| Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Nov 2011 Posts: 60 | Hi, I'm Laura and my husband was recently diagnosed with SCC of the tonsil extending into the base of his tongue and soft palate. He has bilateral involvement of the nodes but the PET indicates it is confined to the neck region. He is scheduled to undergo 7 weeks of radiation and will have weekly chemo. He is healing from fairly extensive dental work so for now we wait for treatment to begin in earnest.
I am a pediatric nurse so I feel somewhat equipped to deal with the healthcare system and boatloads of medications but am out of my element in terms of adult nursing and oncology.
We have a couple of young kids ages 9 and 11. Feeling pretty crappy right now but everyone on this board can understand that.
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | 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 | Has his slides been tested for HPV?
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: 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 | Try not to worry - if he is HPV + it responds very well to radiation & chemo. As for nursing him - priority is eating ( get him to add some pounds now if you can) - let him enjoy the foods he loves! And lots of them. Head & neck rads makes swallowing painful and taste buds run for cover for a long while - he should be okay up to week 3 or four then things get dicey. Ensure and boost got me through the worst of it. Trying to maintain his swallowing reflex is important - they may peg him so he should still try to swallow even just water if he can!! Hydration and nutrition are important throughout treatment - and added protein as well. I used to toss a scoop I'd protein powder into my ensure once a day. Rads is cumulative so the worst time is actually the two weeks following radiation. Chemo depending on the person is either okay (minor nausea) or really bad - it depends on how the person handles it. Pain management is also important but there will be a bunch of scripts so not to worry. Also have his tsh levels tested prior to treatment so you know what's nomal for him - if he's taking antioxidants stop them now - they interfere with radiation. Depending on his skin type (fair skinned tend to burn and blister the most) so invest in a good cream. I'm sure if I've missed something others will join in and share - Sorry you have to join our group but when're here for support if you need it. Take care!
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: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Nov 2011 Posts: 60 | I looked at the biopsy path report - moderately differentiated scc. It did not mention HPV status but I'll be sure to chase this up. Thanks. Didn't ask about prognosis, which HPV status impacts, because at this point he doesn't really want to know. "The treatment goal is cure."
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Nov 2011 Posts: 60 | He is going to get a peg at the start. I told him to consider it insurance or a best friend, whatever. He's says he's not too troubled by the prospect. He's a slender but powerful man who carries muscle but no body fat. He's moderate in all things by nature, including food intake, but is putting effort into eating more and I'm adding butter and cream to everything. Plus high protein foods. He's gained 2 kg in the past 3 weeks in spite of having many teeth out. I'll add TSH to the list. He takes a multivitamin but what specifically are you meaning when you say antioxidants?
He's being very diligent about everything that has been asked of him so far. I think he will make a good patient - like when they tell him he has to continue to swallow even with a perfectly good peg in situ, he'll do it. What I DON"T think he will do is chase down his own information, he'll just do as he's told and try not to think about it. That's where I come in.............Thanks for your prompt replies. Really appreciate it.
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | 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 Laura and welcome from a fellow Australian. Please add a signature when you have time. Its easy, click on the "My Stuff" tab, then on the drop down menu, click on "Profile". Scroll to the bottom and type in the white box, click "Submit". It will help others here to help you. As I had surgery only I will leave it to my fellow OCF'ers to answer any of your questions re rads. and chemo. Where in NSW is he being treated? Again welcome to what will become an invaluable source of information and support for you and your husband. Good luck to you both. 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
| | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Hi Laura, I am so grateful that I happened upon this forum, and you will be too. Like your husband, my brother, who finished radiation treatment 3 weeks and 2 days ago, didn't/doesn't want to know about any of it, just wants to get on with being well.
Like you, he and his wife have young children (they have four from 3 to 13yo), and his wife has her hands full just keeping things normal for the kids. Often it is the caregiver who is on the forum, rather than the patient. Your husband may like to eventually read responses to questions you ask of the forum, rather than post himself.
As Cheryl, says get him to fatten up as much as possible. Simon went from being a very fit, gym-going 47yo of 82 kilos, to looking like our dad at 70, because of the 15kgs weightloss!!
You must be very worried, but this disease can be beaten, and having good support is very important - having a medical person in the family is a bonus !! I got your PM and I have replied. I'll be thinking of you. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Laura, there are some supplements that you need to be careful with as they can help the cancer as well as the healthy cells - vitamin E has been shown to increase the chance of H&N cancer recurring if you take it during or even after therapy. Other supplements may decrease the effectiveness of the therapy itself, as Cheryl mentioned. Make sure you list everything he takes and run it by your team. However the HPV determination comes up, remember that part of the outcome rests on how closely the treatment plan is followed, and how healthy the person is to begin with. It sounds like you've got both those points covered! If he is a smoker or smokeless tobacco user, he needs to quit now. Remember to care for yourself, as well!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Nov 2011 Posts: 60 | Hi Gabriele. He's being treated in Gosford. Our radiation oncologist has an interest in head and neck cancers and practiced in Hong Kong where he got a lot of experience with nasopharyngeal carcinoma. Haven't met the medical oncologist yet. If he needs to have surgery at some point I imagine I will steer it towards one of the major centres in Sydney.
Thanks to all of you for your support.
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Nov 2011 Posts: 60 | Thanks for the advice Maria and Cheryl. He takes a daily multivitamin and that's all. That can be ditched easily. I intend to get him in to see a dietician ASAP because he just doesn't have the weight to lose. He was a very light smoker but quit 13 years ago. Drinks one glass of red with dinner, never more. No drugs, gets enough sleep. Healthy as a horse. This came as a big shock.
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
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