Update....not so good....

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

Update....not so good....

Postby Cb75 » Mon Mar 17, 2014 9:26 am

I recently had lung surgery on my left lung in Germany to remove what I had hoped were the last signs of disease from my body. I had surgery on my right lung in November. Based on a CT scan taken at the end of January all looked well and I was given the go ahead by my doctors here in Canada and by the doctors in Germany. However, when the doctors in Germany opened me up they found further spread to my lung plura and to some local lymph nodes. This additional spread DID NOT show on the scan in January. The doctors were shocked, as was I. It was totally unexpected and the doctors in Germany had never seen something spread so quickly. I don't know if the spread was there in January, or if it had spread within the last month after the scan. As you can imagine I have had a nightmare of a few weeks while recovering from the surgery and being away from home. I just got back from Germany this past Saturday. I forwarded the report from Germany to my Oncologist in Toronto while I was in Germany. He seemed to suggest that I'm looking at Folfiri and Avastin. Which, is what I expected. It took me a while to post this update as I was dealing with this turn of events and I didn't tell some members of my family until I got home. This disease is incredibly sneaky. I was feeling very good going into the surgery and didn't have any signs of such progression. All of my blood work was good, everything looked good. My CEA has always been normal. I now anticipate chemo for life, but hold out hope for something better....as I think all of us do.

Any thoughts, encouragement or suggestions is greatly appreciated. No one can really understand this except for those who are also dealing with this awful disease.

I will say that Dr. Rolle in Germany has done so many wonderful things for people who are not given any hope. I do not regret my decision to seek a surgical option. My tumour burden has been reduced, which will hopefully help in the long run. Dr. Rolle has provided long term remission to so many who didn't even have a shot according to their doctors. It is amazing and I do recommend his surgery for those who qualify. He is a very caring and compassionate doctor, unlike many I have come across. He was visibly upset about my circumstance, but did offer me hope and kind words to keep me strong.

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...

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Update....not so good....

Postby ams5796 » Mon Mar 17, 2014 9:41 am

I'm so sorry to read this news. You're right this is a sneaky disease. Unfortunately, we never know where it will pop up next. The most frustrating part is that all your testing came back fine. I still think having surgery and reducing your tumor load was a good move. I wish you the best going forward.




Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Update....not so good....

Postby KWT » Mon Mar 17, 2014 10:10 am

Carmen,
It's good to hear you're home with your family, I hope your doc. Can come up with something that works for you. I'm thinking more and more about the cannabis oil.
Kenny
Last edited by KWT on Sun May 18, 2014 11:07 am, edited 1 time in total.

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Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Update....not so good....

Postby Rob in PA » Mon Mar 17, 2014 10:32 am

CB, I wanted to let you know i'll be praying for you. I'm glad you are now home, sounds like Dr. Rolle is a wonderful doc and i have no doubt that you did the right thing. You gotta try, and you did. Now go kick it some more with chemo. Please keep us posted on your protocol.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Update....not so good....

Postby Guinevere » Mon Mar 17, 2014 11:11 am

I'm so sorry that the cancer had spread more than was thought! You're in my prayers. Folfiri is one the easiest chemos I've been on. I had headaches and nose bleeds on Avastin so I don't do that. I've had two tumors killed and shrinkage on the other two tumors while on Folfiri so there's huge hope for you that it will do for you what it's done for me.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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

Re: Update....not so good....

Postby very worried husband » Mon Mar 17, 2014 11:20 am

I am so so sorry about this news Cb75. you will be in my prayers.
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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CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update....not so good....

Postby CRguy » Mon Mar 17, 2014 12:40 pm

Cb75 wrote:Any thoughts, encouragement or suggestions is greatly appreciated. No one can really understand this except for those who are also dealing with this awful disease.

Sending POSI +++++ Vibes for moving ahead with a plan Carm, and swinging chickens for you !

If you are at PMH in TO, they do have some top lung specialists and with pleural / node involvement they might also look at some ideas which would also be used for a mesothelioma patient ( photodynamic therapy, other "nukem" methods IMRT, SBRT, microwave / laser ablations ) to complement the open surgeries you have had. Nothing wrong with getting some chemo going as well. Maybe check with lohidoc and Maia as they may be more up to speed with what is current in the Ontario scene.

Another point you might want to follow up on with your docs here and in Germany : if they got caught by surprise with the imaging missing active disease .... what would be their new recommendations for more current imaging now to keep track of things and for follow up ?????
MRI, enhanced CT, PET, PET added to enhanced CT or PET/MRI ????
You might want to push them on this point so things do not get missed again moving forward. They know something is there and now they need to find a way to assess it in situ without you having to have more surgeries.

Sincere best wishes for you moving forward
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: Update....not so good....

Postby Maia » Mon Mar 17, 2014 1:09 pm

Carm, you know I think is WONDERFUL that you have now less tumour burden (and thanks to surgery, nothing less). Reality is what it is, and it's better that you've found out what was going on (and that Dr Rolle took out a lot of it... that's not so clear in your post, I think). Knowledge is power. Maybe with a little chemo, or other strategy, but I'm positive you'll get to NED and you'll find your own strategy to keep in that status.
((((hugs)))

kiwiinoz
Posts: 1151
Joined: Thu Jan 03, 2013 11:44 pm

Re: Update....not so good....

Postby kiwiinoz » Mon Mar 17, 2014 5:49 pm

Carm
After all your hard work in getting the info, going to Dr Rolle in Germany, having one lung done and having so much hope you must feel pretty dashed at the moment.
I want to give you some positive words but do not have any to give, so I give you my best wishes, my thoughts and hope you can find the inner strength to pick up the pieces and pull through
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: Update....not so good....

Postby dianne052506 » Mon Mar 17, 2014 6:45 pm

Carmen,
I am so sorry to hear your news. I know that you were full of hope about Dr. Rolle getting rid of all the disease, because we were all full of hope right along with you.
I am still so proud to know someone willing to step out of the box and travel for such a surgery. I have learned that I am so miserable away from home that I'm not sure I could ever be that brave.
I hope your doctors find a way to deal with this discovery and find a plan that grants you lots of time -- blessed, pain-free time.
Best wishes,
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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lohidoc
Posts: 454
Joined: Tue Aug 09, 2011 6:37 pm

Re: Update....not so good....

Postby lohidoc » Mon Mar 17, 2014 11:50 pm

A few steps forward, a few steps back. One door closes, another door opens. Stay cool.
"Half of what I know is wrong. I don't know which half."

Age 56
Dx 19/7/11
R. hemicolectomy 25/7/11
IIIc, 7 / 23 nodes,
no mets
Folfox 21/8/11
CT Scan 6/3/12 NED
CT Scan 21/6/12 30+ lung mets, 2 retroperitoneal tumours
marcdu4.wordpress.com

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Update....not so good....

Postby vilca11 » Tue Mar 18, 2014 1:40 am

Carm, so very sorry to hear this update. Surely, not what everyone here expected to be "reported". Well, you've just went thru hell - physically, emotionally, mentally.... I can't even imagine how you woke up to learn the news and then to struggle with recovery away from home, on top of that. Now you are home, try to relux for a few days - just force yourself not to think about this whole ordeal - and then regroup. I am positive that this can be nicely polished up with Folfiri after the surgical reduction of the tumor burden. And the immunotherapy solution for colon cancer is coming within our time frame, we just have to hang in until then - no other choice but to hang in - give that task to every cell of your body.
Big hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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Sophy
Posts: 251
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Update....not so good....

Postby Sophy » Tue Mar 18, 2014 2:12 am

So sorry to hear this. You have already done so much with all the research and effort you have put into your treatment - and helping others by sharing your experiences.

I will be thinking of you and hoping that this setback won't take you off the path to a full cure that you have so determinedly been following.

Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 2020 CT shows still NED
Continuing ADAPT

Ratepo
Posts: 71
Joined: Thu Oct 10, 2013 1:56 am

Re: Update....not so good....

Postby Ratepo » Tue Mar 18, 2014 2:55 am

I know everyone is unique, but my father had something a bit similar. One met seen on liver ct-scan July 2013, during operation 6 (small) were found. Considered very aggressive, only chemo possible, hopefully 1-2 years. It's only 9 months since then but he responded very well on chemo, had a operation (all removed tissue was 100% dead) and is currently NED. It will come back, because some tiny mets were not discovered, but this period is wonderful and unexpected.

However the news we had 9 months ago was, after the first diagnosis, the most horrible we had. We were devastated and I just can't think back about that phone call from the surgeon. But you continue breathing, day by day. Here we are still alive and doing relatively well. It's not carpe diem here, but we say 'you should't die before you're dead' (in another language however, so the true meaning is not reflected I guess).

Wishing you all the best!
Father dx 10/12 rectal 4a
11/12 3 liver mets resected
01/13 colostomy
07/13 scan: 1 liver met, op. failed: multiple discovered, start xelox
12/13 mets shrink (kras mut.)
01/14 liver op new hospital: 2 mets removed others disappeared
05/14 & 09/14 NED
01/15 CEA rise to 5
05/15 local reccurence - rad + Xeloda
10/15 op. failed unremovable mets lower pelvis

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Update....not so good....

Postby singingholly » Tue Mar 18, 2014 7:13 am

I'so sorry fot these uexpected bad news, my story is so similar... I really do partecipate your feelings.
Did dr. Rolle remove pleura met and the nodes he found anyway?
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno


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