#22570 03-16-2007 02:47 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Barb, Check to see if there is an Apria Home Care[ google Apria][John actually ended up using the Nutren 2.0 because it was not quite as thick but it had slightly fewer calories] in your area-they are spread out all over the country. They ordered the VHC for us and because John's Doc had written a script for it, the Ins. Co paid for it. Amy in the Oz
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#22571 03-16-2007 03:00 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | To Walt, Hi! So Sorry you all are having to deal with this instead of playing with the grandkids! It sounds like you have things under some control-good for you! The constipation thing is something you all will have to fight all along.[pain meds , lack of solid food, not enough fiber or hydration, etc. cause it. If you can find one thing that she can tolerate on a daily basis [Correctol helped John] Try is for awhile. Also there is a product called Benefiber, available in powdered form at Walmart, that is tasteless and can be added to most any liquid to add fiber to the diet. We also used Ducoliquid at times. Glad you are where your kids can help. You could get out quickly without support.John's peg leaked constantly abound the incision, we just kept it clean with hydrogen peroxide between showers. And we always put a drain gauze between the plastic and his skin-per his Doc's instructions. Please keep us informed so we can help if needed. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#22572 03-16-2007 07:42 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Walt, if you want to look a little farther down the road, I had a golf ball sized lymph node and a tumor, which were both removed and followed by chemo and radiation. That was five years ago and for a long time now I have felt like a million dollars. Never lose sight of the return to regular, ordinary life that WILL happen.
In the meantime, post all questions and concerns here, because those who are going through it now or more currently than I did, will be here to give you all the answers and information you need. You will find simple solutions here that the professionals don't know. This site is a goldmine for patients and their caregivers, so make use of it.
I found it extremely conforting to connect with people who had gone through things before I did. This is what we can offer your wife. You tell her she is NOT alone! | | |
#22573 03-17-2007 12:26 AM | 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 walt Liz and Robin here from the UK just wanted to say welcome and trust in these good friends.
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.
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#22574 03-17-2007 03:00 AM | 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 | To blc,
Remember you have to go thru the pharmacy dept.
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.
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#22575 03-17-2007 10:45 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | blc - I wonder if the accessibility of the Carnation vhc depends on location? I am in TN and I checked at every Walgreen's, CVS, Walmart and several health food stores and couldn't find it. At the different drug stores the pharmacist would always check his "big book" and it was not even in his book. So I did get it online but it was a little more expensive. If you are not successful at the stores closeby, just do a search for Carnation VHC. THey have a website. Sure hope you find it without going on line.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#22576 03-17-2007 10:25 PM | Joined: Jan 2007 Posts: 50 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2007 Posts: 50 | hi Anne-Marie
I found Carnation VHC at South Mountain Health Supply for a reasonable price and it shipped fast also. It was about $23 per case, the cheapest I could find. If anyone finds it cheaper, please let me know. Thanks.
Vicki
Care giver for Stage IV Base of Tongue TXN3M0 Neck Dissection 1-9-07 IMRT & 8 weekly Cisplatin 2/20/07 - 4/17/07
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#22577 03-18-2007 03:21 AM | 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 | Anne Marie, This may be helpful, it's a post I made up a while ago: 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 and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link: http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183 Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU. Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it. At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in. You can also order it online but it usually costs more and takes much longer to get. No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.
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.
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#22578 03-18-2007 03:17 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | David - I checked the link and it does make it a lot easier to find someplace nearby to get the Carnation VHC. Happily, my son is past the stage where he needs the Carnation after the small supply I had gotten for him online. But for anyone else that needs it, this sure is a much quicker way to search for it and get the closet place to get it. Thanks for the link!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#22579 03-18-2007 06:37 PM | Joined: Mar 2007 Posts: 18 Member | OP Member Joined: Mar 2007 Posts: 18 | My thanks to all for the great info and kind words. Pat has had two rounds of Erbitux thus far. Tomorrow she'll have another round of Erbitux as well as start radiation. She'll be getting the Amifostine prior to the Rad Tx and she'll be drinking a lot of fluids (32oz) prior to plus she'll take a Compazine about an hour prior to the injection. She has started to get a bit of a rash on her chin plus a couple of of pimply looking things on her face. Also she has started to experience some fatigue on and off. The diarrhea issue appears to be something I'll have to remain vigilant about. She's had a couple of "regular" days when taking the Milk of Magnesia but as soon as she relaxes on taking it the constipation is back again. Good lesson learned there. Also, she's been reading this message board with me and really appreciates everyone's help and support. So, we'll begin the next phase of our journey as we go forward with rad tx. No matter what - we will trust the Lord. Amen!! Thanks again to all. You're really very remarkable and such a blessing.
------------ CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
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