Throat Cancer stage IV

[cheeryble]

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.

+1

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[cnx37]

Re this damn throat cancer issue, I am in "remission". However, I have serious after-effects from radiotherapy. I used morphine for a number of years - now ceased. Various reasons.

PAIN -

a) very dry mouth - unquenchable thirst

sore gums

c) oral decay/pain. I have been to 2 hospitals in BKK + hospitals/dentists in CNX. They will not touch me! Suggested hyperbaric chamber - unsuitable = BIG PROBLEM!

d) living on vegetable soup & chocolate milk is not very exciting & no pain relief.

e)hospitals - more morphine, sir?

ALTERNATIVE PAIN RELIEF - RECOMMENDATIONS?

[Sheryl]

Unfortunately most of the alternatives are also opoids or opiod like drugs so might cause same problems as the morphine. Would help to know what your problems on morphine were exactly and also where the pain is. Also what other pain killers have been tried.

For sore gums/pain in the mouth you might get temporary relief from viscous lidocaine and (swish in your mouth then spit out ) - may have to get it from a doctor/hospital though, I'm not sure if it is sold OTC.

[cnx37]

I forget about the morphine situation. In the end, I was hallucinating!

Opoids - a mystery to me but prepared to try anything - somewhat wary regarding legality in LOS.

Other painkillers - I forget. Morphine was the main culprit.

My teeth & gums are "no joke" - but dental assistance is not an option - I guess that it will only get worse. 50-75% of teeth have fallen out/broken - a big mess.

BIG HELP!

[Sheryl]

Not sure why you were not suitable for hyperbaric O2? As that is often used for such situations.

As mentioned, viscous lidocaine may help your mouth/gums. It numbs them so not something you want all the time, but useful when it gets really bad.

In terms of pain killers, you might try a fentayl pathch (Durogesic and other brand names; there is a locally made GPO brand). It is also an opoid but applied to the skin, the big advantage of it is that you get a constant steady blood level rather than the spikes and troughs that come with oral medication and this in turn also usually makes it possible to go with a lower dosage.

I would suggest to start with the lowest strength which is 12 mcg/hr. You will have to get it at a hospital pharmacy, suggest you see a doctor familiar with your situation and discuss this (ask about the viscous lidocaine while you are at it, for times when your mouth/gums are really sore).

[cnx37]

Sheryl

Re hyperbaric, I went to 2 hospitals in BKK as recommended/referred by CNX RAM. Both said: No go! Who am I to debate?

Viscous lidocaine - I will try - good luck for me!

Painkillers - Fentayl patches - been there - done that. Hallucinations, acute constipation - required a trip to my home country - escort, wheelchair & oxygen. Otherwise , no go - Thai Airways. Doctors - RAM oncologist - you will know her. Suandok - they did the radiotherapy - not available at RAM - you will know her too. At RAM, I also saw the "pain specialist". All morphine was prescribed under the direction of the medical fraternity.

I have also "tried" hypnotherapy & some Indian therapy (CNX & India)- unsuccessful.

I utilised Carl's services too - Lannacare.

[Sheryl]

P.S. I forgot to mention that the fentayl patch takes a good 6 hour to start to work so if you get it do not be discouraged if you don't notice anything at first.

Also - in addition to viscous lidocaine there is a medication here called Iwazin that is also used for relief of mouth and throat pain,. And another one (same type) is called Tonsilon and comes as a lozenge that you can let dissolve slowly, which might give longer relief. Both of these contain the topical; anesthetic benzocaine.

[ding]

It might be easier, at least from my point of view, to let a parent of a certain age go. It seems "reasonable" but when it comes to your soulmate, young, kind and alert, the decision is not taken without inner turmoil.

On one hand, you feel like throwing the towel, having made some wrong decisions and, on the other hand it is rational, thanks to your support and the truth, as you are aware of the outcome.

Everyone should have a soulmate like you. Good work alyx.

[cheeryble]

Hey Alyx

Only a couple of small observations.

Sure one of Sheryl's recommendations would be better, but if you're ever caught short with sore mouth one of the types of Strepsil has Lidocaine and is much better than the others. I think repeat think it's the dark blue (on white) pack.

Regular use if these may of course bring up the issue of their sugar content and yr teeth and mouth, though is it possible their sweetener is artificial?

Second, my father had a gum disease in the army in Egypt....this would be back possibly as far as the late twenties. Never one to pussyfoot he opted to have all his teeth out in one go.

Thing is he had dentures all his life.

They looked good, no one really would know, and he was a very handsome man. They were no problem for him at all.

I'm not sure if you'd have an issue about gum healing (which may be why the dentists didn't already look at this option.)

My guess is you're giving morphine a bad rap.

Was it more likely some sort of period of withdrawal (caused by non-absorption/whatever) which caused you to feel bad.

Just would be nice if you could know you have a last resort if you need it.

Constipation can be countered by simple Meds and consumption of appropriate foods......even the soft foods you eat could perhaps be optimized. Do you get any advice over your food? Like making liquidized healthy stuff which certainly could be something to look forward to.

Anyway Alyx sympathise greatly.

Seems to me we all want people to see the world through our eyes sometimes, and you've done that well.

You also mostly beat the rap, that could be called a great victory if you can just get things to a state where you have enough enjoyment in life.....which is the detail you're going into right now may help.

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[alyx]

Hey thanks for the above posts

I guess the last one was directed at CNX37

I must say that my spouse is well taken care off at the Bkk hospital where we spend fortnight at a time with a week or so at home in the between ( but the cause is the recurrent strokes and not the cancer,...yet ) and I/we were lucky to find/meet Laksamee (the palliative physician)

[Sheryl]

Yes, the last post was fa reply to CNX37. I am not sure where he lives, if in Bangkok seeing a pain specialist such as Dr. Laksamee at Bangkok Hosp is a good idea.

[cheeryble]

Yes sorry Alyx got confused with names last post was for CNX

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[cnx37]

Thank you to all the "experts" re throat cancer. I have been an active participant of throat cancer (stage 4) for some years. I have experienced every facet of it!

As background, I had substantial doses of morphine in varied forms - patches & oral. All was provided by the most respected hospital in CNX (yes, Chiang Mai for the uneducated). I am aware of treatments for constipation. However, the dosage requirements are inexact = an inexact science.

Sheryl suggested 2 alternative painkillers/relievers - they are NOT available at pharmacies (OTC).

I have been consulting the pain specialist at RAM for a number of years. I have respect for this doctor!

"We" are trying Xylocaine* Viscous (AstraZeneca) - 20mg/ml - 1 bottle is 100ml. Cost at RAM is B586/bottle (after age discount) - free measuring spoon included. Why not try some? The taste is "vulgar" - I did not dilute it or wash it down with water etc! It has a "gluey" feel to it. Effect after 15 minurtes - improvement in pain & taste. It is more localized than morphine - I prefer Xylocaine (today)!

Incidentally, I did inquire about that "special herb" - illegal in LOS (as we all know); unavailable at hospitals under script. The staff do not have knowledge of the dosage requirements ie a no-go or contact your local drug dealer!

Several years ago, I received the best advice - learn to live with it! That is the way it is - this was from a qualified medical practitioner.

Today, I spent B2342 (after age discount- B2928 pre discount). I must be in real pain! Add B300 for the consultation fee.

If I have success with this medication, I will advise. If unsuccessful, I will advise. So far - so good.

Unless one has personal or expert experience, I would be very careful providing advice - especially on open forums.

In summary, why do we fight nature? When it is time to go, it is time to go.

[cnx37]

One BIG problem with this new medication. It was advised to take no more than 3 doses per day. So you get thirsty! Problem! OK - just take it. Taste - no change!

[alyx]

I must say that Ii have difficulties following you

Are you stage IV or are you not?

All the symptoms are due to the treatment, ( when?) you had, correct? So you are in remittance, aren't you ?

If not, are you saying that you are not being treated anymore

My spouse had radiotherapy ten years ago. He suffered a great lot, but, although he had sequels, improving with time, he has had a normal life since ( it took 4 years or so to get the taste back and his saliva ). Quite sensitive where he had radiation, but jI just had to be careful when touching this area

I guess symptoms, and their degrees, vary from one patient to another but a timeframe would help to be able to make comparisons and provide advice.

On remark though: confused too by your two last phrases

Unless one has experience ....I would be careful to give any advice: meaning? As far as I know every single post on this thread was given out of personal experience and, if not, people are trying to give solutions they think might work. I guess you know that when one is in that state, one is happy to consider any suggestions

When it's time to go, it's time to go......well, unfortunately, it depends on how one goes

[cnx37]

alyx

You have "difficulties following" me. My native tongue is English. I have tertiary education - 2 pass degrees & a masters degree (all in business/commerce/economics). I was a university lecturer& CPA.To my knowledge, this is my 1st experience re communication difficulties! So be it. My humble apologies.

Stage 1V - Yes.

Treatment - radiotherapy - ceased about 4-5 years ago (after 35-40 sessions of barbaric torture).

Remission - Yes

Current treatment - zero except attempts at pain relief. I suggest that the patient has more experience re pain relief than the carer/medico.

Advice - this topic has numerous posts from supporters, carers & partners. How much from the actual sufferers?

"Time to go"? What choices are there? Euthanasia is illegal in most countries. Do we need to travel to other countries or resort to backyard operators?

Now, full disclosure communicated to the patient. Why not? Costs to date/estimated future costs? Prospects? Future probabilities? Who gets to make the decisions ie quality decisions? Quality value judgments re quality of life? Carer v patient? I suggest that the patient should have ALL the say (a veto) & receive a FULL disclosure. From what I read, this does not apply in many cases. SHAME! Most sufferers are adult (in age). I choose not to be treated as an infant.

I assume that I am in the wrong forum. This is one for "carers" - patting each other on the back? Yes, I will back off. You may have good intentions - outcomes?

I understand cancer pain. You have "carer's pain"? Your partner has "cancer pain"? No same, same!

There seems to be a lot written about medication, diet etc. The holistic approach?

In my previous country, my mother & sister became "instant experts"! Boring, ignorant & negative! Knowledge does not necessarily correlate with experience & wisdom. Here, in LOS, my carers have a quality that the "blood family" has not - listening.

Am I somewhat "touchy" on this issue? YES!

I have "wanted" to die for years - not now - I am neutral. What is so bad/wrong with dying? Not much in here about this "important" issue?

If I had received full disclosure from the beginning, I would not have taken this path.

It seems that many carers/medicos are obsessed with keeping the "poor bastard' alive - @ any cost!

Time to stand back? Look at the "big picture"?

I am confident that I have said MORE than enough. Sorry, sorry.

[cnx37]

Apologies alyx

I have "wasted" about 1 hour trying to refine the above post. Mission accomplished. Exit - "Sorry you do not have permission to do that". Not my day? Maybe I will try again - maybe I won't.

a) I expanded upon my business experience

disclosure to patients

c) support - "close" & self-help groups

d) cost (for me) - procedures

[alyx]

Wowww....you are quite angry but we are not responsible for the way you feel you have been, wrongly, treated.

Don't be too touchy about the fact that I have difficulties understanding, as this has nothing to do with the way you are writing but rather with informations I didn't seem to be able to put together ( I wouldn't challenge your grammar or semantic as I am not a native speaker )

To set the record straight regarding the position of the carer and the sufferer: I have lived twenty years with someone who has been through so many illnesses that I cannot recall how many times he cheated death.

Maybe the persons who tried to help you did seem to be bossy and taking things in their hands but I am sure they did it out of love or because it was the only way, in their mind, to deal with it at the time. You are saying that you hadn't been informed about everything: trust me, it goes the same way for your entourage who get conflicting statement and guidance from the medical staff or friends.

I agree that I will never understand ( I hope) the level of pain, but my goal is to prevent these pains at all costs.

Although I am not happy with some of the physicians' behaviour, involved in the past in my spouse's condition, I cannot say that we have not been informed about everything from the start ( of course not about the side effects of every treatment: he went to radiotherapy as he would have taken a walk in the park and I was pushing him in. I would have been told about this before I might have discussed with him the possibility to let it be, but, sincerely, now, I am happy he did go through as we have had a good life, yes, so did he)

Do I decide for him: yes, and no. As long as he is able and willing to take any treatment ( understand that he is being treated for strokes ) I will push in that direction but the days he is too weak or unwilling to go on with it I will do everything in my power to let him pass away peacefully and painlessly ( as in, I will try and find all options to relieve any pain but I will not haste his end as I want to be at his sides as much and as long as possible, which, in a way. Is kind of selfish )

Do note that my spouse has aphasia and this has worsened in the last couple of weeks as he is unable to speak the correct words and it is quite challenging, by moments to translate his thoughts, but, one thing is sure, he knows what he wants, and above all what he doesn't want. It does scare me a bit as he has full consciousness of what is going on, and every time he refuses to do something or wants to indicate something, it turns out that he is right.

In any case, although you might no agree, I am quite thankful of all the answers and advices given by the "carers" on this thread.

Not only, did it help me to ( kind of ) come to terms ( at least I hope ) , with a difficult situation, beforehand, but above all, it did allow me to finsd some answers to my spouse's physical pain, as well as foresee the path we were engaging.

I have stopped hoping but, paradoxically, it has made me feel better, although I cannot refrain from feeling guilt. I just hope that my spouse does feel the same ( not about the guilt obviously )

Don't let my questions ( earlier on ), answers or remarks upset you as it is not my intention to offend you: I just need to understand to whom I am talking.

[alyx]

On more thing though: from experience, things have changed a lot in Thailand in twenty years regarding the doctor/ patient relationship.

I must admit I have challenged quite a few physicians, and even insulted the head of oncology department at Siriraj, literally shouted at him in front of a hundred of patients and nurses ( that is another story but that episode allowed my spouse to go through with the treatment this guy was denying him because, on the hundred pages of report, a slice of the biopsy performed abroad was missing, slice we never had as this wasn't/ (isn't ?)standard procedure over there: I just went straight to the person in charge with the hospital )

Nowadays, in Bangkok international hospitals you do have a different generation of doctors who do not consider themselves as almighty ( well, they are still afraid to take decisions against their colleagues but that will eventuslly evolve positively ) and tend to keep you informed.

[n210mp]

With all due respect to those who have posted helpful and empathizing posts.

The way that the thread has run has surely been dictated by those who have added posts and are mainly in line with the original posters, first post.

I understand and empathize that the thread may be taken into other areas that the OP may consider away from the ethos of her first post.

This is normal on any public forum.

The effects of a thread such as this means that people who are suffering indeed as a victim of a possible terminal illness or sometimes worse as the loving carers of a victim of such a disease are going to be deeply affected and some patience and understanding should be shown especially to those who may not "Fit in " with the "posting" that has up to now been so helpful to those faced with a similar situation.

I strongly urge those who have contributed so much to this thread to continue to do so and understand what this thread can mean for all those people who have similar concerns whether they be Carers or sufferers.

Sometimes a cry for help can be seen as a direct attack and it pays to read maybe between the lines and think before making any riposte!

alyx I can imagine what your spouse is like from your many remarks about his general character, Indeed I feel that I may well have met him at different times in my life when I have been impressed by the persons humility, kindness and sensitivity, sounds as though you have been with a good man for quite a while now. He is obviously well matched in having a partner like you.

In your thread you have shown your love and devotion and mentioned about your spouses attitude whilst undergoing all these problems

I suggest that you have a relationship made in heaven and your personal sense of love and care shines through this thread just like a ray of sunshine on an overcast day.

The response to your OP has stimulated and brought the best out in so many posters and indeed has given some of us thought as to what the future as in store for us.

I hope that when (inevitably) some thing happens which disrupts and destroys my lifestyle I can achieve 50% of your conscientious love care and support for your spouse.

I have not posted before on this thread because I consider that I had nothing of any meaning to add although in the past have gone through similar overwhelming events but need to mention my deep appreciation to Sheryl and others for their loving supportive posts which reminded me that there are some pretty wonderful people in this world and many on Thai Visa.

[Sheryl]

Abusive and/or incoherent posts havce been removed along with replies to same.

[loppylugs1]

This will be a tourist hospital no doubt,along with other sites that are first up on a search of cancer hospitals in India,plenty of regional hospitals offering the same,but at far cheaper options.

Just an idea My friend was making travel plans to attend cancer hospital in India,but it overwhelmed him quite quickly and he died last year,gees I miss him

Cancer Treatment India, Cost of Cancer Treatment, Oncology in India.htm

[cnx37]

loppylugs1

I, too, researched the Indian option. Too many options (for me). I did take a trip - open mind. Outcome - not as expected.

[cnx37]

n210mp

The 1st 50% of your post - I entirely support. The 2nd 50% - we may need to agree to disagree.

[Tywais]

A post complaining about moderation has been removed. If you have an issue than contact the moderator by PM as outlined in the forum rules. Further such comments will result in a posting suspension.

[loppylugs1]

loppylugs1

I, too, researched the Indian option. Too many options (for me). I did take a trip - open mind. Outcome - not as expected.

Agree,far too many options,overwhelmed by the amount of hospitals,but I did seek out a few GP's for opinions on various hospitals whilst there.

Long and the short I am now waiving my leg around at a price of $700 instead of a price tag of $20,000

[cnx37]

loppylugs1

Good luck - I have spent B2-3m (LOS & Oz). Outcome - not as expected.

[alyx]

I must have missed something: where does this Indian trail come from?

What is being compared? Quality of treatment or its cost?

In any case, there so many options given ( or not, depending on the stage ) that it is difficult to have a pattern

One thing is sure, every time I have spoken to someone who has dealt with this kind of situations ( patient and carer alike ) the answer has been invariably the same: "watch the expenses, you can, and will, be left without a penny before you realise it"

N210mp quite a nice and well written post. Thanks

[Tolley]

Well if money was not a huge issue I think it is a no brainer to go to the German/Swiss cancer clinics.

They are expensive but they combine western medicine with naturopathic non invasive non harmful treatments to optimise patient comfort and patient outcomes.

[n210mp]

n210mp

The 1st 50% of your post - I entirely support. The 2nd 50% - we may need to agree to disagree.

Thanks for the 50% then and

As ever my glass is half full.

There are Many men (and women) of different minds and many birds of different kinds, so many ways to the top of the Mountain