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#104021 09-22-2009 10:47 PM
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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.

Last edited by Teacher jon; 09-23-2009 04:00 AM.

"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Teacher jon #104028 09-23-2009 04:57 AM
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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


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #104035 09-23-2009 06:57 AM
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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #104041 09-23-2009 09:54 AM
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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


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #104058 09-23-2009 04:35 PM
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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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #104075 09-23-2009 10:48 PM
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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

Last edited by Teacher jon; 09-23-2009 11:02 PM.

"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Teacher jon #104080 09-24-2009 04:35 AM
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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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #104084 09-24-2009 06:07 AM
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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?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Teacher jon #104127 09-24-2009 06:54 PM
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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


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

SandySt. #104275 09-27-2009 12:08 AM
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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


"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
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