment. While I was recovering many days a week I would drink very fattening 2000-3000 calorie chocolate peanut butter milkshakes. Some days I would drink 2 or 3 of them and I never gained an ounce. Think of it like a professional athlete who required 7000 calories daily during training. What your husband closely, he may not always be honest with telling you what he took in. Ive seen it many times before on the forum, its easier to just go to sleep then to get up and make something to eat or drink.
Hang in there. It gets difficult but it can be done.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Coffee and tea are diuretics and are not absorbed as fully as plain water. I think soda would count if it did not contain caffeine or whatever makes it diuretic. But plain water and fructose seem like it should count.
There is a new class of waters known as smart water that have high PH and electrolytes that are supposed to rid the free radicals better.
i have no clue if that is the case but I can attest that they are far more drinkable to me than ordinary bottled water. Maybe the high PH has a lot more buffering and that makes the water taste "smoother".
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | [quote=bjlral]You folks are amazingly supportive to strangers[/quote] Strangers - No!
We are all connected, we are a big family. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Jul 2013 Posts: 22 Member | Member Joined: Jul 2013 Posts: 22 | Eshwar said it perfectly! Though I only joined the forums a few days ago, I already feel so connected to everyone. You look at the media and see so much negativity and just horrible things that people do, and sometimes I personally can't help but feel the world is just a horrible place to be. But there are people and moments that just so heavily outweigh any terrible thing that happens. Finding this forum and all of these amazing people really restores any and all faith I've ever lost in humanity. I didn't mean for my statement to sound morbid or like I have a horrible view of the world, I've just spent the greater part of my life helping people through so many different problems it seems something has always been wrong. I'm very happy to have found so many wonderful people, and I'm proud to be a part of this family. No matter where my life takes me, I plan on staying connected and involved here as much as I can.
Josh, 24, don't smoke/drink
5/29/13 Biopsy 6/3/13 DX stage 3 HPV- SCC at BOT 6/14/13 Hemiglossectomy, neck dissection, second surgery to add stitches 6/21/13 PEG 6/23/13 Incision opened to drain infection 6/26/13 Discharged from hospital 7/22/13 IMRT starts
| | | | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Am wondering about uploading pictures. I noticed about a week ago a photo. Is there a "step by step" to do this? And is it okay to do this? Barbara CG of Richard
Last edited by ChristineB; 07-18-2013 06:42 PM.
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Please do not add photos. Im sorry but this site is not the place to share that type of thing. Photos slow down page loading and take a great amount of space so they are discouraged.
If you want to share photos, you can do so thru emails or on other websites.
Last edited by ChristineB; 07-18-2013 06:57 PM.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Got it. Thanks for your response, Christine.
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I drink bottled water. Some I like better than others, mostly spring water, and others that are just purified water taste different, but could be my mental perception. Although our tap water is amongst the best, and say its better than most bottled water.
I drank smart water, comes in a variety of lightly flavors, added vitamins. After treatment my taste changed, don't like the fake coloring, flavors, so I rarely drink them. I doubt they do much health wise, and more gimmicky.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | I have had a reverse osmosis drinking water system since the 80's. I drink a lot and it isn't cost effective to buy the stuff! When they told me how much I needed to take in during treatment I smiled and asked why I had to cut back. Our water stinks literally like fungus and tastes horrible even before treatment. Then they super chlorinate it to get the zebra muscles out of the supply side. I used to take 2 half gallon jugs to work every day. I was told that is why I have skin as soft as a baby's rear! Just believe me, please. O.o
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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