Hi everybody,

I am here as a Caregiver. My Grandpa is suffering from Cheek Cancer which at the time of diagnosis also spread to Jaw bone. This was in December 1st week 2011. We consulted the Oncologist Surgeon and specialist who suggested if we are going for surgery it would be 3 months of radiotherapy and no chemotherapy suggested. But they said during the operation they might remove a part or full lower jaw. He is also a patient of Alzheimer and considering his age (71 Yrs) most of family doctors suggested not to go for operation.

Now, when I am writing this on this forum, he is severely in pain and has complete lower jaw affected with the cancer. He also has growth between the lower lip and lower teeth. and below the tongue as well. He is also having a small aperture formed in the bottom of the chin, where we have continuous secretions of the infected jaw.

At this point we are very confused within our family what needs to be done and how can we help him so that t=his suffering is lessened.

Expecting full of suggestions from this forum which would take me and my family to go further in giving him the care he requires at this stage.

Thanks,
Sai

Welcome to OCF, Sai! Im very sorry your grandfather is going thru this! The operation you are talking about is called a mandibulectomy (removal of lower jaw). I have had this surgery. For many it goes smoothly with the doctor using a piece of leg bone to replace the jaw they remove. The hospital stay will be usually be anywhere from one week to one month depending on complications and his recovery. It is a very long surgery, 10+ hours.

Your grandfather needs pain meds. It sounds to me like his cancer is a Stage IV as it is in a large area affecting several things. In my opinion he should have the fentanyl patch at least 50mgs, it will take about 24 hours to work. He may need 75 or 100 to control his pain if it is that bad. But starting at 50 will help and its always easier to move up to higher dosages. This patch needs to have the directions followed exactly with never bending, tearing or folding the patch and no hot baths or showers. It gets changed every 72 hours. He should also have something for breakthru pain. Nobody should have to be in pain. I know how much the jaw can hurt and its terrible. Talk with his doctor immediately and get them to give him something strong for the pain.

I do not know what type of medical professionals or facilities you have available in your country. I would suggest getting your grandfather to the very best comprehensive cancer center where they are the most familiar with head and neck cancers. A small treatment facility may not be experienced in treating someone who has oral cancer, it is often not one of the common ones so the choice of facilities will play a big role in his treatment plan.

Best wishes with everything!

Hi Christine,

Thanks for the warm welcome and I'm pretty much happy by the way you responded.

Could you let me know if I can go ahead and add some of my queries related with your reply right here or do I need to go to a different forum. As I'm new to OCF suggest me accordingly as I'm concerned of the rules of OCF as well !!

Post away right here.

Sai, after a few posts, you will get the hang of it and be posting like a pro. Its ok to continue asking related questions right on this same thread.

Hi there - sorry about you grandfather - it sounds to me like you decided against treatment for him, is there a hospice service available? They would help with pain medication etc... I'm not sure if that would be a common servic offered in India.. Perhaps eshwar will b along to offer one advice. Take care and saying prayers for your grandfather

Hi David, Christine and All,

Thanks once again for encouraging me to share whatever possible for making his pain lessen.

As posted in reply "Cheryld" has guessed it correct. We all within our family decided not to go with the treatment last December.

Now, as said by one of the pathologists who is a family doctor as well, his lower jaw is completely affected with cancer ( if we physically see him, it would look as if its just very loose ). As recently he is suffering more we thought we would get some suggestions from the dentists and consulted a few.

Most of them suggested not to do anything further like removal of teeth, rather they clearly suggested nothing can be done except taking care of him. Some dentists though say that the lower teeth which are 8 in number out of which 5 are dentures (artificial) can be removed. One of our closet doctor came in with suggestion to consult another dentist, where he also declined to go with doing anything further with the removal of lower teeth.

Now, there are three concerns for us:

1) He is finding difficulty in swallowing. He is able to do it, but sometimes reluctant in taking food - (food in form of thin paste). We can imagine what he is going through but unable to do anything further !!

Please advice..

2) As told earlier, he is a patient of dementia (he hardly recognizes few within our family by seeing our faces). He is hardly sleeping for few minutes. (less than two hours - and with much difficulty) He has hardly any energy left over, and continuously roams throughout the day and particularly in night. We are always asking him and trying him to make him sleep but our efforts going in vain.

Kindly advice how to make him rest for sometime (do we need to go for medication in particular, or should we be asking anything in particular about this with the doctors). Doctors have been giving pills but they doesn't seem to work.

3) In December last, the concerned Oncologists said without treatment he would have six months in hand. Do anybody over here suggests for any kind of treatment for him at this stage.

Please give your inputs.

And Christine,

Could you let me know what are these medicines for - Could you please elaborate me. I couldn't get the following in particular "hot showers".

And sorry for posting this all this long in single post, would try to make short from next time.

Sai, a hot shower is a hot bath.

I advised you to ask the doctors for prescriptions for the fentanyl patch to help him with the pain.

You have said no treatment is being done for the cancer. With that info, I would also suggest what Cheryl stated with the hospice. This is an organization which helps terminally ill patients when they are close to the end. They will manage the pain so the patient does not suffer.

Hi Sal. Afraid I haven't much by way of advice, just wanted to add my welcome to OCF and express my sympathy for the pain your whole family must be feeling. Strength to you all.

There is no treatment other than comfort if you have made the decision to let the cancer kill him. Pain meds and very very strong ones should be used to make whatever short time he has left as pain free as possible.

Hi,
What you are doing in regards to treatment (none) is acceptable considering the circumstances but only if you make absolutely sure he is out of pain. You need to be at a cancer center, or have a hospice service come into your/his home. Please say you are doing that. I know you love and want the best for your grandfather, but he does not have and should not have to endure pain. Reread Christine's post.
Anne

Sai,
in addition to the pain meds, antipsychotic and anti-anxiety medications may help with the the altzheimer's distress. You will need to be very sure that the doctors are aware of all the perscriptions being given. The medications that Christine has suggested can make a huge difference as to whether his last days are comfortable and peace or a nightmare.
My best wishes to you and all of your family.
Maria

I think being in India the standard is to care for the elderly in home, a hospice service may or may not be available depending on whether they are in a big town. Your grandfather needs to have pain management likely he is not sleeping because he is confused and in pain. Do talk to your drs. And ask for strong pain medication this will likey help him sleep and not suffer. The suggestions given for the type of medication is good. There may be different names for them in India. Good luck with everything.

Hi Christine, Anne, Maria, Cheryld, & David and Everybody else,


I really am very thankful for the suggestions and advice you people have given in your last posts in this thread.

I completely agree the suggestions would have worked if I would have some months ago. But, the today position of my grandpa is I believe his entire lower jaw is gone, i mean its so soft as there's no bone. And he has lots of other openings on his cheek side which is exposing his tissue. We used to give him fluids till last one week. Only a small portion of fluids would go in due to the openings formed in his jaw now which is becoming more and more visible now.

We have been consulting the local general physician from some days and he has given tranquilizers (tablets) for making him sleep as he is behaving in very odd manner for putting him sleep atleast for few hours.

Now, doctor has suggested to given a injection and said it would sedate him for couple of hours (2-3 hrs). And asked not to force in providing any food (even liquids) by force.

Could you people help me understand the suggestions given by the doctor. I know my loving grandpa maybe having only few more days left with him. What else can we do to make his suffering less during his last days.

Please come up with your advice or suggestions as this would help me in interacting with doctors as such. Or how to proceed further in dealing with this situation at my home.


Thanks,
Sai Krishna

Is there such a thing as hospice care in your country? We have that here to help with terminally ill patients. It helps by keeping them comfortable so they are not in pain. I wish there was more similarities with our countries medical care so I could help you more. Hopefully one of our members from India will see your posts and be able to assist you better.

Best wishes!!!

Could somebody from INDIA suggest on this !!!


Regards,
Sai Krishna

I have sent a private message to one of our members from India. Hope they will be along soon to offer you some assistance.

Hi Christine,

Thanks a lot for that quick help.

I would be watching out for any response as I really need some assistance.

Thanks,
Sai

Hi Sai, I have shared my contact details on Private Message. Please feel free to get in touch. My honest opinion here is that you should opt for palliative chemotherapy and/or radiotherapy to improve quality of life along with some pain killers.

India do have hospice facility but I am not sure if your family would be inclined to opt for. One I know is in Rishikesh that my dad's Onco surgeon visits.

You can read here: http://www.gangapremhospice.org/

In Hyderabad you have: http://www.sparshhospice.org/our-team.html

Hi Eshwar,

Thanks for your message. I have shared my contact details on private message to you.

And as per the current situation, I see there is no treatment being suggested by the doctors whatsoever.

But, I'm not sure if we should really opt for a hospice. I can understand all your suggestions here for hospice. But, my grandpa is in a position where he is not talking, not understanding anything or recognizes anyone. I feel it would be putting him to more discomfort moving into hospice if he is restricting communicating with strangers.

Now there's a 1.5 cms aperture on his chin which may grow larger. Already he is not taking any fluids, but still getting up and managing to move in the house.

I am really not sure if I should be posting all these here, but just posting to get any possible suggestions on how to move ahead.

Thanks,
Sai

Hi Sai, please feel free to post absolutely anything. Everyone here is affected by cancer in someway and is just trying to share their experience and help others in whatever possible means.

As discussed over phone, go for Fentanyl patch and also discuss with a good oncologist rather than a general physician about the situation.

You can read about Last days of life here: http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/patient

Make sure to follow the directions exactly with the fentanyl patch. No long hot baths or showers, do not ever bend, tear, cut or fold the patch. These things can cause the patch to distribute too much of the medication.

Hi Eshwar/Christine,

The doctors we are consulting are suggesting only one thing, i.e; go with dressing of the exposed part near chin area and try to feed with the liquids if he is interested to take.

They are saying nothing much can be done untill and unless the patient is interested to take the treatment. They are also saying hospitalization can be done if he is going into unconsious state.

Please advice on this..

Thanks,
Sai Krishna

Im so sorry that its so difficult for you to navigate the medical system there. How frustrating this must be for you! I guess you cant force a patient to seek treatment.

As always I wish you all the best with your Grandpa.

Hi Sai, did you speak to doctor about Fentanyl Patch? That will provide your grandpa sufficient relief and willingness to proceed with food and treatment.

As a caregiver, you have to fight for the patient.

Sometimes, doctors here in India are such a disappointment!

Hi Eshwar/Christine,

I am on my way to my home for 5 days, so I would be able to ask about the fentanyl patch. I will also tell them all the current situation and let you know about the happenings.

I will also check on the options we have for emergency hospitalization and the pain medications available.

Thanks,
Sai Krishna

Hi All,

Still waiting for any appointment on Wednesday with the Oncologist to talk about the Fentanyl Patch.

I would also like to know if this is suggested in patients with any body mass left. I'm asking because he has stopped fluids from past 3 days and doesn't look like will be able to cope with any strong medication which may have side affects even.

Do suggest if considering Fentanyl Patch in end of the days will help in any way !!

Just rushing to hospital now.

Thanks,
Sai Krishna

If your grandfather is in pain, he needs to have it controlled. In my opinion the fentanyl patch should help. It will take about 24 hours from the time its place on him to begin to work. It gets changed every 72 hours which makes it very simple. Always follow the directions exactly with no long hot showers or baths and never fold, cut, bend or rip the patch. Ask also for some other pain meds for any breakthru pain for when he is having a bad day managing the pain. The patch comes in several strengths 12.5, 25, 50 and 100mg. I would guess that he should start out with a 50mg patch if his pain is severe. I hope this will help him.

Best wishes, Sai. You are a very good grandchild.

Hi All,

Its a sad day in my entire life when my grandpa expired due to cardiac arrest on 2nd Oct 3:00 PM IST. He was hospitalized on the same day to provide some essential fluids to his body which seems inevitable. But could keep him with us only for another 4 hrs.

Its a immense loss to the entire family. He has totally 4 daughters
and no sons. So all my aunts including my mother took all the care and kept him as happy as possible during his battle with the
cancer for almost 10 months after the initial diagnosis. As I am the eldest grandson performed all the rituals to rest his soul in peace.

We were never able to see him suffer during this entire 10 months tenure where he was suffering and battling cancer. How ever we are assured of the fact now, that he is no more in pain which he used to be.

Finally he is pain free and would be in our hearts forever. I can never ever forgot the care and love he has shown me or my family.

Thanks each and everyone in the forum by name for extending their support to me and my family.

Also, I would like to be a active member of this forum and would start from wherever possible to help the new members here.

Thanks,
Sai Krishna

Hello, Sai
please accept my condolences and extend them to the rest of your family. I am glad that you were able to perform the rituals for your dear grandfather both for his sake and for yours. I know that it was a hard task for your mother and her sisters to care for him during his final illness, but it was a blessing to them to be able to do so.
I hope that you will find peace in the coming days, and remember the many wonderful times that you had together.
Maria

Sai,

I'm very sorry for your loss. Please accept my condolences to you and your family. I hope you will find peace in memories of your happy times together.

Karen

So sorry for your family's loss.

Sai, sorry to hear about your loss. May your grandpa's soul rest in peace.

Hi Sai,
So sorry for your loss. I hope that the wonderful memories that you have can help you get through this awful time.
You are right, his pain is gone.
Blessings,
Kathy

Hi All,

I accept all of your condolences and would also like to thank for the support of Christine, Cheryld, Eshwar in particular for thier valuable suggestions and support throughout my posts here.

Regards,
Sai Krishna