Jury still out on lung nodule

[Joan M]

Well one appointment down and one to go.

Today I met with the onc at Sloan-Kettering who said that he's definitely not going to recommend surgery to the surgeon who I'll be meeting with there again on Wednesday.

I kind of figured this would be his response. When I met with him last year, he said that I could take a wait-and-see approach with the first nodule which I ended up having removed. But I really didn't want to wait around for for a 9mm nodule which on a CT scan didn't look very patient-friendly and then which lit up on a PET/CT.

Today he made a few recommendations: Xeloda alone, Xeloda + Tykerb, Herceptin (despite progression) + Xeloda, Stop Herceptin and take only Tykerb, and Tykerb + Herceptin.

He also recommended a few trials at Sloan: MCC-DM1, HSP90 (heat shock protein 90, tanespimycin (17, AAG)), Ertumaxomab for patients progressing after Trastuzumab treatment.

Trouble is my nodule is too small for any trial where measurable disease is a criterion, because it's less than 1 cm and I think that would disqualify me.

I've thought about radiofrequency ablation and stereotatic body radiotherapy but was really leaning toward surgery again, with bigger margins this time (even though my margins last time were clean). I was really not considering chemotherapy.

Problem is when I met with the surgeon two weeks ago, she said that if the local recurrence in the lung turns out to look like a bc met after she has all the slides compared in the lab at Sloan, she's not likely to do surgey.

I expained to the ocologist today that I understand why he's recommending systemic therapy, but that it's also a quality of life issue, meaning that besides the obvious implications of having advanced cancer, the one thing that will keep me awake at night and give me a nervous breakdown is not being able to work because I feel ill from chemo and therefore worrying about losing my medical insurance and not being able to pay my bills -- and all this over a nodule that's the size of half the nail on my pinky. And I don't have any other nodules. And the nodule that's now in my lung has been deemed a local recurrence and not really a new nodule. Worry, worry, worry. I'm worrying already about not being able to work.

I'd like to avoid chemo for as long as possible. When I have more nodules in my lung and/or in other places I'll take chemo.

The onc said that I could take a dose of Xeloda up to the point where it wouldn't affect my hands and feet. I didn't respond to this but couldn't help wondering whether that was like taking AC up to the point where it doesn't make you vomit. Or put differently, at what point would I then not be taking enough for the drug to be effective.

My delimma is that if the surgeon refuses to do the surgery I'll end up having to strike out on my own to another surgeon and that bothers me since Sloan-Kettering is a very respected cancer facility.

May be it's like kicking sand in the life guard's face. I don't know, but that's what it feels like.

I thought that on Wednesday I would just say to the surgeon that I decided on surgery and when does she want to get started. Or just tell her that I've thought about my options and that I'd prefer to do surgery.

Of course I'd have to find out from her how she would approach it.

[Patb]

Joan
I am thinking of you and had hoped this would be
resolved but it seems further study and consultations
are necessary. Waiting and not knowing are the worst.
Please keep us posted and I wish you the best.
patb

[Julie2]

I feel doing surgery may be a good option if it is just one nodule. And chemo is an option available at anytime.

Julie

[Barbara H.]

Hi Joan,
I am on the Herceptin MCC-DM1 trial and have no problem working. Other than Herceptin alone, I barely notice that I am taking anything You would need to get on the phase I trial because your nodule may not be large enough to qualify. It is worth a try.
Best wishes,
Barbara H.

[jones7676]

I continue to follow you closely. I know that Cancer Centers of America has three different approaches to lung tumors:
chemo-embolization, radio frequency ablation and photo-dynamic therapy.
I do not know if any other places offer these therapies. This is the information that they sent me when I inquired.
I wanted surgery and they refused where I go because I have bone mets. I still disagree with thier decision......good luck in your quest. I hope you get the treatment you want.

[chrisy]

Joan,

It sounds as if you actually have several options, and in fact, most of the systemic options are good ones that could work well with minimal toxicity. I've not heard of Ertumaxomab, but as it is a monoclonal antibody rather than strict "chemo", it may be well tolerated. Of course, not having a large enough nodule to qualify for trials is both a blessing and a curse! Small is definitely good.

The Xeloda options may also be better than you think. Xeloda is still effective at significantly less than the standard dosage and it is not unusual to get the dose reduced for the side effects. There was a bit of discussion on this topic in the Herceptin/Tykerb forum. And combining Xeloda with Herceptin or Tykerb would also make sense, even though you have had progression on Herceptin you can still get synergy there.

Surgery or RFA for a single lung met (even if it is a recurrent one) is not "standard of care" so you probably would have to push for it, and your oncologist may support you if you make this decision. Particularly if it is a recurrence of the earlier solitary met vs. a new nodule. Personally, I'd probably also want to go for the local treatment but follow with a systemic which would allow a good QOL.

Whatever your decision, try not to let the "what if's" race too far ahead of you. I know that's hard. But in all likelihood you would be able to continue working under any of the options you have noted. Lots of people on this board have done great with Xeloda and been able to "do their life".

Good luck, keep us posted.

[Joan M]

Thank you all for your responses and insight.

I've read on the board and as Barbara H. mentioned, that the side effects of the MCC-DM1 trial tend to be tolerable. The printout of the protocol for the phase I trial that the onc gave me doesn't say anything specifically about measurable disease so I'm not sure whether my tumor is too small although the onc implied that it is.

Julie, thanks for your note about chemo being an option anytime, but surgery isn't. I'm going to mention that tomorrow to the surgeon.

I know that Sloan-Kettering does RFA of the lung and chemoembolization of the liver but I'm not sure whether they do the latter for the lung. It's interesting as Barb pointed out that Cancer Center of America does not offer surgey as an option but offers chemoembolization, RFA and photodynamic therapy. I've never heard of photodynamic therapy.

Chrisy, thanks for your thoughts on reducing the dose of Xeloda. If I decide to do chemo it seems like Xeloda will be it, so it's good to know that adjusting the dose downward to control side effects is normal. The onc also mentioned about the synergy of Herceptin combined with other agents even though I've progressed on Herceptin.

I like the idea of going for a local treatment and following up with some systemic treatment.

My own onc leans toward systemtic treatment but she would be supportive of my decision if I wanted to do surgery again. I'm just not sure how much weight the surgeon at Sloan will put on her colleague's recommendation.

It's very frustrating as Pat mentioned, and yesterday I was feeling overwhelmed and afterwards felt like I was throwing a hissy fit. Thanks for your patience and hearing me out!

I'll let you know what happens when I meet with the surgeon tomorrow.

[Barbara H.]

Hi Joan,
I would still push for the Herceptin MCC DM1 trail (phase 1). The purpose of phase one is to test the dosages. Therefore you do not need to have measurable disease. I have bone mets that are not measurable. This is a great drug and I think you would have an excellent chance of getting rid of that nodule and any other systemic disease that is not yet visible. You can try xeloda anytime. However, this drug will not be available for a while.

The purpose of a phase II trial is to measure its effectiveness. That is why you need measurable disease. I would really try to get into the phase I trial if it is still open.

Good luck,
Barbara H.

[chrisy]

Joan, I heard hissy-fits were very good for the complexion...so we should all have them regularly!

Actually I just made that up, about the complexion, but we are entitled to an occasional rant and it DOES help me regain my equilibrium!

[Joan M]

Chrisy, thanks. I do feel (and look) better. Barbara, I appreciate your explanation about the distinction between phases I and II of the MCC DM1 trial. I'm seriously considering it.

[runtolive]

dr modi is the lead investigator for the tras-dm1 at sloan..

http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=06-049


run to live

[runtolive]

tras-dm1 study

For more information and to see if you are eligible for this study, please contact Dr. Shanu Modi at 212-639-5243.

[Believe51]

It's Wednesday and I am thinking about you tremendously. Whatever you decide we will be right behind you. When you hear anything please update us, I have been following your journey. Until then, continued prayers and all good thoughts. Lots of Love>>Believe51