Jon I had Erbitux and it has a lot of side affects too. I have no idea how expensive tho, because my Ins paid for it. Right now I am in Hyperbaric oxygen treatments , 5 days a week and for either 6 or 8 weeks. Time depends on the Dr and what he thinks.

Jon, do you have a support network? This treatment is difficult and many people get to a point that they are on too much pain medication to drive to treatment. It's also helpful to have someone to go to the pharmacy and help keep track of fluids, calories and medications.

On a good note, my husband was Stage 4 BOT. Treatment was hard, although his recovery has gone very, very well. He's currently 2 years post treatment.

He started w/ Cisplatin and then switched to Erbitux when his hearing started to be impacted by the Cisplatin.

Jon:
I'm cnfused. Are you having an operaton?

The Tomo I understand. The CT scan is to guide the radiation to the precise dimension and shape of the cancer and spare healthy tissue.

Also, did you ask them about Induction Therapy???

Sandyst

Thanks guys, jut a few questions.

davidcpa
Ask about a PEG tube.

Ask about a port.

Do you think I will need one, the doctor seems to think?
I can work with the treatment, he is giving me?


DonB
I sure hope they do not mean to give me an operation DonB there has been no mention of it so it would be a shock to wake up and see my tongue gone.

Brian Hill
Thanks for your kind words yes I have worked out the stages system now.

EzJim
Hi Jim I think it sounds like something Michael Jackson was interested in Hyperbaric oxygen treatments, I don�t know if it would be any good for me with BOT treatment.

mhupe
No I don�t have a support group to help me I have always had many people around me but now I was loving my freedom now I need it I�m alone apart from a few work colleagues.
I hope my hearing is going to be ok as I can�t afford Erbitux glad to hear your husband has made it to another year wonderful news they say they will be able to cure cancer by 2016 I hope its started now. They have hospital here in Thailand doing wonderful things with stem cell trtment that seems to work wonders.

SandySt.
No operation that I know of I hope not to wake up with any tongue. Induction Therapy??? No I did not ask about it what is it ? what do you mean by that?

Hi Jon
induction chemo is what we talked about before where they try to shrink the size of the tumour with chemotherapy,before going on to the next stage of treatment.As for the operation,please don't worry,no one can operate on you withoput your consent and a full explanationof what they are going to do first.I know you have said you dont want surgery and that is your right,and as long as you have made your treatment choice then please dont think anyone is going to cut your tongue out withoiut your knowledge.Every one here has had their own treatmnet plan tailored to their own particular diagnosis,and its often the case that because it worked for them it is presumed it will work for everyone,but decisions are taken by receiving and processing the advice and information you get from your medical team followed by a lot of thought on your part.

I hope it all gets under way soon,but please read up about PEG tubes as a method of taking onboard nutrition and hydration if or when the radiotherapy side effects kick in and swallowiung becomes difficult.

Jon,
The sooner you can get your treatment started, the better your chances of survival are, which means returning to England is not an option unless you can get free emergency treatment. You need to figure out how to get the money to pay for the treatment in Thailand.

Does the hospital have a social worker that can help you? Do they have a long term payment plan you could use? Can you get a reduced rate? Are your doctors aware that your insurance will only cover a fraction of the cost? Can they help by doing charity work? Maybe some of your coworkers can help you with negotiating the financial ropes of how to do this in their country.

Good luck to you and I hope you can get your treatment started soon.

Take care,
Eileen

Take care,
Eileen

Jon:
Induction Therapy is a combindation of chemo drugs given prior to radiation to reduce the tumor and cancer in other sites such as lymph nodes. In my case, I had a combination of Cisplatin, 5-fu, Texatera). There are several large studies (TAX324)that show that this therapy decreases the reoccurance time and increases overall life span of the patient. In my case, the Induction Therapy reduced my main tumor 80% before the radiation. Typically, the chemo is given in 3-1 week, 2 week off cyles, and then you start radiation. Since I had Cisplatin during Induction, my doctor changed my radiation drug to Carboplatin. I tolerated it very well. It was only after all this that if my cancer was not gone, they would do surgery. Fortunately, it's gone.
Hope this helps.
Sandyst

Re the Peg, I didn't get one more from being stubborn than critical thinking but personally I wouldn't get it if I had to do over (for the first time) knowing what I know now. The Peg definitely has it's plusses in that you can get the recommended nourishment and hydration when the Tx is in high gear but it also, to me, has it's disadvantages. Very personal issue with recommendations going both ways.

Re the port, I didn't have it recommended so I never got to choose and I probably would have made the decision NOT to have one put in BUT after going thru Tx I definitely would want that sucker installed before I started Tx especially if you don't get a Peg.

Jon, Micheal jackson huh> LOL Please not that. I agree with David on the Pet but had a port until I was discharged, Hyperbaric Oxygen treatment are being put inside a glass tube, the door sealed and they give you enough oxygen to simulate a 45 ft dive in the ocean. It supposewdly could rebuild blood vessels and encourage the flesh to grow back over bare bones in the jaws and mouth. You do at least 30 of these dives and sometime more. Th Dr already said he might want 10 more. NOw you know the rest of the story. LOL These treatments last for 2 hours.

Jon,

To clarify, Jim's HBO treatments are not part of a first defense in treating oral cancer. They are used later sometimes when someone has trouble healing after surgery or upon dental treatment that involves the bone to facilitate bone growth and healing.

Just wanted you to know that with all you are dealing with, HBO treatment is not something that you need to think about now. Use your energies in learning about radiation treatment and chemo (induction or concurrent or both) and dealing with the side effects of these. I would encourage you to get the PEG tube and definitely the mediport. Both are so helpful during your treatments and both require healing that is easier to achieve before you begin treatments.

Sending strength your way as you process all the information and decisions required at this time. We all understand.

Deb