Hi All,

I�m new here, I have just been Informed I have �base of the tongue cancer� and I hope you guys are going to help me live as long as possible� with a good quality of health. With all the latest Information you can give me.

I am a teacher in Thailand after going bankrupt in the UK /England some years ago and could not find work while in my 50s/60 I had a friend working as a teacher in Thailand, he said come here you and get a job teaching, I did and I just love it.

All was great until 8 weeks ago, when I found an ulcer at the back of my throat, I sorted it out with Antibiotics, then a week later my lymph node swelled, I went to the hospital in Bangkok, very good Bumrangrad Hospital, after having a MRI scan, to be told last Saturday, I have a mass at the back of my tongue.

I have a choice, Cut out my tongue and voice box, I�m now 64 no thank you, or Radiation and chemo treatments.

I have read about this treatment working well, http://www.ncbi.nlm.nih.gov/pubmed/18528311 have any one here heard of it and know I it will help me, I do not think they can give it to me in the UK where I will have to have treatment soon, as my medical Insurance is basic and runs out soon, in Thailand and I have only the wages I make each month no savings.

I wonder if anyone has had this, the doctor did say it may be the HMV Virus, so I do not know, if what looks like half the base of my tongue, mass on the MRI scan, can be treated at all.
Please help.

Thanks for any help you can give me.

jon. I am sure that you will get a lot of answers here as many of us or should I say most have had these rpoblems, You wil need a very good ENT and Oncologist to take you thru this long and painful process, I am a little older than you at 73 and have been going thru this for 3 years and still fighting, but am alive and mouthy . Go back to the UK where the treatments wil better benefit you and there is much More experience dealing with this than where you are at the present time. I have you in my prayers and thoughts. I am sure you will be hearing from a lot of survivors very soon. Jim

Jon,

Of course we'll be here, that's what this site is all about.

If you were in the US I would definitely tell you to get another opinion from a Comprehensive Cancer Center (CCC) but over there I doubt that's possible. My main concern and yours to is the recommendation for BOT to cut that part of the tongue out and now your saying the voice box as well. Certainly I'm not a doctor and you haven't been more specific about the actual Dx but that part of the Tx seems so drastic. For example with BOT and 2 nodes positive I was told by 3 different cancer docs that they wanted to do a ND (from radical to partial) and 2 cancer docs said no ND. None of them however ever mention surgery to my tongue. I ended up choosing Moffitt, a CCC, to do my Tx because I viewed them as the most knowledgeable with a team approach and it didn't hurt that they also gave me the best chance of survival and with the least invasive Tx.

I wish I could help more.

Jon,
How many doctors are on your team? Here at CCC centers we have at least a surgeon, an RO and MO. Surgeons tend to recommend surgery since that is what they do. Do you have an RO? What do they say about radiation and chemo vs surgery?

Since the surgery they are recommending is SO drastic quality of life wise, does this surgeon think he can really get all of it? Is he recommending radiation afterwards?

I too think you should get a second opinion. How good is the place that is recommending surgery? Is it one of the top centers in Thailand? If not, I'd get to one.

Take care,
Eileen

At Ohio State James CCC there were a few more thna 3 Drs and they checked even your toenails LOL or so it seemed'
JeffL had the same team I did there and he can fill in the blanks much better than I can.

Thanks guys as I am trying to get a list of questions to ask the doctors here, this and any Information and ammo you can give me will be most wonderful, ill answer your questions below best I can, but I have not got the biopsy yet until Saturday, I know it will be bad though. my lymph node is swelling a little bit more daily and the doctor says it will may be go to the right one soon also, that dose not sound good.

EzJim. Go back to the UK where the treatments wil better benefit you and there is much More experience dealing with this than where you are at the present time. I have you in my prayers and thoughts. I am sure you will be hearing from a lot of survivors very soon. Jim

Jon says :- Thanks Jim for your kind words all these survivor stories are heart warming and give me hope to not wait to die with kindness but to stand up and fight to the end, the problem I have is finding the right doctors in the know and I will have to go back to the UK for that even so the Bumrungrad Hospital is world famous and many American s come there for treatment as its not only the best hospital in Thailand it has the best faculties in Asia, and 1/3 of the price less than the western Hospital

davidcpa says.
My main concern and yours to is the recommendation for BOT to cut that part of the tongue out and now your saying the voice box as well. Certainly I'm not a doctor and you haven't been more specific about the actual Dx but that part of the Tx seems so drastic. For example with BOT and 2 nodes positive I was told by 3 different cancer docs that they wanted to do a ND (from radical to partial) and 2 cancer docs said no ND. None of them however ever mention surgery to my tongue. I ended up choosing Moffitt, a CCC, to do my Tx because I viewed them as the most knowledgeable with a team approach and it didn't hurt that they also gave me the best chance of survival and with the least invasive Tx. davidcpa

Jon says :- Yes davecpa after looking at the various forums around the world, it would seem if they gave me any of the paclitaxel, ifosfamide, and cisplatinum drugs which would you recommend, plus chemo and may be radiation, is there different chemo�s and radiation names, what ones did you have Dave, can you let me know what ND stands for, I cant see it in the abbreviations. I would not go for cutting out my tongue and voice box anyway, it just seems to drastic, to give you any quality of life, after the operation.

Eileen says.
How many doctors are on your team? Here at CCC centers we have at least a surgeon, an RO and MO. Surgeons tend to recommend surgery since that is what they do. Do you have an RO? What do they say about radiation and chemo vs surgery? [/i]

Since the surgery they are recommending is SO drastic quality of life wise, does this surgeon think he can really get all of it? Is he recommending radiation afterwards?

I too think you should get a second opinion. How good is the place that is recommending surgery? Is it one of the top centers in Thailand? If not, I'd get to one. Eileen

Jon Says :- Hi Eileen, I have a surgeon RO so far I have to go Saturday to see the radiation lady to see what she is going to suggest, I�m trying to get enough Information so I can give it to her about cisplatinum drugs and if they have found there way here, yet. Would you recommend this drug for my BOT cancer and my swollen lymph node? I�m at the top Hospital in Asia as I said above so if they cant sort it out no one can here but as many have told me, they recommend totally cutting out my tongue, to start with it has put me off . I�m thinking may be they are not up-to-date with the latest treatments for this illness and when they said it may be HPV but was not interested in confirming it this also made me wonder, I don�t know if it is any easier to treat HPV rather than normal cancerous area in the BOT so can any one tell me.

Looking forward to your knowledge and fast experience her guys� thank you may be you are not only educating me but the best hospital in Asia lol

Jon. I never realized or imagined a great Hospital in Thailand and I imagine that is never hearing about it until now. As they say, listen , read and learn daily. Thanks Jon and good luck.

Jon,

First ND = Neck Dissection which can range from Radical where they take all the nodes on one side and muscles, nerves and blood vessels to Partial where they may only take the confirmed nodes.

Re HPV, there have been at least 2 recent studies that have confirmed that HPV+ SCC responds better to existing Tx and therefore has a less chance for recurrence.

Re chemo, I had Cisplatin which is still the most widely used chemo to ASSIST the radiation.

Re radiation, it's the ONLY thing that will kill active SCC cancer cells. They usually recommend adding chemo if there has been nodal involvement and they will usually say that the chemo will add another 20% or so to the kill rate by effectively making the cancer cells more easily killed by the radiation. Usually chemo is never given alone unless they are trying to "clean up" post radiation or you reach a terminal stage.

Re totally cutting out your tongue, I WOULD RUN FAR AWAY FROM THAT HOSPITAL unless your primary BOT is massive.

Why can't you go back to the UK and get free medical care?

Jon:
You have been given excellent advice from memebers of this site. I too believe that the operation they recommend is too drastic.

I was diagnosed with BOT cancer in January. The tumor was too large to operate for quality of life purposes.
I did some research and convinced my doctors' to do "Induction Therapy." I had Cisplatin, 5-FU and Docetaxel, but I think there are several combinations. There was a very large study done (500-800 patients) called TAX323 and TAX324 that showed excellent results. The Therapy reduced my primary tumor about 80%. After Induction Therapy, I did 7 weeks of Tomotherapy radiation. Tomotherapy is a IMRT machine that is able to very closely target the tumor and avoid healthy tissues. I tolerated each treatment very well, but typically most patients experience more side effects. I was the lucky one.
Unfortunately, I'm just 3 months out of treatment so I can't give you any long term prognosis as yet.

Your doctor may be able to download the study from www.nejm.org.

One other note: In Europe, I am told, that there are companies that will test the biopsy against OC chemo drugs to see determine which drugs would be most effective.

Hope this helps
Sandyst

EzJim Jon. I never realized or imagined a great Hospital in Thailand and I imagine that is never hearing about it until now. As they say, listen , read and learn daily. Thanks Jon and good luck.

Jon says: - Yes they have a very good name but how advanced with all the latest Up to date Drugs on the markets I don�t know but I have not heard of any complaints even though I�m sure they have all the normal problems all hospitals have when you�re dealing with Human error. http://www.bumrungrad.com/

davidcpa Jon,

First ND = Neck Dissection which can range from Radical where they take all the nodes on one side and muscles, nerves and blood vessels to Partial where they may only take the confirmed nodes.

Jon says:- What would you do if they say they want to take out my lymph node, which seem to have added a third larger in the last 2 weeks.end

Re HPV, there have been at least 2 recent studies that have confirmed that HPV+ SCC responds better to existing Tx and therefore has a less chance for recurrence.

Jon Says:- They have not taken a biopsy for HPV it was just something the doctor told me when he gave me the reasons for contracting this Base of Tongue cancer with left side swollen LN end

Re chemo, I had Cisplatin which is still the most widely used chemo to ASSIST the radiation.

Re radiation, it's the ONLY thing that will kill active SCC cancer cells. They usually recommend adding chemo if there has been nodal involvement and they will usually say that the chemo will add another 20% or so to the kill rate by effectively making the cancer cells more easily killed by the radiation. Usually chemo is never given alone unless they are trying to "clean up" post radiation or you reach a terminal stage.

Jon says :- So is there any new drugs they can use with radiation and Chemo with less side effects as Cisplatin has been around since 1967 surely they have more advance drugs since then. end

Re totally cutting out your tongue, I WOULD RUN FAR AWAY FROM THAT HOSPITAL unless your primary BOT is massive.

Jon says :- Yes that�s what I thought but the mass seems to be half the base of my tongue even though I can not feel any symptoms yet apart from my left jaw Lymph node massing fast 2� X 2� now. Do you know about these drugs http://clinicaltrials.gov/show/NCT00273546 end

Why can't you go back to the UK and get free medical care?

Jon says: - as I have lived in Thailand for more than 3 months a year, It is dubious if I have any entitlement to free NHS in UK now. Also I have nothing in the Uk even my friends are now living in Thailand now, about 20 of them from UK, this is the new Spain and with a wonderful climate and great cost of living, it�s really paradise, also I have had to spend my saving, on medical treatment as Insurance only pays 80% . So if I did get back to Uk Id have nowhere to stay as I make my living in Thailand as a teacher and when I leave the job or can�t work owing to Chemo or anything that stops me talking I�m stranded here with next to nothing so I have to be careful. One wrong move and I�m in a dangerous position without the cancer so lots to think about, you did ask?
Living in a non-bilateral healthcare agreement country?
If you choose to go and live permanently (or for more than 3 months each year) in a country with which the UK does not have a bilateral health agreement, then you will not normally be eligible
for free NHS hospital treatment during a visit to the UK, no matter how long you may have lived here in the past.

_________________________
on:
SandySt.You have been given excellent advice from memebers of this site. I too believe that the operation they recommend is too drastic.

I was diagnosed with BOT cancer in January. The tumor was too large to operate for quality of life purposes.
I did some research and convinced my doctors' to do "Induction Therapy." I had Cisplatin, 5-FU and Docetaxel, but I think there are several combinations. There was a very large study done (500-800 patients) called TAX323 and TAX324 that showed excellent results. The Therapy reduced my primary tumor about 80%. After Induction Therapy, I did 7 weeks of Tomotherapy radiation. Tomotherapy is a IMRT machine that is able to very closely target the tumor and avoid healthy tissues. I tolerated each treatment very well, but typically most patients experience more side effects. I was the lucky one.
Unfortunately, I'm just 3 months out of treatment so I can't give you any long term prognosis as yet.

Your doctor may be able to download the study from www.nejm.org.

Jon says :- Yes interesting Info, but I wonder what the doctor would say here If I tried to tell him all the latest treatments, did you have any problems with sickness and chemo what are the best drugs as I have a mass on my lymph node now does that make it any more dangerous or is there a chance of still shrinking the Node and cancer at the BOT. do you think my swollen node will get larger quick end

One other note: In Europe, I am told, that there are companies that will test the biopsy against OC chemo drugs to see determine which drugs would be most effective.

Hope this helps
Sandy

Jon,

Again, let's wait and see what the path report says. You will have time to make the necessary decisions.

A few things though:

HPV can only be tested from confirmed Squamous Cell (SCC) cancer cells but a typical HPV profile, if you will is:

1. white male
2. Non smoker
3. Multiple sexual partners in one's lifetime
4. Base of tongue or tonsil Primary
5. Met to the nodes
6. College educated
7. Handsome (that's my unbiased addition)lol

The same study concluded that if you fit that profile, your chances of your SCC being HPV+ was appx 70%.

No Cisplatin is still the poison of choice even though it's cousin, Carboplatin, seems to be just as effective but without the fear of permanent hearing loss.

RE ND and tongue surgery, I would need more info before I would make that decision....like DO I HAVE CANCER for starters.

Yes I am all the above so I�m sure I have HPV.

I am very fit and never smoked and even feel great now, but after I have taken the poison and been zapped by the Chemo and radiation, I have no idea what I�ll feel like and being on my own how will I eat and look after myself, if I do go back to the Uk, Yuk!

hOW DID YOU FEEL WITH THE CHEMO AND RADIATION?

HOW DID YOU FEEL WITH THE CHEMO AND RADIATION?

Short answer....The worst in my life!

Long answer.....Let's wait and see if you have cancer and then, and only then, you can be tested for HPV.

Jon:
Your oncologist should already know about these drugs. If he doesn't, please get someone else. There hasn't been much advancement in treatment for OCF until just recently. And that's only been improved radiation machines, and a couple new drugs. And any doctor who cares about his OCF patients quality of life should be pretty up to date on these things.

Concerning induction: Induction historically has been used for the most advanced OC cases Stage 3 & 4 with lymph node involvment. But now the treatment is used more frequently as it shows an improvement in survival rates and reoccurance rate. My tumor was large, but I did't have lymph node involvement. I still had to convince my doctor to do this treatment-showing him info I found on this web. I felt it was my life at stake, and I wanted the most aggressive treatment available.

Everyone's side effects are different. Some severe, and others, like me, breeze through, but doctor's have great medicine to help. They can also adjust the drugs if necessary.

Hope this helps
Sandyst

Jon you will do fine on your own unless you have a mind set that you need help. I have been alone and survived it. I'm still alone and do whatever is needed to keep me up and moving. It is far better to have a caregiver at times but it's a doable proposition. The main thing is to never feel sorry for yourself but be glad you are alive and still kicking.

Thanks for your info, do you think that because my left hand jaw Lymph node is swelling and throbing some times its a bad sign that the cancer is a fast growing type, do you think the Node can still be shrunk now its growing and my BOT can be shrunk also with a chance of stopping the spead.

Hi, Jon,

My husband's cancer was in the tonsillar, base of tongue, pterygoid muscle area.It was pretty close to his vocal cords as well. All of these areas have squamous cells. He was stage 1Vb (based on size of tumor and areas affected) and he had 1 positive lypmph node and the possibility of a second. It sounded so serious but try to visualize it this way- the areas I have mentioned have similar types of tissue and the cancer doesn't say - oh, no- I'm on the edge of the tonsil so I can't go any further and need to stop (sorry but that is one way to think about how types of cancer that thrive in squamous cells don't "respect" the boundaries that we use to describe adjacent parts of our body). The more serious aspect to the spread of his tumor beyond the tonsil was that you couldn't simply take out the tonsil- so surgery would be very destructive to function. On the other hand, the chemo/radiation combo was directed to the entire area and he ended up not even needing surgery to remove lymph nodes. He did have induction chemo (as did SandySt and BobWhyte just to name two others) due to the size of the tumor and the belief that he might have a better outcome.

Back to your question above- lymph node pain and swelling is often one of the first major symptom that people with BOT and tonsil area cancer experience. Now that you are aware of symptoms, they will seem to get worse pretty quickly and waiting for treatment to begin is very scary. I thought my husband's wait was excruciating and worried about how it would affect his outcome. But I agree with what everyone has been telling you. Your cancer has been growing for some time and you now need to take the time to develop and find the best treatment plan and team that you can. You do have time to do this.

Take care- Sophie

Hi Guys,

Yes I have just had it confirmed, I have moderate squamous cancer of half the base of my tongue and I have a 50/50 chance of surviving for 5 years, as I�m fit and 64 the doctor says, I should be able to tolerate the Chemo, Radiation, treatment and I have to see the Radiation doctor Saturday, Im going to bed now and try to take all this in.

What now do you think, any advise it has not all sunk in yet, I don�t think and my lymph node is aching a lot and swelling.

Help!!! What do you think will happen from start to finish.

Kind regards
JOHN

Jon, sorry about the diagnosis, it stinks! Take to your bed today but tomorrow start rallying and prepare for battle.
Take a friend or family member with you to your appts because it's hard to remember everything they tell you. Write everything down, ask lots of questions. Are you going to a comprehensive cancer center? It also doesn't hurt to get a second or third opinion so you can make the best decision for you. Eat well, get yourself buffed up for the treatment ahead.
This will be the worst 6-7 mos of your life but then it will pass. Keep us posted. We're all here for you.
nancy

Hey John

well now you know.Everything i said to you before still applies.Are you coming back to the UK?

If you do if i am within spitting distance i will do anything i can to help.Rest for now and come out fighting.

Jon,
Did they give you a TNM staging and discuss their finding regarding advanced staging characteristic such as extra capsular spread(you might need a PET/CT for this), nerve or structural invasive considerations?

50/50 really isn't what you want to hear so you need to get ready for a fight and have a team and CCC that can take you all the way.

What is their proposed treatment plan, optional consideration and why.

Is the BOT tumor surgically resectionable and/or can they shrink it first with an induction chemo cocktail.

Is this Thailand Cancer Center affiliated with a major US or European CCC's?
Do they follow the multidisciplinary approach - tumor board, etc..?
Are they well regarded and do they have the up-to-date world class expertise and technology in Head & Neck cancer treatment?
Do they see and treat at least a couple hundred cases a year?
Can or should you return to the UK?

I would also suggest you have them test your slides for HPV, although I understand that NORMALLY HPV expresses obvious and large lymph nodes before the primary get big and invasive.

Jon,

I was given a 60% 5 year survival rate by the first cancer doc that saw me post Dx. He was an ENT that did the fine needle aspiration.

It may help to know if HPV is the culprit.

So the surgery is now out?

When are they going to start the chemo/rad?

What type of chemo...Cisplatin, Carboplatin?

What type of rad...IMRT?

Ask about a PEG tube.

Ask about a port.

Look for the vast majority of oral cancer patients the concurrent chemo rad treatment, while not a pleasant thing to go through, is none the less doable as you can tell by all of us still here posting. The most important thing is keeping up with the necessary daily calories and hydration and we definitely tell everyone to start eating everything in site now before the Tx starts. Also keeping a POSITIVE mental outlook can not be anything but helpful during the 7 weeks of Tx and the recovery. We will be here throughout and available 24/7 so don't ever hesitate to ask us anything.

David,
Can concurrent chemo/rad handle tumors in this size range?

I have no idea what, if any, size limits are placed on radiation and BOT primaries. If I were you I would get to Europe's equivalent of a CCC and get another eval and I would do it ASAP.

David,
I was to told about 2cm density can be effectively handled by radiation alone, but different cancers react differently and I don't know if this is correct for HNSCC.

I understand it has to do with the way the core of a solid tumor sustains a state of protective hypoxia which the treatment plan must be able to overcome.

I don't know the effective density that concurrent chemo/rad therapy would add, but I thought for large tumors they first use induction chemo to shrink the tumor and then they use chemo-rad and/or surgery.

I think with large solid tumors in structures like BOT they also have to consider the void that might be left after sterilization by RT.

Well at last I have had the meeting with my dream team, who hope to now cure me or at least give me a 70% chance of 5 years minimum, amazing if I have the money ............They say now the 50/50 chance is if I go back to the UK where I would have to stay from more than 6 months, before I can see a Doctor free, as I have been out of the Country more than 2 years, then I would only be put on a long waiting list, may be 18 months, so then I could be dead, in 18 months, with this fast growing cancer, do it now and a cure can be given, they say! or 70% as I said.

They intend to give me Pet CT.
By making a Simulation to the shape of my face
For the IMRT Tom, to do its work,then they will put all the information into a Computer, to size it all up and the computer then does the operation in theory, all most Space age, then it will line up all the points, for the Tomo Therapy, may be what you guys have had done.

The team says because it has not metastasized, they can hopefully help me, but if I leave it may be not.

This Bumrungrad Hospital is World Class, and has all the latest treatments. all the latest equipment paid for by Dubai Arabs and Mr Taxin the ex Prime Minister, I was told.

http://www.bumrungrad.com/overseas-medical-care/medical-services/overview.aspx

The only problem I have is my medical insurance is very small and I only have minimal money coming in from Teaching here, the doctor said he has other teachers having this treatment, and has done many over the years, it�s not easy, but you can work with it, as in Thailand no work no Job. no Money.

So with that worry and I have to have a week in hospital, so that should be ok. So the first problem is finding the 12000 dollars it might cost, as insurance will only pay less than 1/6 of that, and then make sure my school will let me have 7 weeks of afternoons off...

The doctor said also I have T2 ... N2 stage, whatever that means. And the MIR says its moderate cancer. But looking at others with T1 I'm wondering if im kidding my self or the hospital is

Any advise please! As you can imagine, I�m in a daze with all this information, the doctor was so impressed I knew all the questions to ask. Thanks so many guys.

My ONCOLOGIST was trained by Dr Clifford Chao in Huston Texas.
http://www.weillcornell.org/physician/kscchao/index.html

I am so happy to hear that you have met the "dream team" and that there are other teachers undergoing treatment at the same hospital. The idea of going back to the UK is not good at all. Stay in Thailand and get that treatment going as soon as possible.

Connie

Thank you walldoe

Chemo...of choice is .Cisplatin, they say Carboplatin has not good out come with this; they can use Evbitux but expensive and only less side effects, so not so good, at 3 times more expensive?

Yes unless I have to, I will not be going back to Uk unless I can get this treatment as an emergency. free.

Jon,
You can find a lot of answers by searching this OCF site. There is a 'search function' located at the bottom of the pages. If you search for say 'staging' it will take you to that topic.

If your doctors say that you will need to spend a week in the hospital then is it correct they plan to use surgery to first remove the BOT tumor (a glossectomy procedure) and probably a neck dissection to remove affect lymph nodes followed by chemo/rad using concurrent Cisplatin with TomoTherapy?

TomoTherapy is an excellent modern IGRT-IMRT system and assuming good treatment planning should deliver as good an outcome as technologically available.

Tomo does seem to be a bit easier to tolerate, but this varies significantly based on individual response and treatment planning. Concurrent Chemo can add more complications.

With all that said, Tomo or not, It is not likely that you will be able to work all the way through this (even a limited schedule).

I was fine the first month or so, but the last week of treatment and for two weeks after, working was out of the picture. I was sick the last few day of treatment then totally exhausted for about two weeks. And... I had it easy.

So, hope for the best, but plan for the norm and have some friends and/or family lined up to help you get through this.

Your staging T and N numbers are easy to understand. You can find most of the information you need right on the main body of the web site,

http://oralcancerfoundation.org/facts/stages_cancer.htm

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

Hi guys, I'm Pleased to say my brother has helped save my life, he�s most amazing man, with sending me the money that the Bupa Insurance would not pay, what's the point of having Insurance if it won�t pay for all Illnesses, no wonder American people are being conned into believing there system of being controlled by big Drug companies is the best, when 47 million Americans can�t get treatment at all, what a joke, cant they see through these Drug Companies, it�s amazing to the rest of the western Countries.

As I am going to have to somehow go back to work, with this treatment, I will not be able to have a Peg, as I�m a Teacher, if I don�t, I will be out of a job, a home and the country I love to live in. Do you think I can manage to work with this treatment?

The doctor said I will not lose my hair how many of you guys lost their hair, do you think my throat will swell so I can�t eat or swallow or may be breath.

The doctor said I have to be 7 weeks having this treatment including one week in hospital what do you think the week in hospital is for did any of you have this.

Those he did not have a Peg did you find it ok to swallow and take in liquids ok.

Jon,

Don't get me started on our health care. There may be millions of people in the US without health care insurance but IMO most don't opt to pay for it and then jump on the bandwagon and scream when they need it. I have many, if not all, of my employees that play the lottery EVERY DAY throwing away as much as $20 A DAY and they won't buy health insurance of any kind. Then they get sick and they loin others complaining about the lack of available health care in the US. Even then we do have many programs that still give assistance to these people. IMOO (in my other opinion) we have far far far to many people in this country that don't want to work and feel somehow that just being here they are entitled to be taken care of by those of us that think it's our responsibility to take care of ourselves.

I'm with you David...

Shelley

David;
Where the hell was I supposed to come up with $850 per month for COBRA when I got laid off. Our health insurance in this country is a crime. We should be ashaimed that we are the only industrialized nation that allows insurance companies to make billions while letting people die. I now owe the hospital $70000 because I got laid off right before I was diagnosed.

Jon;

I had no PEG. Swallowing was very hard. Meals were quite a bit of work. I ate several small meals mainly because I would get tired from chewing and swallowing. My cancer was my tonsil, so I do not know how swallowing would differ for BOT.

I only lost hair where the radiain hit. My beard fell out, and I had a very strange hair line on the back of my neck.

Jon
why does being a teacher mean you cant have a PEG?.It is just a short tube that tucks down your trousers.No one will know and you will have more of a chance of staying at work with it than without.

Jon;
The things that would have made it hard for me to work were, energy level and for a little over a month I could not speak above a whisper. If you can sit while teaching you can probably get by.
I had to take time off because the only available work was an 8 hour drive away.

Jon,
The are really no restriction imposed by a PEG (unless you are a swimming instructor).

IMO, You probably have a better chance working through much of this is you get a PEG. Assuming no other complications (like intense nausea) the PEG can really simplify nutrition and hydration difficulties.

I don't think you will be able to work all the way through your treatment and the first recovery month, but you might make it through most of it.

I think TomoTherapy might make it a bit easier, but it still is really a roll of dice and individual response is an huge variable.

Letting you know, being a teacher, many of us lost our voice the last week of Treatment and for about a week after.

I have no idea why they plan to hospitalize you for a week. The only reason I was in the hospital was for surgery.

David: I'll vote for you!!!
Sandy

Jon:
You will not lose all your hair if you are doing a combination of chemo (usually Cisplatin) and radiation. The only hair loss is on the back of your head at the base of your ears. This never grows back, but can be disguised by growing your hair longer int he back.

If you do Induction Therapy, you will lose your hair. It will grow back, but probably will be curly. It starts growing back almost immediately.

Sandyst

I also agree with David on this healthcare issue. Unless it is free, most of these uninsured will not bother to get it. When I have asked some of the uninsured that work for my mother who can afford it, why they have no insurance and the answer I get is 'Why do I want to buy insurance? If I get sick, I just go to the emergency room'. You would think they would at least buy disaster coverage. But there is always money for cell phones, cable TV, HD LCD TV's etc. Insurance or free treatment for the truly poor does make sense, but that is not where they are going.

Eileen

Jon,
I would talk with your team to see what they think about needing the Peg and how long you will be able to work. It seems they use the Peg less often in the Asian countries than we do here. If you are going to try it without the Peg, you will have to be very determined to get 48oz water down daily and 5 or 6 cans of whatever is availble as nutrition. Do you know what is available and how many calories each can has? You most likely will not be able to eat real food after the first couple of weeks so whether you drink it or use the Peg, you will be on a high protein drink for at least four weeks and maybe longer.

As to working, how much talking do you have to do? Discuss this also with your medical team. Everyone has different reactions to this treatment. They are a very few that get through without a Peg and can work, but it's not a lot of us. Considering its location, you may lose your voice for a few weeks. Your medical team should have the best idea of how well you will do. I hope you are one of the lucky ones.

Glad your brother is able to help you financially. That is one worry down and now you can get on with your treatment. Let us know what the treatment plan is when you get it.

Take care,
Eileen

Jon,

Next to Jim and Brian, lol, I am probably as stubborn a person as you will talk to. Now as I said I didn't get the PEG and believe me it was tough to swallow so I didn't get the daily calories or water I needed. So days would go by and I would grow weaker and become dehydrated which led to ER visits and unbelievable nausea making it even more difficult to get nourishment even if I swallowed so kinda like a snowball it just got worse and worse. I really doubt you will be able to teach either way you go. Not many of us are able to.

Jon

I was just dumb and did not get the PEG the first time I had cancer. However, I did force enough calories down each and every day by sipping Ensure, then rinsing with seltzer water. I never got dehydrated, never had to go to the ER, never needed any treatment by the hospital for anything. I kept full swallowing ability something I worried about if I got the Peg. It have been easier with the PEG though based on my experience this second time with cancer.
As to work, I was fortunate that I could work "virtually" through a secure encrypted server from home through my TX. Plus I had a Blackberry and speaker phone for the meetings which were mostly phone conferences anyway since they were nationwide. When I actually had to show up at the workplace after TX, it was too brutal and I retired early,
Best wishes and good luck
charm

Wow now I know how to get a response, just speak about something controversial, such as a completely free national Health Service, for genuine cases, with the sick and the non workers protected, as in Canada and Europe and all the rest paying for it, giving a small amount from their income, the more you earn the more you pay, as in the rest of the world, Including CUBA.

If you look at how much the American tax payers puts towards the health plans now and then look at what it would cost, if the majority was paying the minimum amount, according to what you can afford, you would have the best system in the world just look how the others manage it, then make yours better, in my humble opinion;)

So if you need a minimum of 3 pints of water a day how often do you drink it so as not to drown yourself?

How much of the nutrition drink is it best to take how many calories do I need to sustain a very good amount to live a good healthy life.

As I am a teacher and will be allowed off in the afternoons to take this treatment I will be expected to teach and talk will it become Impossible at all do you think.

Is Ensure or Carnation VHC Breakfast, nourishing drinks, the best, what�s the best for the most calories, how many do I need a day., at the most. Where would I get seltzer water, is it the same Alca Selzer aspirin drink.

To tell you the truth, I don�t really want a PEG unless I have to, as I�m totally terrified of being put under with an anesthetic,as my best friend died, who seems quite healthy with one. Do they give you a general for this or can it be done with a local.

If I was forced to have a PEG how much drink or nourishments do you take by the hour or when do you drink and eat with it.

Jon,

If our health system or any welfare system we pay for was ONLY for the people that TRULY deserved our help then I'm not against it in principal. Problem is at least here in the US that our current welfare systems take care of millions and millions of people that are able to work and should be working but choose to let THE SYSTEM care for them and their babies while their babies' daddies, usually multiple, get off scott free. Oh and the baby daddies usually sell drugs and avoid paying taxes altogether also. These same people seem to always have money for cars, cell phones, nails, etc while we, the hard working taxpayers, pay for their food, rent, health care, education and even clothing.

Anyway on to your real questions:

Re the water: I figured out that I needed to drink 6 cans of VHC and 6 glasses of water a day. I then divided those up into my new normal waking hours and figured I had to drink at least 1 can or glass every hour. When I felt up to it I would drink 2 to get ahead but often I would drink something and then toss it right back up. Hurt like hell going down and even worse coming right back up. Bear in mind that the worst of my Tx was from about the 5th week in to the 3rd week post Tx with the worst being the weeks POST Tx.

Re calories: I would shoot for 3000 per day and yes any of the VHC types are nutritionally balanced and perfect to sustain you through your Tx and recovery. I drank the VHC for over a year past my Tx.

I hope you are one of the ones that can work during Tx. I had full intentions to do so but I was out of it for about 2 months and even then had to slowly return to a full day's work.

Hi Jon,

I have been following your thread .

My husband had the PEG tube put in just before radiation treatment. He was resistent to it at first but is very glad he did it. From the fourth week of Tx and then for many months afterward that was the ONLY way he could get his nutrition. It is different for everyone. One of the radiation oncs told us that once you begin Tx, it is optimal to finish it without any breaks. She explained that if my husband started to lose weight, the mask would not fit and then he'd eventually have to get the PEG in the middle of Tx anyway.

He has maintained his swallowing by eating by mouth as well, but he just can't get all his nutritional requirements by mouth alone. He mouth and jaw become tired and his mouth still gets very sore.

When you are healing, you need to take in many more calories than you normally do. Your body requires more for tissue repair and to fight infection.

BTW, my husband still has the PEG almost 2 years out. No one can see it. He supplements 1 to 2 meals a day with it. Since the rad Tx, unfortunately, he has had numerous infections. This PEG has been a lifesaver for him.

He is getting ready to have his jaw rebuilt in a big procedure in November. The Plastic Surgeon was happy to hear that he still had his PEG as he will need it.

Clark wanted to remove the Peg beginning of last June. But when he stopped using it, he lost more weight. That scared him.

I wish you well in your treatment. You might ask your docs what the back up plan will be if you do not have the PEG and you have some feeding issues in the middle of Tx.

As for energy levels, Clark was wiped out most days during Tx and took long naps. He still gets very tired at the end of the day.

All the best--
Anita

you dont need and anaesthetic to have a PEG fitted.Rob had his done under sedtaion and he didnt feel a thing.

Jon

Ditto on DavidCPA's comments. Seltzer water is just plain water with carbon dioxide, H20 plus CO2. It has nothing to do with Alkaseltzer. It is similar to tonic water but without the quinine.
My peg was put in with just some percocet and zero anesthesia, I have not heard of anyone who goes under for just a PEG, so Cookey (Liz) sounds exactly right to me,
Charm

Jon,

If you have plans to have a mediport put in, please consider having the PEG put in as well during the same surgery. No harm done if you don't need it, but chances are about week three you will start having pain that is very tough and eating will become a chore. Most people here required major pain medications such as morphine and fentanyl during the last couple of weeks of treatment and the first few afterwards.

Getting the PEG tube as an afterthought will be harder as your body is depleted from the chemo/radiation treatments so one more assault will be very hard. You can work with both the PEG tube and the mediport and no one will be the wiser.

Wishing you luck slugging thru all these decisions...when we tell you what we think, we also know that nothing about this is easy.

Deb

Jon, I would strongly recommend that you consider the peg, you only need light sedation to put it in, it takes maybe 5".
It's small so you can't even notice it. As the others have said you need to get lots of calories, fluids, and nutrients in order to stay healthy through treatment and to heal. You will be healthier and recover quicker if you are in good shape nutritionally. Your throat and swallowing will be affected and it will be extremely difficult to eat and drink enough . My husband didn't want one and thought he could tough it out, by week three he was a hurting puppy and wgt was starting to plummet so he got one, but not willingly. You will need it after treatment is over as well, The weeks after treatment seemed to be the toughest.

Just be prepared that you probably won't be able to work every day towards the end and even after treatment, this is grueling treatment and you will feel like hell. If you're teaching you will be exposed to all those kids with all kinds of nasty bugs, (not sure if you have the H1N1 over there) but you need to limit your exposure since you will be compromised.

Good luck, start fattening up now. you'll get through it

Hi guys thanks for your wonderful feedback, can you tell me, is it the same procedure for PEG AND PORT can you have them put in at the same time, is the Port only for drugs or what. Is the PEG a big hole you put only fluids in, can I drink Pineapple, just as they are fresh off the trees here and so nice to drink. What fluids should I be drinking and not drinking, can I still use my mouth and throat to eat and drink when able too, and use my PEG as a backup.

How many of you get bad nausea and does the drugs control it, nothing to make you feel worst then being sick, how can I stop the sickness.
Is it common to get thrush in the mouth, if so, how do you minimize that? do many of you get joint pains I get that now when I wake up, at 64 lol do you suggest I put on 40 lbs before I have the treatment, what I�m worried about is my one lymph node in my neck that is swelling a bit more each week, is a sign of the cancer spreading fast around my body, how fast did your node swell and was it painful if so how did you stop the pain. or throb sometimes in my case in the mornings mainly.

Did many of you use this fake spit, Stoppers, spray, I don�t know if I can get it from here, you know any on line website sales for this? Did any of you use the Biotene GUM< GEL<MOUTH WASH, did you find it works well. What did you use for keeping fluid in your mouth�.Have any of you use the aquaphor ointment for your burning neck rad.

What did you find the best treatment to stop the nausea, is there tablets or oral medicine?

Jon, slow down some and use logic for some things. Such as whole pinea[[le from the tree into your stomache thru a tube. I don't think so. Yes it will be nice if you put on a few pounds in order to cover what you will lose. I lost 70 lbs and didn't hve a peg, but maybe should have had one. That wasover 2 years ago when I had the dissection and surgery. I went fro 220 down to 147 which is a few more than 70. I had just gotten back up to 180 and a Cat Scn showed that I had an Abdominal Aortic Aneurysm reocurrence, The Surgeon did manage to repair the upper half of it, waiting for the right time to do the bottom yet. I went back down to 160 and am now at 174. As for biotene products and aquaphor, I used both and still use the mouth wash a few times a day. Yes Biotene products do help with the moisture. Use the tooth paste to brush with and if like me , the teeth had to go, brush the tongue and inside of your mouth.The Aquaphor I used all the time and my shin was almost normal about 3 weeks after the surgery. As for nausea, I was lucky and never had that feeling. maybe because I only had liquids. I think it would be best if you stopped worrying and wondering, but take it as it happens. Keep an upbeat mind set if you can and it remember, happy thoughts are much easier to handle. Good luck Jon and you will handle this depending on your outlook. Jim-=-- email me with questions if you want and I will try to answer your questions.

Hi Exjim as I am alone in a foreign country and do not have a care net work here, I have to look deep into the things that could happen before they do, so as to have all the spit gel, stoppers and Gum, plus The Aquaphor ready, rather than trying to find it, when I�m deep in nausea and feeling very ill.

I am hoping to have these things sent to me via the internet so I need to know where to buy stoppers, as they are not even on the internet, I need to know how to buy the Biotene products, have them sent and buy many of the carnation VHC breakfast drinks.

Also I have an added problem, that I must be working, because I am a teacher here, more than 6 days off in any semester you�re out, no matter what, so I have to be very careful, to keep as well as possible and at least be seen in the mornings, even if I feel to bad, I can sometime slink off in the afternoons, so as you can see, any advice you can give me would be so much help in the predicament, I find myself in, even though I love living here and working in Thailand, because when my business went bankrupt, in the last recession I could not find work, in the UK England when in my 60s, here I can and have a dream life and job in a wonderful country.

So if I�m feeling sick, I need sickness medicine, where I can get to it, if my joints are in pain, I need this medicine nearby, if my mouth is dry I need the Biotene, where I can find it, not have to go to pharmacy�s looking, to see if they stock it in this country and it takes 3 weeks to get here.

So any advice you think I will need, to stock up on and any good web sites, you know where I can have it sent to Thailand I would surely appreciate it ..any pain ki;;ers you know of or any other side affects to be ready for thanks.

my main worry at the momnet while Im waiting to have the treatment is this left lymph node is swelling and quite hard now and feels like an alian stuck to the side of my neck and making a thobbing feeling form time to time. do you think it means the cancer is now spredding all over my body and is getting to a stage where they cant traet it or is this normal.

I hope you now understand.

Jon

Jon,

The port and Peg can be placed at the same surgery if your doctor/surgeon agree.

The port is a device that is place into your upper chest area near the clavicle. It is totally under the skin so it stays sterile. With each chemo treatment or even to have blood drawn, you will get a "stick" thru the skin and into the port. It is minimally painful and the infusion nurses are great about applying an anesthetic topically to numb the area. Bill actually had a cream that he could apply an hour before his "stick" that would numb the area so, no pain. Once into the port, a small IV tubing is placed to usually, first draw blood and then to infuse you. Chemo is fairly hard on your arm veins so the port keeps the nurses from having to find a good vein each time they need blood or need to administer chemo drugs.
The PEG is placed into your belly. There are pictures here on the OCF main website that show a PEG tube. You can continue to eat and drink by mouth with the PEG and as a matter of routine you should continue to swallow something several times a day even if you are totally eating by way of the PEG tube. Liquid supplements and water are put thru the PEG tube in several ways: You can simply pour it in with a wide syringe base, you can push it in with a plunger into the syringe, or there is a machine that you can hook up to that will feed you over a long period of time..say when you are sleeping.

RE: the pineapple juice. You can continue to drink the juice as long as your mouth can handle it. Since it is so acidic, I suspect that a few weeks into treatment, you might not be able to tolerate it. If you feel like it is something that your body needs, you could pour it thru the Peg as long as it is not too chunky.

Hope this helps,

Deb

Thats wonderful, debandbill, just part of what I needed to know. thank you I take everything at a stage at a time, so it does not all come over me, as to much information, but for some reason at this time, I am interested to know all in advance, that will help me, may be my body thinks its some one else that is going to have this treatment, until I do that is lol

Jon;

I did not get the port. The last three chemo treatments were hard on the arm since my veins were very hard to find by that point.

Jon,
Has your medical team sent you for a dental evaluation?

It is important to have any dental work done before starting radiation.

Once your radiation treatments start, and from then on, you will need to apply fluoride to your teeth daily. Most of us are fitted with fluoride trays for this.

Going into treatment, it seems to be good to be a bit overweight. I was told to try to add ten pounds. Every week I had an appointment with a dietitian who double checked my weight and made adjustments for constipation and the like.

You might want to see if your medical team includes a dental group and dietitians.

FYI, My liquid PEG nutrition was called Nutren 1.0 with fiber. It is made by Nestle. Although it only has 250 calories per can they said at eight cans a day I got both the calories and liquid hydration I needed. Hydration is very important.

Jevity is also real common. Some like Nutren 2.0 and Carnation Breakfast VHC-560 that pack twice the calories, but it needs to be diluted to get down a PEG.

Just drinking this stuff, the Carnation tasted the best to me, but by week four nothing tasted good (horrible taste). Some people apparently lose their taste completely, so in that case it probably doesn't matter.

If you don't get a PEG, I recommend you try to get the Carnation VHC (360 or 560

Since I was always able to drink water or juice and eat soft stuff like pudding, I never managed all eight cans -- usually just six.

Jon, I will look for email addresses for the companys that make these products and pm them to you. They will know if there are the products available there for you. I understand you now and what you are saying.

Jon:
You can buy all of the Biotene products through www.dentist.com
I would definitely buy the toothpaste and toothbrush. When I was going through treatment, the flavoring of other brands of toothpaste was just too strong for my mouth.

Also, Biotene's soft toothbrush is softer than any you will find in a drugstore, and it's extremely helpful especially when you're mouth starts getting sore.

I used Aquaphor when my neck was first becoming red and sore while going through radiation. Late, I was given a prescription for 1% silver Sulfadiazine Cream for more sever burns.

Hope this helps
Sandyst

You can buy the tooth brushes in the OCF web store at a very competitive price.... Help yourself and help the foundation at the same time.

JOn , as promised here are the Company email address. www,biotene.com ... this is manufactured about 70 miles from my home and ...www.Eucerin.com... I hope this can aid in your finding out if these are sold in your country.. Jim

Ok thank you EzJim, the problem I have, no one in Thailand sells these products and I need 180 cans of Carnation VHC Nutrition Instant Breakfast 560 drinks, a month, at 33 dollars for 24.
or this nutrition drink it was called Nutren 1.0 with fiber. It is made by Nestle. Although it only has 250 calories per can they said at eight cans a day,, I will need both the calories and liquid hydration. Hydration is very important.

Also EAS daily nutrition choc drink, plus many Biotene products, I have written to see if the sell or send, to Thailand, but I don�t think so.

Stoppers fake spit is a must, but I cant get it any where, any one know how i can buy it,
xylocain spray to help with eating I have to get , hydnocidine for thrush in case I get it , aquaphor ointment to rub on radiation burns, cant even get baking soda to gargle with.

I have to also buy feroglobin which has iron and vitamins B12 and other stuff to raise my blood count, you can�t even get Seltzer water here to clear the flem from your throat, when you think you�re going to stop breathing.

Also, Biotene's soft toothbrushs, is softer, Brian does this web site ship to Thailand, if you sell all these products above, I�d use you to buy them all. and youc an ship them to me here.

Ill also see how I can get florid, to put on my teeth who sells that by the way.

So being here I get nothing free, I have to pay for everything as you see.

I may have to come to some deal with my brother and sister, in law, who is an angel, the whole family are ooozing with love if only i could be there, may be they can get it shipped over here somehow.... I only wish I could have this treatment in Canada, but I�m in the best place for it here, if I can afford it, as they are very good at this hospital.

DonB No mention of seeing a dentist yet and I would not be able to afford one any way as I know there is 3 teeth that need coming out, why is it so Impotent, can you let me know the reason .

Thanks for your wonderful support this is amazing stuff.

Jon,
For the dental issues, there are much more technically knowledgeable forum members who can give you better advise than I can, but after radiation the blood supply in the jaw bone is diminished so dental problems becomes a nightmare.

I take it you can not buy things over the Internet?

Can the hospital's pharmacy help you get some of this?

Have you asked your medical team how the other patients going through this treatment at this hospital get what they need?

Also, if you can find a source for getting Biotene products you might not need 'Stoppers'. Biotene makes a dry mouth spray, mouthwash and toothpaste (I have heard their mouthwash also works fine as a dry mouth spray).

Jon:

Another website you may want to try is www.drugstore.com.

Also, have you talked to any of your doctors or nurses about these products. They should have some experience with this and be able to help you.

Jon,
Just a FYI, keeping in mind that everyone's response and treatment plan is different, this was my experience with the meds, Tomo and stuff.

Dental - the CCC dental group gave me several soft 'baby' toothbrushes and Biotene sample-kits (mouthwash, oral balance, toothpaste, etc.. I just used the Biotene toothpaste with a 'baby' toothbrush (nothing else).

Dry Mouth/Spit - My CCC team told me to expect bouts of dry mouth for about a year. I drank water or juice (apple, grape, etc..) and I often rinsed my mouth out with a teaspoon of baking soda, plus a teaspoon a salt added to a glass of warm water. Dry mouth was worse at night and I took a glass of water to bed.

Pain - I used Hydrocodone-APAP Solution (generic for Lortab) for mouth/throat pain. I needed very little since the bad pain was after my surgery not during radiation.

Eating Pain - I never opened my bottle of Lidocaine. Before it became all that painful to swallow, I quit eating solid food due to the terrible taste and started use my PEG.

Burn - The CCC gave me Biafine and Aloe Vesta for radiation burn, but I bought Aquaphor at a local drug store and preferred it as an overnight ointment.

Liquid Diet - I used Nutren 1.0 (with fiber) through the PEG. The CCC prescribed and supplied the Nutren. I was also told to either drink or PEG a glass of plum/prune juice a day to help prevent constipation and to keep drinking as much as I could by mouth in order to help sustain swallowing function. I also ate at least two pudding cups a day.

Nausea - The CCC gave me some Kytril 1.2mg tablets as a standby med for nausea and when that didn't work they switch to Compro 25mg suppositories then to Zofran. I only had bad nausea the week, but it got real bad and I had to be re-hydrated with a couple of IV's.

Mucous - I never had really bad mucous and around the fourth week of treatments they had me start taking a dose of Robitussin DM daily through the PEG to help minimize it. Robitussin is a non-prescription cough suppressant/expectorant that I got at the local drug store.

Most of my meds were liquid, so they could be taken through the PEG, but even pills can be crushed and put down a PEG.

Jon,
You need to talk to your medical team and find out what the equivalent products are that they use in Thailand. I'm certain they must have something for peg tubs, nausea, etc. Thrush medicine and most pain and nausea meds are prescription so your doctors there should be prescribing it. Biafine is also a prescription cream for radiation burns so you would need a script for that from the doctor and have to fill it locally.

If you have teeth that need to be pulled, they need to come out before radiation. Otherwise you will need 40 hyperbaric oxygen treatments afterwards before they can pull the teeth. These are not cheap either.

As for working, you may lose your voice or only have a whisper for a week or two. Can you possibly tape or video tape now the classes that you would have to teach the 5th -9th weeks of treatment? How much talking do you have to do during a normal teaching day. You say you ar teaching English. At what age or grade level are these kids?

When do your treatments start? Are you getting tomotherapy? What chemo drug will they use? Are they planning surgery after the radiation? If so, the normal hospital stay for a neck dissection is 5 days and you usually can't go back to work for a week or so. I went back to a desk job on day 8 and paid for it with a lot of pain.

I understand your need to be prepared but you should at least attempt to find out people use locally. You might even find that some of those products are better than what is available in the US. Do you have a starting date?

Take care,
Eileen

Jon, I've just been reading this thread. I have only dealt with this as a caregiver to my Mom but wanted to pass along my best wishes for you as you go through this tough journey. My mother did not get a port - it was not offered to her. We definitely learned a lesson there as it would have made it so much easier for her. Towards the end of her treatment they had an extremely hard time getting into her veins. She did have a PEG inserted after dropping to 94 lbs. and losing her swallowing capability to the point where they were concerned she would aspirate. She is now maintaining and is up to 96 lbs. I have to say that you have certainly come to a wonderful place for advice. There are so many people here who can and are helping you. Thank goodness there is a place like this. Keep gathering the helpful info and caring support. Be positive!!!

Listen to Nancy... I did mine alone and spent way too much time back tracking for information and not asking the right questions. Write everything down that is bothering you and ask questions and ask them again until you understand the answers.

Hmmm. My GP was the first to call my cancer and all he said was I needed to get good with God.
Mine turned out as stage 2 and no nodes affected. I didn;t like what I was told and what I was not smart enough to ask throughout my cancer experience, but the CCC approach, the cancer board reviews and the back forth the board had pinpointing the extent of cell damage and invasion was important. It saved me part of my jaw because one doctor stood up to the others not believing my cancer had spread to my jaw. It hadn't.
Praying tonight for Teacher Jon

Weird stray from the issue here. People would prefer t work in my mind. MAny have seen the hoplessness of how our economy changed in the 70s. Corporations kept the money that was normally shared with emplyees and it hasn't changed. We are forced to live beyond our means and in debt to have the things our parents had. It can become a hopeless state. Single Payer Health and get the Money out of Politics is my space.

Absolutely

Hi Guys, I have been away for a week, so many thanks for all your responses, I have taken them all on board and will be going for my first Major meeting with the Hospital team, that will be looking after me and see where we go from here, tomorrow, I dont think or at least I hopeIi'm not having anything taken out, but for some strange reason I'm sure I heard him say ill be in hospital for a week, I have no idea till tomorrow, why though.

Ill ask all the questions you have put up for me and I hope it all works out that I can continue to work and I get better, because if I can't work and I loose my job. Ill be out the country fast, to no mans land, as I have no home in the UK and they do not give free National health service if you have been a way more that 3 months,

One thing I would like to know is it a big problem, that the Neck node has massed to twice is size and is egg size now. I only hope that they can still fight back the cancer.

Lets see what your team says tomorrow.

Unfortunately I get one step forward and two back living here, what I thought was the total package for my treatment and my brother has kindly sent the balance of the treatment money all he has, it turns out now, that was only for the first part of the treatment, The PET-CT and now they want to know where the balance of the money is coming from, before they start the treatment, I said we will have to first see what BUPA will pay, the very minimal, judging by the previous amount they offered, for the PET I expect, then we can proceed.

So now I need the money for a 5 day stay in hospital for Chemo, as the lymph node has doubled in a month its so fast growing. so they would have to monitor the Chemo in hospital for any side affects as this needs drastic Chemo first for a week.

Then IMRT Radiation therapy, combined with chemo, with the PET scan to evaluate the extent of the cancer now, with IMRT treatment planning.

So as you see, I am now very worried, because he also added if the treatment does not start soon, it could get passed the stage where it is treatable, at the moment he says, he is still able to kill the cancer cells in my body.

So if I cant get the balance, I'm a dead man, as others have told me, while your waiting to be treated in the UK you die, if you have not lived there for a few years, as I have not, the funny thing is as from january, I have enough money monthly coming into pay off any bill, but no one can borrow money here. if I wait that long, he said with the speed of the cancer, Id be a dead man waiting.

So just waiting to see my fate, like a man in the death cell, quite frightening really. so this is a new one fo you guys, not that any one can help with this sort of problem, it sure feels good to air it.

By the way any one know of a charitable trust, who would lend me a few thousand to save my life, i could pay it back quick, no one I know here have any spare money lol

I know I'm deaming or is it some sort of a night mare, I;m not waking up from, hopfully it will work out some how, time will tell, thanks for listening any way, sorry I'm a bit dizzy with it all at the moment, Please forgive me as you know when it hits you, its all a very strange terrifying feeling. with being alone now also, its all a bit hard to take in.

I'm sorry for you delimnia, if you were in Florida I could help in getting you financial assistance. Have you taken your story to your employers? How about local churches or charities?

No my school are only workers, they are not the charitable types here, my be some place you can go but I dont know of any here, sorry to say, thanks for your kind understanding, I was thinking it was very bad of me to mention it, just makes me feel better, I can tell my family here, all your problems, not that you can do much, but give love and understanding.



Thank you for that I do need it at this time.

Contact the American Cancer Society. http://www.cancer.org. I think they could help you find resources. No one should have to forgo the treatment they need due to finances

Jon,
Is there some social service program at the hospital that can help you around this problem? How much additional money do you need? You indicated it was a few thousand. I can't imagine that amount covering 5 days in the hospital even in Thailand.

Does the doctor know you do not have the money or any way to get it? You need to get treatment started right away or they won't be able to treat you as you said. Isn't there anyone at the hospital that help you through this bureaucratic mess?

I assume paying this back in January means you must keep your job and you are already going to be out 5 days at the beginning treatment. It's going to be real rough to be out only one more day.

I pray you find a way out of this problem real soon. Don't they do any charity in Thailand if you promise to try to pay them back?

Take care,
Eileen

Hi again thanks for your wonderful help,

misskate I have contacted cancer.org

To see if there is anything that can help an Englishman, in his hour of need, as I can�t get help there, it�s a long shot they may know some billionaire who helps deserving cases, so ill have to wait and see.

Hi Eileen,

No the Hospital I go to, Bunrungrad, Bangkok, is mainly for Rich Arabs and millionaires, this hospital is run on the lines of cedars sinai hospital L.A but is probably up to a third cheaper, for the same treatment, so as you can imagine many Americans and other well healed people come here. They are the only hospital with have all the latest treatments here so this is the reason I went there, But in Thailand they don�t cater for charitable trust that I know of.

Yes the doctor does no I have only what I earn and it is not enough even though ill have about 800 pounds a month to put to any loan but can�t get a loan here.

Jon,
You might want to call the British Embassy and see if they can help you find a solution.

Your Embassy might also have connections within the British NHS that under the circumstances can bend a few rules that would let you get back to Great Britain for treatment ASAP.

Also there are a number of charitable foundations in GB that might be of some help such as MacMillian ( www.macmillian.org.uk ), but I suggest you see if your Embassy will coordinate this for you.

Funny you should mention the British Embassy it was their representative who told me he has quite a few similar people, who went back to have to wait at least 6 months to see a doctor, as the new rules say if you have been out of the Country more than 3 months you have to pay, as they have had enough or people abusing the system.

Mac Millian only help with filling in financial forms, can not help with money and thats only when I get to the Uk.

Yes I have look at most Avenues. The British Embassy is one of the only ones, who do not get involved with personal problems Germany and other yes.

Thank you for your kind Imput.

Teacher Jon

Jon,
Can you go back to GB and get treated ASAP if you agree to pay what you can when you can?

If so that might be your best option and I believe not a lot different than what happens with many uninsured and under-insured here in the States.

I don't know what my treatment cost, since it has been paid by my medical insurance, but I have heard amounts on these forums of upwards of $150K. They might bill less for an uninsured person and/or in the UK.

Looking at your options, I would think incurring the debt is worth it and if you look at it from another perspective, over a ~35 year career, in present day dollars, I have spent nearly $200K for medical insurance!

I few year back, remember how I was always bitching about the medical insurance costing more than the lease on my BMW!

Hi guys sorry I brought up the fact I did not have to money to continue here, as I feel it has blurred the wonderful help, you are so good at.

But the latest news is I have my best friend here who investigated other options and he found a Government Teaching university Cancer Hospital in Bangkok, that can give me similar treatment with out all the extras,

I went to be interviewed by the team there, after saying my lymph node has got as large as they feel safe 6 cm and there are signs of the other Node now starting to be affected I must have treatment now.

The down side is they want around $10000US but I can pay this over 7 weeks lol I may be able to find 2/3rds of this money my self but still a 1/3 short I had to agree to start treatment on the 7th November with Chemo in Hospital for 4 days from 14th November this is so urgent now I have no option to go back to UK will take weeks to sort out.

I did grill all the team of doctors as they looked like talented 30 year old Thai/chinese Star Students , but when I asked about all the latest studies TAX 323/4 they knew all about it, they will be using Cisplantin and then may be Docetaxel, saying may be ill loose my hair which i was told at the other hospital would not happen did any one else loose there hair with back of tongue chemo Rad treatment..

Well John it looks like there is some light at the end of the tunnel at last,and a definate start date which is great.Iwould worry less about what might happen,and prepare yourself for what is definately going to happen.For every question about side effects that you post here you will get half a dozen different answeres its not one size fits all treatment.

Ask your doctors all the questions you need answering before you go into treatment,and then just get your mind set for the ride.

good luck my friend and keep in touch.

love Liz.

Thanks so much Cookey, getting over the shock of it a bit now, problem here is I dont have the back up you just cant get Carnation VHC here so dont know how im going to swallow food or any of the Biotene products with seems to be the minimum I will need they say the give PEG through the Nose or it will cost to much money for me but I cant work like that.

What can I expect after a few weeks chemo/Radiation does the sickness pass or does the medicine work to stop it.

did you have to have a few days in hospital they say at this hospital they dont give you all the Chemo at once as they do at the other Hospital the stage it. dont know if its better or what.