| | 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 | Belinda,
Inquire about a nasal tube that they slide into your nose and down into your stomach. In office procedure that takes only a few minutes. It's meant for temporary feeding solutions just like this.
Also Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept or online and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only paid about $32.00 per 24 can case at Walgreens.
It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable.
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 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Thanks for your comment. I'm happy to report that I got down a whole can of chicken broth for 9g of protein and a whole 7 up for 210 calories. I also got more IV fluids and a half bottle of water down yesterday. Today hasn't been as successful as of yet but I'm going to get down some more stuff here shortly. Thanks again.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi Rick, YOU CAN DO THIS. It's not comfortable but it is possible. The mucous has been the toughest part for me and many others but it's managable. Please keep yourself hydrated and nourished while in this stage. Good luck and keep us posted.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | WE have magic mouth wash in the states too. The one my oncologist made up himself, has 3 narcotics in it, but it just doesn't last long after you eat, Supposed to take 2 teaspoons before meals. swish, gargle and then swallow it. Same at bedtime. At bedtime it will last longer unless you try to eat. Belinda ,m I had one thing done to me that most don't and that is radiation seed implants put into my tongue by going up thru my chin in the OR then quaranteening me for at least 3 days, This ended up to be 7 days and one step from being put in a home to wait for me to die,. LOLNo way will I leave this earth that easy. I was put into an induced coma for the 3 days. As you can see, there is no set procedure they follow.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi belinda
the part of your post i picked up was that you have a new born baby,surely the best reason i the world to get through this,but how on earth you cope is quite beyond me,you must have a great support network.
all the very best
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | Belinda,
You really need to get more in you than 210 cals. Have you heard about Carnation Instant Breakfast VHC? In a small 8 oz can it has a whopping 560 nutritionally balanced cals. Mix it half and half with whole milk and drink one with each meal or as a meal. Four or 5 of those a day is all you need until you get your desire nad or strenght back. I lived on that stuff all thru Tx and at least a year post Tx. I think it saved my life and no I don't get commissions. 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 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi David,
Yes I do have some of those. I'm having trouble with anything milk like, it seems to really stick in my throat and not go down even when I dilute it. I have tried the Boost Breeze which are more like fruit juice. That will go down easier, but the fruit tends to burn so that's hard too. I'm going to try diluting the Boost Breeze to cut down on some of the burning so hopefully that helps. It's not got as much calories but they have 250 and lots of protein. Thanks for your suggestion and I'll keep doing what it takes to get nutrition.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi Liz,
Yes, a great family supports me. I just wish I could enjoy the precious stage with my son a bit more...but I'm still here and I do enjoy him so thats what matters. I'm sorry about your husband. That is scary to me as it took him so fast. Were there other medical things that made it progress that rapidly?
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | 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 | Belinda,
I'm sure you will and not being able to drink milk stuff would have been really hard on me as it was so soothing and yes some fruit juices especially OJ burned me as well for a long time post Tx. I also ate a lot of things with gravy, oh and pancakes smothered in syrup. Yum
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: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Hi Belinda. I've been a bit AWOL on here lately as we've just been overly busy. I'm in Richmond, IN and my husband was treated in Indy. Just curious as to where you are getting treatments? Like Liz I am amazed at the support network you must have to go thru this and have a new baby. I wish you all the best and can only offer to keep coming here for support and advice of those who have been thru it all. I would have gone crazy if I hadn't found OCF.
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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