| | Joined: Apr 2014 Posts: 8 Member | OP  Member
Joined: Apr 2014 Posts: 8 | my husband was just diagnosed last monday. We are past the shock and tears and now its time to fight. Are some of the pages on your website under construction? some don't seem to pull up. Really looking for home made tube feeding recipes and if anyone out there used Dronabinal for pain relief and appetite stimulation.
Husband: HPV16+ SCC base of tongue 2 nodes+
7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! You have found a great source for info and support to help you and your husband get thru the upcoming treatments.
Best wishes!
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome MLC. I used Dronabinol, and is also known as Marinol. It's used to help nausea and as an appetite stimulant, not so much as pain I'm aware of. I guess it helped having gone from 130 to 175lbs, but I'm still 50lbs or more lighter from my original weight, but will stay where I'm at for now. As far as shakes, there are a few recipes here, a number of cookbooks elsewhere, and basically anything can be liquified, diluted for the tube, especially with a Vitamix.
Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | Hi there... Welcome... Tell your hubby to eat as much as he can now and eat the foods he enjoys. Chances are his appetite and ability to eat and swallow will wane during treatment. (Assuming he's having rads - that will likely be the last 2-3 weeks and the first two or so after treatment has finished)
I didn't recognize the name at first - but when Paul said marinol I knew what it was. It's not available in canada anymore... It's a THC derivative - aka - marijuana. It will likely stimulate his appetite which is a good thing, however there are some side effects and drug interactions so as long as it is your dr is the one who prescribed it... I suppose it will do its job. Also if there are any kidney or liver issues, it's should be avoided.. Apparently.
Anyway hugs and sorry you have to be here.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi there, MLC,
Here is our very own ChristineB's famous, fabulous Highly Nutritional Shake:
It has garnered nothing but rave reviews from our members. Enjoy!
<<Giant High Calorie Choc-Peanut Butter Milkshake
3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Apr 2014 Posts: 8 Member | | OP Member
Joined: Apr 2014 Posts: 8 | Thank you for the support. Feeding tube inserted, power port placed. Picking up mouth guards tomorrow and having scan for face mask. Starting Erbitux next monday. Radiation starts next monday. I am also scared. Found a white lesion on inside of my left cheek. Hope its not a cancer also. Wouldn't that be ironic if both of us had oral cancer at the same time. Can't even think about that!!!
Husband: HPV16+ SCC base of tongue 2 nodes+
7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
| | | | | 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 | That would be horrible. Wait a bit... see what happens give it two weeks if it's not gone have it checked. Don't ignore your health because of this, you need to be in good shape too.
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: Mar 2014 Posts: 22 Member | | Member
Joined: Mar 2014 Posts: 22 | Hello, for tubefeeding recipes you can go to foodfortubies.org or try drinkyourmeals.com
There is also a Blenderized Food for Tubies group on Facebook. I've been eating through a feeding tube more than five years now. If your husband will have a tube long-term, you should look into getting a good blender (Vitamix or Blendtec). PM me if you have any questions.
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | | Joined: Dec 2013 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 26 | with Erbitux, please be prepared for what could be a world class rash...antibiotics such as keflex may be a lifesaver
40 yr old male--very active, ns, rarely drink
T4aN0M0 HPV+
11/21/13--Lesion on back right of tongue, biopsy neg, CT neg
11/25/13--2nd biopsy DX SCC BOT
12/21/13--T4aN0M0 via PET and MRI scans
12/30/13--Begin Cetuximab/Rad Treatment
Treatment currently at Stanford Medical Center
2/14/14--Finished 36 rad treatments
2/18/14--Finished 8 cetuximab infusions-completion of treatment
4/26/2014--MRI showed marked tumor regression
5/27/2014--PET clear
8/18/2014--MRI clear
2/22/2015--MRI clear
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
