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Growth in Lung Mets - help please

Kathleen808's picture
Kathleen808
Posts: 2340
Joined: Jan 2009

Dear Friends,
I have been checking the board regularly and keep so many of you in my thoughts and prayers daily. Dick has now been at the fight for the past almost 4 years (January will make 4 years). After he was clear awhile (June 2010 - January 2011) he got multiple lung mets. Those have been shrinking or stable but now they are growing which is scary as hell. The growth since April has been about 2mm on about 6 nodes. So he now has 5 nodes that are at 9mm and 1 node at 10mm (1cm). He has been on a reduced dose of Folfori + Avastin every 3 weeks. He does really well on his non chemo weeks, is working on his Master's Degree, working out, enjoying the surf and even selling a house or two. (He can't work at his career job as he is an airline pilot).

We thought that with this latest scan we would go to Sloan Kettering and ask that a tumor board look at his case. However, on the first look the oncology nurse made it seem like they would not take Dick's case. Hmmmmm...... It actually freaked him out a bit.

What we really want is for a group of experts to say what the best course of action is at this point. He has not had Erbitux yet and he can get it but what about SRBT? What else is out there? Should he try full doses of the stuff he is on and go to every two weeks for a few months? We will go anywhere in the country if someone thinks they have something to try. We want to do this before he gets "too sick" to go.

I'm looking for advice and experiences here friends. What do you have? I know you are not docs but I know you have experiences and contacts.

Thank you!!!

Aloha,
Kathleen

tanstaafl's picture
tanstaafl
Posts: 1086
Joined: Oct 2010

In a pinch, we go to directly to the horses' mouth and interview/RFP as many surgeons and rad oncs as possible, like 6 or more each.

Each group is likely to have their own rules of thumb for (in)operability of lung nodules - number and placement, 3-5-8, hup, hup, hike. I recall one german development group citing good success for a laser tool having more than 20 lung nodules as doable.

We have an high therapeutic index antimetastasis plan. Instead of treating CA19-9 positive tumors (~3/4 of stage IV patients) to reduce VEGF-A with Avastin, she gets cimetidine and IV vitamin C. Lots less side effects all the way through surgery with good coverage perioperatively and much better wound healing. High dose cimetidine has been routinely used in operations for over 30 years.

We continuously treat her COX2 positive tumors (over 3/4 stage IV pts) with low dose aspirin and various natural COX inhibitors. The surgeons also add 200-400 mg Celebrex perioperatively.

We theoretically treat incidently for MUC based tumors with proposed natural inhibitors, just treating LEF style for COX2 and CA19-9.

We've possibly replaced harsh adjuvants like oxaliplatin or inrinotecan with the menaquinone-4 (human K2). Independent lab testing for tumor cell kill said better, and serum CEA shows the activity too.

We use low dose UFT-LV instead low dose Xeloda for various reasons. UFT is friendly enough to use through abdominal surgery (10-12 perioperative UFT and 5FU papers) although agreeable surgeons are uncommon. Not read up about Xeloda, or chemo for lungs perioperatively. Our original non-chemo metastasis protocols (LEF ++) did seem to do well enough for first surgery to avert spread from the para aortic cluster, primary, mesentery mets and lung/liver thingies.

Of course, much of this considered non-standard, experimental, global or heretical in medical nature, and we are just an anecdote.

Kathleen808's picture
Kathleen808
Posts: 2340
Joined: Jan 2009

Thanks for this info. How does one go about finding out if tumor is COX2 positive and CA 19-9 positive? Can you give me more info and where is she treated. I have no idea if any of this is controversial and I do not want to stir things up on the board if it is. However, I would ask that you send me a private message. I know you have written before but I do not have it in me to go searching.

Thanks!!!

Aloha,
Kathleen

tanstaafl's picture
tanstaafl
Posts: 1086
Joined: Oct 2010

COX2 and CA19-9 should be common antibody stains. Most people "who do" probably do these presumptively without the lab support, and you already seem to have demonstrated Avastin activity. The issue is finding a path lab to just do the specified stains without interference - perhaps a requesting doctor submiting fixed slides without explanation could get them done easiest.

She's treated at home, everything oral except IV C, with consultations from alt MD locally, and ND over the phone. Her surgeons have always signed for the 5FU prodrug, UFT.

Lovekitties's picture
Lovekitties
Posts: 3132
Joined: Jan 2010

Am so sorry to hear that Dick is having growth in those lung mets.

Is he currently being treated at the University of Hawaii Cancer Center? If so this is an NCI center, but there are others on the mainland that are deemed Comprehensive centers which may offer additional thoughts or plans.

Check out this web site for a location which works for you.

http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

I would think that you could have his records sent to any you choose for a first look and assessment before making the trip. I would not take anyones "they won't take him"...get the determination directly.

This should help you to find out when and where you need to go for best possibilities.

Wishing you and Dick the best in finding best treatment facility and getting those mets under control.

Hugs,

Marie who loves kitties

jjaj133's picture
jjaj133
Posts: 858
Joined: Mar 2011

I am so sorry to read this news. I was going to suggest the same thing as Marie. Records can be sent anywhere. You are both in my prayers.
Love and hugs,
Judy

Farm Girl
Posts: 17
Joined: Oct 2012

Kathleen,
My sistes's lung nodes have increased as well in the past few months. She has 18 total on bilateral lungs. Her oncologist started her on the new FDA approved drug Ziv-alflibencept..She is on her 3 treatment and hoping this works.

jen2012
Posts: 1492
Joined: Aug 2012

No advice, just prayers.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

This stuff is so confusing and complicated. It's good Mike is doing so many good things. I don't know how he does it because I get pretty tired during chemo so I try to rest too. Has he done Oxyiplatin (sp?). If he tried Erbitux make sure he's isn't kras mutant. I'm similar to Mike in that the tumors to lungs are just now showing up after 3 years for me. I think the onc needs to get aggresive with his plan. I pray everything works out. I'm trying Zaltrap which my onc calls super Avastin. I just started today so don't know how it will be. My lungs have the crap scared out of me because the last two scans show more and getting bigger so Zaltrap needs to really kick in. I'll keep the board posted. Jeff

maglets's picture
maglets
Posts: 2468
Joined: Jun 2006

no wisdom here......just sending love .....

mags

geotina's picture
geotina
Posts: 2094
Joined: Oct 2009

I'm so very sorry. Growth is always so scary.

There are 2 new drugs approved within the lat two months for people with advanced colon cancer. You have probably already heard of them. They are: Stivarga (regorafanib) and Zaltrap (ziv-afibercept). Do some research and maybe this new combo will help Dick. I don't know of anyone on this board that is doing these two drugs but maybe on the Colon Club or Colon Cancer Alliance.

You asked about increasing Folfori. George is not exactly on Folfori, he doesn't get any 5FU but does get the Camptosar part along with avastin. He gets it every week for 3 weeks then a week off. It is hard to do. Diarrhea is a major side effect which makes quality of life quite miserable. Also fatigue is a biggie. George never had trouble with blood counts but on this stuff he has a lot of trouble. Neuprogen shots, Procrit shot, blood transfusion, well, you get the picture. He has been doing this for over a year. It does work quite well and his CEA is the lowest it has been in 3 years. Dick leads quite an active lifestyle so quality of life does come into play.

If memory serves you have seen Dr. Lenz in the past so perhaps he could assist you and point you in the right direction.

Take care and give Dick our best - Tina

smokeyjoe
Posts: 1428
Joined: Feb 2011

Oh, Kathleen I'm so sorry to hear this....geeze, wish this crap would go away and leave us alone. Has Dick had folfox yet?? I seriously believe Tans is on to something, it's not one thing attacking the cancer, but many natural ingredients that target from several angles.....cancer seems to find a way around one chemo. target after a while. He seems to have found several natural modalities to attack, combined with chemo., it's working for his wife it seems, without the toxic side effects. Sure hope you can find doc's that can help you, keep us posted.

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