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

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Cb75
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Location: Ontario, Canada

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

Postby Cb75 » Tue Mar 18, 2014 7:23 am

Thank you for your comments. I meet with my oncologist tomorrow to discuss the next step.

Cr guy - I will ask about the other potential treatments. I hadn't really thought there may be some other options. I have been looking into NGPDT which they do in China. I have found some good and some bad anacdotial evidence about this procedure. I was considering doing this first, but couldn't handle more travel as I would need to go back and forth between Canada and china and of course I want the opinion of my doctors here.

Dr. Rolle removed the mets he could. To be honest, I haven't read his full report. I was under quite a but if duress while in Germany. I think he took out four of six and a sample of the plural met to have a pathology report done. My understanding is that my cancer has turned aggressive. This is what scares me. Either it was missed on the scan or it has grown very quickly in only a month.

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...

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elise
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Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

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

Postby elise » Tue Mar 18, 2014 7:29 am

CB, I feel like I can read your emotions in your post. You're tough as nails and it's clear to me that you know how to keep your chin up.

((((HUGS)))) from Ottawa XOX

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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singingholly
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Location: Northern Italy

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

Postby singingholly » Tue Mar 18, 2014 9:10 am

We all have to carry on fighting... Your disease ammount is little and new options are found everyday... So here we are. So hard, but not hopeless. You haven't had folfiri+avastin yet, some reach complete response to that treatment. We're all together in this war. Please let us know what your onc suggests.
I'll think of you.
Holly
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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CRguy
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Re: Update....not so good....

Postby CRguy » Tue Mar 18, 2014 11:24 am

Cb75 wrote:.... looking into NGPDT which they do in China. I have found some good and some bad anacdotial evidence about this procedure. I was considering doing this first, but couldn't handle more travel...

I suspect you may have seen this first link, NSCLC from ASCO 2013 and this ACS page which gives a pretty good overview of the PDT / NGPDT therapy ( for others reading this who may not know much about it. )

Research Gate comments posted under Craig Uthe half way down the page, give some more feedback, specifically on the Chinese NGPDT situation.

When I was searching for my Dad's mesothelioma information, I thought I recall an intrathoracic use of PDT ( in Canada ??? ) as opposed to transcutaneous / interstitial laser activations ???? I will try to dig that out, but it may have been experimental. Yes that travel would be significant !
Maia any info from your side ???
Either it was missed on the scan or it has grown very quickly in only a month.

It may have been present ( likely ) and just too small to be imaged with "routine" follow up ....... so I would still push hard for a more precise and sensitive imaging if you can get it.

Cheers and continued best wishes
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

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

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

Postby Cb75 » Tue Mar 18, 2014 12:01 pm

CRguy - thanks for the information. I had come across that first study in my research. It looks promising but it's hard to find people who have had success. I am still thinkingb about going for the treatment. I am going to ask my oncologist here if he has any information or thoughts on it. I have sent my preliminary report from Germany to china. They "approved" me and recommend three eight day session, 14 days apart at about 20,000 Cad per shot. I have the finances but am wary. I anticipate a CT scan in the next week or so, which I may forward to China to get a better idea of whether they think they can help. They need this done before they treat you anyways. I'm a bit worried about the spread to the plura in that of PDt is successful it could cause permanent damage to my lung. It seems one of the side effects of NGPDT is how the body deals with the amount of tumor death which can happen quite fast with PDT.

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...

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

Postby Maia » Wed Mar 19, 2014 8:04 am

CRguy wrote:When I was searching for my Dad's mesothelioma information, I thought I recall an intrathoracic use of PDT ( in Canada ??? ) as opposed to transcutaneous / interstitial laser activations ???? I will try to dig that out, but it may have been experimental. Yes that travel would be significant !
Maia any info from your side ???


Transcutaneous, for the treatment of the pleura only (like in mesothelioma), may be experimental at some hospitals/ centers in Canada (but they will use it only for that kind of cancer, mesothelioma; not for mets from other cancer). I think that the same status (experimental) goes for peri-operative/ intra-thoracic (the use of photodynamic while doing open surgery; but they won't do surgery on Carm. They do that at Roswell Park, near enough TO; so maybe for a next surgery). In Canada, maybe (but I doubt it) they would use PDT in some hospital in the case of some endobronchial seated tumour, if it's obstructing the air passage (in Ontario, that would be the Juravinsky, in Hamilton. Those are all the cases in which it could be used, in Canada (for what I know at the present). Carm, If your ask to your onc at the PMH, they will probably say you don't qualify and that treatment in China is unproven (and both statements are true).

Transcutaneous/full body is experimental *and* commercial --that's what is offered in China, the UK, etc.; you can get that if you pay for it, and it's not in the set of a clinical trial. It *may* work for tumours alocated near the surface (like in the pleura, skin, etc.; maybe 1 cm deep) and as an immunological booster (since a great amount of circulating blood would get treated). I doubt it could work, with the actual equipment, in tumors seated deeper in the body (liver, mediastinum, pancreas, colon, etc.), but I could be wrong. It would work in the pleura, yes.

Said that about Canada, on the other hand, they have there some of the best world specialists in photodynamic therapy, IMHO: Dr Brain Wilson and Dr Lothar Lilge (they work/worked together). I would boldly go and contact them, explain the situation and ask for some 'guidance'. You may be surprised by how many times researchers are open to talk, to reply a short, well-articulated inquiry. They may share some valuable info. They, instead of the oncologists, certainly would know if those full-body PTD beds (in China and other places) have some potential, or if there is a clinical trial coming soon, etc.

I'm following Dr Lilge (University Health Network, PMH, Toronto llilge@uhnres.utoronto.ca)'s work. He works at the UHN with equipment and photosensitizer provided by a Canadian company, Theralase, that has to be the PD technology that is closest to human clinical trials. In 2012, they had this results on mice (PDT was transcutaneously / transdermally administered):

Dr. Lothar Lilge stated that, "These preclinical results demonstrate that the Theralase Photo Dynamic Compounds appear to be highly effective (100% cancer cell kill) when used to destroy various cancer cell lines in-vitro; specifically, brain glioma (U-87 and F-98) and in-vivo; specifically, colon cancer (CT-26WT), in the treatment of subcutaneous cancer tumours in Balb/c mice.
(...) Our research has demonstrated a kill rate of effectively 100% in specific human brain and colon cancer cells lines. With the high mouse survival rate, which is approximately equivalent to 11 years “cancer free” in humans, being observed in this study, these results lay the groundwork for further preclinical work for these specific cancers. If the preclinical work is proven successful, this would lead to human clinical trials as early as 2013.


Later, in 2013, they found a very important mechanism involved. I have hopes they will start some human trial this year, and it should be for colon cancer, since it has worked well on it, so far.

PTD is really a wonderful technology; these are the ongoing trials. It was one of the first 'no chemo' options I explored a couple of years ago, for my friend. I'll try and make a separate post about it, eventually.

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

Postby CRguy » Wed Mar 19, 2014 12:10 pm

Great info Maia, thanks for moving the discussion forward for Cb75 and the rest of us.
Cheers all
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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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

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

Postby singingholly » Wed Mar 19, 2014 2:19 pm

Maia you have the gift of hope... No: TRUST more than hope. God bless you.
H.
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

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

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

Postby Cb75 » Wed Mar 19, 2014 5:45 pm

I met with my oncologist today. He advised that plural mets is not easily seen on a CT scan. He believes it has been there for a while. He does not think it grew in the last month. I'm scheduled for another CT to be used as a baseline. I will have it on Friday. He mentioned the possibility of an MRI. He did say that a PET scan won't show the plura mets. So, since CEA is not an indicator I will be going based on whatever the CT shows. If the other mets change, it will indicate if the chemo is working.

Chemo, folfiri and avastin, is scheduled to commence on April 1. This gives me a but of time to continue healing and to mentally prepare for what is coming. I will do this with localized hypothermia treatments as well as various supplements as prescribed by my Natriopathic oncologist.

I did as my oncologist about the NGPDT. Surprisingly he was not totally again this idea. He asked me to forward him some information on this for him to look at. We can then discuss it. He was more concermned about seeking medical treatment in china. His fear is the medical standards there. He is Chinese, and said that he doesn't really trust Chinas system.

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...

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CRguy
Posts: 10246
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Wed Mar 19, 2014 6:02 pm

Good update my friend. The MRI is an excellent idea !!!!!! and moving ahead with a plan is ALWAYS a good idea ..... and I think the Onc is right, that the imaging just did not pick it up before as opposed to aggressive fast growth....... I have BTDT myself Carm and it took other imaging to get me diagnosed for the recurrence.

Just a quick ?????? you said hypothermia ???? I know Naturopaths are using total body and localized hyperthermia treatments.
If it really is HYPO, I want to know about it because cryosurgeries are well recognized for some things and there are techniques for cryo-probes to be used intra-operatively ???? ( Have done it myself for vet patients. )

Glad your doc is at least talking about the NGPDT / PDT stuff offshore. I agree totally with
He is Chinese, and said that he doesn't really trust Chinas system.
My Onc is as well and we have had some very frank discussions about these kinds of things.
He wanted me doing fully proven western stuff at the local Cancer Agency..... period ! :shock:

Gather your experts around you, take some time to work out where to go from here and MOVE ahead on the Journey !

Cheers and continuing best wishes
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

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

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

Postby KWT » Wed Mar 19, 2014 6:09 pm

I'm glad you have plan. Although it sucks to be back in the chemo chair. But what are you gonna do? That's kinda of the fly in the ointment so to speak that is the Chinese dr. Who doesn't trust Chinese medicine. May be good advice. I'm hoping the chemo works some magic. Are you kras like myself? Just curious.

Kenny

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

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

Postby Cb75 » Wed Mar 19, 2014 6:52 pm

Kenny - yes I am a KRAS mutant. This makes things more complicated as there isn't as much available....my oncologist did say he has some patients who have been on folfiri and avastin for five or six years. This isn't exactly the lining in my dark grey cloud that I was looking for, but I guess he was trying to give me some kind of hope. He also said there are some new drugs coming down the pipeline. I asked about clinical trials, specifically the PD1 trial which is starting soon. He said I'm 'not there' at this point and wouldn't qualify.
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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lohidoc
Posts: 454
Joined: Tue Aug 09, 2011 6:37 pm

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

Postby lohidoc » Wed Mar 19, 2014 7:07 pm

"Localized hypothermia treatments" - I'm assuming you mean hyperthermia? If you have a way of providing hyperthermia to your lungs I'd love to know more.
"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

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

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

Postby Cb75 » Wed Mar 19, 2014 7:46 pm

lohidoc wrote:"Localized hypothermia treatments" - I'm assuming you mean hyperthermia? If you have a way of providing hyperthermia to your lungs I'd love to know more.


Yes I meant hyperthermia. There is a clinic just outside of Toronto that has an oncotherm machine. See link re machine.

http://www.oncotherm.org/web/

I had a consult with them a while back. It is done when the chemo is in your system for maximum effectiveness. They recommended treatment on day one and day three of the chemo. I'm hoping it will help kill off these buggers and potentially create an immune resoponse 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...

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

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

Postby KWT » Wed Mar 19, 2014 8:32 pm

Carmen,
They said the same thing at Stanford if it came down to it there are clinical trials. Also my current onc said too that there's some stuff coming for us mutants I'm not worried about it. And I hope your not either.


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