Some questions on treatment 'cocktails'

[OzzieSue]

I have been lurking on the forum since June 06. I have found it most helpful re treatment and side effects. Decided to join as now I have some questions I hope someone out there can answer.

I was diagnosed with breast cancer and bone mets in Oct 05. ER+ PR-. Was put on Femara and Aredia. In Feb 06 felt the lump was growing and there was bone activity. Had scans and showed the bone mets had doubled. Onc suggested immediate surgery and chemo. I was against chemo and spent a couple of weeks at an alternative clinic. After a few weeks felt like it was taking off again so submitted to surgery and chemo. While I was waiting for mastectomy in June and chemo in July the cancer spread to my liver with multiple lesions and a spot on my lung. Pathology report from mastectomy showed Her2+++ but ER- (which is probably why Femara didn’t work). I questioned why ER- when originally ER+. Onc went back to pathology and they confirmed their original report. Started Taxotere/Herceptin weekly, as well as Aredia 4 weekly which I had been having since diagnosis. Because my WBC kept going down, my body formed the pattern of 2 weeks on chemo and 2 weeks off, which I have been doing since Aug/Sept. Felt really well on this treatment and was optimistic of outcome. First scans at 3 months showed stable liver and lung and slight regression of bone lesions – not as good as we’d hoped. Last scan in Dec showed good regression of bone lesions, lung stable but 2 liver lesions had grown.

Onc suggested Tykerb/Xeloda but is not sure if it is available in Aust yet. He is trying to contact colleagues but because it is summer holidays here most places shut down and are only now starting to go back. Even if it is available here not sure if it would be free. I looked through your posts on treatment and found several of you on Herc/Carboplatin/Taxol, and I think one on H/C/Taxotere.

Have I missed any combinations - are they the usual ones? I will email my Onc when I have some feedback so he can do some more research. Am looking for some response to liver but don’t want to stop the bone lesion regression, so maybe Herc/Taxotere/Carboplatin may be the way to go?

So far I haven’t lost my hair, has thinned quite a bit. Do you lose hair with Carboplatin?

Also the chemo nurses were discussing yesterday the order of infusing Herceptin, Taxotere. I have always had Taxotere first then Herceptin, they thought maybe it should be the other way around. After some research decided to stay with Taxotere first. In what order do others have your drugs?

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Looking forward to some feedback

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Sue in Canberra, Australia

[heblaj01]

Sue,
If you meet the admissibility criteria for the EAP (Expanded Acces Program) for Lapatinib (Tykerb)+Capectabine(Xeloda) you won't have to pay for the drugs. This is the rule for non approved drugs offered on a compassionate basis by the manufacturers (at least this is how it works in North America).


If you are interested in the EAP program for Tykerb these are the locations down under (more sites may be opening, check with Glaxosmith kline or Pharmanet which may be the operator of the program for GSK):

Lapatinib EAP Call Center, Herston, 4029, Australia; Recruiting
Nicole McCarthy 1-888-489-5372


Lapatinib EAP Call Center, North Sydney, 2060, Australia; Recruiting
Fran Boyle 1-888-489-5372


Lapatinib EAP Call Center, Geelong, 3220, Australia; Recruiting
Richard Bell 1-888-489-5372


Lapatinib EAP Call Center, Perth, 6000, Australia; Recruiting
Arlene Chan 1-888-489-5372


Lapatinib EAP Call Center, Wodonga, 3690, Australia; Recruiting
Craig Underhill 1-888-489-5372


Lapatinib EAP Call Center, Bedford Park, 5042, Australia; Recruiting
Christos Karapetis 1-888-489-5372


Lapatinib EAP Call Center, Kogarah, 2217, Australia; Recruiting
Jodi Lynch 1-888-489-5372<!-- / message -->

Pharmanet:
Suite 301
2 Lyon Park Road
North Ryde
New South Wales 2113
AUSTRALIA
Tel: 61 2 9900 1700
Fax: 61 2 9900 1799

[Carolyns]

Hi Sue,

I am ER+PR+ and HER positive. I had bone mets, skin, lymph node, chest wall, and one spot on liver (March 06). Started in trial with Femara and 50/50% chance Lapatinib. Had partial response (skin, lymph node, chest wall - all gone) and progression in liver to 7 spots after 3 months. Still not sure if I got Lapatinib or not. Anyway, next we tried Gemzar and Herceptin (hard on the WBC counts). As of December, down to 3 spots on liver so small they are difficult to see after 4 months and bones are healing.

In my case another doctor wanted me to start with Taxol, Carbo, Herceptin combo. I guess everyone has different opinions and all cancers are different. No one knows for sure but it is good to be informed.

Now, switched to Faslodex and Herceptin. I also get a monthly dose of Zometa for bone mets. Will scan again in 3 months.

I am 50 years old and have had a hystorectomy.

I hope this helps, Carolyns

[OzzieSue]

Thanks for the info - everything is a help. I'm pretty sure my Onc hasn't had anyone not respond to Herceptin, so I'm a guinea pig. A few weeks ago he was saying I was medically boring - things change so quickly. I like to be as informed as possible so I can put in my 2 cents worth or at least have some knowledge of what he is talking about.

Could someone please answer two of my original questions -

Do you loose your hair with Herc/Taxotere/Carboplatin? (haven't lost mine on Herc/Tax)
In what order do you have your drugs infused?

[Chelee]

I did TCH. I know I had herceptin first, Taxotere, & Carbo. I'm pretty sure that's the order I recieved them in. (I will check the charts I have here later to be sure.)

As to losing your hair...I lost mine about day 17. Started slowly coming out then in clumps. Most of the women I know all lost their hair on this combo.

Chelee

[BethSh]

The order of my drugs for Hercepton/Taxol are first the Benadryl, Decratron and Zantac. (all to prevent an allergic reaction to the Taxol.) Because you need to wait 30 minutes for those to work, I get the Herceptin first.

I lost my hair on A/C, then it started to grow back during my 3 week break. I haven't lost the fuzz that grew back, but I am told I probably will. I had most of my eyebrows and eyelashes during the A/C, but they are just about gone now.

9 TH down, 3 to go.

Good luck to you,
Beth

[doh2pa]

Hi Sue

I was on carboplatin for 6 months along with a taxane like drug. I lost a lot of hair but it was not totally gone. I had cut most of it off in anticipation so I didn't feel comfortable going out in public that way (it was very thin), but it was fine around the house. It did grow back much more quickly (was sans wig within 2 months after last treatment).

As far as order, I used to get the herceptin first then the carbo and other stuff. However, now I am on a new regimen (taxotere and herceptin) and I get the taxotere first. I never heard of the order being an issue.

Donna