to MIKE: I think you are asking more over what the medical process is correct? not about care?

Ultimately how will it take you? I think that depends on whether the cancer has spread to other places - and where. My friend died a year or so ago - bless her - and her cancer at that point had moved into her lungs. Due to the cancer she essentially stopped eating (feeling full all the time and nausea played a role) and slowly faded away. I know you have a tube. It may not be the same, but I have been with people who've passed and ultimately they become weaker until their body can no longer sustain their basic functions.

generally it is not the tumor that kills you surprisingly. Often it is mets to another location and how those mets affect your overall body function. (cancer is a sugar hog) it steals your nutrition and your body slowly wastes. (cachexia)

I know at some point acceptance becomes a fact. However, I do hope the chemo works for you. I do think that maybe pushing for alternatives may be a plus. Look at Paul here... he's had a similar experience almost long term chronic cancer. Still they have always managed to find a way to do something for him. There is another woman - named Susan I believe she has had issues for quite some time but they have always managed to find something to do - radiation, or chemo.

I wouldn't give up just yet unless you are at the point where enough is enough. Adjust your diet - I know you are on a permanent tube - however - instead of only canned nutrients try making your own smoothies in a blender. Since taste isn't an issue try high nutrient veggies (spinach, kale, beets, chard, carrot etc... and fruits, protein powder, flax seed and a fat or two... fish, peanut butter?? etc... this may help with your healing and fistulas, shore up your strength and help with weight. It has to be completely smooth of course but a vitamix can do this for you. And there is a web site run by a former member who has recipes for super healthy all natural smoothies for tube feeders. I'm not saying this will cure you but it may make you feel better.

best of luck.

Thanks Cheryld I was taking the opportunity to respond to an open invitation to query end of life scenarios.) I do have a caregiver (I was widowed - first wife lung cancer - but remarried 5 yrs ago). I have the overnight 1 litre feed via pump and top up via peg during the day with Irish coffee (yes with whisky), ensure+raw egg, prune juice, smoothies etc etc and keep an eye on my weight - muscles migrating to the waistline LOL. My first life changing "terminal" cancer was 50 years ago - this oral one is only 10 years old but now active again. I only have it in the throat nowhere else. I do miss the bouche (mouth feel) of good meals and of course the taste and texture of beer ! Very hard as a gourmet chef and foodie :-(
OK no complaints it was just an idle query - every day is still a good day of course ! :-)

I do have a complaint tho as an after thought - because of the growth I can no longer use my nu-voi (speech aide) so am now totally mute - just in case you thought my life was perfect :-)

If it is only in your neck - please look around for other options. There is always someone willing to do something to help Even debulking it. I was serious on the diet. Healing is very much related to diet and overall health. Throw in some of the GREENS... Lost my mom to lung cancer 12 years ago. My friend had peritoneal and it moved up into her lungs... hugs and you are blessed... enjoy the irish coffee...

Thanks Cheryl - GREENS ! ... yes I do - V8 juice with 4 or 5 juiced vegetables and also use as PEG water the cooking water from fresh cooked household veges.
Stretching the neck internally risks a blood rupture according to the Surgeons and they will not do it. For the same reasons I had enormous problems getting a PEG inserted as they only knew how to do it down the neck (which is blocked) fortunately we found a Surgeon (South African) who knew and had the old skills of slicing straight into the belly and manually inserting the PEG from the inside. The others were prepared to send me home to starve to death - they agreed to intravenous hydration tho - prolong the agony LOL. I vary the Irish Coffee with Bloody Mary (tomato juice and vodka) - still eyeing up the beer bottles - they can wait until I've finished Chemo. Nothing has metastasized to date and I am still ambulant :-)

awesome... Keep pushing. You will find someone... Seriously they didn't know how to do a peg? Wow... That's crazy,,. Very common place here,
You could always move to canada??!! We have good beer apparently... And greens.... kale spinach chard.. Hugs

[quote=Cheryld]awesome... Keep pushing. You will find someone... Seriously they didn't know how to do a peg? Wow... That's crazy,,. Very common place here,
You could always move to canada??!! We have good beer apparently... And greens.... kale spinach chard.. Hugs [/quote]

Of course they knew how to do a PEG via down the neck but could not/would not because it is blocked by the inoperable tumors and they were not prepared to risk a potential hemorrhage by forcing their way through then. BUT they did not know how to cut a hole, big enough to insert their hand, from the outside into the stomach and insert the PEG from there. As it was my only option I cheefully agreed to it - what's one more scar ?

Yikes... okay my peg was installed under a sedative and local anaesthetic. They used an ultrasound to guide the insertion of the tube, and it went from under my rib directly into my stomach... it took no more than 30 minutes... Wow...

Thanks all. We did move him to hospice care because the docs ran out of things. It is hard to tell what is causing his increasing weakness. The biggest problem is the unending and ever increasing pain. He is oe some very heavy meds - 250 Fentanyl Patch, and 2 to 3 cc's of oxycondone for breakthrough pain - which is is now taking several times a day. Despite this, he still has 10 level pain several times a day. He knows he can increase his pain meds (Fentanyl can go to 300 and then methadone and morphine), but he knows that every med increase makes him more distant from awareness of what is going on.

I wont go into all the details about what is happening - bleeding, nausea, etc, but hospice is amazing.

Ultimately, pain control will be the issue and might get ahead of any metastases issues - and I think that is a good thing.

So sorry to hear this our thoughts are with you at this time - hugs

I'm sorry also. The pains meds like Fetynal do weaken the muscles.