Is there a place on this forum to discuss end of life issues? My brother is out of options and his tumor is growing. I don't want to go into details in this forum of hope, but I do have specific questions about end-of-life for oral cancer.

thanks,

Sadly

a

So sorry to read this.
I'm hoping you have had your Brother get a second opinion.
Is there not an option of salvage surgery? I know that this can be extreme but it is worth it.

If this really is terminal, I would suggest you contact your local hospice for assistance . They will help to ensure pain relief is adequate and guide you all through the process while providing practical help with caring for him.

Thinking of you and your whole family,
Tammy.

Hi A:
Sorry to hear the news. I thought of several possible forums to post this in, but I think it better to let David or Christine suggest it.

Stay strong. We're thinking of you and your brother.

Tony

I'm sorry you are going through this. Definitely look Into hospice or at home nursing care. And there are a few places - recurrence for one that you can post here. Hugs...

Dear A, I can't help with your query beyond suggesting the Recurrence list, but I'll certainly be thinking of you and your family. Linda

There was this thread earlier this year, which includes links to posts by two OCFers who have been through this. Note that they have moved on with their lives and no longer post regularly, if at all, but the information may be helpful. And as others here have done, the thread includes recommendations to consult with hospice personnel.

Feel free to ask any end of life questions.

There are a few members who have been thru this with their loved ones. Im not sure how frequently they are on the forum.

We can try to help you but hospice would be the best ones to help you as they have been specially trained in everything relating to end of life. At OCF, we will always attempt to help everyone. But this subject might be better off with the experts. We do have one section where its devoted to members with deceased OC patients. Its way down on the bottom of the main forum page.

Im very sorry you are in this situation. Im wishing you all the very best with everything. We are here to listen and support you as much as we can.

[quote=davidcpa]Feel free to ask any end of life questions. [/quote]
OK I am told I have used up my lifetime quota of Radiotherapy and Surgery and as I now have a (10 years on)recurrence of growths in my throat as well as Fistulas - we are trying a course of Carboplatin (arm drip) every 3 weeks (3x so far)- first we tried another with tablets via PEG but no result/changes. I have a PEG and now a Mi-key as I cannot swallow food or drink due to the tumor in my throat and of course I have a tracheotomy to breath. I am due for a scan latter this week to see if there is a visible change to the mass in my throat. I suspect there is not - although stopping any further growth would be success :-) Now my question is if the growths continue how do I die ? I have a good heart etc and breath through my neck and eat via PEG so I by pass the mass in my throat - so does it keep growing until it hemorrhages and I die in a sudden explosion of blood loss ? I have unlimited morphine etc available so pain is not an issue. I have already been coerced into signing a release absolving the medical team from failing to resuscitate me in the event of a hemorrhage and assumed that was because they cannot. Things came to a head this past June but here I am 5 months on slowly getting thinner day by day LOL


Edited by ChristineB (11/19/13 02:47 PM)

Mike,

Very sorry for your cancer experince and let's pray your docs can acheive some positive results with this current course of action. Please understand that none of us are doctors and the question you raise in the post above really is best answered by your docs. With the time that I have spent on this site I (and others) have read numerous posts from caregivers to lovedones that passed from oral cancer so I can only relate to you what was passed on but none of these posts were medically technical. I can say that Hospice was involved in most if not all cases and not reading that you have a caregiver I see that as an option depending upon what happens with your treatment.

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.

Sorry to hear about the failure of treatments. Pain is the worst side effect of all and hopefully this gets under control. As you say, battling the pain becomes the primary focus. I hope he finds relief soon. Don