| | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Carol: Lots of prayers and best wishes. Milk torched me post treatment for a long time and I found many of the protein powders mixed well with water in a blender. I couldn't taste anything anyway so it was all good!!  Warm regards, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Carol,
Clark had ORN and had a fibular graft, too. It is a big surgery but the results are so worth it. Now he can eat and function normally. The PEG is not bad at all. It helped my husband maintain his weight for 3 years when eating was almost impossible. You will do fine. We are all cheering you on and you have my support. Christine had a good idea about bulking up. Doesn't Lactaid make ice cream? Ummm chocolate sauce! A couple of spoonfuls of Nutella will pack on some pounds, too. That stuff is so deliciously decadent!
All my best-
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Carol, I'm so sorry to hear that you are having to go through this again. My mother has had several bouts of oral cancer. She never drank or smoked but it keeps coming back. She is 79 years old and hanging in there. You can too! You sound like a pretty strong lady to me with lots of friends here and the best cheerleader in the world...Christine...she's something, isn't she? I will be keeping you in my prayers. You can do it!!!!! And, hopefully, life will be much better after it's all said and done.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Carol, I am so sorry. This totally sucks!! We are here for you so keep strong and lean on us. My thoughts and prayers are with you.
Wendy
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Carol,
I am just sick to hear this. Enough is ENOUGH !! I am just in tears for you. I can't even begin to know how you are feeling right now. You have been through so much already. I will be praying for you all the way.
I just wrote to Lisa about we could not be this lucky in the Lottery. If we were you would have Won it all!! (You might want to pick up a ticket)
I really hope this will be the last time you will have to deal with this monster. I know you already know we here at OCF are all here for you.
Take care.. Love and Hugs to you.
Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | 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 | Carol, I am sorry to hear you news... I am at the beginning of my journey with cancer, and it's terrifying all around. I just wanted to say I am allergic to milk, I am not sure if there are any ensure type products that are dairy free... though I may look into that this week. What I use as a replacement is almond milk which is awesome (the rich chocolate is a lot like regular chocolate milk) Perhaps you can mix it with a high calorie protien powder (soy or veg based - NOT DAIRY - which most of the wheys are) It sucks being allergic I miss my ice cream too. But there are alternatives out there that are good. Best of luck on this leg of your journey. My thoughts and prayers are with you.
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | cheryl
I just read last week something about Ensure. I am sure I read that Ensure does not contain milk even though it tastes creamy. Can't for the life of me think where I read that but Google Ensure and check for yourself before taking my word for it.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | I have to take that back. Just went on the website and checked the ingredients and it does contain milk protein but then says at the bottom
"Contains milk and soy ingredients. Gluten-free; suitable for lactose intolerance".
Unsure what this means for you as I don't know what your milk allergy is. Sorry that I gave you a bum steer
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I'm late to this thread and your current situation. I am so sorry to hear the news.
You know you will be in my prayers and I have no doubt that you will beat the beast again.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | I'm actually allergic to the casien in milk - not the lactose. I am sure they have something that will work on me! I know I'm not the only one with allergies to milk. Thanks for the info - in will definitely do some research! Best of luck and my thoughts are with you all!
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
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