Had lung surgery to have my tumors tested for chemo sensitivity

[DeenaH]

I had the surgery last Friday and got my results last night. Interestingly, my cancer showed resistance toward the next drug my doctors wanted me to try (Xeloda with Herceptin). Instead, it was very sensitive to Navelbine with Herceptin. Navelbine was second choice with my doctors. I have to say, this testing did change how I am going to manage my treatment. Only time will tell if the testing proves accurate, but I feel like I am at least making an educated guess. I plan to have another PET/CT 6 weeks after starting the treatment to see what it happening. I will be so interested to see the results of that scan! I had my surgery in Long Beach with Dr. Robert Shuman, and the testing was done by Rational Therapeutics and Dr. Robert Nagourney. They were able to get 3.7 grams of tumor (they typically need 1 gram), so they were able to test everything and the kitchen sink. The tumor tissue was taken across the street and was still attached to my lung tissue when tested, so it was very much still alive. The way Dr. Nagourney describes it is that they test the drugs before the cancer "wakes up and realizes it is outside the body". Also, the Navelbine + Herceptin actually killed the cancer with a very small dosage. I am praying that it works the same way inside my body!

Just thought I'd share my experience. I will be sure to post after my PET/CT to let you know the results.

[Ellie F]

Thanks for sharing this info. I will keep my fingers crossed that this test is very accurate and navelbine will sort out these pesky mets.
Wishing you well
Ellie

[Rich66]

Wow. You went the full route having the surgery there in CA. Is that where you're from?
Can you describe the surgery? Was it solely for getting a sample? How tolerable was the procedure?
Thanks!

[DeenaH]

Rich - I live in Norcal, so it was about a 6 hour drive for us. My husband and I drove down the day before and met with Dr. Shuman and Dr. Nagourney. We were both very impressed with both. Especially Dr. Nagourney. He is so intelligent. I am very organized and I have all of my records (Dr's notes, path reports, imaging reports, imaging CD's, etc..) in a binder and I gave that to his assistant as soon as we got there. We must have waited less than 10 minutes before we were called back his office. He had basically memorized my history in that amount of time. He had only seen my most recent scans prior to that day. His offices are very modest. Nothing fancy at all. Old furniture, old building. Very basic. My husband even noticed that his pants were a little too short and had a hole toward the bottom. This man is not doing what he does for money, that is for sure!

As for the surgery, it wasn't fun, of course. But it wasn't that bad either. I have a decent sized scar, but where it is placed, I was already numb from my bilateral mastectomy. I was on Percocet for the first 4 days, then I switched to Darvocet (it has been taken off the market, but I have a bunch left from my mastectomy and I like it alot better than Percocet). My surgery was 1 week ago today, and I am only needing minimal pain meds. I'll probably be down to just Motrin in a few days. I do have some numbness across my ribs on the side the surgery was. I don't know if that feeling will come back or not, but I don't even care. It's a small price to pay if this works. The worst part has been the breathing. It still hurts a bit to take a deep breath, but that is getting easier everyday. I have never been a marathon runner, nor do I want to. Yes, this surgery was solely to get the sample. I know it seems drastic to some, but I just felt in my gut it was the right thing to do for me. I have always tolerated surgery well, but I don't tolerate chemo well. I have had 2 csections, a bilateral mastecomy and sinus surgery. This pain is close to the pain from the csections only it is harder after a csection because you use your abdominal muscles more than your side/back muscles.

I chose to do the surgery down there because Dr. Shuman works with Dr. Nagourney all the time and he knows exactly what he needs for his assay testing. There was also less risk of the sample dying in transit since it just had to go across the street!

I hope that answers your questions

[Rich66]

Thanks.
Was there a discussion about the minimum tumor size to enable getting an adequate sample? Did location in the lung matter?

I'm assuming the surgery was under mandatory general anesthesia.

Did you go without treatment for a period before the surgery?

[DeenaH]

Yes, the minimum he needs is 1 gram (I think it is 1 cm). They were able to get 3.7 grams from my lung, so they were able to do a full panel and tested everything and the kitchen sink on it. I have too many tumors to count (all less than 1 cm), but I had 4 located in my lower left lobe which is easier to get to than the upper lobes. The surgery was done mostly by VATS, but he did have to actually use his finger to feel for the tumors to make sure he got the right spot. A very small section of my lung was removed, but he said I would never notice it. This was much more than a biopsy. Since my tumors were so small, it was good that they were able to get 4 from the same area.

Yes, general anesthesia was used. I was intubated and they had to collapse my left lung and breath for me through my right lung during the surgery. I never even had a sore throat from that. I can't imagine they would allow a surgery like this without GA.

I am currently on Herceptin and Tykerb for my lung mets. I was stable in March, then showed progression on May 12th. I continued on the Herceptin and Tykerb and was not asked to stop treatment for this test. It was noted on my report that the cancer tissue was pretreated with those drugs, which might skew the results slightly. However, I showed such sensitivity to Navelbine/Herceptin that being pretreated with Herceptin wouldn't change his recommendation. It didn't take much of that combo to kill the cells.

I read your mom's history. She has been through so much. I don't know if this would be a fit for her, or if she would be able to withstand the surgery since she is older. I am 40 and my heart is really strong. I have had multiple surgeries and I always bounce back quickly. For me, I knew I could do this. Have you ever talked to Dr. Nagourney? It might be worth giving him a call. We had a phone consult with him from Norcal. We sent my scans to Dr. Shuman first to make sure he could do the surgery safely and get what Dr. Nagourney needed. Then we did a phone consult with Dr. Nagourney to talk about the testing.

[Rich66]

Talked with their staff in the instance I mentioned, not with Dr. Nagourney himself. This is such a good approach but the sample collection can really pose problems. This really should be done from the beginning with the primary surgery. It literally pains me to think how much more effective adjuvant therapy might be. We could be making the absolute most of what's available now instead of banking on more theoretical biopsy characteristics. Aarrg.

[Joan M]

DeenaH,

Thanks for posting this information. How did you find out about this test? Your onc? Has this test shown promising results via trials?

It's a lot to go through for the sample, but I think it was worth it since the first regimen recommended wasn't expected to work well. I had a lung biopsy, VATs, RFA, and a thoracotomy, all in the same lung, and it's still breathing. So I relate to the discomfort and pain involved.

Let us know the results.

Joan

[Jackie07]

Deena,

I'm so happy that you're able to get the test done. Be sure to keep us updated as you move along. We'll be thinking of you.