Throat Cancer stage IV

[alyx]

She has confirmed that she thinks it is not stage 4

We are going back there at 2 PM to have another ENT

[Sheryl]

This is obviously a critical question.

Get as many second opinions as you need to to clear this up.

[alyx]

As a matter of fact, we didn't go to the hospital today as he was tired and not too happy to go to the hospital

I have called the assistant to reschedule, allowing us to get prepared. Maybe sometime next couple of weeks, if nothing happens in the meanwhile

Of course it would be nice to have an nth opinion but, everywhere we are going, we are told a different story

One thing is sure: it is not stage 1 or 2

As I said, thanks to you, the situation is kind of back to "normal" for both of us. No rush, no false hope. Just a careful study of the pros and cons, not to mention the high cost of the procedure for an unknown result, and, above all, the side effects.

Still looking though, for someone to stay home when I have to go out for some hours.

That is the most difficult thing to do, and has been so for months.

[Patsycat]

Alyx, i don't have anything medical to add to this thread.

My thoughts are with you, hugs.

[alyx]

Thanks.

[cheeryble]

I also have nothing medical, no more than my best wishes, but just one question which seems relevant:

Sheryl

We have seen multiple TIAs in Alyx's partner, still happening.

What's the prognosis about them.....as it may be part of the equation about how far to go with treatment.

Sent from my iPad using ThaiVisa app

[Sheryl]

I do not know if these are TIAs, actual strokes or a mix of both. Nor the cause. Tumor emboli is one possibility (pieces of tumor breaking off and obstructing blood vessels).

So in short, I do not have enough information to comment on this; I do not even know if the cancer and the neurological problems are related .

Regardless, the overriding issue is not his neurological problems per se but rather the stage of his cancer, its aggressiveness and how responsive it is to chemo and radiation.

As long as he is conscious it makes sense to aggressively treat TIAs/stroke since not doing so would only lead to disability that would reduce the quality of life.

Whether to undertake any further treatment for the cancer is the question. At Stage IV certainly not but recently the staging has been called into question.

[alyx]

Sure thing. I wouldn't let him go on a stroke as long as I am confident he can get back to normal, which he did so many times in the past two years.

Mind you we didn't react last time he had a TIS ( I mean, he refused ) from which he recovered

Amazingly enough he is starting to get back on semi-solid food ( rice soup ) but maybe this is due to the patches

He is walking around the house and watches TV which is fine,

As weird as it seems we kind of forget about the situation butI guess we will be reminded soon enough

Not sure anymore I want to further investigate here as we get different results

Cancer and Neuro linked? Possible, as they have always found him quite young to get these strokes but I don't think so, not that it is important, now

Thank you for keeping an eye on us

[Sheryl]

By all means do forget if you can/to the extent you can so that you can enjoy the time you have. That's what it is there for.

[alyx]

From another perspective it is maybe better, than losing someone without "warning", throwing us in a state of regrets, remorse not forgetting all kind of questions never asked and, therefore, left unanswered

[Sheryl]

Absolutely. And this does happen to people.

I know a couple who suddenly and unexpectedly lost there son. The last contact the mother had with him was a quarrel. No chance to make up, no chance to say I love you, etc. Now she has to live with her last words to him, and him to her, being ones of anger.

Advanced knowledge is a gift, a chance to do and say the things you need to/want to so that when he goes, there will not be anything important left unsaid.

"Life each day as if it were your last" is good advice in theory but impossible to practice under normal conditions. but in a case where you know for sure that the end is near, you can try to do so.

Especially right now, while he is up and about, is the time to do things that he may have always wanted to but not had the time.

[alyx]

Well,to tell you the truth, in the past twenty years, we have done everything we wanted, going everywhere he liked, even though sometimes it did bother me a bit as I am not too fond of Europe as I know it by heart.

We had a wonderful summer, thinking it was over as he had a stroke on the day we were suppose to fly ( hospitalised on Saturday, discharged on Wednesday, we left the following to France, Israel, Spain and Italy ) . Everybody thought I was crazy to do/ let him do that trip

No regrets at all. It was a honeymoon

It is kind of turning to a personal blog, but what the heck...

A thing is bothering is to leave him alone, his family still not willing/ not able to support by their presence during the few hours I have to go out every day ( actually his mother might come tomorrow ) but, in the meanwhile incident can and happen as it do this evening

I am really amazed at what he did: he was alone at home when he fainted and fell on the floor, hurting his head and bleeding. He took his ID card, went to Chula ( 1 km from our home ) , has a social security issued , had his cut sewed and came back an hour later in time to welcome me home, smiling and laughing at what had happened: he had several strokes, h e has cancer, he has a burn on his foot preventing him from walking correctly, bruises due to the last TIS and, none the less he has aphasia....who on earth would be able to do that.

On one hand it is a pleasure to see how active and resourceful he his, on the other hand it does scare me as he might find the same strength when it comes to an end, prolonging unwanted pain.......

[Sheryl]

It sounds like it is high time you found someone to hire to stay with him a few hours a day.

[alyx]

Trust me, I have been trying for months

At one point his mother stayed a month or so but he had to take care of her....

Still looking though

[fletchsmile]

I was very sorry to read of your situation Alyx. There's often so much to say and yet so little to say at times like these.

I'm reminded of my mum's thoughts in a similar situation and afterwards that when people say they know how you feel that actually they don't. No two relationships are the same and yours with your husband will be special to you in ways that we will never understand. So I wouldn't presume to understand what you're going thru, but can relate to some things. A few things that came to mind and hopefully something may be of help in some small way:

Hospitals

Give Bumrungrad every chance. Sometimes doctors vary there and you get one that to you doesn't seem good, but on the whole it's the best hospital I've every come across for serious issues, and I've no hesitation about taking those I care about there. My father had bile duct cancer, and was operated on for complicated procedures and surgery in the UK. Unfortunately a few months later while on holiday in Australia he was ill which then triggered an auto-immune disease called Guillain Barre syndrome not long after he arrived in BKK. At first we thought it was a result of food poisoning he'd had, but obviously not as it deteriorated and he started to become worse. Bumrungrad were very quick to diagnose. Unfortunately this paralysed him from about shoulders down. Furthermore it weakened his immune system. The reason I raise that may be few relevant points:

The neurologist at BH said there were similarities between GB as an illness of the neuro system and some of the cancers symptoms that returned as a late stage cancer that had spread - as you raised a link between neuro and cancer - even to the extent it he could not say for 100% whether it was GB.

The treatment he got at the hospital was excellent. 4 weeks in a High Dependency Unit. Cost was about THB 2mio - as an idea of costs

As his situation was complex, it was nice to know they brought in whatever specialist was needed. He had a haematologist, neurologist, oncologist etc

In terms of equipment he had some sort of blood purifying treatment where they filter the blood and remove possible certain things before putting it back. The machine they had was very good and had 2 filters. Apparently though there was a new one on the market with 4 from Japan. So they ordered one. When someone talks of equipment just ask and push for the best. They are very proud to be a leading hospital.

So if your husband has a chance anywhere in Thailand Bumrungrad would be it.

Treatment

My father was eventually well enough to go back to the UK. The doctors suggested chemo. I was against it. Doctors said it would "improve quality of life". Seems their definition of this is based on things like blood cell counts and not extension of life. Not necessarily "quality moments" or "quality times" as we would say. He went down hill very quickly after chemo. Even his local doctor was shocked at the results. I believe it was down to an already weakened immune system. Chemo may be OK for those with a decent immune system but didn't seem to me to be a good idea for a weakened immune system. I respected my parents choice. I wouldn't have done it though.

The key choices are your husbands to make if he is able, so you have done the right thing on telling him when you think he is ready - even though you were unsure. There may be a point where telling him things will add little benefit and do more harm than good. I don't think you're there yet, and may never be. You will know though

Palliative Care

My dad had a little machine attached to him that released morphine every so often. He could even walk round with it. A nurse could adjust the dose. Don't know if they are available here or not.

Eating

Spirulina capsules or if hard to swallow, powder can be useful. It is packed with nutrients and you can make drinks with it. It allegedly has anti carcinogenic properties. I honestly don't know either way, but it is full of nutrients and can provide a way to get vitamins, minerals etc into the body.

Similarly chlorella is supposed to boost the immune system. You can buy this is small tablets too.

Chlorophyl is a good detoxifyer

Wheagrass powder to make drinks another

All these are variations on green algae. I read a lot about this when my father was ill. Whether they help cancer or not I can't prove, but I read enough to give hope, and at least they shouldn't make things worse, and may help or provide some nutrition as easy to absorb.

I take all these myself now funnily enough. I believe they do good, and maybe that's half the battle

Mixed thoughts

Unfortunately as you're finding, no matter what you do you will always wonder if you are doing the right thing. You will feel guilty. You will think maybe you should do this or that, especially in hindsight. Even simple things like feeding. Are you just prolonging things when quicker may be better or are you helping.

Please reminder there are no rights and wrongs. There are always positives and negatives of every action. Just continue to do what you do out of love and out of what you believe is best. Realistically you can't chance much either way. It's a time in life we realise we can't control some things no matter how hard we try. Kind of hard to accept as well

It's strange but even at these most negative times there will always be some positives if you look for them. He must be a very proud husband when he sees you look after him and love him. You have a chance to show how much you care. You have time to reflect together. Sometimes to really appreciate what we have, we see things clearer when there is a threat of them being taken away. This can be a precious time, even though a difficult one....

Sounds to me like you're do a fantastic job. He's a very lucky guy. As are you when I read some of the things you share. We could all be luckier though

Wish there was something more we could all do, and I hope you'd ask if there is. Please give Bumrungrad a shot and hope.

Whatever happens. I wish you both all the best.

Fletch

Edited May 6, 2014 by fletchsmile

[Sheryl]

....

My dad had a little machine attached to him that released morphine every so often. He could even walk round with it. A nurse could adjust the dose. Don't know if they are available here or not.

Not, at least not for home use. In the West these machines revolutionized palliative care, making IV morphine in the home safe.

Not here yet. Only way to get IV analgesia is to be an inpatient, unfortunately.

[Sheryl]

Trust me, I have been trying for months

At one point his mother stayed a month or so but he had to take care of her....

Still looking though

As you are in Bkk, maybe try posting in the Bkk forum to see if anyone can recommend someone?

[alyx]

How silly of me....the fact that I was looking for a Thai person made me forget they I could also ask here

I reckon it will be difficult to find the right person, given the criteria I am looking for but worth a try

Thanks

[alyx]

Hey fletchsmile

Thanks for sharing your experience and the reassuring words

Actually, I am not hoping for anything to come along as I don't expect any doctor to be able to find a side effect free solution.

Side effects which will be greater that their positive action

My "problem" is that my spouse looks well, apart from some cough, difficulty to swallow and the different bumps ( I know it is not funny but I can't refrain from smiling when I talk about the bumps as he is, has always been, like a kid when it comes to this kind of situation ) and sometimes I think that he is beating the illness which, obviously, he is not able to.

Nevertheless I think he is done going to hospitals for blood tests, negative results enquiries and seemingly useless stay there. We obviously have to consult for ( useless again ) follow up ( Neuro and palliative ) but drugs are needed...

I am thinking now that more he stays away from theses places better he will feel ( but won't be ) after so many months spent there.

Understand that I am not stating that they did a bad job ( at least in respect with the strokes as they have dealt wonderfully with it ) but, as far as cancer is concerned, I suspect they were too slow and not reactive at all ( due do the insurance matter when they thought that money was an issue)

In any case we are taking it step by step

Thank you for your support

[papa al]

Thanks. The problem is that he has difficulties to swallow due to ulcers in the throat and....he hates vegetables

But I will try

Maybe we should take this sad situation as a lesson to eat vegan and thereby avoid cancer and vascular disease?

[Sheryl]

Vegans are indeed less susceptible to those vascular diseases due to atherosclerosis but they are just as likely to get other types of vascular disease as anyone else, and they can and do also get cancer. Though it is true that some cancers are less common in people with diets high in fiber and low in red meats (don't need to be Vegan to realize that benefit - just eat lots of fruits, veggies and other fiber and red meats in very small amount.)

Throat cancer is not one of those, however Its main risk factor is smoking.

[alyx]

Thanks. The problem is that he has difficulties to swallow due to ulcers in the throat and....he hates vegetables

But I will try

Maybe we should take this sad situation as a lesson to eat vegan and thereby avoid cancer and vascular disease?

Unfortunately that message is 3 weeks old and the situation has evolved since

Nevertheless, I tend to disagree with your advice. Of course it might be more natural, more disease free, even healthier than other diets but it is the excess which kills, not so much the diet itself.

To make things a bit clearer, or more confusing, depending on the way you look at it, my spouse is Thai and has always been on a "Thai" diet, minus the fat and the sugar. He was a social smoker for four or five years ( a couple of cigarettes every other day) and stopped 15 years ago and never drank any alcohol. As for me, I don't smoke nor drink ( never have ) but I am a heavy meat eater....no side effects....go explain.

Whatever we do, it is just life. Anything happens.

Edited May 9, 2014 by alyx

[cnx37]

I do not know why I have not posted on this topic before. I have had stage throat cancer for about 5 years - DISGUSTING!

A little background - I was a "reasonable" smoker (20/day)- ceased in 1982. Then, in 1984, I joined AA - ceased drinking. I would say that I was a reasonable/heavy drinker - spirits - rum.

Then in 2008 (?), low & behold, I get cancer.

I am living in CNX. I went to RAM - referred to Suandok (RAM does not have radiotherapy facilities).

BIG CHANGES IN MY LIFE!

Initially, I did not even know I had cancer! My recollection - I went to the hospital with constipation or diahrea. Really, it does not matter now!

I had chemo once or twice - apparently unsuitable - vomiting? Radiotherapy - I had 35-40 treatments - 3 days/week? I was extremely disappointed! Why? The possible side-effects/after-effects of radiotherapy were NOT explained!

Dry mouth, sensitivity to spicy foods, inability to consume solid foods - main side-effects. The worst - dry mouth! Other - loss of at least 50% of my teeth. The dentists refused to do anything in CNX. I went to BKK on 2 occasions - possible hyperbaric treatment etc - unsuitable.

NOW - QUALITY OF LIFE IS TERRIBLE - AN UNDERSTATEMENT!

I live on vegetable soup, chocolate milk & iced tea - this has been my diet for 5 years!

Energy levels - down significantly. I used to play golf 3 days per week & go to AA 3 days per week. We would dine out regularly. ALL GONE!

Morphine - I took so much that I started hallucinating! In the end, I went back to my home country for medical assistance. To go back, I was in a wheelchair & had oxygen assistance. USELESS! But, I would not go back on morphine - a bandaid & constipation!

During that time, my "blood" family finally "ripped me off" for about B10m. (I suffer from bipolar (type 11) - this did not help matters.)

Now - no medication for either. Let nature take its course. Many times I have "prayed" for "termination" & even contacted Switzerland for the euthanasia option.

IS IT THE CANCER OR THE SIDE-EFFECTS OF RADIATION? I SUGGEST THE LATTER - BARBARIC!

Is throat cancer worse than other forms of cancer - I have no idea. It is certainly not in an ideal location.

BEST REMEDY- support from those who love you - in my case, my Thai wife. She is my most valuable asset! My biggest liability - my "blood" family! Blood sucker BUT so sanctimonious! There is no contact with these "people" - I suggest that the cancer/bipolar were catalysts - there were existing underlying problems. These brought them to the surface. In fact, my old mother - a god-fearing woman - suggests that my smoking, drinking & womanizing are responsible for this. Of course, I voluntarily chose to participate in these activities! BS!

My wife estimates that we have spent B2-3m on this "illness". What have I gained - pain & an extended life (of pain) - no thanks!

Bipolar - ruined my very successful career. Cancer ruined my retirement.

Cheers & my sympathy to fellow sufferers.

[alyx]

Il am l'ost

Do I understand that you were diagnosed five years ago?

That you are now stage....????

You are not taking any drugs ?

You are fine?

[ozsamurai]

It may seem out there, but I have read some encouraging studies on the use of human breast milk... it should be easy to find more info and obtain it certainly can't hurt to look into.

Oz

[cnx37]

alyx

I was diagnosed with stage 4!

Surgery - a no-go

Chemo - had it once or twice - a no-go

Radiotherapy - 35-40 times - too many times! I am in "remission" - so what! It is all about quality of life - I have none - at least 5 years now.

Of course, treatment is "up to you". Unfortunately, I was NOT advised of potential side-effects/after-effects! (loss of teeth, gum problems, inability to swallow solid foods etc, continuous pain).

Medication - various forms of morphine. In the end, It was not "working" & I was hallucinating.

In hindsight, it may be a wise idea to listen to that voice within.

(all this was completed in regional Thailand). Would the results have been superior elsewhere. I had 2 oncologists - one was trained at Mayo (USA)?

This calamity has been a life/soul destroyer.

All this stuff about "chin up" - "count your blessings" - it may benefit you - not me.

I have used a "12 step" program to which I belong to assist this event. Without that, it would be "lights out"!

[Lumbini]

How about massive juicing of vegetables ? I have heard juicing up to 10 to 20 pounds of juiced vegetables a day ( right ones ) in a Vertical Single Auger Slow Juicer is powerful for conditions like this but medicine does not use because it does not bring same profit as drugs and procedures to hospitals and Dr.

You have Khlong Toey one of the best markets in the world . Products here are among the best fresh vegetables, to be found for juicing anywhere and cheap . This kind of juicer and almost daily trips to this market have been life changing for me and a way to get micronutrients from real medicine in a way eating then can not provide . I not have anything like what you are dealing with but as I have studied about what to juice and how with these new style juicers I keep seeing things about the results cancer patients have with right clinics that specialize in this approach . Please PM me if I can help with this and I will tell you / show you where to buy this kind of juicer in Bangkok and what to juice and the web addresses for videos and instructions ( even meet you at market to give you tips and show you how to get them home for juicing if that would help . I am moved by the strength you both have and admire your courage and attitude . Now so many studies about mind connection to body and what seems like miraculous healing with things like mind body techniques and rebuilding body with detoxifying nutrition and micronutrients in fresh vegetables and things medicine ignores as it's not profitable .

Raw Food Treatment For Cancer - Alternative Cancer Treatments

http://www.cancertutor.com/rawfood/

What we think we become ...

Edited May 28, 2014 by Lumbini

[Sheryl]

Raw foods can be quite healthy but they do not cure cancer. Contrary to what you have "heard" there is neither a conspiracy to prevent people from getting well nor a magic cure to be found in "alternative" medicine, and encouraging people to believe there is, can be quite cruel in the long run.

[alyx]

alyx

I was diagnosed with stage 4!

Surgery - a no-go

Chemo - had it once or twice - a no-go

Radiotherapy - 35-40 times - too many times! I am in "remission" - so what! It is all about quality of life - I have none - at least 5 years now.

Of course, treatment is "up to you". Unfortunately, I was NOT advised of potential side-effects/after-effects! (loss of teeth, gum problems, inability to swallow solid foods etc, continuous pain).

Medication - various forms of morphine. In the end, It was not "working" & I was hallucinating.

In hindsight, it may be a wise idea to listen to that voice within.

(all this was completed in regional Thailand). Would the results have been superior elsewhere. I had 2 oncologists - one was trained at Mayo (USA)?

This calamity has been a life/soul destroyer.

All this stuff about "chin up" - "count your blessings" - it may benefit you - not me.

I have used a "12 step" program to which I belong to assist this event. Without that, it would be "lights out"!

Thanks for the clarification

In our case, my spouse had radiotherapy exactly ten years ago and everything was fine until the strokes a couple of years ago then a cancer classified 1/2 to the back of tongue, a couple of chemo ( 3 weeks apart ) , and a new classification to 4 two months after the first diagnosis.

But in the meantime he has had quite a good quality of life

Now we have stopped every attempt to beat the cancer

He has had several strokes coupled with epilepsia since last time I wrote on this thread

He has been in the hospital for a couple of weeks now, due to these events, recovering before being hit again. I guess he will be out busy next week if nothing happens again

Regarding the cancer he is being followed by an understanding doctor who provides him with the correct doses of patches ( he doesn't want to take pain killers nor oral morphine at the moment )

He drinks a lot, takes Ensure ( milk powder with all the calories needed ) but is unable to eat

But, overall, we are fine ( of course, I do feel better than him as I do not have my head under the guillotine but I guess he is "adjusting"

I think that I have taken a step further regarding the procedure as, when it comes to it, he will not be able to intake anything, I will decline any assistance ( intubation like ) , and ask them to stop any medicine.

[Lumbini]

Sheryl in the link I included in my first post above

Raw Food Treatment For Cancer - Alternative Cancer Treatments

http://www.cancertutor.com/rawfood/

the first paragraph said this ...

This is a very potent cancer treatment, however, it should not be used as the only cancer treatment. This protocol is generally combined, and is part of, a complete protocol and is used to flood the body with key nutrients in order to protect the non-cancerous cells ....

( Treatment , not cure )

I not say what I suggested cures anything but I stay in I don't know mind as it's more investigative than I know . Half of science is finding out what we thought we knew was wrong so let's keep an open mind and do all we can to possibly accomplish things science and medicine not recognize yet . I think you are helping so many and thank you for reminding me to include what I just did .

What we think we become ...

Edited May 28, 2014 by Lumbini