Throat Cancer stage IV

[alyx]

Hey

Just got to read your answer after Lakasanee came to see us but it is roughly what I asked her

Incidentally she enquired about the cover ( as they all do here )

She is starting him on Pramadol 4 times a day for 24 hrs to check the impact

If everything is ok she will switch to the patch which is good news

I also enquired about homestay: no problems prescribing the patches but no injection

This hospital does not take care of patients at home but that is ok

She talked about lollipop fentanyl not available here but surely findable in Europe ?

She talked about radiotherapy but she stood back when I told her that the (only) team at the BKK hp refused to give further treatment....

I also saw his ENT, this morning, to whom I have shown the slides made in Singapore: she genuinely looked shocked at the rapid progression of the tumour as in "there was no tumour there last month"

Agressive tumour + poor immune system might be the reason which makes me think that the chemo might be responsible for this ( paranoid ? But a bit late anyway and guilt is everything but constructive in these cases, I guess)

[Sheryl]

An aggressive tumor, yes. The chemo if it had been effective would have slowed the growth since chemo is more lethal to cancer cells normal cells (though toxic to them as well). Obviously it was not effective but no way to have known that in advance. In any case with an aggressive tumor that is not responsive to chemo, rapid growth was inevitable, even if he had declined chemo it would not have prevented this so no need to feel guilty.

Very good that you can get the fentanyl patch prescribed. I am not surprised to hear no to injectable though it would not hurt to have the same conversation with the pain specialist at Samitivej I previously mentioned.

Given that the tumor is aggressive, it may not be long before it is fully occluding his throat. First it will prevent swallowing of solid food, then liquids -- both of those things can be dealt with through a gastrostomy tube a previously mentioned, which also has some advantages in terms of providing a means of giving any type of palliative oral medication that might be needed (in addition to pain meds, may be a need for sedatives to relieve anxiety, medications that dry up respiratory secretions, and laxatives to address the constipation the pain meds are likely to cause).

However after he becomes unable to swallow even liquids it will not be much longer before the tumor blocks his ability to get in enough air. At that point if taken to a hospital they will want to put in a tracheostomy (hole in his throat) below the point of the blockage if possible. It would be good to think ahead as to whether or not to agree to that. It would be permanent and would make it impossible to speak, though some people manage to say a few words by temporarily blocking the hole with their finger. He'd need either to be hospitalized or to have nurses to come to the house to change the inner tube (it gets encrusted with mucus) and also need suctioning through it, all not very pleasant. The alternative is to refuse the tube and increase dose of opioids which in addition to controlling pain have the effect of alleviating the anxiety that otherwise comes with not getting enough air -- morphine especially does this, enabling people to die peacefully even though they are in effect slowly suffocating.

It may seem cruel and shocking to not intervene to enable someone to get in enough air to breathe but frankly even with a tracheostomy, the tumor will eventually grow all around it and still block the throat, all it does is drag the process out longer and the quality of the additional time gained is not very good.

I am sorry to write such painful things but this is the reality that lies ahead and unfortunately you are dealing with this in a country which does not have modern hospice programs of the type you'd have available to you in the West, so the brunt of this sort of decision making is going to be on you -- Thai hospitals might not even think of suggesting not putting in the tube as an alternative. Finding the best palliative care specialist you can as soon as you can, and making that person his primary doctor from here on out would be wise so that at least you'd have some support in such decisions. From what you report I sense you still haven't found that person.

As you can tell from what I just described the final days may be challenging and you may want to consider the option of transferring him to a hospital when it gets to that point, but if so it is imperative you have first gotten a doctor willing to support your decisions regarding life support etc and to serve as his primary physician. Otherwise going into a hospital can lead to losing control over such matters. If on the other hand you prefer to keep him at home at the end, you are going to need in-house help at some point, if only to keep him clean and comfortable so need to think about where that can be arranged from. Would not necessarily have to be nurses, in fact generally better if not (unless you find a hospital willing to provide IV morphine at home that way).

It would help to have some direction from your husband as to his wishes but I don't know how able he is to do that. He may still be reeling from the news that the tumor isn't treatable and not yet ready to think about end of life scenarios. And, culturally, most Thais do not go in for planning ahead around bad scenarios, preferring instead to just not think about it, or optimistically hope for a better outcome even when not really a possibility. They also expect doctor to decide for them what should be done and to passively accept that. You'll have to use your own best judgement as to whether and how to discuss things with your husband.

You are bearing a very hard burden here. Being faced with the loss of a spouse is horrible enough and on top of that you have the burden of having to make a lot of difficult decisions about medical care in an environment that is not conducive to it. Back in the West you'd have a hospice nurse walking you through all this face to face, step by step. Here obviously you do not. I really feel for you. Do you have any friends or family able to support you at this time? If so don't hesitate to reach out and ask even if it means someone flying out here. For the same cultural reasons outlined above I don't think his family is likely to be of much help in terms of moral support although they might be willing and able to pitch in with some of the basic physical care towards the end (provided you feel sure they will accept your decisions about treatment...if there is a chance they would not, might make things harder rather than easier for you).

[alyx]

Thanks for all the points you have made

Please understand one thing: I have done everything for him since we have first met twenty years ago. I have saved his life twice searching for a mean of treating his illnesses, going abroad, looking everywhere to find a solution, which I eventually did.

Since he had his first stroke I acted the same way. Six times, October 2012, June and September 2013, January, February and April 2014 I brought him to the ER in time to avoid a permanent paralysis.

In February, which was the worst - a clot had to be removed - I ( we ) made it clear to the surgeon who was felling me that the chances were lower than usual (40% against 90%) that losing a patient was better than bringing back a vegetable.

Therefore, even though we are not ready to part, I will not go for the long road: suffering and the consciousness of what is happening are top of my list if any list at all: I will follow your advice and act accordingly. It always comes as a shock when one hears what to expect but it is better to be warned ( when he underwent radiotherapy we just went head first as for a swim....well nobody had told us about the sharks in the pool....)

Regarding his family, they visited yesterday, as I had told them it was over, and said that I will not be able to cope, having looked in vain for a help at home ( I am not Thai and it is always difficult to explain the situation to strangers ).

His mother will be staying with us because he wants so, but this is definitely a second burden as she needs to be assisted outside home. She won't be of any help if a problem occurs.

Nevertheless she will be a moral support for her son.

His sisters will find a cousin, or anyone else, to stay home when I am not there ( they suggested he stayed at their mother's village, 200 km from Bangkok, but between the strokes and the cancer they certainly do not know what they are up against and, above all I want us to remain together ).

Well that is a step in the right direction

I had a kind of setback this morning with the Neuro to whom I had asked twice for the tubes: he suggested the path trough the nose, which I declined ( not for the reasons you cited: I just thought it was not convenient. Now I know the outcome, I realise that this not an option ). He then turned to my spouse who refused the G. Tubes....

I have just tried to make an appointment for Monday with the Samitivej's physician, don't you think that there will be some loss of faces with Laksanee?

Edited April 25, 2014 by alyx

[Sheryl]

No reason for Dr. Laksanee to even know about it. It doesn't pertain to his immediate care there at Bkk Hospital but rather to future plans post discharge from there.

I think it is worth trying to see if you can find a more ideal palliative specialist to manage his end of life care. maybe it won't yield anything more than what she could do, but it's worth a try.

I worry about how you will manage towards the end when he needs a lot of nursing care, especially given what you have just explained of your circumstances.

[alyx]

Well, when it comes to that I might have no other option than getting him to the hospital, if it means no suffering

Edited April 25, 2014 by alyx

[alyx]

And thanks again for all the details as I will discuss them with Laksanee tomorrow to see what she has in store

[Sheryl]

Well, when it comes to that I might have no other option than getting him to the hospital, if it means no suffering

If this is acceptable to you and him, it is a fine option and resolves a lot of potential problems-- but only if you can be absolutely assurred that the doctor in charge of his care and the hospital will 100% honor your wishes as regards life support, resucitation etc. It might be wise to consider a Living Will since these are now recognized in Thailand, if your husband is sufficiently able to face this issue. And should certainly discuss carefully with the doctor you are considering as the one under whose care he would be admitted. Find out if Dr. Laksanee would be able to serve in that role, as usually anesthesiologists do not, but given her specialization in pain management perhaps she does.

In discussions with doctors and hospital staff, be alert to the tendency of Thais to always give the answer they think the person wants to hear and probe a bit to be sure.

[alyx]

Thé living will should point at all the details regarding his departure....it might be tricky to have him do that

Anyhow, I have just got the answer from the Samitivej ( I don't see why my spouse should present for that kind of enquiry by the way )

Should I wait until may the 9th?

A good thing is the part about their assistance at home but, then, I guess, I could get that from chula which is nearby ?

Regarding your request, please be informed that Dr. Pongparadee is out of the country as of the moment. She will be back again on May 19th. Therefore, we booked the patient's appointment to Dr. Kaew Vichitkulwongsa on April 28th at 10:00 AM. It is very essential that the doctor will see the patient on his first visit to be able to assess and evaluate the condition of the patient and give the necessary treatment for him.

However, please be informed that if the patient would like to be visited at home, we have other doctors available for this service at Emergency Room. The estimate cost per visit is about 5,000 THB not including medication, treatment and other hospital charge. In order to book the doctor, you may have to contact ER directly at 02-711-8191 or 02-711-8198.

Edited April 26, 2014 by Sheryl

[alyx]

Thank you for your timely comment as Laksanee has just left the room after more than 30 minutes of discussion and explanation regarding the will and the direction we would like.
The hospital we stay is lukewarm about the will but I will have it made and sign ( I have found the form and it's translation in English from the Bkk hospital Pattaya) as soon as tomorrow ( a member of his family will sign as a witness )

[Sheryl]

I don't think it is worthwhile going to Samitivej until./unless you can see Dr. Pongparadee as the whole idea is to consult with the top expert in palliative care in Thailand on the chance that she might be able to offer more than you have otherwise been able to line up.

So wait until after she returns. As for the "doctor has to see the patient" but this is standard language and the email is from clerical staff so no need to put too much weight on it. Given the purpose of the consultation the main advantage of your husband coming would be for her to hear directly from him about his wishes but if (as may well still be the case) he is not able to openly discuss this matter I think she will understand. Cancel the alternate appointment they gave and make one for after she gets back. If by then you have decided that you are 100% happy with the arrangements you already have (well I mean as "happy" as one can be in these tragic circumstances) and that they will suffice, then cancel it, otherwise go and talk with her.

It is good to know that Samitivej will send ER docs to the home if needed, I don't think Chula can, make a note of this and the number just in case - if for example his pain gets bad and the meds aren't working and he just needs an injection to get him through the night, might be useful.

[cheeryble]

May I just say Alyx I've been touched by this thread and I think your partner is extremely lucky to have you and you've been dealing with an impossible situation which no-one can deal with perfectly in an energetic, positive, and pretty much measured way.

You could not have been more lucky to have found Sheryl of course.

Do not stop for one second to say "I should have done this or that" or "if only". Simply put one foot in front of the other as you've been doing.

I'm sure all our feelings are with you both.

Edited April 27, 2014 by cheeryble

[ttthailand]

Hi, sorry to hear about your health problems. I hope things turn out for the best...

About 10 years ago I also had cancer and went to Bumrungrad hospital In Bangkok, Sukhumvit soi 3. I had been to other hospitals in Thailand including Bangkok Hospital and The care I received at Bumrungrad was by far the best I have ever had in my life.... Very professional and the doctors are some of the best in Thailand.

Maybe too late to try but perhaps a review of his condition and options might be something to think about.

In any care, good luck and god bless.

[alyx]

May I just say Alyx I've been touched by this thread and I think your partner is extremely lucky to have you and you've been dealing with an impossible situation which no-one can deal with perfectly in an energetic, positive, and pretty much measured way.

You could not have been more lucky to have found Sheryl of course.

Do not stop for one second to say "I should have done this or that" or "if only". Simply put one foot in front of the other as you've been doing.

I'm sure all our feelings are with you both.

Thanks. When one step is taken we always look back and wonder whether another path wouldn't have been better but of course, as I have nobody to turn to, I express my "guilt" on this thread. But that is all there is to it as the question is not to take the right decision but being forced in taking them.

I should add hat we are consttantly confronted with highly inconvenient situations, as you can read scrolling farther down

Edited April 27, 2014 by alyx

[alyx]

Hi, sorry to hear about your health problems. I hope things turn out for the best...

About 10 years ago I also had cancer and went to Bumrungrad hospital In Bangkok, Sukhumvit soi 3. I had been to other hospitals in Thailand including Bangkok Hospital and The care I received at Bumrungrad was by far the best I have ever had in my life.... Very professional and the doctors are some of the best in Thailand.

Maybe too late to try but perhaps a review of his condition and options might be something to think about.

In any care, good luck and god bless.

I intend to meet a physician there, tomorrow....we'll see

Edited April 27, 2014 by alyx

[alyx]

Now, I am as upset and confused as anyone could be.

I was writing, earlier on, about an awkward situation, here it is.

I have spent the day in the room and went downstairs to get some drinks.

When I stepped out of the lift I saw my spouse's oncologist walking by, talking over the phone.

As I stared at him, he stopped by me, finished his call: I asked him if he knew that my spouse had been hospitalised since Tuesday, the day we were to see him for a follow up.

His answer was that he didn't know where the patient was.

I insisted saying that I had called his secretary on Tuesday, that the ENT, on Thursday, had said she would call him, , and that I had been to the Cancer department only to be told that he had been informed.

I added the stage had gone from 1-2 to 4 since the first chemo.

He sharply answered that he couldn't visit the patients when not asked to do so by a resident doctor ( which he is not )

I insisted, saying that HE was the oncologist in charge with the chemo:

" I walk around the hospital, I cannot go and see a patient if I have not been asked to consult by his family doctor " was his answer, then he left

Now, I know that I had decided not to go ahead with chemo, and was kind of relieved that he hadn't visited ( rather than declining his services ) but if he had a plan who could save my spouse.....

Of course the guy is a pain in the neck, kind of bossy, very sensitive, keeping things to himself, so like walking with a blindfold when he is guiding.

I am getting paranoid, starting to wonder whether the oncology department doesn't want anyone from the outside to be involved, especially someone who had gone against their judgment.

Edited April 27, 2014 by alyx

[Sheryl]

It is true that in any hospital a consultation on any inpatient case by a specialist has to be requested by the admitting doctor, that is the protocol. Helps prevent turf battles between doctors. Though in a case liek this where the specialist had been treating the patient for a condition other than the one he is admitted for, he could have taken the initiative of contacting the neuro doc and clearing a consult.

As fir his claiming not to know your husband was there, 2 possibilities:

- One is that the staff screwed up and he really didn't get the message.

- Another is that he had already heard from other docs that the cancer was stage IV and wished to avoid the situation knowing that there was really nothing he could offer.

In either case it does not matter now as chemo at this stage will not help, in fact would likely worsen the quality of what little time he has left.

I doubt the oncology dept cares about others being involved and even if they did, why care how they feel? You are looking out for the patient, as you should.

[alyx]

Point taken

I can assure you that he had been told by his staff

Of course, the second possibility might be the reason, but I still doubt it

I will have a word with the Neuro as I find this Kafkaian, even though I will not try to get in touch with the oncologist

Thanks for the (reassuring) comment

[NeverSure]

I am very sorry about your circumstances and pray for strength for you to see this through. You sound very brave to me.

This is probably of no help at this stage, but earlier it was mentioned that it was too close to the carotid artery for surgery. Perhaps it is already too late for any surgery.

But I did want to mention that carotid artery bypass is almost as common as heart artery bypass. It is done when a tumor surrounds or is too close to the artery, and also for some stroke patients. A vein is removed from the leg, used for the bypass and then the original artery can be removed. Often if the tumor surrounds the artery, that section of artery is removed with the tumor.

The bypass can also be somewhat re-routed to get it away from what needs to be done.

In the meantime you have a difficult time ahead of you and you will be in my prayers.

[alyx]

Thanks for this, I wasn't aware of this option. Unfortunately, I don't think that it is applicable now.

I don't know what to think, but, even when he had just been diagnosed, meaning that, from what the ENT said, the tumour was just limited to the soft palate and the back of the tongue, every single specialist had turned down any mean of treatment radiotherapy ( because he had one at the same site years ago) chemo ( because it was useless) and surgery ( because it was too close to the carotid )

This is why I turned to robotic surgery in Singapore ( here they have the equipment but not the doctors) but, by the time I arrived there, a month later, the tumour had spread to the voice box ( how far down was yet to be determined ) making it impossible. That is when the surgeon suggested a full removal of the voice box ( not on the list anymore, thanks to Sheryl's sound advice )

Now all kinds of surgery seem too invasive

I feel I have been mislead when there was still time, and thought that months would be the norm, rather than weeks or days as far as the evolution of the illness was concerned

A last try today at the Bumrungrad.....with a doctor called Sunantha Srisubut Ploysongsan....after which I'll let it go

Also considering he has had several (heavy) strokes since 2012, one cannot expect a large window. As cold as it may seem, I wish for a quick exit if "quality of life" gets affected, for his sake as well as mine as there is nothing worse than being helpless before the love of one's life.

Edited April 28, 2014 by alyx

[Mitker]

Sorry to hear about what you are passing through you and your spouse

As mentioned by another post, you are showing an amazing dedication to him and have definitely no reason to feel any kind of guilt. Just the opposite.

I would just add to the advice of preparing the issue in order to ensure the respect of your decisions.

I recently lost a very good friend from cancer in a Thai hospital.

At a given point, due to the pain and sick of the medical environment, he finally told us he had "decided to let the nature take its course" (his words) and asked to be transferred back home. You could tell by his stare when he told us, that it was a relieving decision he had finally taken.

That is when I felt both saddened and angered to hear that the hospital now refused to let him go pretexting his weakness (he passed away weeks later in the very same hospital room he had asked to leave).

His friend had already arranged for the ambulance for the transfer and their home was just a few hundreds meter away. He could have fought this but was just too exhausted also by the continuous support he had been giving for months.

Whatever the hospital motives, they are not the point here.

I personally consider that there is no greater authority to decide about someone's way of departing than the patient himself if he makes his decision knowingly

I encourage you to take now the necessary steps to have your choice respected later

You have our deep support in these times

[alyx]

Thanks and agreed

We already have a "power of attorney" ( in the hospital files since yesterday) putting me in charge with all medical decisions as well as unrestricted access to his dossier and dealing with the medical staff

As Sherryl has advised, we will also have a living will. I have found the forms on the Bangkok hospital Pattaya website ( not available at the Bkk hp Bangkok )

On these documents it is clearly stated whether the wish is to stay home or at the hospital, along with other decisions ( refusing tracheotomy, resuscitation, respiratory machines...) That would settle it I guess

The family was supposed to come yesterday but, for whatever reasons, they were unable to make it, therefore no one could co-sign the form

I guess I will have strangers to do it. It will have a cost but, at least, that will be done as only two witnesses are needed.

[Sheryl]

.....As cold as it may seem, I wish for a quick exit if "quality of life" gets affected, for his sake as well as mine as there is nothing worse than being helpless before the love of one's life.

Not at all cold, rather the height of compassion.

Deciding in advance not to accept surgery or tracheostomy tube positions you well for all this. The more decisions made in advance the better as when these things come to a head it can be sudden and rushed with doctors insisting you sign consents straight away and so forth.

If the tumor is that close to the carotid it is possible it will erode into it at some point, this is actually for the best as it is a quick and painless event.

It is not possible to really predict the pace of the growth of a tumor, the most any doctor can do is base it on averages and there are always exceptions to that, in either direction. In your case unfortunately in the direction of being more aggressive/fast growing. This was not necessarily something anyone could have predicted.

[alyx]

Let's hope so but he is the kind to, unwillingly, "favour" the most complicated path, health wise

I have just spent more than one hour with the radio therapist Sunantha Srisubut-Ploysongsang

It would have been a plus if I had been in touch with her earlier as she did take time to understand the case, review all files in my possesson and explaining everything there was to it.

If anyone had to talk to someone, actually listening, that would be her

She is not quite sure that it is a stage IV but a new MRI would clear the way for that.

Nevertheless, although she doesn't understand that nothing had been done last month, she thinks radiotherapy might be doable but after an agressive chemo. It remains to see whether it is worth a try.

When I mentioned that surgery and tracheotomy were not on our list, she fully agreed dismissing any kind of invasive procedure

She is going to further discuss the case with a colleague and will come back to me keeping in mind that we prefer quality of life rather than desperate attempts

It was, morally, a positive encounter as she also came up with reassuring comments regarding the pain relief

[cheeryble]

.....As cold as it may seem, I wish for a quick exit if "quality of life" gets affected, for his sake as well as mine as there is nothing worse than being helpless before the love of one's life.

Not at all cold, rather the height of compassion.

Couldn't agree with Sheryl more.

I had a pow-wow with the doctor to organize non-intervention for my father at 89, and have never regretted it for a second, quite the opposite. I was actually willing to bring my mother's suffering to an end when she had very bad paranoia in the earlier stages of Alzheimer's, but happily she ended up a fairly happy old lady in a wonderful EMI home with four dogs to play with.

To me the time of life or death doesn't matter much.....but suffering and anxiety do matter a lot.

The height of compassion, it's a shame there isn't someone there for all of us who can shut things down for us when the time is right.

Sent from my iPad using ThaiVisa app

[alyx]

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.

[Sheryl]

It is never easy.

But of course with a parent who is elderly one has known for many years that the end is drawing closer and had more time to prepare for it. And usually well before that time the nature of the relationship has changed such that the parent is no longer a source of nurturance for you.

Whereas we do not expect to have to face this sort of thing with a still comparatively young spouse. So we are unprepared emotionally and otherwise. And you are losing a relationship that you still needed/depended on emotionally.

But I think in either case the key is being certain that the situation truly is terminal with no reasonable hope of survival/survival under conditions worth living. You understandably need to feel sure you have left no stone unturned/possibility explored.

[alyx]

Well, we'll see how things turn out as we go back home today, some patches in hand.

They doubled their dose yesterday but the level of ( quite bearable ) pain remains the same. Maybe we'll have to wait a couple of days although it is supposed to have its effect 12 hours after

Yesterday I spoke to Lakasanee, the palliative physician, to make sure that my spouse would get a morphine pump if I were to have him hospitalised, to which she agreed.

All the documents are in order, the path to follow ( at least what not to do ) has been made clear and seems to be understood

Now this is out of the way ( I guess that was the hardest but the best thing to do), we'll try to get the best out of the time left as he is still fine, when we except the cough from time to time, and, of course, due to the patch, the need to sleep longer than usual, but that's ok.

Not out of guilt, but I still think it was a mistake to let him know about the terminal condition.

Being unaware of it would have changed nothing but keeping him in a good spirit as he is more in the "let's see what happens" mode rather than being confrontational.

Edited April 30, 2014 by alyx

[alyx]

Discharged from the Bkk hp yesterday morning, he was kind of weak, spent the day qt home. At 3.30 AM he had a TIS which caused him to fall. I helped him to the bedroom, starting getting dressed to take him back to the hospital but he refused.

Today he is feeling ok, back to smiling and laughing at everything.

This afternoon I received a call from Sunantha ( from Bumrungrad ) who told me she had carefully reviewed the Petscan and discussed the matter with a fellow oncologist. Due the first chemo failing, this course wouldn't work but, from her point of view, the cancer was localised

She advised me to contact the doctors at the Bkk hp and ask them to consider a volumetric arc radiotherapy.

When I told her they were kind of obtuse, she told me to insist as they do have the technology at the Bkk hp, adding that my spouse might not stand the therapy.

At that point she thought that my spouse was still at the Bkk hp, meaning that this was a genuine and objective judgment rather than a money minded call.

As the Bumrungrad have this machine we will visit her tomorrow to discuss it further.

It is positive but this doesn't change anything to our line of thinking, as I don't expect much out of it.

It is worth a consultation, I guess

Edited May 1, 2014 by alyx

[Sheryl]

I'm unclear about the part:

"from her point of view, the cancer was localised"

Is she saying that she disagrees with the staging of the cancer?

[alyx]

She didn't put it that way but it seems so. At least she said that the cancer was localised. It hadn't reached any other part of the body

I'll know more about it this morning

Edited May 2, 2014 by alyx