Progression in Lung Mets - Advice?
 

Blah, latest PET/CT shows progression in the lungs. Not much but still progression nonetheless. Tumor markers have been slowly climbing and we thought it was because of the new brain met I had but turns out it was probably due to this lung progression.

Onc is recommending adding Gemzar. What do y'all think? Any experience with Gemzar?

I am feeling like I want to be more aggressive. I'm interested in investigating some of the trials. Neratinib? Purtuzamab? T-cell trial at U of W? What to do? What to do? Feeling overwhelmed and frustrated. What a horrible birthday present - lung mets. Nice.

Re: Progression in Lung Mets - Advice?
 

Aww Courtney, so sorry to hear this news. Hmmm. I haven't had gemzar, so I can't help in that arena. When I had a few small lung mets (along with a couple of small mediastinal node mets) we did Taxol/Carbo/Herceptin, and they were knocked back completely. But that happened before my brain mets and Tykerb...

I get the feeling that gemzar is next on my list of options, too, in the future.

Re: Progression in Lung Mets - Advice?
 

Depending on the view of your onc, a local zapping via RFA or Cyberknife might be in the offing. Joan has been pretty aggressive in this manner.

Did the PET/CT show measurable size increase or more uptake? My understanding of the CT part of a PET/CT is that it's not the best for small differentiations.

Did you get your first brain MRI because of symptoms?

Re: Progression in Lung Mets - Advice?
 

Hi Courtney,

Gesh, I'm sorry this is happening to you. I have been on Gemzar. For me, the side effects were very tolerable. Some hair thinning and fatigue. I have heard some people have done very well on it. I was on it for dermal lympatic invasion on my chest wall after my mastectomy. It keep me stable for about 9 months.

I hope it does the trick for you.

Hugs,
Tonya

Re: Progression in Lung Mets - Advice?
 

I don't know what to do. I just wanted to say I am sorry to read your post.
Hang in there and keep putting one foot in front of the other.

Re: Progression in Lung Mets - Advice?
 

What about some Avastin?

Re: Progression in Lung Mets - Advice?
 

Wishing you well and great results to whatever treatment you choose. ma

Re: Progression in Lung Mets - Advice?
 

Courtney
So sorry to hear about the lung met....but wondering if Avastin might be the answer...i had a great response to it and it is compatible with what you are already taking. My issues were high blood pressure and nose bleeds with it....Chrisy seemed to have good luck on Tykerb Avastin for her liver mets....sorry this was your birthday gift.....we dont always get what we want, but lucky for you they discovered it when it was small and treatable! We have to be thankful for the smallest of things when we get bad news....You are in my prayers to find that magic treatment that keeps you clean and clear!

Re: Progression in Lung Mets - Advice?
 

Dear Courney,

Sending lots and lots of prayers your way!

hugs,
shobha

Re: Progression in Lung Mets - Advice?
 

Courtney,

I have no advice but I wanted to send my support. I have visited your caring bridge journal several times. You are such an amazing women.

I hope that you can soon be back to NED.

Alice

Re: Progression in Lung Mets - Advice?
 

I'm praying for you, your family and your doctors - may they find the best drug to obliterate this met.

Re: Progression in Lung Mets - Advice?
 

Courtney ~
So sorry to read your post. Hopefully you can get the right drug combination for this. You are so strong and I wish the best for you. Sheila said it so nicely about getting the best out of any stinky news. Try to look at the bright side even when it seems so hard to. I wish I could help you. I send hugs and prayers.
Ruth

Re: Progression in Lung Mets - Advice?
 

So sorry to hear your post...here is hoping they come up with something for you...

Re: Progression in Lung Mets - Advice?
 

Courtney,
Well yes, that is a pretty crappy birthday present. You need to demand much better gifts for your NEXT birthday. Yes, I said your next birthday.

I haven't had Gemzar; I do know people who have had good success with Navelbine on lung/liver mets.

If you're interested in trials, make sure you ask your doctor about this. On the one hand, you might get access to a more targeted (and in theory, less yucky) therapy...but on the other hand they are not proven, tried and true therapies.

Get your team working on this, tell them you are ready to bust down some doors and fight this aggressively. Make them give you their best ideas.

Keep the faith,
Chris

Re: Progression in Lung Mets - Advice?
 

Courtney,
First of all I still want to wish you a Happy Birthday.
I am so very sorry that you have had this new development :(

I don't know if this is possible but what about the Trial that Chrisy is on? TDM1? I would seek out any other trials and be as aggressive as you can.

You are so very young and strong so you can fight hard.
I wish I had some answers for you.

Sending you a huge birthday hug.
Jean

Re: Progression in Lung Mets - Advice?
 

Courtney:
Look into the Neratinib Study.
#3144A2-3005WW

Re: Progression in Lung Mets - Advice?
 

Courtney,

I'm sorry to hear about the progression in the lungs.

I've had a lung met which was removed by a wedge resection in 2007. It recurred a year later and I treated it with radiofrequency ablation (RFA). I also had a brain met treated by surgery and radiation. These procedures have allowed me to avoid chemo thus far, since the surgeries, RFA and radiation have made me NED each time. I've been taking only Herceptin since my bc advanced from stage IIb to IV.

Even though I did not have good look with the lung RFA, I still recommend checking it out. I know of other cases where there were no problems. In my case, a fungal ball (mycetoma or aspergilloma), from a common fungus that grows in the soil (aspergillus), grew in the cavity in my lung left by the RFA. But this was a rare occurrence, and the interventional radiation doc wants to do a case study on it.

The fungus eventually caused PET/CT scans to light up, and then I started coughing up blood. This lead to a thoracotomy for another wedge resection in July to stop the bleeding, and the surgery really knocked me on my butt. It was not like the minimally invasive lung surgery (VATS) I had the first time. I really met my match.

However, I was fortunate that there was no cancer, only the fungal ball. And now when I garden I'm supposed to wear a mask.

But, I'd do RFA again in the lung.

I also feel this way about RFA and cryoablation for the liver mets, even though that doesn't apply to me. If a bc patient doesn't have mets elsewhere, it makes sense to me not to stress the liver more by adding chemos that filter through the liver. It's like the liver enzymes are reacting to both the mets and the chemo.

Whichever treatment you choose, I hope it really zaps those mets.

Joan

Re: Progression in Lung Mets - Advice?
 

Hi Honey,
What a kick in the gut; and on your birthday --- UGH! Where is the justice?!
I am sorry I don't know what chemo is best; I suspect your onc is up on the most recent recommended for lung and liver mets. I had good luck with Navelbine and Herceptin; but that was 5 1/2 years ago.
I would like to encourage you to look into a tri com vaccination trial....like this one, perhaps
http://www.clinicaltrials.gov/ct2/sh...ination&rank=3

or google the tumor vaccine group in Seattle and see what they are trialing now.
Good for you for coming right back at it with a fight.
Now go out and have some chocolate, then get back in the saddle.
We are all right there with you. Please keep us posted.
Love Kim from CT