Well i thought i would get the ball rolling by saying thanks to brian for the welcome addition of a place for those unfortunate enough to be suffering a scare or recurrance of their cancer.I am sure it will be a great board once every one gets familiar with it.

And I guess I will have the honor of being the first "unlucky" to post here.

I saw my primary care doc today and he said he will do everything within his power to get my insurance company to cover treatment at Hopkins. Hopkins called us today and as soon as I get a clear chest CT, they will schedule the surgery. I'm anxious to have it done and scared to death to do it. I just wish I could fast forward 6 months or so.

I didn't have chemo with the first go around. I'm nervous about that, I hate the unknown territory of it. I'm also very nervous about vomiting with my throat being so "different" since radiation. I can't even imagine vomiting.

But, one step at a time, baby steps, and then recovery and remission I pray.

Love to all,
Minnie

Today, hopefully, I get my last chemo Minnie--I haven't been sick once, and have been given tablets---teeeny, tiny ones to take in case of nausea--at every visit.
So hang in there Minnie and put that thought way to the back of your mind!
Brenda

Thanks Brenda, that takes some of my nervousness away. Glad you're doing well with your treatments.
Minnie

Minnie,

I too, am dealing with another round of treatment. My doctor wants to do a 2nd neck dissection (same side, just lower) because of a swollen node that popped up in the last 3 weeks. A needle biopsy last week was inconclusive and showed atypical dysplasia. He is aggressive and wants to get everything out. If pathology after surgery shows any cancer, it will be chemo for me too about 6-8 weeks postsurgey. Let me tell you, it is no fun to throw up with our "changed" throats and minimal saliva. I won't go into a description but you can imagine! I had chemo before with the radiation and am not looking forward to losing my hair again but it does grow back.

I can relate to all your emotions right now - I just started back to college this fall and was perfectly happy and then boom - the hammer fell last week- now I'm trying to take the first round of tests in my classes with this huge distraction and wondering if it's even worth trying to keep up with the classes because it's going to take at least 5 years to get my degree it dietetics/nutrition - I want to work with head/neck patients. So in my dark moments, I tell myself I probably won't even be here in 5 years but that darkness doesn't last more than a few minutes and I pick myself back up. Like you, I have a great husband and as you said, I'll be damned if I'm going anywhere and let someone else have him! Let's both have a good day!

Pam

My husband's cancer has spread to the right lung too. His BOT and neck area are still clear and bone scan and MRI are also clear, but he had so many nodes involved that we knew the spread was a real possibility. He is scheduled for several months of chemo, cisplatin and erbitux, starting Sep 26. He wavers as to if this is even worth the trouble. He feels fine now---is not sick and has strong lung function. The idea of bringing sickness on now that he still feels well is almost too much for him to deal with. He will get the cis/erb combo the first and fourth week, and week 2 and 3 only erbitux. I feel like I can't pressure him into treatment, but want him to at least start, and if it gets too bad, then he can stop. He had 2 sessions of cisplatin during radiation and did well--was not too sick from it. He is also permanently on a PEG tube. He never recovered swallowing function well enough to sustain and he aspirates. At times he just wants this to run it's course and be done with it. This cancer is evil incarnate.

Oh my gosh, you guys did it. We all did it!! This portion of the website is going to be so valuable for both the patients and the families of those suffering a recurrence. Thank you Brian!!

Minnie, my heart and prayers are with you every day. I haven't been posting lately because it all gets to me sometimes. I've been on this Board for so long and have gotten to know and love so many of the people here. My heart goes out to you. I wish I were stronger and could be more supportive on a continuing basis. I am just so angry that this disease exists and so horribly angry that it took our Aunt. I'm still dealing with that. But Minnie my friend, you are a woman of great faith. You're also clear headed, informed and driven to find the best care possible. I fully believe that you can win over this beast. I know that God is watching over every step you take.

Cookey, you are a fantastic lady and I SO admire your character, your strength and your courage. You're going to help a lot of people through their struggle with your knowledge and kindness.
An unbeatable combination.

Brenda, you're strong. Take it one day at a time.

Hi Pam, I never spoke to you before but I am awfully sorry that you're in this spot again.

As far as Chemo and nausea go..... my Mom had eight rounds (was supposed to be nine but her bloodwork wouldn't support the ninth) of a triple cocktail Chemo for breast cancer. Platinum based, mixed with 5-FU and something else that I can't remember. They gave her Compazine, Ativan and a third thing. Most everyone else threw up but my Mom didn't. She came home from Chemo and I made her something to eat every time before she zoned out for three days straight. If one anti-nausea drug doesn't work for you, there are plenty more to try. Not everyone throws up. She absolutely did lose every last strand of hair on her beaner, but hair grows back.

Lastly........ ah crap, my husband's mother, Aunt Rosemary's sister, was diagnosed with three different types of cancer in June of 2006. She has SCC in the lymph nodes in her neck, lung cancer but they can't distinguish what type, and neither of those two are the primary. They hit her hard with Cisplatin and 5FU, three rounds megadosing all day infusions last Fall. She's been good since then, until now. She has a mass on her lung. They haven't biopsied yet so we don't know which cancer it is. Her doctor is unbelievably (the idiot) giving her megadoses of antibiotics to see if it's an infection. This line of treatment, this delay in finding out exactly what's going on- is beyond belief!! But my husband's mother is a very ignorant woman and believes that her doctor will tell her whatever it is she "needs" to know. I feel so bad for my dear husband who just keeps telling me that no one can tell his mother what to do.... I just know in my gut, that this is going to be bad. One day at a time.........

Hugs,
Lisa

I,too, am very glad to see this new board. Thank you Brian. Amy

Minnie,

When i had my chemo three years ago, I never vomited once. The anti nausea meds they have no are very good. Also, make sure you take them as a preventative, not when you begin to feel sick. I have found that ttoo many of us take the anti nausea meds too late to be of great help. I took mine every day, whether I was having chemo or not. I found it helped.

Steve

Dear AngAk-
I'm on the same treatment. I can't speak for everyone but it has been fine so far. The chemo(once every 3 weeks) makes me tired for a few days and I feel a little nasueas but not too much. Then the erbitux is once a week, the only side effects are that they give me benadryl before the infusion which makes you groggy for a few hours, and I have the rash/acne which most people get. The rash isn't too bad though, and the doctors keep an eye on it.
I had radiation back in February and that was much worse than this chemo/erbitux has been.

Melissa

Hey Everyone,
I had my spiral CT of my chest done today and will get the results tomorrow. If the small spot is indeed radiation scarring, then I'll have my surgery on Sept. 25th at John Hopkins. If the spot is cancer, then they will treat that first and see what happens. So anxious tonight, as you can see by the 3:08am posting!
Keeping you all in my thoughts,
Minnie

Hi Minnie - My thoughts and prayers continue to be with you, too. Hang in there a little bit. I've found that whenever I am anxious about something, it does help to come here. i'll be thinking about you and visualizing some positive results for you.

Thinking of you Minnie--and hoping so much it's nothing to worry about, but in the wee small hours, we worry about everything don't we??
Brenda

Brian

Great that there is a place for people with the recurrences to post ..SUX that it even exist !..

hello to All !! YOU HAVE ALL BEEN ON MY MIND AND IN MY HEART!!


SHAR

So how ARE things with you Sharlee?
I know you said you needed to take a break/step back, but how are things health and family wise??

Brenda