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In May of last year, my friend Paul was diagnosed with Squamous Cell Carsonoma. He had 2/3 of his tongue removed and had a neck dissection. The lymph nodes came back negative and he was doing well. Six weeks after his radaition ended, he noticed a lump on his neck that we all thought was aninfection. We took Paul into see the doctors and they performed a biopsy. We found out that the cancer was back again, this time inhis neck. The doctors were shocked because the lymph nodes came back neg. So they put Paul into another 36 radiation treatments which were horrible. He also got six doese of cisplatin. The huge lump on his neck went away and again we thought we had things beat or at least in check. A couple months after his second go round with radiation and chemotherapy he noticed a lump onhis chin. Again, we took him to the doctor and they told us Paul had cancer for the third time. We got a second opinion and were told the worst possible news. In order to treat the tumor they would have to remove his entire jaw bone and then do a radical neck dissection. Even though his life would be a living hell, he would only have a ten percent chance of survival. The doctor told us not to do it. He told us that out of 100 people in Paul's situation, only 80 of them would be alive in a year. We were so upset. We tried to search out more opinions but they basically tell us that our doctor in Madison Wisconsin was one of the best so stay the course. Right now, Paul is having additional radiation to spots already treated by radiaton which is rather dangerous and can cause complications. He is also having 6 rounds of taxol to help keep this situation in control. He uses a PEG tube for eating because he can't eat or drink anything. He's lost about 55 pounds and now has to wear a morphine patch and also uses other anti pain drugs but his face is so swollenon his right side that he can't even open his right eye. It's a horrible thing to see. He is so tired he can hardly do anything. We're at a loss now and I'm just sick that our time with Paul is just about at it's end. Does anyone have any suggestions or have you been in this situation. What did you do. How were you treated, what drugs, how do you cope with a terminal diagnosis. How do we keep Paul's spirits up. Any information you can send to me would be appreciated.
Brian [email protected]

Dear Brian,

I'm so sorry to hear about Paul's situation. I know there are really no words that can help you right now. The best thing you can do is to be there for him, talk to him about normal, everyday things, and reminisce about all the good times I'm sure you have had together.

Please - contact your local hospice organization IMMEDIATELY. They are staffed with highly skilled, compassionate people who can help you with every aspect of what you and Paul are facing. They know everything about pain control and emotional issues and can help with medical needs and activities of daily living. Their services are usually covered by insurance or Medicare.

Paul is lucky to have a friend like you. Stay strong for him, you will always be glad you did. I will keep you both in my thoughts and prayers.

Barb

Brian, I'm going to echo Barb's comments, having been there with my first wife's battle with cancer. For Paul, try and find a good Hospice organization, they can help both Paul and yourself through this transition.

Second, if there is a support group of both cancer patients and caregivers like Wellness Community, try and hook up with them. I wouldn't have been able to cope with Sharon's illness near as well as I did if it weren't for the wonderful people in the support group.

Also feel free to vent here, we do cyber-hugs.

Take care
Bob

Brian,
Your situation sounds alot like my sister Marcy's.
Her first surgery was January 03, resection of tongue and lymph nodes. One node positive and they told us they didn't recommend radiation. If only we could turn back time and have tried the radiation right away. In June she had a recurrance in her neck and submental area. Then they recommended radiation and chemo. After this she had a radical neck dissection. 2 months later the tumors recurred in the neck, face, and also skull mets and c1 mets. She was in such horrible pain. Her tumors are continuing to grow so fast it doesn't even seem possible. She also got the pneuomonia last week and had to be admitted for 2 weeks. She received the Gamma knife for her bone mets and now they are going to do IMRT for the tumors in the face and neck. Is this what your friend is receiving. They want to try and shrink the tumors so she has longer to live and less pain. She is on a morphine pump at my mom's and still in alot of pain. I don't know how much more of this she can take. Watching this pain in my beautiful little sister is heart wrenching, she is only 32 and has a beautiful 4 year old daughter. We continue to pray hoping God will change his mind and let her stay with us.

God Bless you,
Michelle

Dear Michelle,

I am so sorry to hear of your sister Marcy's condition. I think it is just as diffucult to be a caregiver as the cancer victim. Where is your sister being treated? I traveled to Oshkosh from Kaukauna (35 miles) and was treated at the cancer center at Mercy Medical. Appleton didn't have IMRT
radiation.
The best thing you can do is tell your sister how much you love her and talk to her about all the good memories you have of you and her. Your post reflects such a loving sister. She is lucky to have you as a sister.
Take care and keep posting to let us know how Marcy is doing. There are so many wonderful supportive people on this forum that will offer support and advice.
Your Friend, Dan Bogan

Dan,
Marcy is getting her IMRT treatments at Saint Joseph's Hospital in Marshfield.
We are praying that her side effects won't be as hard on her as her standard radiation treatments were.
Take Care,
Michelle

I am a caregiver in a community based residential facility in Wisc. I urge you to contact the local hospice center in Madison, Wi. Their office is on Cheryl Parkway, right off Fish Hatchery, Working with Alzheimers and Dementia, we use Hospice all the time, and Hospice is the best organization to help you at this time, My prayers and thoughts are with you at this time.

This is for Brian, and Marcy
I have been in both spots, I was the caregiver for my father w/bladder cancer. He battled it for 10 years. I would pray that God let him stay w/us a little longer. After 10 years the dr. gave us 6months, I stopped the prays for him to live a little longer for us. I prayed for him to be taken gently, for we had been told bladder cancer was one of the most painful. I also had SCC base of tongue stage IV. We lost dad July 27, 2003 He told us he would be in a better place and closed his eyes and was gone. I pray that if this thing gets me, I can go like he did. Just be there for your family members, and let them know you love them, even when you don't think they can hear you, they can!! God be w/you and yours!

Joan,

I am sorry to hear about your father. My mother was given 4 weeks to live in March 2000. She passed away December 11, 2000. It was bittersweet because in the end she only weighed 50 lbs at most and to see her in that state was very tough. I cherish the last nine months by her side. In many ways it was the most wonderful time of my life. I, too, prayed for God to be merciful in her last moments because she was so afraid towards the end. The last few days were really awesome in so many ways. I could tell she finally found peace in life at the end.

Ed

UPTOWN
I TOTALLY AGREE, GOD BLESS YOU.