Hi Soon-To-Be Friends,
My sweet husband (of only 4 months) has been diagnosed with Stage 4-A T-3 N-2 M-0 Base of Tongue cancer. We have started with a radiation and chemo treatment and are eager to find others with the same issues so we can perhaps help one another through this terrifying time. It was discovered during a routine physical when his doctor was feeling the lymph nodes in his neck. Seth is not a smoker (he suffers from asthma) nor a heavy drinker so this diagnosis has thrown us for a loop.

I am his "caregiver" and am hopeful that I can interact with others to perhaps gain insight and inspiration as we begin this "journey" with grace, humor, hope and courage.

Please conside
r corresponding with me and I will attempt to help YOU too! Thank you in advance wfor your patience; we are very new to this game here...

Glad you found this site, Mickey< as there are a large number of people who have been through much the same regimen, and any questions you have will be answered promptly. Is he just starting the tx and can he still eat? If so, keep him eating for as long as he can. Does he have a feeding tube? Many of us feel we could not have made it without one though others did so. I had a PEG tube and still lost 50lbs. It's a long and difficult road for both of you. Please check out the caregiver's section of this forum. There is a lot of information available here for patient and care giver. Best of luck to you both.

P.S. If you can, add a signature line giving more details.

Welcome to OCF. You will find so much info here and also on the main pages. There is a search function in each part. You will find many who will be able to help guide you thru this. People here will help you without expecting anything in return. Thats the beauty of OCF, Brian has created a place for us to share, vent and encourage each other. Best of luck with the treatments.

Mickey

Unfortunately I'm a repeat player in this game. As one who has been there and done that not only once but twice, my first advice is to make sure your husband gets a Thyroid (TSH) blood test asap if he does not have a pre cancer TSH test. As you can see from my signature line, I had the same numbers as your husband does.
This is NOT something to worry about but rather something that MAY matter to you both after TX is over since without a baseline to show what is "normal" for your husband, you will have a difficult time getting help IF its needed. It's not too late to get a blood test as the thyroid is not damaged immediately.
While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school in the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level is down to 1.73 after 9 months of thryoid pills
Finally, many many people have no thyroid issues at all, so this may not even apply to you but they take so many blood tests anyway for the chemo, it's worth the insurance of a TSH test.
Welcome to OCF - and so sorry you have to be here.
Charm

Hi David,
I am such an airhead when it comes to navigating around these websites and I don't know HOW or WHAT a signature line is but will gladly do so when I figure it out, okay? (And I COLOR my hair to get it blonde...maybe the peroxide is leaking into my brain?)

Seth DOES have a PEG tube and we have used it for medications up to this point but after two weeks of chemo and radiation, he is having a real sore throat and difficulty swallowing so I think that we'll be utilizing the "IsoSource" stuff that the cancer center has provided. He is having lots of headaches and heartburn also and I never see those type of side effects so I am puzzled. He of course has the dry mouth and fatigue...I am desperate to minimize them the best I can. ANYTHING you can say or any advice wpould be so appreciate David. Thank you from the bottom of our hearts!

Thank you SO much for "welcoming" us here...I am hopeful that not only will I find advice and support but friends as well. I am still quite a novice regarding navigating around this site but hope to become more proficient as time goes on.

There is still so much that I don't know. I used to read Steven King books for "horror"...now I merely have to review my information regarding this type of cancer and scare the poop out of myself. (I still have my sense of humor but expect THAT will leave me before too awful long...)

Mickey,

Has he been tested for the HPV virus?

Has HPV been discussed with the 2 of you?

Judging by his presentation it's more likely than not that HPV is a factor in his cancer.

Mickey,
While I was going through treatment with radiation and chemo I had the awful side effect of heartburn/acid reflux. The radiation burned my esophagus to the point that if I do not keep the acid reflux at bay I may need to have something done. I am on acid refulx meds daily now. I know when I forget it too. I never had this problem until radiation started.

Mickey,

Welcome to the OCF forum, but sorry you had to join. Be glad you found it as it is the best website for all things OC.

This excerpt if from the OCF home page:

�There are two distinct pathways by which most people come to oral cancer. One is through the use of tobacco and alcohol, a long term historic problem and cause, and the other is through exposure to the HPV-16 virus (human papilloma virus version 16), a newly identified etiology, and the same one which is responsible for the vast majority of cervical cancers in women. A small percentage of people (under 5 %) do get oral cancers from no currently identified cause. It is currently believed that these are likely related to some genetic predisposition.�

DavidCPA is our resident expert on HPV. For the type of cancer your husband has (BOT) it is most likely the cause considering he has no other risk factors. From what I understand, if it is HPV caused it tends to respond better to treatment than non-HPV � so this is somewhat good news. I�m in the 5% with no identified cause � yippie for me!!

For your �signature� people list relevant information about their disease or in your cause your husband�s disease. It helps other�s who read your post understand your situation and respond to you appropriately. To add your signature, go to �My Stuff�, then select �Profile� and go down to the bottom where it says �Signature�. This information will repeat on each and every post you make on the forum. Right now it looks like you have your name in the signature box � just replace it with information about your husband�s diagnosis and treatment.

The treatment for this disease is brutal, but doable. It does seem like a living �hell� while going through it, but once you are done with treatment and in the recovery mode you will slowly, very slowly, forget about parts of the treatment. Most of us do have long-term side effects, but I�ll take those considering the alternative.

By the way, you will need to keep your sense of humor to get you through this. After all, laughter is still the best medicine!

Don�t hesitant to ask any question. Also take advantage of the search functions of the website and forum � there is a lot of valuable information already out there. Wishing you and your husband the best.

Welcome to OCF, you and your Husband are about to go to WAR, but with a good team and support system this can be won, listen to your Team and make sure to take sometime for yourself and it will get easier in time!!! Semper-Fi Bob