I've been viewing this site since my mom was diagnosed with oral cancer in Jan. 2003(tonsil, base of tongue behind sinus) I find it comforting yet I was afraid to tell my story. Today I got bad news from my dad regarding my mom. I'M SAD AND SO SCARED!!! My mom could not have surgery due to a weak heart. Her doctors went the 6 weeks of rad and two weeks chemo method. Yesterday they went to see her oncologist and he said the cancer is still there and that more chemo is necessary. I'm devestated to say the least. I knew surgery would have been a big-big deal yet I wish she had that option. I'm so afraid this is it for my mom. I feel like my world is ending. I have two small girls who mean the world to me and I can't be happy right now. It's not fair to them. I'm going to get some help in trying to deal with this. I try to ask my dad questions and he tells me bits and pieces. He has and is still doing an amazing job taking care of my mom feeding her (the PEG) basically he is her nurse. I live over an hour away from them so it isn't easy to get there as often as I would like.

I guess my question is without knowing every detail, what do I do? My dad wants to know what the docs tell him (only). He feels it gives him hope if he doesn't know too much. Me on the other hand I want to know more. Now I'm guessing there is nothing more they can due. They can only give her chemo and hope it doesn't spread. I'm sick. I wish I had more info, but I don't. I love my mom and can't believe I'm losing her to this disease. I've never felt so helpless in my life.
Thanks for listening.
This site has helped me many times. I felt it was time to say hello.

Hi Fuji, Welcome to the forum. Thank you for speaking out and sharing your story with us. I wish it was better news to report - but you have found a place whereas we are always here to lend comfort, hope and support - and in the process, hopefully answer any questions you may have. Believe it or not, I can understand where your dad is coming from in all this - sometimes you feel the less you know about this diease, the more hope you can hold out. On the other hand - knowledge is power, as they say - and it is far better to be prepared and to read all you can on this disease and it's course. The best advice I could give you is to take the initiative and talk to your mom's doctors and find out what's going on! She's your mother and you have a right to know - even if your dad doesn't want to share or know any more than he has to. Do some research....look around this site and read all you can regarding treatments, and what I would also say is...ask the doctors if your mom may be a candidate for an experimental drug or treatment plan. It certainly wouldn't hurt to ask. Wishing your mom and you and your family better days ahead, and sending positive thoughts your way! Good luck and please keep us posted on how she is doing.

P.S. Have you sat down with your mom and had a talk about this and gathered any information that the doctors have told her? This is a time that everyone needs to know all they can - and it has to be a "team effort" with family and doctors working together, to give your mom the best outcome.

fuji,

I agree with DonnaJean. You must find out all you can about this disease and the treatment options available. Just because your mother hasn't responded yet doesn't mean she won't. There are other chemo regimens. But you will need to be her advocate and ask the doctors what else is available. There are biological agents being tested. Recently there have been good results with adding Paclitaxel to Cisplatin and 5FU. Your mother may not qualify for some of the treatments, but you need to at least discuss it with her doctors.

And never lose hope! If you have read any of my posts, you probably already know that about 6 weeks ago, we were told that my daughter would never make it home. We were told to be prepared for her to die in the hospital. Well, the tumors are shrinking and she will be coming home soon! Granted, she is not in remission, but she has had a miraculous turn-a-round so far. The doctors are amazed because they didn't expect the chemo to work at all. It just goes to show that the docs don't know everything. And it shows the power of knowledge. Not to toot my own horn, but I researched extensively, insisted on a consultation at Johns Hopkins, asked hundreds of questions, brought new treatment regimens to the doctors' attention, etc., etc. And Heather's surgeon just said the other day that it is important for me to continue to keep abreast of new developments. There is so much new information every week that it is hard for the docs to be aware of everything, so it is sometimes up to the patients and caregivers to bring new treatments to their attention.

I realize that with 2 young children you probably don't have a lot of free time, but try to become as involved as you can. I'm not saying that in your research you are going to find a miracle cure for your mom, but you can be a positive influence and possibly make a difference in the outcome. Good luck.

Rainbows & hugs,
Rosie

I can't tell you how much all of your well wishes and advice have helped already. I feel like I'm about to have a nervous breakdown. Instead of just being sad I'm angry and mad. My husband is supportive but he's finding it harder and harder because of my attitude. I'm going to do my best to get involved without upsetting everyone. I just wish I wasn't so angry (it is not helping the situation. I'm not angry at my mom or dad. When I get home and have to live normal life I CAN'T DO IT!! Everything and everyone is on my nerves. I'm terrible! I need help if I'm going to fight this thing with my mom. Thank all of you and I wish miracles for all of you. You are so kind to speak to me. It gives me hope (something I haven't had since day one).

I'll keep you posted
Sue

I know exactly how you feel Sue. When I first learned about my husband's diagnosis - I was a nervous wreck (and still am on a lot of days!)..but what was really upsetting was the fact that I could not concentrate on anything - the hardest thing for me to do was to get up everyday and go to my job. Not only was concentration impossible - I was so angry at the people around me. I felt like my whole world was crashing down, and everyone else around me was going on with "business as usual". When it's you or a loved one of yours that is effected by this terrible disease - life is never the same again. But there are also many good days too - and I think a lesson that many people have learned here, and that I hope you will see too is that you should always be hopeful! I'm not saying it's an easy thing to do - and as we all know - there are no "guarantees" of anything in life, but as Rosie's story about Heather shows us - one must never give up hope. Keep it alive in your heart. I would say - harness that anger that you are feeling, and put that energy into helping your mom fight this disease. Keep her spirits up, encourage her, pamper her and let her know that she is not fighting this illness alone. A good mental attitude, along with knowledge about this disease - is the best way to help her out, and you'll feel better about channeling that anger in a constructive way. Wishing your mom and you - all the best!

It might help if you ask your doctor for some antianxiety medication. It worked for me. It may also help you be more effective in supporting your mother and father during this difficult time. Best wishes.

Hi Sue,
When my mother had her heart attack, my father took the optomistic role and downplayed the whole thing. I am very glad that I spoke to the doctor myself to find out the true story so I had a chance to see her again. I never did mention it to him that I spoke to the doctor. It wasn't important - he had his own agenda.

They have made tremendous strides with the new chemotherapy drugs and there is definitely hope for a cure so don't give up! Some of us here were not candidates for surgery either, for one reason or another, and radiation and chemo were our only options.

Your mother, father and children need for you to be strong right now and it's ok to ask for meds to treat anxiety, depression or the rest of the emotional rollercoaster that cancer gifts us with. It'll restore some of the balance in your life and is not a sign of weakness. If I have learned anything from having cancer, it's to cherish each day and that nothing is more important than our families and friends.

Remember also that the doctors will give you statistics on survival rates and that your mother is NOT a statistic. They are almost bound to always give the worst possible case scenario - please do not let this affect your hope.

Rosie.........I been away from the board for a few days so I didn't know how well Heather is doing. She gets to come home!? That is wonderful news, Rosie. You're right about searching for new studies, and taking control of the situation at hand. One has to trust their doctors and feel comfortable with them but doctors don't know everything, nor do they have the time to keep abreast of every new treatment coming along. Seems like they should, but they don't.

If I could recommend two things while going through the diagnoses, surgery, and treatment phase, it would to try and be your own best advocate and if you're not up to it, find someone to advocate for you. The other thing I'd recommend is a PEG tube asap. The PEG just makes everything easier; it takes nothing to put one in, and besides, who wants to eat food that taste like cardboard for six months when they don't have to. There are other things to worry about, I certainly wouldn't make food one of them.

Anyway Rosie, it is always good to hear good things about Heather.....and you. Thanks so much for keeping us all up to date. Kudo's to Heather for the hanging in there. Lot's of love in your family, Rosie. Reading your posts gives me a warm feeling inside. Sincerely, Donna