Looking at Clinical Trials
 

I talked with my oncologist yesterday about trying a different chemo to go with my Herceptin and Perjeta. I know I claim to be stable, but there are indications that my lung mets are slowly getting worse. I don't like that feeling of slipping into an unmanageable state.

So the first thing we're going to do is increase my Xeloda dose. I've been taking it one week on and one week off. She said to go to 10 days on, one week off. I'll be getting 120 tablets every 34 days instead of 84 every 28 days.

And I'll go to Dana Farber as soon as I can get over there to see about getting into a clinical trial. One new drug that looks promising is MM-302. It uses the same concept as Kadcyla. An antibody delivers a form of Doxorubicin directly to the cancer cells. It's hoped that this selective delivery and uptake will have fewer side effects, especially less heart toxicity. It's a phase 1 trial, but she says if I get randomized to the Herceptin-only arm I can drop out.

Re: Looking at Clinical Trials
 

Amy,

I hope that the increase in Xeloda does the trick for you and that you also get into a clinical trial. I always enjoy reading your posts. They are so powerful and heartfelt.

Take Care
Brenda

Re: Looking at Clinical Trials
 

Thanks, Brenda!

I really like the people in this little club. Not the reason we're in it, but everything else.

Amy

Re: Looking at Clinical Trials
 

Good luck Amy I hope the increase in dose is successful for you xx

Re: Looking at Clinical Trials
 

I pray God leads you to right decision, but I pray that you don't have to yet - that the increased dose of Xeloda does the trick. Keep our "club" posted.

:-) Penny

Re: Looking at Clinical Trials
 

Hi, Amy,
I have been on Gem/Perj/Her since last July. I found it very tolerable. Neupogen shots twice after infusion. There are two doses 1400 and 1700. I was on 1400 until last month, and needed to up the dose. Now looking for a new drug, CEA upticking slowly, very slowly, but upticking nonetheless. Can you look into adding Perjeta? It was no problem for me to get it. My hair is long now. Want to keep it that way. Good luck to you on this new plan, and best wishes always.

Karen

Re: Looking at Clinical Trials
 

Good luck with the increased Xeloda Amy.
Best wishes.... Pam

Re: Looking at Clinical Trials
 

Fingers crossed that the increase in Xeloda will do the trick Amy. You have been through so much I am amazed at your strength.

Re: Looking at Clinical Trials
 

Careful with the Xeloda- After 10 days I had to stop due to foot blisters.....

Re: Looking at Clinical Trials
 

I have nothing to add other than I hope you get an effective fix that doesn't create new issues to deal with. I'll keep you in my prayers.

Re: Looking at Clinical Trials
 

With that much Xeloda, read the articles on Henna/lemon juice slurry to save your feet. Also, bag balm and udder cream with cloth gloves and socks at night.
I would recommend against the addition of Taxotere to TDM-1 and Perjeta as I am not sure it makes enough of an impact with Mets to the lungs. We had them pump the TDM-1 dose on Nina a bit more than the clinical trial and it helped quite a bit with a stray lymph node above her lung. I can be pretty convincing when I need to be.
Keep on pushing the medical community to help you.
Paul

Re: Looking at Clinical Trials
 

I hope your clinical trial participation not only helps you but helps advance the science to wipe this disease off of the planet. I admire you for wanting to participate in a trial.

Re: Looking at Clinical Trials
 

The latest is I'm holding off on looking for a trial. I'm going to move back to Denver in August, so I'd have to drop out pretty soon after starting.

I'll get a scan at the end of June, and see what it shows. I'm on Herceptin, Perjeta, and Xeloda. My lungs sound clear, but I get winded climbing stairs.

Thanks for all the encouragement and support.

Re: Looking at Clinical Trials
 

MtnGirl,
CU Denver is running clinical trials that you might want to look at. Private mail me when you get to the Denver area as I just east of Boulder.
Paul

Re: Looking at Clinical Trials
 

MtnGirl,
CU Denver is running clinical trials that you might want to look at. Private mail me when you get to the Denver area as I just east of Boulder.
Paul

Re: Looking at Clinical Trials
 

Hi all

I live in Scotland, UK and find this site really helpful for information on Her2 treatments.

Unfortunately I was dx with primary and secondary at the same time, a year ago, and it had already gone to my liver, lungs and bones. Im only 49 with 4 kids and otherwise had been in great health!

12 cycles of Docetaxol and Herceptin later and the cancer had all but visibly gone. Unfortunately I had an allergic reaction to Perjeta so I can't take it any longer, and I stayed on perception only.

But a month ago, 3 months after stopping chemo, the cancer was back. Seems the Herceptin hasn't done anything to stop the growth - back in my lungs and very unfortunately 3 small brain mets too (though no symptoms).

Like all of us I am DESPERATE to stay here for as long as I can, for the sake of my family. I have just started on Xeloda and an hoping I will respond as well to it as I did to Docetaxol, but I also know my body can only take so much chemo.

I see there are so many Phase 1 and 2 trials in the US for HER2 metastatic cancer and wondered if anyone knows how a non US citizen would get on them? Or is that a totally ridiculous idea?! I am willing to travel if there was something that looked worthwhile.

Also, what are the most promising treatments for someone like me? I know Kadcyla would be next, though I will probably have to pay for that somehow as its not funded by our NHS.

All leads, ideas, thoughts on what I should be looking at/trying very welcome.

Thanks all

Re: Looking at Clinical Trials
 

I need to ask if you can get care for the brain mets at Pasteur Institute in Paris. They are doing a clinical trial with Intrathecal Herceptin. A pouch is put in below the skin just above the hairline and Herceptin is injected into the pouch. A small tube allows the herceptin to go below the skull into the brain. There is a protocol to do this. In the States, they have a "Compassionate Care" protocol law that means you can get this done at many cancer centers if you have a protocol to use. I am working to get a general "Compassionate Care" protocol developed that can be used by patients. This law was put in place to help with delays in AIDS clinical trials, but it seems to be a way to do the same with other issues.
Ask you doctor if they use Ommaya reservoirs for Brain Cancers. Then tell them you want one for your brain lesions. Private message me and I can forward information that I have found out about.
If not, ask if they will have Xeloda and Tykerb for the chemo. Also, I would think that if the lesions are small, Stereotactic Radiation (called Gamma Knife) might stop the growth of the brain lesions. Generally they need to be under 2 cm in largest length.
I would contact Roche/Genentech Patient Advocate Services to see if they can help with the Kadcyla price. I would mention being 49 and having four children. The cost here is $96,000 for a 9 month treatment regimen, dosing once every three weeks. I am not sure how to get around the problem with your health services limitations.
Lastly, keep reading on this blog. There are a number of new areas that are being researched, including those that have significantly less side effects.

Re: Looking at Clinical Trials
 

Rolepaul - thanks so much for all this amazing info.

I have googled a bit but can't find the trial at the Pasteur Institute, but will spend more time on it tomorrow. And I will ask about the Ommaya reservoirs - sorry, I don't know how to PM you on this site for that info.

They are giving me WBRT in case there's anything else lurking up there (I'm sure there will be) , but i assume gamma Knife is an option further down the line. I did ask my onc about Tykerb with the Xeloda but I can't remember what he said - something about the trial not comparing like with like...? It is also becoming increasingly difficult to access these newer expensive drugs here, though I believe Tykerb is still funded.

Finally, great advice re the Patient Advocate Services too - will give that a shot. Appreciate this so much

Lesley

Re: Looking at Clinical Trials
 

Rolepaul, it must be Institut Curie in Paris.

Re: Looking at Clinical Trials
 

Interestingly, I have no "hand and foot" issues at all from the Xeloda. My fingernails crack and break, but if I keep them cut short they are not a problem. If I do too much cleaning without wearing gloves I get fissures in one or more fingertips, but that happened before I started taking Xeloda.