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.
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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.

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

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

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...).
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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?
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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.

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.

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.

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.