I am caregiver along with my sister and aunt to my wonderful Dad. Posted 2 weeks ago under New Here. With heavy heart I have to report the SCC is back mets to skull and bilateral lymph nodes of neck and below sternum. Surgeon suggested pallative care and hospice . oncologists started tx of rad and chemo. My dad has deteriorated so rapidly. PAIN SPEECH SWALLOWING It is devastating to him and all of us and horrible nerve pain as it attacks the cranial nerves and larger tumor is surrounding the carotid artery. Anyone with experience with this out there? Does the rad and chemo reduce the pain? We wanted him to accept and move in the direction of hospice for comfort and peace but he has fight still left. Despite all the pain. Also, this is hard to ask but what can we expect at the end? I understand the nature of that question i can be reached by private e-mail let me know. ....just want him to go to heaven peacefully . Want to be prepared. THX in advance-Netsky

I am so very sorry to hear of what your Dad is going through. Hopefully someone here has some experience in dealing with that level of pain. I will keep you all in my prayers.

It is irresponsible for his doctors to allow him to be in such pain. This is completely unnecessary and unacceptable. You need to get them on the phone and call them on the carpet. You have to be the advocate here and get what he needs to bring this under control . The ability to do so exists.

Where are they radiating?

I agree with Brian, get the pain meds that take him out of it.

Sending you a private message.

Thank you all for imput sand advice, He is on percosset and Xanex also decadron to reduce swelling. But this barely takes the edge off. He hates that it makes him doped up and by his own doing doesn't take what is actually allowed wants to be in control and he is losing control if that makes sense. They switched to LORTAB yesterday. David they radiating the large tumor that is wrapped around the carotid artery, the 3 nodes on the neck and below sternum. Said it is a shot to get him more comforatable. Meanwhile his voice is disappearing-I am worried that he won't be able to communicate esp with brain involved- and now speech I've had other family members die from cancer but never seen an end like this-F%^&$&* horrible. That's why i would like him to do hospice -we did it for my mom and she went peacefully surrounding by loved ones.

There are patches for pain, too. Keep calling if your Dad does not get relief on Lortab. Sending you hugs and good thoughts. Keep posting. We wan't to know how you are doing, too.

Anita

I am sorry you are going through this. I will pray for you and your family.

So sorry for your Dad & all the family. My aunt was put on constant morphine to be pain free. She only responded to music, you could tell she was hearing it. I hate to see your dad go through radiation, he is a real fighter. I just lost my Dad on 2/15/10. So all I can say is spend every possible moment with him. He will always know you are there & you will come to treasure these moments. Again, so sorry for what you all are going through.

Sorry for your Dad, find a second Doctor and get him help with his pain!!! Semper-Fi Bob

Dianne- I just read your reply-Do you live in Rochester? I am up here taking care of my dad he is West Irondequoit. I live in Mississippi but grew up in West irondequoit. We have a good schedule worked out between my sister and my aunt in Boston my dad will never be alone. He is also doing Cisplatin 2x a wk every 3 weeks. He hasn't had a peg but failed the swallow test and now very worried about lung aspirations. Anyhow- i am spending lots of time up here.

Loratab isn't strong enough.... he needs to be on a long term pain regimen, like a fentanyl patch as well as a short quick action pain regimen like MS Contin or similar. Have a word with the doctors and get his pain under control, it's not acceptable for him to be going through pain.

Netsky, I am sorry to read about your father. As several people have mentioned...pain patches will ease his pain. It is changed every 3 days and he should have something for breakthru pain too. By now I am hoping he has gotten on the fentanyl patch.

If he failed the swallow test, how is he taking in anything? water? medicine?. No wonder he feels so bad, malnourished and probably dehydrated on top of everything else. Poor man. He needs some type of feeding tube right away!!!

When I read posts about someone suffering like this, its so unfair. Is he being treated at a cancer center? It doesnt sound like the doctors are on top of his care at all. Speak up til you get results.

Hello everyone wanted to update you on my Dad. I just returned from my second extended stay and am regrouping with my nuclear family now. Gearing up for the next trip up there in a week. Okay here we go- Happy to report the pallative radiation is working. His pain now is mostly at 1-3 but can go close to zero with the meds. He is doing his second round of Cisplatin this week and rad everyday. In regards to the swallow test his epiglottis not functioning properly and down to 1 vocal cord. About a third his intake going to trachea but he has had therapy to help. Up to this week been okay but now his mouth is full of blisters from the rx so don't now how we gonna deal with all the lidocaine and making sure he gets nutrition. He is such a fighter told the rx therapist to fry him on the table. He said I am a tough SOB. God love him. Christine about the PEG , he really never wanted it to begin with until they warned us of aspiration pneumonia then he was on board. But the Med staff doesn't feel he needs it because he is doing okay job w/ nutrition and doing the coughing to get the stuff out of trachea. I think it may also be an ethical question? My sister and I and my aunt are just spending all our time trying to get quality time with him. I have to say just seeing him not in that debilitating pain is a relief but scared at what is around the corner. Just taking things day by dad being thankful and prayerful.

Your post mentions concern about maintaining nutrition. A feeding tube weather thru the stomach or nose would solve the problem. I dont know of one person who had a feeding tube that WANTED one. Very few tough souls sail thru tx without the feeding tube and without other problems like mouth sores.

Best of luck with your father.

I am so very sorry that your Dad and your family have to go through this. I will be keeping you all in my prayers. Take care.

Nancy T

I lost my Mum to a brain tumor. Its not bloody fair. Now I have SCC of the tongue at 45.I am with the others NO NEED FOR PAIN! you and your Dad are in my thoughts Tony