| Joined: Jan 2009 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2009 Posts: 33 | And another thing....
In case you're wondering what the diet is: 6 servings of ensure in addition to normal eating 2 15g supplements of L-glutamine per day 2 TBS of honey 15 min. before rad., 15 min. after rad., and 6 hours following (taken before treatments begin just to get used to the taste) 2000mg fish oil twice per day (to help increase appetite)
9.29.08: Dx @ 24 w/ T2 SCC, tongue 10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad. 10.06.09: Recurrence in l. lymphnode 11.16.09: L. neck dissection + lost nerve XII 12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG) 02.15.10: Done with treatment!
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Jen
I do not know how I could have missed your intriguing posts. No need to apologize for wanting to avoid a PEG. I have ignited fiery threads here that have been closed down due to the brutal attacks on my sharing that I was as proud as proud can be on avoiding a PEG and awarded myself imaginary medals & heroic status. It's just a difference of opinion on an elective procedure and not surprisingly everyone thinks what they did was the right thing. Your diet sounds right on the money. I went through all my radiation and chemo just on Ensure. I wish you every success. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Jen
Also I should note that I like your doctor's marathon analogy, I finished four of them with my best time of 3 hours and 15 minutes. I used to quiz my medical team when they would use the marathon analogy only to find that only I had run them. It is a good comparison however. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Jen, I would drink Ensure Plus rather than Ensure. It's about 350 calories per can so you need less cans and in my opinion tastes much better. I would avoid the strawberry flavor. IMO it is awful. Vanilla, coffee and butter pecan were my favorites. I managed on about 1500-1800 calories a day with no peg and only loss 5 pounds, but I'm only 5'5 and 120 pounds.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | 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 | Better yet drink Carnation Instant Breakfast VHC which has 560 calories in the same size can. Yummy vanilla is their only flavor!~!~ lol
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I drank them all--Boost, Ensure and of course Carnation VHC. I grew to like Carnation, when I was able to eat and had a couple of cases left over I used it in my coffee. I also liked the fact that I ordered it online through Amazon (accessed through OCF) and it would miraculously show up on my front porch. In fact, that's how I order my dog food--it's great getting 30 to 60 pound bags dropped off at my house ![smile smile](/forums/images/graemlins/default/smile.gif) Stay strong
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Jan 2009 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2009 Posts: 33 | Thanks to everyone for the diet tips! I looked online for ensure and it didn't seem cheaper than buying it in the store. When I get sick of the ensure I might try ordering that carnation stuff from Amazon. In the meantime...an update. I finally have a treatment plan. It seems they're doing a lot of high dosages of stuff "because I'm young and can handle it." In reading other folks signatures my upcoming course of treatment seems pretty standard, but let me know your opinion on the following for someone with clear margins and no visible signs (per MRI and CT) of any cancer remaining after this last batch of surgery: ***33 doses of Hi-Art IMRT, up to 66 Gy in my scar area. Areas to be hit by radiation: both sides of my neck and all of my oral tongue down through the lymphnode drainage area, while specifically avoiding my right check salivary gland and larynx. ***Concurrent doses of Cisplatin, 3 times, 100mg/m^2 each The plan now is to start chemo Monday (12/21) morning, immediately followed by the first dose of radiation. This is all tentative on them finishing my radiation program though. I think my RO was saying that the computer design program liked to crash a lot. At this point I'm just ready to get this whole thing started. The sooner I begin, the sooner I finish and can enjoy being in remission once again. ![smile smile](/forums/images/graemlins/default/smile.gif)
9.29.08: Dx @ 24 w/ T2 SCC, tongue 10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad. 10.06.09: Recurrence in l. lymphnode 11.16.09: L. neck dissection + lost nerve XII 12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG) 02.15.10: Done with treatment!
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | keep those calories (more the better!!) going down and good luck.
Stay strong
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Aug 2009 Posts: 7 Member | Member Joined: Aug 2009 Posts: 7 | Jen,
Don't underestimate how important nutrition is. It would definitely be great if you can avoid the peg tube, but if you start losing too much weight you should definitely consider it. Also, my Mom's Cancer Center (in Philly) did a great job of monitoring her blood counts and her nutrition, which I truly believe made a huge difference. Before she started treatments there, her Vitamin D levels were extremely low so she needed to take supplements.
I definitely agree that, although unpleasant, it's better to over-attack the cancer than under-attack it. Make sure you stay hydrated sufficiently too. Usually you can get hydration treatments right in the hospital via IV. Very important (especially when getting chemo).
Good luck with everything.
Last edited by JAL; 12-26-2009 03:03 PM.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Jen Keep the Faith. Your TX plan sounds reasonable, hardly over the top (this from the perpective of a two time cancer with 96 Gray radiation, 8 Erbitux and 3 carboplatin chemos). I used Ensure Plus because it tasted better than Carnation VHC plus did not trigger as much mucous. It is doable. And you can do it. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
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