#86167 12-15-2008 07:51 PM | Joined: Dec 2008 Posts: 18 Member | OP Member Joined: Dec 2008 Posts: 18 | Why is it that the Emoticons just don't have what I need...? Beloved husband Ron was diagnosed on 11/23 with a cancer on the back of his tongue, which has spread to his left lymph node(s) (T2N2b). He's 67, never smoked or drank to excess... It all begins. Never thought I'd be here, but know that in the months to come while we go through his stages of treatment, I'll be seeing messages that will be full of support and hope, and getting ANSWERS from those who know first-hand what is happening to/with us. An online community like this one is just what I was looking for. We came back from the CCC in Los Angeles today, and his treatment plan is for chemo (3) and radiation (40?) over two months, beginning just as soon as we can get the dental stuff done, and the PET scan. He has a dental appt. tomorrow back in LA, and will get the PET scan done on the 30th in Ontario. All this new terminology, issues, decisions. I'm no different in that I am really tired and feeling overwhelmed right now. Thanks for listening. [img] http://www.elinart.com/show/banner-ep.gif[/img] | | | | Joined: Nov 2008 Posts: 5 Member | Member Joined: Nov 2008 Posts: 5 | Hi Elin,
I'm all new to this myself (diagnosed on 11/18 and surgery on 11/20). I have a visit with an oncologist tomorrow... Scarry. Just curious, why LA and Ontario?
Hang in there; the emotions run wild at the beginning. Try to take things with logic and focus on the facts (not the what if). I know - easier said than done (I'm trying to convince myself of this too).
Take care of yourself, or you won't be able to take care of your husband.
SCC on right edge of tongue & floor of mouth. Removed 11/20/08; all clear. T1NXMX. Pre-surgery neck CT scan clean.
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Hi Elin,
Welcome to the OCF. Come back often and ask lots of questions. There are many very knowledgable people here and there is generally others who have shared your experience. You can find out how others have coped, the questions to ask your doctors and get sound advice throughout your treatment. This crowd is compassionate and understanding...we've all been somewhere similiar to where you are. Hope your journey is an easy one.
Susan
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Welcome to OCF - Your husbands staging and lymph node involvement is the same as mine- and I had the same thing twice and am still here to talk about it!
Is your husband having surgery? I saw chemo and radiation, but didn't see any mention of surgery?
Keep posting - we're here for you and your husband.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Dec 2008 Posts: 18 Member | OP Member Joined: Dec 2008 Posts: 18 | We live in Riverside, and Ontario is the closest Kaiser for the radiation and chemo. Los Angeles is much further, but we had to go there for the initial consults today, and Kaiser has a link to UCLA for the dental, with the stents (now I know what those are...). [img] http://www.elinart.com/show/banner-ep.gif[/img] | | | | Joined: Dec 2008 Posts: 18 Member | OP Member Joined: Dec 2008 Posts: 18 | They (the ubiquitous "they") don't think that for what he has where he has it, that surgery is an option. A good question to ask--for a specific reason. Thanks. What's the general experience and thoughts on that from folks here? [img] http://www.elinart.com/show/banner-ep.gif[/img] | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | Welcome, Elin ((HUGS)) to you and a warm welcome. I wish we had met somewhere other than here, but hey -  We will make the best of it all, right? Feel free to ask anything at any time - you are amongst friends and not only friends,, but people who have been where you and your husband are right now ... so feel free to express anything and ask what you wish to know .. we are here for you. I wish your husband Godspeed for his treatment and recovery. May his trials be few and his recovery be complete. Again, welcome! It is nice to meet you.
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Welcome to our family and rant, rave, cry or anything you want. We all understand and will do whatever we can to assist you and your hubby. Good luck and remember you are not alone.
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Elin -- Welcome, and we all understand what you and your husband are going through. As a transplanted Californian (SF Bay Area), I can appreciate the Ontario/LA conundrum.
As you can see from my signature, my diagnosis was very similar to your husband's. The tumor at my tongue base (often referred to as "BOT" in the forums)was 2 cm in size. My doctors indicated that they could treat a tumor that size more effectively with radiation, and not have the morbidities that result from BOT surgery, keeping in mind that a significant margin would need to be maintained around the tumor.
The primary difference in my treatment was that I had a bilateral neck dissection before starting radiation and chemo, and I had weekly chemo at lower doses.
It will be helpful to all of us to have you create a "signature" for all of your posts, as you see with others here, highlighting the details of the diagnosis and treatment. Go to "My Stuff" above, select "Profile", and all the way at the bottom is a place to enter the signature that will appear for all of your posts.
The treatment is not easy, but it is doable. We are all here to help. Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | 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 | He has a high, over 70, percentage chance that his SCC will test positive for HPV. His slides can be tested at several U.S. locations like John's Hopkins. While it may not affect his treatment, studies have shown that HPV+ SCC responds better to the treatment and (therefore) has a better chance that it won't come back. I also would question why they are choosing to deliver his chemo over 3 times vs the ever increasing popular 6 times as it seems to lessen the side effects of the chemo which I assume is going to be Cisplatin. We all certainly know what you two are dealing with now and it will take a while to begin to adjust but know this...this cancer is very treatable. We will be here with you guys every step of the way.
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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