Treebywater

Thanks for the update, Lori. Let your Mama know that we're all praying for her right now and hoping for that miracle too. I am also going to pray for you guys to have some really good, sweet days--that you get everything that needs to be said, said no matter what happens. We're here for you, lady. We are. love, Val

I've been following this for a while now... Wow... If you read about what these parents *have* done for their son, and the passion he has to make his own choices... I just really question the court's decision here.

Unbelievable... There has got to be something mentally wrong with this woman.

((((((Randy)))))) I'm just so sorry. I hurt for you and with you.

(((((Lori))))) I just wish I could hug you in person right now. I am so very, very sorry. So many things I could type, and they all just... aren't right, aren't enough.

My Mom was diagnosed with NSCLC when I was 6 months pregant. I very much understand the feeling that comes with praying for your Mom to be there every time the baby kicks. It is emotionally confusing and excrutiating and on top of that every-freaking-body thinks that you should be "Just delighted!" over your pregnancy--and of course you ARE, but you are also scared. I'm sorry your Mom is having such a rough time of it. I echo Katie--there is hope! Hopefully the right chemo is just around the corner and things will start looking a little brighter. I'm glad that you posted, and I am glad that we can support you through this. If you need an ear about the confusing pregnancy stuff or anything else, don't hesitate to PM me.

Unfortunately, from what I have observed, there aren't a whole lot of folks here with first-hand knowledge about Perifosine. So... you may be a pioneer for us! I hope that it's just the thing for your Dad. Is he having any luck getting through the paperwork and such? That was such an agonizing thing for us. As I said, keep us posted. Val

I'm so sorry things are going so poorly.... Know that we care and we're here.

Mom's experiences with Alimta weren't great, but I know for some people, side effects can be mild, and success can be great. My advice from our experience and from what I've read here is to watch very, very carefully and be your own best advocate. If things feel awful and wrong tell the doctor, and find out what's going on in there. We had to wait so long 'to make sure it had the chance to work' before scans that the weakness that the drugs themselves caused and the progression that came anyway combined were difficult to overcome. It *CAN* be just the thing--I Can think of several people here who had terrific success with it. Some had success with lousy side-effects, and some with the milder ones. But be watchful and vocal about any difficulties that arise.

Also--at that time a year ago they were done with the trials that had anything to do with a placebo group. So everyone on the trial got medicine--they just were tweaking aroudn with dosages. Don't know how far they've come in over a year.

Perifosine was what was next up for my Mom before she became too weak for treatment. We learned that it came in a pill form to be taken daily. It's one of the inhibitor drugs (those are the ones that target the tumors and keep them from growing, right?). I wish I could give you more first hadn information than that. Below is the information that Ginny so kindly scared up for me when we were looking at this option last year. Let us know how it goes! KRX-0401, or Perifosine, is the prototype of a new group of anti-cancer drugs referred to as alkylphosphocholines that appear to be potent inhibitors of the activation of Akt, a protein in the body associated with tumor survival and growth. Akt appears to be inherently activated in approximately 10-50% of most tumor types and is also believed to be activated by, and thus confers resistance to, most anti-cancer therapies. Once activated, Akt exerts its cell survival and cell proliferation functions. Based on its prevalence across cancer types and importance in the control of cell survival and cell proliferation, Akt is considered to be one of the most important cancer targets being researched today. In pre-clinical models and early clinical trials, Perifosine displayed impressive anti-tumor activity, as well as anti-Akt activity. Treatment with Perifosine did not result in myelosuppression, or toxicity to the bone marrow, which is a major side effect of most traditional anti-cancer treatments. Accordingly, we believe that Perifosine is well suited for use in combination regimens with established anti-cancer therapies and, therefore, represents a significant market opportunity. In proliferation assays, Perifosine inhibited the growth of a variety of human tumor cell lines. Perifosine was also tested in vivo in a number of animal models and shows significant single agent anti-tumor activity. Additionally, Perifosine strongly enhanced radiation-induced apoptosis in human leukemia cell lines, as well as the anti-tumor activity of cisplatin, Adriamycin, and cyclophosphamide in the DMBA-induced rat mammary carcinoma model. The combination regimens were superior to chemotherapy alone and the combinations were well tolerated. Three Phase I studies of Perifosine have been completed in Europe and two other U.S.-based Phase I trials with the NCI pursuant to the CRADA arrangement have been completed or are nearing completion. Data from these trials demonstrates that Perifosine is a safe drug with a reasonable toxicity profile and no observed myelosuppression, or bone marrow suppression. The dose limiting toxicity in each Phase I study was gastrointestinal toxicity, primarily nausea and vomiting. Perifosine also displayed preliminary single agent activity as evidenced by a total of two partial responses and 16 disease stabilizations in these heavily pre-treated refractory cancer patients. We believe this data confirms the anti-cancer activity of Perifosine and that Perifosine represents a new class of anti-tumor agents that promote apoptosis and block cell growth signals. Please see "Clinical Trials" for more information.

(((((Cindy)))))) It is just so very, very hard.

Thanks Katie! That's what I get for staying up on the computer WAYYY to late.

I thought this was a pretty decent look at the, "Just have a positive attitude and you will beat this!" attitude. http://www.humansideofcancer.com/chapter2/chapter.2.htm

(((((Bronwen))))))

((((Lori))))) Well crap! Of course, I'm always praying for you all.

I'm so very sorry.

It looks great!!!!

Awesome, Awesome. I know many, many people will benefit from your group, and from the bookmark too!

LOVE IT!

Gosh--I just realized I had the month of hospice being referred and her going, wrong in my profile for a really long time... how did I miss that??

One Year Today. That's all.

Can I just say that thanks to West Wing I know 3 of these?

Praying!

Awesome.