scan results not good darnnit - hello california??

impactzone said:

Surgery or RFA is not an
Surgery or RFA is not an option?
Chip

yes - both
Hi Chip -- thanks for your quick response. Yes, I should have said both are options -- luckily the met looks amenable to surgery -- probably wedge/laporoscopy. And RFA would be another option, I believe (I haven't had that before). The tougher question is what to do afterwards, to prevent or at least postpone further recurrences. And I suppose the question of whether i shd have chemo before surgery or wait till after......Thanks for your concern

Tara

impactzone said:

I have had 2 lung surgeries
I have had 2 lung surgeries for recurrances and go in for CT scan next week. At least in my case at Stanford, Dr Fisher does not want to give chemo with no visible evidence of disease. I asked for options and even clinical trials but none were avavilable for me. I too have Folfiri left as an option for chemo and he wants to reserve that in case something does show up. My lung surgeon Dr Whyte said after these two surgeries (if something does show up), that RFA will probably be my next option due to the amount of tissue already taken. I know that at USC Dr Lenz seems to favor chemo after surgery (based on conversations with 2 of his patients). This debate seems to be a big one right now.
Chip

debate
Yes, it does seem to be a real topic of debate. My understanding is that Mayo clinic also leans towards no "mop up" chemo for folk in our situation. Since my diagnosis , I have always leaned towards the aggressive (conservative?) option. I do understand the arguments for not having mop up chemo -- and respect those. For me, it would be hard to sit and do nothing....knowing I have this recurrence pattern.....but I recognize I may have to do so at some point. I had one lobectomy (left lower lobe -- not the worst one to loose!) and two wedge resections. Last time my lung surgeon viewed my xrays (as I was pleading him for permission to jump on a plane!) he laughed out-loud and said he wouldn't have known I ever had lung surgery. OK -- he is a charming flatterer (there was a visible wedge missing!). But, I have been impressed by my capacity to regain lung funtion. I like to hike and although I am not very fit now (I have been on Xeloda for several months, which has really messed with my feet), normally I can hike uphill reasonably well. How do you find your lung function, after two surgeries? I don't score 100% on those lung funtion tests but I'm not sure how reliable they are anyway......Thanks for your input. It is indeed an interesting debate. I wish you all the best, partner. Good luck with the CT scan next week!!!!!

Tara

serrana said:

scan results
I was a patient of Dr Lenz for over a year; he is awesome and will respond quickly. His nurse practitioner is one of the most fabulous clinicians I have met in 3 years journey.
Lenz actually does biochemical research himself and is in on the very latest before it is published in journals. After my lung met resection he put me on Folfiri the i stands for irinotecan) w/Avastin for 6 months. He believes in post surgical mop up chemo and "maintenance chemo". I have discovered that surgeons and oncologists often disagree about treatment plans and it is really essential that you get several opinions based on your whole profile.
This is a really tricky disease to treat because of the variables involved and frustrating because so many of the docs disagree.
All the best to you
Serrana

thanks!
Serrana,

Thanks -- great information. I have an appt with him early July. He and his NP responded so quickly to my enquires -- I am impressed. Yes, he also seems to be at the cutting edge of research, which is important to me. I am also probably looking at FOLFIRI +Avastin -- either before or after surgical excision of my latest nodule. I am looking forward to my meeting with him. Thanks for sharing your personal experience.

califsue said:

I just saw Dr. Lenz
Hi Tara,

I went to Dr. Lenz for a second opinion in May. I am very impressed with him and his NP. I continue to ask him questions about my case and get an immediate response back from him.

My situation was different than yours, however. I had had bilateral VATs surgery for 3 lung mets and 6 lymph nodes before I went to see him. He very strongly stated to me that he felt that I should not have had the surgery and that I should have had chemo first since lung mets represent a systemic disease. My original oncologist and surgeon recommended follow-up radiation. He said definitely not. His recommendation was Folfiri and Avastin. I also have the KRAS mutation. Dr. Lenz recommended that I get a base line CT prior to chemo and another CT after 3 cycles of chemo to see if it is working.

He was very thorough and easy to talk to. I feel confident that I am in good hands with him. My oncologist is following Dr. Lenz's recommendations.

Please feel free to ask me any further questions. This is a confusing topic as different oncologists have different recommendations. Perhaps, he was being more aggressive with me because I also had hilar lymph node involvement.

Good luck,
Susan

simiar
Hi Sue,
Thanks for sharing this positive experience.
Although I haven't had a formal consult with Dr. Lenz yet, he indicated in an email that, based on my preliminary medical history, he will also probably be recommending presurgical chemo -- 3 mos of FOLFIRI + Avastin. I understand the rationale behind this (at least, I think I am beginning to). Previously I have always had surgery first then mop up chemo. There's a part of me that wants to get the damn thing out. But, I need to try something new -- clearly what am doing is not working! And I need to accept that they cannot keep hacking out bits of my lung forever.

Thanks again,
Tarra