[update to ER post]

Hi and thanks so much for all the kind words.

I actually got a more comprehensive diagnasis today, even though I'm still a little confused. I don't have actual mets in the brain. They see cancer cells in the fluid that surrounds the brain. Good news was that there were no cells in the spinal column or cord. This was done through two separate MRIs.

There is a name for this. I think it's called leptomeringeol metastis

or some kind of disease.

The real problem is what do I do next!!

3 choices so far:

1) WBR which I really don't like at all . I'm not a candidate for Cyberknife beccause these are not tumors, just cells floating around. (I will check on this).

2) A clinical trial just for this exact diagnosis. Going to read about it tonight.

3) some other chemo which I've totally blanked on. I'm very exhausted.

I'd love to hear pros and cons on WBR from anyone. Also, from people who have gone through trials.

Thanks so much

Joan

[update to ER post]

Unfortunately I just heard from my doctor. I'm getting ready to go into the hospital. It seems that a little bugger made its way to my brain. Probably was causing my vomiting. They will do some more tests and then decide on my next step.

They also see some cells in the fluid surrounding my brain. Oh well, back on with the boxing gloves. I really enjoyed my vacation while it lasted.

Joan

[Back in the ER again.]

Well, I got through my daughter's wedding, Thanksgiving and a family birthday party and then Emergency Room when I became dehydrated.

Yesterday, I had an MRI of my brain done because I have been getting headaches and they don't know why I keep getting dehydrated. I've been drinking (water) and really taking care of myself.

If this doesn't show anything (hopefully) next stop will be a gastroenterologist (sp??).

Hope to hear from my doc in the next day or so on the MRI.

I know I shouldn't jump ahead, but I can't help myself. If it does show something in my brain, what is the best route to go with that? Radiation or Cyber stuff?

Thanks all.

Joan

[Dad gets scanned on Tues.....(dad and surrogate updates)]

Andrea,

Just sending lots of best wishes and I'm going to order my cookbook today.

Joan

[Rich~ Dadstimeon--updated 11/22]

Happy Thanksgiving Rich and hoping you're home real soon.

Joan

[I'm Burning My Wig!!!]

Hi Trish,

I totally remember the first day I went without my wig. My head was freezing, but I didn't care one bit.

I was also unsure of what to do, but it didn't take me long to decide to color my hair. I've been doing it now for over a year and what really makes me happy is when I need a haircut!

Congrats.

Joan

[New Member, New Lung Cancer Info Blog: www.OncTalk.com]

My thanks to Dr. West for a very good informative site.

Joan

[Hi Everyone]

Hi Aaron,

So sorry you needed to find this site, but welcome and glad to meet ya. I'm a former Brooklynite with Stage IV. If I can be of any help, please feel free to pm me.

Where are u being treated?

Best wishes to you.

Joan

[Sloan Kettering]

Hi,

I'm a Sloan patient. Why don't you pm me and I'll point you in the right direction.

Joan

[Baby Pics.....]

There's nothing like a grandchild. She is just beautiful and love her name. I have an Ella Rose.

[Asking for prayers]

Welthy,

You've got mine.

joan

[carboplatin/taxol and avastin]

That was my exact chemo . Even after I finished the Taxol/Carbo, I stayed on the Avastin.

My tumor shrunk by 50% after my first scan and I've been stable ever since. I had a slight progression at one point that was handled with radiation.

When I was on the Avastin I was not allowed to take Aleve because of the bleeding possibility, but other than that there were no significant side effects. A little tiredness and nausea and did manage to become dehydrated. Very important to drink, drink, drink.

Good luck.

[Boston Walk]

I want to thank you guys, Rich, Geri, Katie, Tracey, Kasey, all the satillite walkers, everyone involved for helping to find a cure for this dreaded disease.

Joan

[Good News..CT shows progreess]

Candy,

Happy to hear such good news.

Joan

[My interview with Fox]

Hi Jamie,

Fabulous interview and you are an amazing representative for LC.

Thanks for all you do.

Joan

p.s. when are u coming back to NY?

[Lung Cancer Research...particularly detection]

Nick,

I just want to thank you for what you're doing. In my opinion, this is what it's all about. It's crucial that we find a way to detect at an early stage.

Joan

[Please pray for us! Chemo and radiation start in the morn]

You've got it.

[Happy days are here again............]

Geri,

I BIG BIG CONGRATULATIONS on 5 years!!!!!!!!!!!!!!

and thanks for walking on Saturday.

Joan

[Boston Walk Sweatshirt]

Kasey,

I'm totally speachless. What a suprise. I only wish I could be there to cheer you on, but you know I'm doing that from afar.

You really do look fabulous by the way.

Joan

[Silly Sentences Game]

Eggs

Smell

Tasty

Softboiled

s

l

y

d

[4000 for Maryanne]

Thanks Maryanne. You mean a lot to us all.

Joan

[My mom has made it 3 years!!]

Andrea,

I'm so happy for you and your mom. I know I'll be saying the same soon for mom and dad also.

I know I'm not the only one here that is inspired by you. You have so much on your plate, yet you're here for all of us. Well, we're here for you too.

Best wishes,

Joan

[DARRELL, WELCOME BACK!!!]

Darrell,

Soooooooo happy to see you back and feeling well again.

Joan

[Stink-O-Rama]

Kelly,

I had mets to the hip from day one, but after 16 months had some progression there. They did radiation on the hip and it worked great. I am also on Zometa.

Best of luck.

Joan

["New Normal"]

I'll drink to that. I don't think we would be rational not to miss the old normal. It's just that to carry on we have to make the best of what we have.

We're here and that's plenty to be thankful for.

I for one am glad that you (we) have somewhere to be able to say how you truely feel. I hope It takes a little bit of that weight off.

Joan