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scan results not good darnnit - hello california??

taraHK
Posts: 1961
Joined: Aug 2003

Hi All,

I posted a few days ago regarding my upcoming PET scan. Got the results today. Not the news I was hoping for, unfortunately. I have another tiny met in my lung.

This is my fourth recurrence -- I seem to be in this odd pattern where I get a solitary lung met every 2 years or so. Unfortunately, the time window is getting narrower (2 years then 18 months x 2 now 12 months). Also, my chemo options are beginning to run out. (Goodbye Xeloda -- it's been nice knowin' ya).

My oncologist here in Hong Kong has recommended that I see Dr Heinz-Josef Lenz (who just gave a lecture in Hong Kong two days ago!).

I have the KRAS mutation so cannot do Erbutix. But apparently Dr. Lenz and colleagues can now do a genetic test for Ironetecan (CPT-11) (ie to see if you have a mutation/might not respond to the drug). That's one drug I haven't had yet and which my onc is considering.

I know a number of folk on this board have seen Dr. Lenz. I may be joing the club!! I've just sent him an email for a consultation request.

I love that song by Norah Jones and Ray Charles "Here we go again" -- but perhaps not for these circumstances!!

Thanks to everyone for being the best support group I could ever wish for.

Good wishes to all
Tara

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Tara,
Sorry to hear about the lung met. That must be hard having the recurrences occur closer together.
My husband saw Dr. Lenz in February. He was very thorough and wrote the protocol that Dick is following. Dick's time with Folfox 6 has not been too bad.
We really liked Dr. Lenz and appreciate how quickly he or his nurse practitioner get back to us when we have questions. We live in Hawaii so Dick's treatments are here however, Dr. Lenz still will answer our questions.
Best to you.
Aloha,
Kathleen

taraHK
Posts: 1961
Joined: Aug 2003

Thanks Kathleen that is great to hear. If possible I would also like to have my treatment at home here in Hong Kong. But, I am happy (well, willliing!) to fly to LA or wherever for a consult. So it's great to hear he is open to that.

Tara

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

Surgery or RFA is not an option?
Chip

taraHK
Posts: 1961
Joined: Aug 2003

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's picture
impactzone
Posts: 542
Joined: Aug 2006

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

taraHK
Posts: 1961
Joined: Aug 2003

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

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

Doing well with lungs. I just played beach volleyball with the kids today. I coach the sport and they are AAA beach players and now better than I am... I want the most aggressive treatment as well. Thanks for the good thoughts. I do know that Jennifer Weir and Susan go to Dr Lenz so perhaps a message about Dr Lenz on here might draw them out for a more quiet discussion.
Chip

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Chip,

Yes, there does to seem to be a debate on whether or not to give chemo post surgery (adjuvant chemo). My onc chose to not give it to me & another I consulted with after the fact said he would definitely have given it to me. I did end up having a recurrence 4 months after my surgery, and so I always wonder if it would have not happened if I had the adjuvant chemo. I'll never know of course, but I think I'd vote for others to do the chemo right after surgery.

Lisa

christellabelle's picture
christellabelle
Posts: 25
Joined: Jun 2009

It's unfortunate that you have to deal with this again, but listen don't give up. keep your head straight and do what you gotta do. it's not over until it's over. I just added you to my prayer list. You sound a very optimistic person so keep on walking...
God blessed and best wishes!
christelle

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Tara,

I'm sorry your results were not what you were looking for, but you seem like such an optimistic person. I firmly believe you can handle this latest setback. Good luck in your decision making on what to do.

*hugs*

Gail

serrana
Posts: 163
Joined: Apr 2009

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

taraHK
Posts: 1961
Joined: Aug 2003

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.

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

Hey, Tara.

Why is Xeloda no longer an option? Is that because of the hand/foot thing? I've been using it off and on for years, but I'm not sure I really benefit from it anymore.

Rodney

taraHK
Posts: 1961
Joined: Aug 2003

Hey, Rodney,

Well, I guess that Xeloda is no longer an option because I had a new met appear while I was on it. (That is, I was officially NED for a year, then this popped up). One could argue that the Xeloda was keeping the nasties at bay for a while -- prolonging the recurrence. But, it certainly didn't wipe them all out forever for me. I was quite "enjoying' Xeloda, in terms of quality of life (pills vs. infusions). Except for my feet - ouch.

So I will prob be trying irronetacan (sp?) next ie folfiri. Pretty much the only cocktail I haven't sampled yet. Here's hoping.....

How are you? Eastern europe travel plans? I was supoosed to go to Istanbul this summer, then sail up the Turkish coast. All on hold now of course.

Best wishes,
Tara

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

Maybe the Irinotecan will be useful. I'm currently on Xeloda, Irinotecan, and Avastin. After more than a year of rising CEA and growing lung/pleural lining mets, my CEA is finally dropping (although I suspect the mets are still there, judging by the constant pain and pressure). The CEA seemed to start dropping after the Irinotecan was added to my regimen early this year. Also, last fall I tried a single infusion of Oxaliplatin and my CEA droppped afterwards. I reacted so harshly to the Oxaliplatin that I decided that it was not worth it, whatever the benefit. But if you can Oxaliplatin with little or no problem, maybe it's worth considering.

I was back in SE Europe earlier this year, and earlier today was, myself, shopping online for airfare to Istanbul. If not for all these health issues, I'd happily move there (may eventually do that anyway). I've never been up the Turkish coast, but have heard it's great. Maybe you should do that trip regardless of medications and scan results.

califsue
Posts: 80
Joined: Oct 2007

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

taraHK
Posts: 1961
Joined: Aug 2003

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

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

Sorry about this news. You are a fighter and still an inspiration to many of us on this board. I hope all goes well for you with whatever plan you choose. I will be keeping you in my thoughts and prayers..Hugs to you, Audrey.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I hope you find that the Folfiri and Avastin does work for you, I'm glad to hear Dr. Lenz even recommending the treatment I'm on, my first scan of it showed that the chemo regimen had killed most of the cancer, I get a second scan next week and will let you know after I see my doctor on July 8, if it's still working, so far my insides are still soft, and I feel good, keep strong, you can do it, I'll be sending positive vibes your way~

Hugsss!
~Donna

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