Looking for some advice...Update 10/30

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

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

Postby kiwiinoz » Wed Oct 30, 2013 7:15 pm

Carm
Stable is good news, and I hope you are able to proceed with the laser resection.
Look forward to the results with baited breath
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

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

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

Postby dianne052506 » Wed Oct 30, 2013 7:20 pm

I'm going to talk to my onc tomorrow about Dr. Rolle and L-APM. I was also getting excited about doing Xeloda/Celebrex if my onc approved, but just read that Celebrex is a sulfonamide. I have a documented allergy to sulfa drugs. Guess I get to scratch that idea.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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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 7:49 pm

Dianne, I'm not saying you should take celecoxib but you should re-check the issue sulfa/ celecoxib. Just to start:

http://www.ncbi.nlm.nih.gov/pubmed/11330653

http://www.ncbi.nlm.nih.gov/pubmed/12580647

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

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

Postby dianne052506 » Wed Oct 30, 2013 10:07 pm

Maia,
Thanks for the info. I'll check with my doctor, but I had a reaction this spring to hydrochlorothiazide which seems to be more in the group with Celebrex than with the antimicrobials mentioned.
When I was much younger and my mom was still filling out medical information for me, I remember that she would always list an allergy to sulfa meds, so there must have been something much earlier that I don't remember. I had been taking HCTZ for 10+ years, when I finally had a photosensitive skin reaction and have hives on the back of my neck, the top of my head, and my hands, just what was exposed to sun when I started driving with the sunroof open this spring. I remember when I first started taking HCTZ that the doctor said that it is usually tolerated by people with sulfa allergies. Maybe that's why it took such a long time for me to have a reaction -- that and a clinical trial that gives me a hyped-up immune system. (Not looking forward to this year's flu shot!)
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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

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

Postby very worried husband » Thu Oct 31, 2013 9:40 am

Best of luck with your plans. you will be in our prayers. Go, Get these nasty stuff out. :mrgreen:
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 :)

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

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

Postby Maia » Tue Dec 03, 2013 3:40 pm

Carm... you posted something in other thread but be sure we're sitting on our hands here, wanting to know how it went. We need the good news :wink:

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

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

Postby kiwiinoz » Tue Dec 03, 2013 6:22 pm

Hi Carm

I was just thinking the same as Maia, how did it go?

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

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

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

Postby Cb75 » Wed Dec 04, 2013 1:20 am

Hi :)

All is well. I had the surgery last Tuesday.
Overall this has been my "easiest" surgery to date. They found ten suspicious spots in my left lung. Eight were visible on the scan. I was told that it is very common to find more when the lung is actually seen. The doctors are pleased with my progress. What I don't understand is that my local doctors only saw six over both lungs. However now that I have seen the scan it was very evident that there were more. I don't understand the discrepancy. I will come back in jan/feb for the second surgery on the right lung where there appear to be "only" three.

I am impressed with the hospital staff and if course dr. Rolle. Since being here there have been three other North Americans here for this procedure.

When I return I hope to have my live samples sent to make a vaccine. Highly experiential bit I think it is worth a try. There have been some very positive preliminary reports with respect to the vaccine especially with a low tumor burden.

For anyone with inoperable lung mets or many lung mets that may be operable I recommend this treatment where minimal amounts of lung tissue is damaged. Dr. Rolle expects that I will not lose ANY lung function after removing TEN spots. It truly is fantastic. I know the risks of recurrence, but am so greatful for the chance at cure/long remission and to be Ned again. Mentally this is huge. I owe Maia so much and thank her again. When we work as a community of support it can make such a huge impact on the individual.

Cb
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...Update 10/30

Postby kiwiinoz » Wed Dec 04, 2013 1:34 am

Cb75 wrote:Hi :)

When I return I hope to have my live samples sent to make a vaccine. Highly experiential bit I think it is worth a try. There have been some very positive preliminary reports with respect to the vaccine especially with a low tumor burden.

For anyone with inoperable lung mets or many lung mets that may be operable I recommend this treatment where minimal amounts of lung tissue is damaged. Dr. Rolle expects that I will not lose ANY lung function after removing TEN spots. It truly is fantastic. I know the risks of recurrence, but am so greatful for the chance at cure/long remission and to be Ned again. Mentally this is huge. I owe Maia so much and thank her again. When we work as a community of support it can make such a huge impact on the individual.

Cb


Carm

First of all, great that you got it done. I am so with you on the chance of being around a bit longer and I agree with you totally.

Questions if I may?

No loss of lung function? That is awfully impressive. How do you feel now?
What was the "surgery" like and how long were you under?
What was the recovery time?
Can you get more done again if you have a recurrance?
What was the vaccine thing you were talking about? Is that something where they make your tumor into an immunotherapy shot which they inject you with? Love to hear more about it
Had any buffalo meat (ran out of questions but wanted to ask some more so threw that in for free)
Happy? (I would be in your shoes)

OK the last 2 were crap, but I am really happy for you that you could get this procedure done and it is ground breaking. Obviously I am thinking of options for the future (hoping I don't need them) but thanks to you and Maia this is a ground breaking move.

Again, enjoy it and keep us in the loop

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

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 Dec 04, 2013 2:54 am

Cb75...

Amazing news!! Congrats!! Do you expect to get some time w/o chemo after second surgery?
How long do you have to stay in the hospital?
How long until you can fly home?
What is the scar like? ( sorry, this is superficial, but I'm curious).

Congrats on the courage to do this!!

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

jimc

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

Postby jimc » Wed Dec 04, 2013 7:39 am

Carmen, so glad to hear the laser surgery went well. Dr. Rolle definitely sets the standard with regard to tissue preservation. I wish his methods would be disseminated more quickly around the world.

My wife had a bilateral open procedure (clamshell sternotomy) the day before yours. Like you, she had 6 small nodules identified on scans preoperatively. Thankfully, the thoracic surgeon recommended an open procedure so he (like Dr. Rolle) could palpate all lung tissue looking for additional lesions. Result: 15 nodules removed by 13 wedge resections! We feel incredibly fortunate.

These accounts really bring home the potential limitations of scans with regard to small lung nodules. And the potential benefits of Dr. Rolle's technique or open conventional techniques where all tissue can be examined.

This has been the easiest recovery from major surgery (compared to liver surgeries) for my wife as well. She is going to lose some lung function but she did walk 4 kilometers outside on gravel roads 5 days after the surgery!

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

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

Postby Maia » Wed Dec 04, 2013 3:14 pm

I'm so thrilled for you, Carm. Actual surgery but without 'open chest', for ten spots in one lung, almost without tissue loss.. it's amazing and something that sounds from Star Trek. Soo happy, words fail me. : )
And yes, I agree with you on that "when we work as a community of support it can make such a huge impact on the individual". When I was young someone told me that we may get sick in isolation but we heal in community (well, it was in Spanish, but you may get the idea : ). I believe that.

Jim, I'm absolutely ecstatic for your wife! We all know that finding a surgeon willing to remove 15 nodules from both lungs is... almost impossible. Your wife is so blessed to have you as her advocate.
Both your happy news will keep me happy during a long time, so thank you for sharing : )

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

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

Postby dianne052506 » Wed Dec 04, 2013 5:27 pm

Carm,
I am so happy for you! You did it! You win the award for bravery this year!
I've got so many questions, but will try to space them out. Bonnie did mention chemo, and if you've already mentioned your status with regards to it I apologize. I was wondering about the requirements for time off chemo before, as well as what might be required in between the two surgeries and after.
I also wondered if you had the support of your local doctor in pursuing this.
I am so very, very thrilled for you.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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

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

Postby Cb75 » Thu Dec 05, 2013 3:12 am

Jim - I can't believe you found a surgeon in the US that agreed to your wife's surgery. That is fantastic. I would have liked to have had both lungs done at the same time. However, they don't do it here. Something about needing. To be in a ventilator. I really tried to convince my local surgeons to so something for me. They even have he laser that dr. Rolle uses, but because of lack of experience and concern over the small size of my spots they refused. It makes me so angry where in canad we pay so much personal tax for our health care.

Dianne - whether I will do more chemo has not been determined. My oncologist said it is a grey area where the studies don't show much benefit for more chemo if all visible cancer is removed. I have my concerns about chemo and the immune system. I would rather not, but will look I to this further later. I wouldn't start until a month after the second surgeries. I am also considering some other alternatives like having a cd vaccine made from the tumor tissue of my next surgery here in Germany as well as PDt treatment in the uk or china and Cannibis oil (rick Simpson method) and dca. I may "save" chemo for the unfortunate possibility of recurrence. I am kras mutant so there are not as many options.
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...


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