| Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Nate I'm at work right now, I'll work you up a list I've used to put on all the lean muscle I've put on when I get home. I'll also give you a list of easy supplements to run by your Dr. Love you brother
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Nate Like everyone says stay strong! You have all our positive thoughts rooting for you knowing you can do this. You are young and must stay positive in every way. It's beatable you did it once you can do it again! Big hugs from across the ocean Jayne
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | 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 | Sue, you know I love you! But yes, I would have to edit those words. I thought the same thing yesterday when I got Nate's first text. Nate I would make chocolate peanut butter milkshakes. These arent the healthiest things out there but do get you high calories. I dont measure but I know they have about 2000+ calories per milkshake. All ingredients are approximate. If your taste isnt 100%, you can substitute a cup of milk for a can of Carnation VHC. That would give you even more! 3-4 cups chocolate ice cream (850-1130 calories) 1/4 cup choc syrup 1/2 cup peanut butter (750) 2 scoops dry Carnation powder 2 cups whole milk (300)(add another cup if like a thinner shake) Blend until super smooth. If you are able to eat pudding, I make a great tapioca pudding. That is loaded with calories too! Here are the links to top places... CCC's http://www.oralcancerfoundation.org/resources/cancer_centers.htmBEST CANCER HOSPITALS http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/ 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: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Can I shoot that down the peg Christine? I can't start soft foods for about another week they say, remember last year? Lol, I think I'm already talking too much and don't want to mess up Dr. Ho flap. I'm just upset but am confident in the team, I mean it is MD Anderson telling them what to do. You saw my doctors credentials, I just think he was sooooo sure I would be out of the woods after this. I can say this, and I asked point blank what's my chances? He said were not even there yet, but I don't want to poison you to death. Let's see What MDA says next week. The team did say poorly differentiated does respond best to radiation. But I need to heal first and try my best to keep the crappy cells at bay so they hit the right spots!
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | 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 | Nate, I know you have a feeding tube. Sorry for giving you the shake recipe when it might be something you are unable to have right now. Keep it for down the road when you are able to drink again. It would be a good idea to go thru the green Amazon box on the main forum pages to buy a case of Carnation VHC. Depending upon which formula you are using, you may want to add a couple cans of C-VHC. That has 560 calories per can while formulas are usually 175, 375 or a very few are 560 calories. Formula can be very expensive. I was charged $80 co-pay per case which was supposedly discounted from $220 per case. C-VHC is about $48 per case thru Amazon. Here is a link to Nestle website. Write them a letter and ask for them to donate cases of formula to you. They will send you a form to get filled out by your nutritionist or doctor. Just make sure they fill out every single thing, if one item is missed they throw your application away. I know cuz they sent me 12 cases of formula for free. http://www.nestle-nutrition.com/Contact_Us/Email.aspxAnother helpful link is for the Oley Foundation where they will help you get your supplies if you arent covered by insurance. Make sure you do this in advance since it can take about 2 weeks to receive anything. All you need to do is pay for S&H by sending a money order to the person who has the supplies you want. You can either call the 800 number or email them and get a list of people who have the item you are looking for. http://www.oley.org/equipexchange.html
Last edited by ChristineB; 09-29-2011 10:17 AM.
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 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Nate: All I can add to the previous comments is believe in what they have said and recommended because they have been there. YOU CAN DO IT, and read each of the comments and try to do as they recommended because these guys know what they're talking about. My prayers and love are with you and will continue to be until I read your "ALL CLEAR" post. Big hug from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Nate,
You have a great attitude! Love that fightin' spirit, too. I also love that you are already looking ahead and planning things. You are awesome! Big hugs and lots of love from me.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Keep fighting Nate! I wish you could do something to change Drs. I'm sorry you're in pain! My thoughts and prayers are with you! Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Great news re no node involvement! High 5 on that. I agree that your physician sounds a bit discouraging. What an idiot!! Tell them you are there to challenge them to far exceed their own expectations!!
With my second cancer I had two nodes positive, had had what my surgeon thought was a "lifetime dose of radiation", but here I am 4 years out from diagnosis after having received another 30 radiation treatments (apparent toxic) and one of my biggest problems is keeping weight off!! By the way, my second tumour was "invasive and moderately differentiated".
Do not give up. If you aren't getting what you need from the hospital you are at - MOBILIZE - find your local politican and get some help to make some noise. My second cancer I said "Hit me with your best shot". They did, but I am still here today to tell about it.
Be your own advocate. We are here to support you.
Donna
Last edited by Pandora99; 09-29-2011 06:32 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Nate, I've had doctors who panic too. We like them to be honest but not to close their minds to every possibility. He hasn't even talked to the tumour board yet - someone needs to come up with a sensible plan of action and that takes a cool head and lots of expert discussion. You have the incredible support and knowledge of the people here. Furthermore you sound so strong for someone who has just had the big surgery.
I don't think you need to lose faith in your doctors. Rather, you need to be armed with as much information you can bring to bear so that you are part of the treatment plan.
From way down here at the end of the world I'm wishing you all the best!!!!!!!!
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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