#94381 04-27-2009 09:03 AM | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2009 Posts: 75 | Hi Everyone:
My dad was just diagnosed with squamous cell cancer on the base of his tongue. He is elderly but in good overall physical health. He does have some loss of kidney function but the drs are still going to try low dose chemotherapy along with radiation. His dr gave him a 70% chance of recovery and said it it is curable. I should mention it did spread to his lymphnodes. Next week he starts his treatment and he did get a feeding tube in case he cannot eat during treatment. What should I expect? What kind of foods has anyone been able to eat during treatment. Please respond.
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | The first 1-2 weeks are not really impacting eating. After that you loose most of the taste and things taste like metallic wallpaper. Later on he will probably run into problems with eating orally as most of us have and rely on the PEG tube. Before that soft food, pasta scrambled eggs soups milkshakes etc are working well. Regarding kidneys and chemo. Cisplatin has a number of side effect and kidney toxicity is one of them. You want to be aware of that, an alternative drug is carboplatin with does not have that problem (to the same extent).
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Welcome to the board and sorry for the reason you're here. As you will no doubt hear over and again, get your dad to eat everything he can now. All the stuff he loves, shovel it in. After a couple of weeks, he probably will not be able to handle solid food at all. Keep him taking liquids by mouth as much as possible, otherwise the swallowing muscles forget how and he'll need to go to therapy for that. He will also have a very dry mouth. Get some Biotene mouthwash, toothepaste and mdry mouth gel. There will be othwers weighing in with more advice and to answer any other questions you have so ask away and there will be someone to answer. Stay by him and support him as much as you can. Good luck.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hello and welcome to OCF. I personally have not had a feeding tube so I cannot help with that. Learning from others, I know a lot of people use Carnation VHC. I'm sure plenty of people will see this and give you some good I just wanted to welcome you and let you know there are a lot of people who can help here. I'm always here to listen if you need to vent!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Welcome to the Board and I'm so sorry about your dad. How old is he (you said elderly). I think the treatment is likely more difficult on older people but there are vast differences in how people cope physically and psychologically. He should be assigned a dietitian as part of his medical team (if not right away, request one) and this person will prescribe a liquid feeding product to be used with the tube. Anything he can eat by mouth for as long as possible is important including drinking water and other liquids. My husband used the tube for extra water to keep him hydrated once his mouth and throat started to hurt.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | PEG Yes, get as much Biotene mouthwash, toothpaste, and they have an extra soft toothbruch that I think is great. USE them 2,3 or 4 times a day. I have one in everyth bathroom so it's convenient, and I have no excuses not to brush or gargle. I was able to use all of them through my chemo treatment which also created mouth sores. (The Mouthwash and Toothpaste you can get in the Giant grocery store).
There is also special denture cream available on the web, if he needs it.
As other posters have mention, get him to eat as much as possible now. Put on the weight as it'll help his stamina throughout the process.
Get a nutritionist (which should be part of the team) or at least the hospital will give you a name of one. There are also very good books you can find on Amazon concerning cancer diets.
In addition to Ensure, Boost, Carnation Instant Breakfast, you can also make smoothies with haalthy ingredients.
Some people have creamed there food, such as spinach and broculi, and were able to put it through the feeding tube. Some mixers work and some don't totaly geat the lumps out.
Keeping you father hydrated (Vitamin water is great), and nurished, and for him to have a great attitude will pull you through this difficulty.
Also, there are some exercises he should do with his tongue and neck to keep them mobile. See if the hospital will refer you to a physical therapist. However, if you want, I can send you my info sheet my dentist gave to me. Just let me know.
Good Luck Sandy S.
Good Luck Sandy S.
Last edited by SandySt.; 04-27-2009 11:29 AM.
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | 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 | Boston, How old is elderly? Was he tested for HPV? This was written as responding to a poster with the SCC so keep that in mind: Being near ideal or even under weight you definitely are a candidate for the Peg Tube and perhaps a Port. Discuss these with your docs ASAP. Until then do eat eat eat and eat like you have never before. Make a list of your top 10 all time favorite foods and do nothing but stuff yourself with them until you can't stand them anymore. If the label reads WARNING HIGH FAT, then pounce on it. The first couple of weeks will probably be a non event but don't think that's all the rad will do as you will most likely suffer like the rest of us weeks 4 thru 3 weeks post Tx. During the rad consume at least 2000 calories and 48ozs of water each and every day however you can and that's where the Peg and Port come into play as your mouth will become very sore and swallowing will be difficult and painful. Along that line stay on top of the pain meds. If one combo doesn't work let your docs know and try something else. Along with the pain meds can come the big C for constipation so talk to your docs early on to be prepared for it. You may loose your taste (about 2 weeks in) and you may develop thick mucous ( about 5 weeks in) and eventually your mouth may go dry (usually post Tx). Mentally this whole cancer thing will take a tole on you and your family. IMO the mental aspect is at least 50% of our battle so don't let things bother you without talking about them. We are the best sounding board you could possibly have. Everyone can be different but generally these are the things to watch out for at first. This site will be like your Guide to Surviving OC Treatment except the guide talks back so read all the pages and ask away about anything that concerns you. Good luck, I'm sure you will do well. _____
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David had me on the Carnation VHC big time until my ins quit paying for it. I never had a tube either so I am blank on that subject. But yes, go for the food while he can. I just can't put the weight back on umless it's frp, going non stop all day.
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: Apr 2009 Posts: 75 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2009 Posts: 75 | Hi: No, he was not tested for HPV. My dad will be 85 in August. But, you would not believe it if you saw him. Most people think he is about 70. Thanks for the information. Everyone seems so nice and I am so glad I found this support group. I am sure we will chat again soon. Thanks, Chris
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Hi Chris, I am also lucky to have an 80 year dad that looks younger physically and also has a younger outlook on life. He accompanied me to all of my 6 or so day surgeries over the last couple of years. I few times nurses referred to him as my husband. (�We will notify your husband when you have come out of the anaesthetic�) He of course was pleasantly amused where I was pleasantly insulted  Happy Birthday Sandy S............... I noticed a cake against your name and saw it is for 27th April�Congratulations. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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