| Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 117 | We found this stuff nestle makes that you add to anything. So I'm now getting 650 calories out of one boost shake.
Ps- half way thru radiation today!!!!!
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Awesome congrats on both accounts... 
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: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | John,
You are probably talking about Carnation Instant Breakfast VHC (Very High Calories). If not check that out as well. You have to order it either on line or thru a pharmacy like Walgreens, CVS but you don't need a prescrip. I found that stuff over 5 years ago and I talked about it sooo much on this forum that you would have thought that I was getting a kick back.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 117 | So after a discussion with my mom we both came to the conclusion that I couldn't work any more. So we started the temporary disability ball rolling and a miracle happened. My boyfriend started an online fundraiser for me just on the off chance that someone would donate and bam! Enough people donated where it doesn't even matter if the temporary disability kicks in or not. After today 8 treatments left.
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | That's soooo awesome! You can do it!
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | That is really good news! Good for you and your bf!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Congrats John. Thinking about you!!
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 117 | Had a relaxing day. Tomorrow starts my last full week of radiation and then after next week I have 3 more and I'm finished. Yesterday wasn't such a good day. I do have a radiation burn on my neck. Here's hoping the next week and a half goes by smoothly. I'm so sick of eating only boost shakes.
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | 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 | For the radiation burns, your doc should have prescribed some heavy duty creams. I used beta-val cream, other have used aquaphor or some other ones. Pat the cream on gently, never rub it in. After bathing pat the cream on and let in soak in. If your neck is oozing, its still ok to put the cream on. It should be left open but its ok to gently place a non stick gauze pad on top of the cream, tape isnt necessary. You can put cream on right after rads but never go into rads with the cream on as it could interfere with the radiation treatment. 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: Feb 2012 Posts: 117 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 117 | Oh we're treating it but it's still bad. It's like the entire side of my neck is peeling and the other side is covered in scabs. We're using aloe and aquaphor.
On a slightly different note did any of you feel like your entire mouth was on fire? And I know a lot of you said the last 3-4 weeks when you're done with radiation is the worst. Can you describe?
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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