Looking for some advice...Update 10/30

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Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Looking for some advice...Update 10/30

Postby Cb75 » Tue Oct 01, 2013 8:41 am

My last scan in August showed mets in my lungs, both sides. I have been doing some research on the laser assisted lung resection initially offered in Germany by Dr. Rolle. it has pretty good ling term remission stsatisitcs if all mers, regardless of size and amount, can be removed. it is now also offered here at my hopsital in Toronto and has been for about a year. However, my thoracic surgeon here said that he doesn't recommend this surgery or any surgery at this point because my mets are small, difficult to find and a few are deep in my lungs which may result in missed spots and me being back in the same place later. I also wonder if because this is a new method for them here if they are a bit cautious. Also my hopsital does not have access to inter operational imaging of the lung at this time to assist in the surgery although they will be getting some in the future. My local surgeon also recommends some chemo first to stabelize things a bit before surgery shoukdnidecide to go the germany or to see if there is something they can do locally. Dr. Rolle in Germany has reviewd my scan and had advised that I am resectable, that the lobes can be saved and recommends the surgery. Part of me just wants the mets out, the other is worried about what is going on in my lungs and thinks chemo may be the way to go first. I'm opnot sure what to do. What would you do? Any thoughts? Of course the local care is 'free' where as the German procedure is about 18000 per lung.
Last edited by Cb75 on Wed Oct 30, 2013 6:05 pm, edited 1 time in total.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

jimc

Re: Looking for some advice...

Postby jimc » Tue Oct 01, 2013 11:35 am

Cb75, I sympathize with your situation as my wife's has some similarities. She had a few small lung nodules (3-5mm in size) at initial diagnosis (July, 2011) which were ignored to focus on her liver and distant nodes in the abdomen. The nodules didn't seem to change much during the initial 9 cycles of Folfox/Avastin (thought the tumors in the liver and lymph nodes responded quite positively). After surgeries on the liver/lymph nodes, she had 4 cycles of reduced-dose Folfiri. The lung nodules did get a little smaller then. Then no chemo for 6 months at which time PET/CT showed 3 new lung nodules for a total of 6 (all 4-6mm in diameter) as well as a single 13mm supraclavicular lymph node. She'd never had a PET scan before so it's possible the supraclavicular node had been there since initial diagnosis. Don't know. This was December, 2012. At this point we started a Xeloda/Celebrex combination which we have maintained to the present. The Xeloda is very low dose: 650mg in the am, 800 mg in the pm Monday thru Friday every week. (She started at 1000 mg twice a day but reduced after 5 months due to hand/foot). Celebrex is 200mg twice a day every day. As of last scan a few months ago, there's been slight shrinkage and no new visible disease. CEA's are stable. Upcoming CT in a few weeks.

You can learn more about the Xeloda/Celebrex combination using the search engine on Maia's posts: xeloda, celebrex, Lin. Dr. Lin, a medical oncologist at the Fred Hutchinson Center in Seattle, is a strong proponent of this combination.

The reason I bring this regimen up is that if you do decide to go straight to the laser lung surgery you might immediately follow it with a long-term maintenance xeloda/celebrex regimen. After the surgery, you'd hopefully be in NED state which is exactly the situation that Dr. Lin thinks the combination works best in -- to prevent recurrence or delay recurrence.

The xeloda/celebrex regimen has been extremely livable for my wife. Good energy and able to work full-time. Good quality of life. I've been aware of Dr. Rolle for a while and we are considering the possibility. If upcoming scans continue to show stability, I may forward to Dr. Rolle to check for suitability with regard to the lung nodules. (Additionally, we'd have to have the supraclavicular node removed first to be eligible for Dr. Rolle's service). If all this were indeed to happen, I imagine we'd then continue the xeloda/celebrex combo for an undetermined period afterwards. Alternatively, if everything's unchanged at upcoming scan, we might just continue as is and see how long we can ride it. Don't know.

If you go with laser surgery, I'd go with experience. Good luck with your decisions!

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Looking for some advice...

Postby Maia » Tue Oct 01, 2013 12:45 pm

jimc wrote:

The reason I bring this regimen up is that if you do decide to go straight to the laser lung surgery you might immediately follow it with a long-term maintenance xeloda/celebrex regimen. After the surgery, you'd hopefully be in NED state which is exactly the situation that Dr. Lin thinks the combination works best in -- to prevent recurrence or delay recurrence.


Just wanted to say that I agree with this. IF you go the laser surgery route (to get you probably NED), you should seek some maintenance regimen after it. And from all what I've read out there, this XCEL regimen would be very tolerable. It's experimental, yes, and it doesn't work for all Dr Lin's patients (otherwise, he would be awarded a prize right now, right). But for anyone who wants to do something 'more' to prevent recurrence/ slow metastasis, it's something worth the try. It is just my opinion, and I have not medical background, but anyone who get NED or almost NED (thanks to regular surgery -with 'curative intent'-, chemo, VATS, RFA, Cyberknife, etc.), would have a better fighting chance by trying this protocol.

jimc, so glad to hear this is working for your wife! I was missing you : )

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Looking for some advice...

Postby Cb75 » Tue Oct 01, 2013 3:19 pm

Thank you so much for your input. I am meeting with my oncologist tomorrow and will get his input and I will ask him about this protocol. I am not sure my oncologist will go outside of the scope of the standard of care. It is a bit frustrating. I may need to find a more aggressive and innovative oncologist going forward.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Looking for some advice...

Postby Cb75 » Wed Oct 02, 2013 9:00 pm

My onc is agreeable to the surgery, but he is worried that there are more spots in my lungs that can't be seen. He recommends a scan in two weeks to see how things look. If only the mets we currently know about appear then I'll go to surgery. If there are many more I will consider chemo first to try and control things. So, now I wait....
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

kiwiinoz
Posts: 1156
Joined: Thu Jan 03, 2013 11:44 pm

Re: Looking for some advice...

Postby kiwiinoz » Thu Oct 03, 2013 3:00 am

Hiya Carm

Waiting is the hardest part isn't it?

Wait and see, and in the mean time your life is on hold

I hope you don't sprout any more mets, and that those visbile are all you can deal with.

In the meantime, keep on keeping on.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Looking for some advice...

Postby very worried husband » Thu Oct 03, 2013 6:52 am

Hi Carm,
so tough to be in this situation. :(
Did Dr Rolle tell you anything about post op protocol?
Are they going to do any chemo sensitivity testing, Circulating tumor cells etc after/ before surgery?
I guess Dr Rolle would suggest some form of chemo after the surgery. since you will be coming back from Germany, what is the follow up procedure?
while surgery is good, i would be more interested in their comprehensive approach as to how they deal with the situation.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Looking for some advice...

Postby Cb75 » Thu Oct 03, 2013 7:36 am

I am not sure what Dr. Rolle will recommend in terms of follow up. I know they do a pathology on what is taken out. My onv here said that It is a grey area about follow up chemo and that we can discuss it further later. He does not believe low dose maintenance chemo does anything. Any follow up care would be done here. If I do go to Germany I will look ino getting a dc vaccine done if I can get to NED and perhaps some hyperthermia as well.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Looking for some advice...

Postby very worried husband » Thu Oct 03, 2013 9:16 am

for genetic testing they charge around 2500 Euro in Germany. I would check first with the clinic as to what type of testing is done on the tumor.
in my personal opinion ( based on reading stories on the forums and internet), i heard that DC is effective if tumor cells are added to it ( not sure what that DCV is called).
Low dose chemo for 6-12 months based on the genetic testing of tumor and number of circulating tumor cells would not be a bad idea i think.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

rp1954
Posts: 1540
Joined: Mon Jun 13, 2011 1:13 am

Re: Looking for some advice...

Postby rp1954 » Sat Oct 05, 2013 6:45 am

...[oncologist] does not believe low dose maintenance chemo does anything.

Low dose chemo does something when you have enough chemistries to drive it, just like the multiple chemistries in Folfox/Folfiri over straight 5FU. Jimc has mentioned other low toxicity adjuncts, but the Celebrex could be a significant step in that direction.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

jimc

Re: Looking for some advice...

Postby jimc » Sat Oct 05, 2013 8:24 am

That's right, rp. I should have mentioned that my wife started an aggressive combination of complementary adjuncts within a few days of diagnosis and has continued them to the present with additions and deletions based on best-effort research/guess. I like the idea of hindering/enhancing as many relevent molecular pathways as possible as well as stimulating the immune system. And keeping toxicity as low as possible. I've appreciated your excellent posts on these subjects.

Some of the supplements she's currently on are curcumin, bromelain, quercetin, grape seed extract, green tea extract, milk thistle, resveratrol, reishi, psk, astragalus, r-lipoic acid, CoQ10, Vitamin D, and aspirin. Also, offlabel metformin. She has an ultralow CA19-9 (<1) so we don't use cimetidine -- otherwise we would!

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Looking for some advice...

Postby Cb75 » Sat Oct 05, 2013 10:29 am

I will look into the low dose chemo. I also do a lot of complementary treatments including all of those mentioned by jimc with a few more. At this point I am not ure if it has made any difference, but I continue with them.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Looking for some advice...

Postby Cb75 » Wed Oct 30, 2013 6:03 pm

I got the results of my follow up scan today my lung nodes, they remain the same in number but are a bit larger. All are still under one centimeter. I've forwarded this most recent scan to dr. Rolle. If he can do the surgery I am going to go forward with the laser resection for my lung mets.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Looking for some advice...Update 10/30

Postby Maia » Wed Oct 30, 2013 6:11 pm

Yahoooo! : )

DogMom
Posts: 63
Joined: Wed Jul 17, 2013 5:11 pm
Location: Irvine, CA

Re: Looking for some advice...Update 10/30

Postby DogMom » Wed Oct 30, 2013 7:06 pm

Cb75...Thanks for the update. Keep us posted. I am potentially interested in this treatment as I have too many lung mets to get to NED with treatment available in the US.

Here"s hoping you can do this and have fabulous results.

Bonnie
DX 2/08 St 2 Rectal C, 47 y/o
Transanal excision/radiation/Xeloda
mult Lung Mets found 7/09
Xelox + Avastin 5 TX
neuropathy: Xeloda + Avastin 12/09
12/10 40 day Avastin headache, Xeloda
6/11 SBRT lungs
1/13 Regorafenib
11/13 Xeliri-fail
3/14 Gemzar


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