Hi-
I'm glad we have this new area on the board. I've been diagnosed with lung mets, originally it was thought that I was all clear, but a scan in May found lung mets, which were probably there before and just too small to have shown up on the scan. It's incurable and the doctors are saying a few years if things go well. Right now I'm on Cisplatin and Erbitux.
I used to post with questions when I was in radiation, but since getting diagnosed again I didn't want to talk about it on here because if I were someone just finishing treatment I wouldn't want to hear about someone like me.
Anyway, just wanted to say hello to everyone, and especially to Liz and Amy I always have read your posts and you guys have been through so much yet still manage to dole out good advice and kind thoughts, and I really admire you both.
Also, Minnie, I am sorry you are going through this again, and I will say that so far the chemo has not been bad at all and the anti nausea medicines are really good nowdays. I'd compare it to the kind of nausea you have when pregnant, I eat a lot of small meals and that helps. I hope it goes well for you.

So...thanks for listening, and I look forward to talking with everybody.
Melissa

Melissa,
Thank you for posting--yours is the first post I've read where someone says they have been told it's incurable. I sincerely hope your chemo goes as well as your docs have predicted.
Maybe a field called 'Living with incureable Cancer' might be an idea?
My cancer was first diagnosed as oral, then the fact it's Primary in lung with mets to jaw changed treatment course--so the opposite way round to yours!
Are you feeling well at the moment??

Brenda

Hi Brenda-
Thanks for the post. Wow, I read some of your posts and I'm sorry for what you are going through. When they found the lung mets I kept asking them if they were sure I didn't have lung cancer that spread upwards, but they said that was definitly not the case.
You know, when they first said "incurable" I didn't really understand what it meant, and it's still hard because there's a such a huge range of how long people live. At my last appointment when I asked about the prognosis I got a little lecture on "focusing on daily quality of life" and "understanding how serious the situation is", of course followed up with the "hope for a miracle" clause. Doctors....even when they say all they can you still feel like crap!
Actually, I feel good right now which is why it's so hard to understand. There are many small tumors so I don't feel them yet, no trouble breathing or anything. I get chemo every three weeks and that makes me feel run down, tired for a few days. The Erbitux doesn't have any effect on me except for the acne/rash. I look like a teenage boy with a breakout!
I've gotten the chemo postponed twice already for low blood counts, which is frustrating but I try to keep it in perspective.
How about you? Do you feel pretty good day to day?
Melissa

Hi melissa.Good to see you and glad you fel comfortable posting on this new board.Sounds like you and Bren can be a real help to each other i will follow your progress with interest and who knows melissa miracles have to happen sometimes

love liz

I so agree Melissa--I feel fine today--or certaily much better than I did before my blood transfusion--I'd had about 10 days where I could barely move off the sofa without getting breathless--but that was definitely the anaemia and not the cancer!
The nurses asked me one treatment day--'Do you feel this is helping?'
Didn't really know what to say as I felt fine anyway before treatment started!!
Now my jaw is no longer swollen, no-one would know I have cancer--I go out for meals, walks when on my 'rest-weeks' and do some housework and gardening. I don't think I could cope with going back to work (tho was semi-retired and only doing 2 days anyway!), but generally, yes, my 'battle' is to keep my quality of life as good as I can for as long as I can and have mostly stopped worrying.
I did go thro a phase of refusing to buy any clothes, or making any plans for Christmas etc., but hell, my first jaw symptoms were in January, it's now October and I've had to get my hair cut a good few times!!!
Motto now is 'Be Prepared for the worst, Hope for the best!'

Where in CA do you live? My daughter is in Huntington Beach!

Brenda

Hi Melissa. My husband was dx with a recurrence in March of this year. His original dx was June 06, which was followed with surgery, then radiation and chemo. The recurrence started with back pain early this year, which we later learned was a tumor at is 4th right rib. He also had multiple mets to his lungs and a spot in his neck and a few other places. For us it was tougher than the original dx. Doctors suddenly go from optimistic and tossing around the cure word to being "so sorry." I could barely stand it when they would give us the puppy dog eyes.

I finally arrived at the conclusion that modern medicine has terms like treat and cure, but we as people still have terms like heal and healthy available to us. Joe's cancer is only treatable (according to the docs), but he is healthy and healing. Starting in April, he began weekly chemo infusions of carbo/taxol/5FU, and Erbitux. He is also receiving complementary treatments to help with side effects and boost immunity, and Zometa to strengthen bone (every 4 weeks). To date, he is doing great. He is working part-time, exercising (even doing some light jogging), and doing stuff that he enjoys. He doesn't have the same energy level as before, but this is nothing like the chemo experience the first time around. Other than the nausea med that he gets on infusion day, he doesn't take anything for that or for pain. We attribute much of this to the complementary treatment. He had his first scan at the end of June. After 12 weeks of treatment, the tumor in his back went from 68mm to being completely gone! He went from multiple lung mets to one mass that shows no PET activity and has shrunk by 40%. Everything else is clean. The report described it as a complete response to the treatment. His doc said his results were remarkable. We think they are heaven sent.

So, I'd like to say, don't let anything or anyone make you give up on the healing powers that are within you. We are designed by our very nature to heal. Don't let anything distract you from this fact. Combine the best of all modalities then believe that anything is possible.

Wishing you healing and health.

Chris

Hi Chris,
I was so glad to see your post and hear that Joe continues to do well. What wonderful news!! You two worked hard to find the very best treatment for Joe, and I applaud your persistence to come up with the right combination of therapies.

Other than needing continued physical therapy for spinal nerve injury during his neck dissection, Mike feels good and so far his scans and physical exams show no evidence of disease, for which we remain thankful.

My best to you and Joe,
Tricia

Hi Chris-
Thanks for your post- it is encouraging to hear stories about other people who are doing well on their treatments. I'm getting scanned again in a few weeks to see how it's going, the first scans showed slight shrinkage but not much. Hopefully it is just too early to tell, after only a few weeks. It's true, there's all these terms like treatable, curable, terminal, palliative and it's hard to sort out how to feel about it. I'm trying just to take it one day at a time and hope for the best.

Brenda, I like to garden and do stuff around the house too- during the chemo days I take it easy and watch alot of movies. But the rest of the time I feel ok so I try to keep busy. I quit my job because I have a 1 year old and I figure any extra energy I have I want to give to him. Luckily we have a daycare where he can go on the days I'm getting treated or not feeling up to chasing him. So I tell people I'm "Retired" because I'm not really a stay at home mom! Oh, and I live in the San Francisco Bay Area. It's about 6 hours north of Hungtington Beach.
Thanks again for the replies, it is nice to have some folks to talk to about this stuff!
Melissa

Hi Everyone,
Reading your postings gives me such mixed feelings!
Melissa, you are so young to be dealing with this, bless your heart. I'm praying hard for you, keep your chin up and keep fighting. There are so many new treatments on the horizon, none of us should ever even think of the words "give up".

Chris, your posting inspired me. If they find that I have lung mets (I'll know for sure tomorrow) then I am going to keep your husbands situation in my mind and use it to give me hope.

Brenda, I've been praying for you since day one and will continue to. We can be prayer buddies

Love to all,
Minnie

Just closed my eyes tight and sent healing love and thoughts to everyone
Brenda