Not What I wanted to hear
 

Sounds like I may be getting off the Taxol train for good...I am showing progression....I had Taxol with herceptin today, and will repeat 1 more time in 2 weeks, if my neck nodes don't respond, I will start a new course in a month. The oncologist mentioned either Gemzar, Ixempra, or Doxil..and of course the mighty H. I asked about the MCC/DM1 trial as Rush will be placing people in it soon in Chicago...in the final prep stages...so I am here asking for suggestions...my oncologist always tells me I should work there, I know more about upcoming things than some of the nurses there...THANKS TO MY FAMILY HERE!!!!! Not the news i wanted, but I got over a year out of the Taxol, so I am happy...now just need to find something else to keep the nodes in check....CANCER IS SO SMART....it figures a way to go around the treatment and have its way!
Any ideas?

Oh Sheila - rats, rats, rats

I am sorry that Taxol has stopped making magic for you. It is difficult to suggest what should be next. Firstly, can you get pathology done on whether you are Top 2A positive? If so, Doxil (a pegalated form of adriamycin) might work wonders. However, would you be able to stay on Herceptin concurrently as both drugs are hard on the heart and together they can be even harder.

Another thought is the trial and then you still have a huge arsenal of the chemo drugs left.

At least you have over a month and if you choose a trial, you can have all the paperwork done by then.

I am holding you in my heart girl.

I'm still new to this but why would the onc not try tykerb along with herceptin, it seems it would have twice the punch. Maybe they save this for later. I'll be thinking of you.
Melissa

Hi Sheila,

Dang, it's not what I wanted to hear either. I'm sorry...I truly am. However, you have an arsenol of things yet to try so I am confident you will find something to kick this crap to the curb.

Sending you love and prayers for peace and healing Sheila.

Mary Jo

Sheila,

Darn. I wish I had some wise advise for you but I don't. I just wanted to let you know that you are always in my thoughts and prayers.

Thank goodness for Becky and the other well schooled patients / advocates on this site. I am sure that with their help you will continue to help educate the nurses at your treatment center and keep you doctor on his toes. You will make the best informed decision and kick this cancer back again.

Love, Hope and Peace,

Carolyn

Sheila -

I am sorry to hear of your progression, but I know you will continue to fight... as Becky said, there are many chemo options open to you, I know one of them will work its magic.

all the best
caya

Oh Shelia, none of us want to hear this latest news about you. You are an amazing woman with such a fighting spirit!! You will handle whatever is next with the same determination you have all along.

I agree with you about the knowledge we gain from each other here. What in the world would we do without it????

Let us know what comes next. We are all pulling for you!

Much love,

Sheila,

Sorry to hear about the Taxol. There are other drugs but you may want to try the trial first if you can get in. I tried to enroll in the basic MCC DM-1 trial (there are now several going on as noted on the NIH's website), but it was closed. I hear that the conjugated "smart bomb" is producing some good results.

Someone in my local bc support group is taking Herceptin and Doxil and she is doing fine with it. I think trials have shown that cardiac toxicity is not an issue, but Becky has a point and you should mention it to your onc to make sure, if you decide to go that route.

Praying that whatever your course, it knocks out those neck nodes!

Joan

trial
 

Hi Sheila,
I am sorry to hear about your progression, but I also feel that you deserve a break from the difficult chemos. The Herceptin MCC DM1 trial is getting very good results. Read my previous posts. For many people the side effects are not much worse than Herceptin alone. In addition, you would get your hair back. I would encourage you to try and get into this trial and it may give you a very good quality of life. You will have to be off all treatment for a few weeks to get into it.
Good luck,
Barbara H.

Sheila, I'm sorry to hear your news about having to switch from Taxol to another drug. You hang in there, girl. Thanks for keeping in touch. I've been wondering how your mom is doing? Love ya, Bill

Shelia,

I will be keeping you close at heart as you begin a new treatment plan.

Tonya

Hows about Abraxane in place of Taxol?

I've got stronger words than rats
 

but I remembered we are in Joe and Christine's living room. So instead, I'll quote my 12 yo niece: That sucks the biggest thumb in the world.

As Becky says, it may be of value to get new biopsy and recheck some of the pathology.

Becky as usual has the ultimate approach to looking at your options (of which there are many, don't forget) but Brenda may be onto something with Abraxane - although I remember BCBS denied that before, it may go through now that Taxol has failed.

Or, taking a break from the taxanes for a while and hit those nodes from another angle (just when they thought they had figured it out)! Like, show them you are WAY sneakier than they are.

I know you have a great team at Rush and will explore what's out there.

The new DM1 trial is beginning to open at some locations, and it's definitely worth checking those out. I'm sure you would be eligible for the new trials (or possibly others that are out there) and then as Dr. Rugo would say "you still have all those chemos" if you are in a study that doesn't do it for you.

Sheila, I'm so sorry you are having to deal with making changes again. I'm wrapping my heart around you right now - can you feel it?

Keep us posted on what you're considering.

Not what I wanted to hear
 

I am sorry to hear about your news. Keep putting one foot in front of the other and keep learning about all the options. Knowledge is power. Keep after your oncologist and participate in your care as much as you can.

My onc thinks the same thing about me, Sheila... but we are all Jr. Oncologists due to the power of this site! I know you will stay on top of it and find the next magical potion. Hey - how's about a little Tykerb/Herceptin?

Sheila,
There are still many roads to go down with treatment.
Just need to find another bullet to shoot....

Not want I want to hear either :(
Love you Sheila!
Jean

Pinkie, you said it all! I thought about Sheila all the way to work. Hope I didn't run any stop lights.

Sheila,
I'm also thinking what about Tykerb for you (you already have the diva bag after all). As you know the approved combo is with Xeloda which you have already had, and it worked well for you a long time - but it was over a year ago now and might be a viable option. Or of course, Tykerb added to the Herceptin and/or maybe a different chemo.

Again, I know your team is very creative and will look at all options. I'm hoping your next regimen will not only kick the heck out of the canser, but also be a little easier on YOU than the taxol. You need a break (and the cancer needs to be broken).

Don't tell my boss, but I will probably be concentrating on your well being all day long instead of my work.

Much love
Chris

lapatinib
 

Hi Sheila,

I might be mistaken but I thought you had lapatinib at one time previously? I too think Becky's suggestions are worth considering. I just wish you weren't going through all this, and I hope things go better for you.

AlaskaAngel