scan results

harrie · 12-14-2008, 08:44 PM

Joy...just thinking of you...wondering how you are doing....
Maryanne

doh2pa · 12-15-2008, 09:55 AM

Hi Joy,

Well, I think you and I are in a similar boat, sister. Remissions are getting shorter and shorter and my onc is running out of things to try. So I started Doxil in early November (it's a once every 28 days) and I hate it. My quality of life is horrible on this drug and I will not get a third treatment (working or not). My choice.

So here's my encouragement. I am lucky to have a doctor for a husband. Everytime I have a treatment decision coming up, he scours clinicaltrials.gov to look for relevant trials. The last time he looked was June. He just looked recently and was ASTOUNDED by the number of phase I and phase II clinical trials for liver mets. According to his estimate there are at least 4 times the amount of trials that there were in June. That means CHOICES!!! That means more researchers looking for that elusive "one thing" that will work for me and you. I myself am trying to get my liver enzymes down to get on the DM-1 trial. So over the holidays we plan on going over all this data he is accumulating, throwing out the cookey stuff and narrowing the trials down to a few that make sense. I will pass on what we find to you and maybe one of them will be right for you.

I know you don't want to do Cytoxan - I had the same reaction for Doxil (adriamycin in drag!) but every step forward keeps us in the game and I really do believe that these researchers are SO CLOSE.

So let's make a pact, girl, to hang in there together. Cancer sucks, fighting it blows, and its so HARD. So many times I want to give up, but I keep it going for the people who love me and would be devastated by my death. You have people who love you too and their life would be diminished without you.

You deserve to cry and be mad. And if your heart is really telling you that Cytoxan is not right for you, maybe it's time for a fresh look. I have set up appointments in January at University of PA and Memorial Sloan Kettering in NY with other oncologists. I love my onc now, but he seems stuck and out of ideas so it's time to put myself out there and see what happens. Might you consider doing the same.

I am giving you a big cyber hug. Feel free to e-mail me privately. I will keep you posted on what I find.

Hang in there

StephN · 12-15-2008, 11:54 AM

Dear Joy -
Donna wrote a beautiful message and you might have a good ally in her doctor hubby's research.

NERATINIB - I don't know if you have been too heavily "pretreated" to qualify, but I like those result stats. Maybe your onc saw that presentation.

I know just from what I learned from the drug manufacturers' reps at the cancer researchers meeting in April that the number of new drugs coming out of phase 1 trials for HER2 breast cancer is boggling (as Donna's hubby discovered).

Knowing you have a lot on your plate with your kids and Luca and his, you need to save a little energy to heal and fend off the fear. We REALLY do need some peace and quiet time for our bodies and minds to process the many possibilities forging ahead.

This is the time your family needs to "give back" to you, even though I know from personal experience that we do not like to be treated as a "sick" person. I learned to look at that time as "down time" when I could divert some of that outgoing energy to my innermost needs.

Let us know how it goes with your onc visit, lovely lady.

Wishing you a holiday season of Peace, Glad Tidings and, most of all, JOY!

Jackie07 · 12-15-2008, 12:09 PM

Joy,

Just re-read your posting and wondered how you are doing/feeling. Holiday seasons can be tough for sensitive souls like us who are battling for our lives. But
it is also the season of celebration and hope.

Sending you cheers and wishing you happy holidays. E-mail us, call us, post on the board - we want to hear from you.

julierene · 01-08-2009, 08:00 AM

When my mother passed away from breast cancer, and was bald, I told myself if I ever had the choice I would just refuse treatment. Now I find that my hair won't do me much good if I am dead. But in the same sentence, I wanna die with my hair. It makes me so mad too. I just started dating someone new, and my new onc tells me the treatment I had the first time I was stage 4 will cause my hair to fall out. It didn't cause it to fall out the first time, it just thinned a little. Why does he feel like he has to load me down with the medicine that worked in smaller doses the first time? If he loads me down, I will have count problems just like I did the first time and I will have to delay doses. I don't get it. But I tried to argue with him and he just wouldn't budge. It almost makes me want to get a new onc. I want my hair. If the low dose worked the first time, I would think it would be just as effective the 2nd time. Any thoughts?