Brain stable, but new Torso Mets - What's Working for You?

Emmay · 04-17-2009, 07:59 AM

My sister had been on CPT-11 (Irinotican) + Avastin + Herceptin since May '08, and the combination did an immediate and consistent (and miraculous) job of eliminating&stopping brain mets, so much so that her neuro-oncologist in March'09 said she could drop the CPT-11 and see how she did on Herceptin+Avastin.

But in March she had a couple of bouts of nausea, which seemed to be the flu, since her kids had it. In the last few weeks, she'd been feeling mild-mod. nausea 1x day -- MRI and brain scans clear, but CTscan of torso shows signs of early small mets in liver, pleura (membrane lining of lung), and bone in one back rib.

She remains on Herceptin and Avastin, and her oncologist added Xeloda to combat new mets in torso - will monitor closely and change chemo if Xeloda doesn't work. What have you brave and stalwart sisters found to be effective in shrinking mets in liver, pleura (lung lining) and/or bone?

Many thanks.

Emmay

chrisy · 04-17-2009, 08:33 AM

Hi Emmay,

Wow, your sister is one strong lady, and lucky to have you by her side.

Often times the Avastin really needs to be used in combination with a chemo agent - at least that was the case for me when I was on a trial of Tykerb/Avastin. The T/A kept me stable but only for 8 months.

I haven't had a lot of different chemos, but know of people who have had great success with Navelbine on liver/lung mets. That might be a good option but I'm hoping for success with the Xeloda.

There are lots and lots of chemos out there as you know, and despite your sister's long history, there are actually lots that she hasn't even touched.

You could also look into DM1 trials, the ones currently recruiting are getting pretty strict on exclusion criteria but it would not hurt to ask.

Good luck, keep us posted!

Mary Anne in TX · 04-17-2009, 04:38 PM

Emmay, I want to chime in and tell you that I pray your sister finds just the right answer to ease her fears and begin to deal with those dastardly cells that would cause so much trouble.
Keep looking for what will work best for her. ma

pattyz · 04-18-2009, 09:30 AM

Emmay...... I'm just so sorry to hear of your sister's added burden...

I did well for viseral mets on Navelbine/Herceptin. I am certain there are 'new' combinations that have proven better than the singles... Have you looked in the archives in bcmets.org?? That is where I have seen these newer combos. Here is an example of one:

ASCOâ€"Adding the investigational agent ixabepilone to capecitabine (Xeloda) resulted in a significant improvement in progression-free survival (PFS), compared with capecitabine alone, Linda Vahdat, MD, of Weill Cornell Medical College, New York, reported at the American Society of Clinical Oncology 2007 meeting (abstract 1006). The study included 752 patients with metastatic or locally advanced breast cancer resistant to anthracyclines and taxanes.
Larry Norton, MD, Deputy Physician-in-Chief for Breast Cancer Programs, Memorial Sloan-Kettering Cancer Center, told ONI, "I think this is one of the more interesting studies presented at ASCO this year. It appears that ixabepilone is helping a population of patients who are not responding to capecitabine."

And another:

ABSTRACT: Capecitabine and Mitomycin C Is an Effective Combination
for Anthracycline- and Taxane-Resistant Metastatic Breast Cancer [Oncology]

Fifty-three patients (median age 62 years) with
anthracycline- and taxane-resistant, metastatic breast cancer
... A median of 6 cycles were given ..with a complete response observed in 2 patients (3.9%), partial
response in 17 (33.3%) and stable disease in 19 (37.2%). Overall
response rate was 37.2% (95% CI, 24.0-50.5%), with a median duration
of 10.4 months. Median time to progression was 8.1 months and median
survival was 17.4 months (1- and 2-year survival rates of 60 and 28%,
respectively).

Hope these examples will get you started. You do know that I have saved your sister's history for myself, right? Which is now helpful with my slowly progressing brain mets.

love & hugs to you and sis.
XOXOXOXOXOpatty

Believe51 · 04-18-2009, 10:44 AM

Emmay, I cannot offer any medical advice here but I am able to send you and Sis some added prayers. I am sorry about the new problems she faces. I will keep you in my thoughts as you help her to get on top of these issues. Both of you are very blessed to have each other, what a team!! Stay strong Emmay and please update us on her progress of overcoming this.>>Believe51

Emmay · 04-19-2009, 08:45 PM

Thanks so much for all your wonderful support, prayers, and detailed suggestions, PattyZ, Chrisy, Mary Anne and Believe51 -- I truly appreciate your sharing your experience and wisdom, and will keep you posted on how things go.

Emmay

Believe51 · 04-19-2009, 09:27 PM

Please do Emmay, I will be following her journey and thinking of you both. We never have to walk this walk alone.>>Believe51

Believe51 · 04-27-2009, 08:24 PM

Emmay, how is Sis fairing today? She has been on the mind. I know you may be busy getting this organized but please know we are here when you have a minute to update. Sorry to be an inquisitive pest but I cannot control myself (smiling) Refreshing those positive vibes and sending them your way.>>Believe51

Believe51 · 04-29-2009, 11:18 AM

Emmay, saying extra prayers for Sis and you tonight, after all Wednesday nights are for reinforcements. Sending you a peaceful smile until we speak again, I know you have been so busy.>>Believe51

Emmay · 04-30-2009, 10:23 PM

My sister was in Florida on vacation with her family from the 4/17 to 4/24 -- she was experiencing regular nausea (even though Zofran was supposed to help prevent it) so her oncologist switched her to Compazine, and she did a little better on that, but not great. She is on a schedule of 7 days on Xeloda, 7 days off, and just started her 2nd round of 7 days on. She had her infusion of Herceptin and Avastin this past Monday, 4/27, and I am getting a slightly postponed MRI rescheduled for her. She still doesn't feel very well, which seems to be mostly due to the problem in her liver... I will post when we have a better idea if Xeloda is helping at all or if we need to try something else.

Thank you all for your prayers and concern.

Emmay

Believe51 · 04-30-2009, 11:30 PM

Thanks Emmay, I will continue prayers and shall anticipate the wonderful response that Sis will have when our prayers are answered. Until then my friend take care and remember you are in my heart.>>Believe51

Darlene Denise · 05-01-2009, 08:03 AM

Emmay: We have pm each other in the past about brain mets. So glad the brain is behaving. I am on Xeloda too for a 1/14/09 liver recurrence. I have found several little tips to help with the GI issues. I take Protonx twice a day. I take lactabacillius in the am. I use the capsules that are very tiny that I found at Walgreen's. I take all of my meds except the Xeloda when I get up. Then I eat breakfast and take the Xeloda with water as soon as I am done eating. I wait about an hour and have half a banana. I eat small amounts through out the day. Eggs and bread are my mainstay. I take the Protonx hour before dinner and the Xeloda right after dinner and eat something about an hour later. Usually a ice cream sandwich! I am also eating yogurts as some of my small meals.

Anyway, I had horrid GI issues in the beginning, had to go to ER and hydration everyday for a week. We reduced my dose and all of the above steps I mentioned have really cleaned things up and I am tolerating it very well. I no longer have to take any anti-nausea meds or Immodium.

I hope this helps you in some way. I think of you and your sister frequently and send my well wishes!!

Love and hugs...Your friend Darlene

Emmay · 05-04-2009, 06:04 PM

Darlene, thanks very much. I've passed your information on to my sister; we really appreciate your sharing what worked for you.
Emmay