I've been monitoring your forum practically daily and even posted a note a while back, but I think it's best I start here, now that I have an understanding of how this board works.

My brother was diagnosed with tongue cancer August 2004. He had surgery in September but the surgeon did not think radiation was necessary since he was so pleased with the surgerey and his reconstruction of the tongue with some grafting technique. Despite all our urging him to seek a second opinion, my brother is very fearful of hospitals, doctors, and the medical community in general. He is 62 years old and I believe he thinks the doctors are infallible.

Well, in January, a PET scan revealed "hot spots" throughout his body, and also the cancer had returned this time also spreading to some lymph nodes. Several lymph nodes were removed from his neck. However, when he went to the hospital 18 April to begin the radiation, the tests he took the previous Friday revealed the return of the cancer to his tongue, and elsewhere in his neck. (Forgot to mention, it's Stage IV).

So, instead of the radiation, which he was mentally prepared for (and the feeding tube), the oncologist decided on 5 days of constant, 24/7 of chemo. He had 24 hours each day of Fluorouracil, and when he wasn't receiving that, he had 1 hour of docetaxel, and 4 hours of Cisplatin. Three weeks later, he had another round of this chemo treatment (again staying in the Hospital for 5 days).

Right after Memorial Day my brother started radiation, combined with a 4-hour dose of chemo every third week. After his first 15 (of 37) he became severely dehydrated, had to be hospitalized and also have a blood transfusion.

Here's the thing: I visited him recently and he seems so angry and depressed. He is very mean to his wife (caregiver) and refuses to talk to anyone (probably because he is in so much pain). He is not taking enough nutrition through the feeding tube (not to mention he's not drinking enough.) I'm afraid he's giving up.

He won't come to this forum, probably because that would be acknowledging he is seriously sick.

So my thought is if you all could give him some hope and encouragement, I will print out the responses and send them to him. Also, his wife needs to become involved in a support group, so if anyone can recommend a local group in the Northern New Jersey, New York City area, i will put her in touch.

Thanks in advance--you all are a remarkable group and i admire the courage of each one of you.

M.

Dear Minick;
I was dx. with oral cancer (buccal) in April 2005, I am currently in treatment. I had induction chemo (cisplatin, taxol, and 5fu continous 120hrs) I now Im receiving radiation twice a day, with 5FU 120 hrs. taxol. I just finished my 1st week of treatment. I will receive 4 more cycles (one week on, one week off)
I also work in the oncology field, ironically head/neck cancer. I have experiance in the quality of life with head and neck pts. I cannot stress the importance of a postive attitude.
It sounds that he is very depressed, his caretaker needs to talk to his drs. about any medications. I have seen numerous pts. like your brother, and it seems that the anti-depressant drugs help.
Are there any support groups in the hospital he is at? How about a social worker they can have a wealth of information for him and his wife.
I have seen pts. with recurrent head and neck cancer be cured and in time return to a healthy life.
A oncologist advised me when I was dx. that a postive attitude accounts for 50% of recovery.
Your family are in my prayers, and stay strong for your brother.
Cindy B

M.
I've been where he is and it's between a rock and a hard place. Well sort of - I didn't have a recurrence but I was certainly angry and abusive to my wife (at least she tells me I was) I was pretty doped up most of the time. I also ended up in the ER twice to be redydrated. it's tougher than you think to drink 2-3 liters of water every day - especially when your throat is burned out and you have to take 30mg of morphine just to drink water. If I had a recurrence as you described, I would be totally depressed and angry at the same time - just as he is. The chemo he's taking now is Cisplatin which is one tough hombre - it's a very humbling experience. It's bad enough to go through it once - but 2 times. But other's have and survived.

I hope he is going to a comprehensive cancer center.

When people are in pain and are afraid of dying they don't always become the saints we see depicted in the media. As normal humans they tend to get a bit P.O.ed and depressed. As a standby caregiver it's tough to watch. I see the same type of behavior from my Dad to my Mom (and directed to me as well). Being human myself, I too can get angry and depressed at it all. Take a walk, drink plenty of water, read or do something that relaxes and comforts you every day. You'll do better and that means you'll help your brother and his wife more effectively. Also, perhaps allow your sister-in-law the time to do the same by taking a turn in her place. The road is long but it CAN lead to a good destination. Use this website and soak up the positive energy of the survivors and their families. Ciao, Tina

Dear Minnick,

I know about recurrent cancer. I had a stage I/II SCC removed from right side of tongue in early Nov 2003 with no node involvement. By late Dec 2003 noticed another growth under tongue. By the time of surgery on 3 Feb 04, it became Stage 4 anterior and base of tongue, floor of mouth, and pharynx. Had subtotal glossectomy, recontructed tongue forearm free flap and other pharynx and floor of mouth fixes lasting 12 hours.
36 rad treatments ending in May 04 with cellulitis infections in June and Oct 2004.
Been on PEG tube ever since. Started swallowing therapy in Dec 04 and ongoing.
It's a long hard road but through the help of family and my therapist I've improved. I ask a lot of questions and always seeks better ways to get treatment. There have been times I wanted to give in to it but somehow was given the strength to keep going. I've tried to keep busy and this is a great forum to correspond with people having similar problems.
I agree that he should go to a comprehensive cancer center. All the best, Jim

M,

The best support group you can find, you have already found. It's right here.

Additional support, if needed, can usually be found at the treating hospital. I have been attending the one at Fox Chase Cancer Center in Phila. where I had my surgery.

Good luck and my prayers are with you and your family.

Jerry

I was hurt by my husbands reactions and treatment of me and the kids when he was in his worst period. I now know that this disease brings about many emotions....one being anger. I do try and control mine but its not always easy.

My prayers are with your brother and all of your family.
Blessing and peace,
Barbara~

Like others have said, you get pretty low. I've never been so depressed in all my life like when I went through chemo & radiation. It still rings in my head my wife yelling back at me that "she did not give me this cancer!" I was taking my frustration out on her, ok, let's just say I was an ass! Time & some work heals all, hopefully. Erik

Thank you all for your responses--if only we could "fast-forward" past these difficult times. But like so many in this forum have suggested--we all take it one day at a time.

Best wishes to all of you!

M.

Dear Minick,

It sounds like a normal reaction to the news he received. We tend to vent our hurt and anger at the ones we love the most. One thing I've learned is that doctors are the same as you and I. Human beings that are not perfect.
The treatment you describe is no walk in the park. Many of us have traveled the path he is and are still around to talk about it. He can to!! I was a stage 4 right tonsil cancer.
I had a reoccurrance one year ago this month along with met's to my lungs. After 6 months of chemo my lungs are now clean. This can be beat.
He has to believe that. A positive attitude has been proven to help.

I am still on chemo, two weeks on followed by two weeks off. (Carboplatin & Taxol)
I hope he gets over the anger stage and puts on his boxing gloves on. Now is the time to fight.
This includes getting enough nutrition to heal and maintain.

Good Luck, Danny Boy