#59093 11-23-2006 10:21 PM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Hi Everyone; A couple comments and questions. I had a neck dissection in February and then had reccurence found in July. Just finished Radiation and chemo just about 4 weeks ago. The mucus has improved dramatically over the last week or so and I am tking a little bit by mouth now (combined with a lot of water when I do eat a little). My throat is still very irritated and sore and I have numerous "ulcers" in my mouth. Some go and new ones come. Dr.'s say I'm getting along well though. These ulcers scare me though, especially the one's that are right around the scare tissue from my surgery. Is anyone else experiencing these sores and for how long? It almost sounds like eating actually may hinder healing process. A few of you mention Carnation VHC. What is VHC and where do you get it? I learned the hard way at the worst time in treatment (just as I started getting the sores) that I was allergic to the soy products and they would come back up the minute I put them in the tube. OUCH! So I have been on Carnation Instant Breakfast, but it doesn't have the calories you all are talking about. My Dr. didn't give me the lidocaine but had me mix the water - 1 gallon drinking water and 1 tablespoon each salt and baking soda. When I first tried, it really burnt too bad, but about two weeks out it really started making a difference. As Mary stated it really does help, just stay with it.
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 ****
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#59094 11-24-2006 02:24 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 | Steve,
It's best to start your own Post so that complete attention to your question can be given. Go to the topic you want to Post under and click New Topic at the top of the screen.
As to VHC....Only pharmacy's carry it, like Walgrens or CVS. Call the Pharm Dept and they will get it for you in 1 to 2 days. If you don't have a large pharm like those e me and I'll give you the tele number to find out who in your zip code carries it.
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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#59095 11-24-2006 02:34 PM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thank you David. I'll remember that. I did find some info on the carnation from their website, but it wasn't clear if it is soy based or not. If it is I sure want no part of it. Sounds as though you are eating pretty well after just a few months. That's wonderful!!
Rhank you for your help.
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 ****
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#59096 12-04-2006 04:16 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jul 2006 Posts: 109 | Yipee, i got my tube out!!! Thanks for all the concern about me pulling out my own tube. Haha, i didnt do it, ok, i waited until the doctor did it, and guess what, it didnt hurt at all but for all of you that are wanting to get that tube out....DONT PULL IT YOURSELF, thank goodness i didnt do it, cause it had an anchor on the end of it, and it would have ripped my skin! So, let them doctors earn that money and leave it to them. OK, about eating...wow, life is getting better and better everyday! Ummm...."food" finally!!! Damn, i never thought some days, that i would taste again and enjoy eating again, but all of you were right, it does come back, slowly everyday! Spicy i can still live without but i cant wait to eat this good ol' tex-mex food!!! I have gone to my check ups and so far so good. They had some concerns about my lymphnode not completely disappearing yet, so i go in for a ultrasound on the 28th and if they see concern, then i will do a needle bio. so......waiting, waiting, but i will have to say, my rad.doctor is not concerned, so i think of it this way, i can sit here and let it ruin my holidays worrying about it, or i can enjoy them and think about it when i have to. And i see those choices as a no brainer, so everyone enjoy your holiday and your families and enjoy tasting that wonderful food!!! | | |
#59097 12-04-2006 04:30 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jul 2006 Posts: 109 | Oh i did have a question, has anyone gone through physical therapy for their neck? Just wondering...i have a little of skin under my chin, that they say has fluid in it and they are going to show me how to get rid of it? How rude is that...i do not look like a turkey!!! Ok, maybe it wasnt there before, but hell you really gotta look for it, to even see it!!! Has anyone experience this "floppy skin" under the chin???? :rolleyes: | | |
#59098 12-04-2006 04:49 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The "turkey chin" seems to be a fairly common side effect.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#59099 12-04-2006 05:03 AM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 248 | Hi Linda, Glad your tube came out with no problems or pain. Just letting you know that one of my enlarged lymph nodes never shrank after treatment and that was seven yrs. ago and I have not had any issues. A lot of head and neck cancers can't be picked up by scans, a lot of our cancers are found by blind biopsies. The important part is that yours was found and treated. I had floppy skin under the chin also and it eventually went away. I don't recall how long it took but it did disapear. Enjoy your friends and family over the holidays and happy eating. Mark D.
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#59100 12-04-2006 06:42 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Linda, Yes PT can help with the fluid in the neck. It also helped with saliva production as I was also getting intra/extra oral massage. And the moist heat felt wonderful. Like going to a spa. Insurance should cover it. Get your doc to recoomend a good PT.
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
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#59101 12-05-2006 04:32 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jul 2006 Posts: 109 | Thanks for all the encouragement! And for all that would like to know, there is a name for what i call "turkey chin" it is called "Lymphedema" and it is a real condition for people that has had radiation or has had the lymph nodes removed. Here is the correct definition of Lymphedema-it is a collection of protein rich lymphatic fluid. It is caused by interruption on normal lymphatic flow often due to surgery,radiation,infection, or trauma. It is the protein in the fluid that makes it difficult to treat. The protein acts as a magnet for more swelling and serves as a food source for infections.* Crazy huh, who would have ever thought it??? Haha, and I was just praying that this turkey neck was not due to old age!!! Yessssssssss, i have a condition, haha. Well,the cure is treatment...but listen to this, it is covered by insurance and its like getting a massage, wow how great is that? I went for my first appointment and they had to evaluate me then took pictures and measured it, then they started the treatment, Oh i thought i was in heaven, it felt sooooo good, haha, this is a good part of all the "hell" we have to go through with this cancer! I was told to find the positive side of this cancer and i think i just have! Mark, thanks so much for letting me know about your lymph node, that really helped take the edge off of this waiting game! Thats what my radiation doc had told me too, but i just needed to hear it from someone that has been through this. You know how some docs seem to sugar coat stuff! Eileen, it is going to be like going to a spa, i agree! Can't wait till my next appointment haha. Everyone have a great day | | |
#59102 12-15-2006 02:52 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jul 2006 Posts: 109 | Hey everyone its been a long time...been busy with the Christmas thing, shopping for 4 kids and their spouses are enough to wear someone out!!! Good news here, the turkey neck ordeal is going away Yipee!!! Got a few more treatments and thats it, damn, im going to miss my daily massage though, thats for sure! Well, i hope everyone is doing great and having fun, until we meet again.... | | |
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