bone mets "too many spots to list" - Page 2

tricia keegan · 07-30-2009, 12:41 PM

Just wanted to add my good wishes Pam, hope this regime works quickly for you

chrisy · 07-30-2009, 10:48 PM

pam, sorry the news wasn't what you were hoping to hear.

I read a book (one of those how I beat my cancer books - sometimes I hate those!) but this one had one memorable concept:

Positive news is FANTASTIC!! FABULOUS!!
Not positive news is...just information.

So, you have some more information - this will make it easier to follow what the treatment is doing.

Take care
Chris

hutchibk · 07-31-2009, 12:57 AM

Are you getting Zometa?

Jean · 07-31-2009, 01:11 AM

Dear Pam,
Thinking of you and saying special prayers that the TC
shuts down those nasty cells.

Hugs,
Jean

Midwest Alice · 07-31-2009, 06:32 AM

Dear Pam, You will be kicking this IBC once again! I pray you get a long run with this new treatment.

Question:I have looked around a little to find out History of T-DM1. TCH is Taxol/Carbo/Herception. Is Carbo a chemo? What in T-DM1 are chemo?

Now if it is intended for me to go to SABCS I will be there and I will be looking for new treatments for you. I will be asking questions and a voice for all us IBCer!!

I'm so proud to call you my friend. I talk about you to all my friends all the time. Many prayer are comming you way.

You are not alone, I will fight the fight too!

Love Alice

Shobha · 07-31-2009, 10:21 AM

Pam,

Adding my prayers for TCH to beat out the cancer. I too love your spirit and feel a ring of positive note even as you declare war against it!

God bless you with victory!

love,
shobha

Terri B · 08-02-2009, 02:27 PM

Pam,

Hang in there, girl! We are all thinking about you and praying for strength for you!

Pam P · 08-02-2009, 03:19 PM

Thank you all for your wonderful support! I feel pretty good after my 1st TCH last Wed. I'm having lots of pain in my left hip, and a few other places that come & go, but hard to know: bone mets? TCH chemo bone pain? I restarted my water fitness class and me be sore from exercise. Who knows. I'm really fretting over this 'more spots to list' news and praying that it can turn around for the better with TCH. I'll get the addendum to the pet/ct report when I go on Wed. then can see where some of the new spots are & how large they are. Hope everyone had a good weekend. I treated myself to an original oil painting I found on Craigslist - I love it.

chrisy · 08-03-2009, 11:47 AM

Alice,
"Question:I have looked around a little to find out History of T-DM1. TCH is Taxol/Carbo/Herception. Is Carbo a chemo? What in T-DM1 are chemo?"

Carbo (carboplatin) is a chemo.

T-DM1 is actually "Trastuzumab-MCC-DM1" and is a an experimental chemo called DM1 which is chemically linked (the "link" is MCC) to Trastuzumab/Herceptin.

So in T-DM1, the T is Herceptin and DM1 is the chemo, but they are not separate agents, they are combined into one.

It is not yet FDA approved for anything - so is only available in a clinical trial (of which there are several). Presumably the drug will be submitted for approval in early 2010.

Hope that helps.

chrisy · 08-03-2009, 11:54 AM

Pam,

Good for you on the "retail therapy" as well as renewing your exercise program. As you know, you want to continue to get as much exercise as possible.

As you say, hard to know what is behind the bone pain - could be treatment related and a "good" sign. TCH is pretty powerful stuff.

Don't forget, the scan is just information and will be most useful in comparison to your future scans as you track the effectiveness of the TCH. Like when it says "bla bla bla on previous scan is not seen"

Hang in there, we are all sending good vibes and prayers.
Chris

Patb · 08-03-2009, 02:53 PM

I just wanted to tell you I wish you the best with
your treatment and I will be praying and sending
healing thoughts daily while you are in this treatment.
Take care
patb

Carolyns · 08-03-2009, 04:59 PM

Hi Pam,
I am sorry to hear about your news… but I am with Chrisy and I would call it information. Sometimes the news is just the news. I don’t know if it helps but when I was diagnosed with Stage IV they said that I had the spray paint effect… meaning that I had mets on every bone that looked like spray paint. That was 3.5 years ago and I have been on Zometa (and a bunch of other things) ever since. My doctor always tells me that bones are so hard to read…
I am glad to hear that your treatment went well and that you have done some retail therapy. I have my fingers crossed that this will be your magic mix.
Love, Hope, Peace, Carolyn

Pam P · 08-04-2009, 05:28 AM

Chrisy and Carolyn - I like the thoughts that the scan is only information - something to compare to for the next scan. I'm going with that!

Carolyn - are your mets "just" in your bones too? What else has worked for you in addition to the zometa? Are you on a chemo now? I'm on zometa. None of the femara, faslodex, etc. worked for me; chemo seems to be best for me to keep stable.

Thanks again everyone for your support; can't begin to tell you how much it helps!

schoonder · 08-04-2009, 06:55 AM

Genentech just listed a new t-dm1 trial on clinicaltrials.gov registry.
http://www.clinicaltrials.gov/ct2/sh...m=t-dm1&rank=5

Carolyns · 08-04-2009, 08:19 AM

Hi Pam,

I have mets in - bones, liver, skin, nodes (including near bile duct to liver). I have these weird lumps (thickening areas) that pop up when the chemo stops working. I have one on my neck and another on my chest. Once I find a good treatment they immediately go flat. I almost imagine them to be like that thermometer that comes pre-placed in those turkey breasts and it pops out when the bird is ready. You know we must have a good sense of humor about this.

I looked at your treatments and I have had most of the same combos you have had. Hormonals only gave me a mixed response meaning that the nodes and skin would get better and the liver would get worse.

I was not able to tolerate Carboplatin. I only had one dose. The TDM1 trial that I am trying to get into allows for many previous lines of therapy. The objective of this trial is to monitor heart function. The qualification that I needed was to show progression on my current therapy which was (as of two weeks ago) Xeloda and Tykerb. I am progressing.

I hope this helps and that you are enjoying your oil painting.

Love, Hope, Peace, Carolyn

schoolteacher · 08-05-2009, 05:30 AM

Pam,

I was wondering how you have been this week? You are in my prayers and thoughts.

Amelia

jones7676 · 08-05-2009, 07:33 AM

I am thinking of you and I am also hoping that trial opens near me soon as well.

I hope things improve for you soon.....

Sherryg683 · 08-07-2009, 07:05 PM

I am so sorry , this is such a crappy disease. May God be with you during this round of treatment..sherryg

mmoons · 08-07-2009, 08:05 PM

Pam-

You are really so much in my mind and heart. I have been traveling so am now getting caught back up.

I just am so mad that you got this news, But I love your spirit and know this will be the perfect regime for you to kick this sucky disease.

Sending you prayers and healing thoughts,

Maureen

Karen Wheel · 08-08-2009, 05:16 AM

Don't quit girl! I'm with the option of diet - along with acupunture ... fresh - and veg --- lots of it. Its hard but we have talked about this before. But this along with great medicines give your body the best options for beating back the big C.

I have done acupunture for years and it really does help but it isn't over night (yes sometimes you see a big change right away) but I found that I felt a great sensation when they did the therapy but didn't always "feel' that much different immediately after, or from day to day. I believe it was the little changes that it did to balance my body that really helped. I also do Reiki - energy work - which really helps to balance the overall body and energy of our systems. So keep with this therapy with the new drugs - we have to believe that they can work together to stop the buggers in their tracks!

Keep up the faith! :-) Karen