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qcsuzie
Posts: 2
Joined: Dec 2012

Help,

 

First time posting but everything is getting overwhelming.

 

My husband was diagnosed 30 months ago with Stage IV Colon Cancer with mets to the lymph nodes, liver and bone. After seeking several second opinions all come back the same - He was not a candidate for surgery.  He underwent 14 months of folfox treatment.  He had to stop due to allergic reaction.  At that point the canncer was no longer detected in the bone and lymphnodes, The primary tumor site although still present did not "glow on the PET scan and the liver was down to two active sections. Explored the surgery option again, but due to the location of the lesions, it was not possible.  It was decided to have some quality of life and he just took 5-FU for approximately six months.  On the repeat CT Scan there was some enlargement of lymph nodes and the primary tumor site.  It was decided to do a PET Scan and the primary tumor was active again along with lymph nodes and and enlargement of activity in the liver.  He did four cycles of folfiri.  The side effects were awful.  The CT scan was repeated.  There was continued growth in the primary tumor as well as enlargement in the liver.  Folfiri was not working.  Sought out additional opinions and decide to go to a special clinic for desentization of oxalyplatin.  This worked for 6 cycles, improvement was noted on the CT scan.  Primary tumor reduced, reduction in liver leasions and the lymph nodes were not remarkable.  Then on the 7th, 8th and finally 9th rounds he suffered a series of setbacks.  Rigors and fever.  His last cycle his heart went haywire and his platelets plummeted.  He had an hemolytic reaction to the oxalyplatin.  Thus he can never receive the oxalyplatin again.  Meanwhile since his last treatment he had three weeks of fever of unknown origin rises to in excess of 102 F every night.  He has had repeated tests and blood work ups. Nothing can be found so now they are saying it is "Tumor Fever"

So we are left with very few options.  He could go to a medication that was approved last fall.  But the oncologist was open and honest in saying the side effects he is seeing are considerable and the success rate was small.  We could try for clinical trials.  A phose 1 and and phase 2 are open and he would qualify.  So now we need to make the decision of which direction to go.  The approved treatment that the experience of the oncologist says it is not a beneficial as they had first hoped.  A phade one clinical trial, a phase 2 clinical trial or just opt for no more treatment.  We go tomorrow to learn more about hte clinical trials.

Everything is just getting overwhelming.  Any advice would be greatly appreciated.   

 

 

saussureainvolucrata
Posts: 52
Joined: May 2013

Dear Suzie, I can't give you advice on whether to go with a clinical trial or not. But IN ADDITION to whatever clincial/chemo option you decide to go with, I would do some research on sugar and ketogenic diet. There are some people in this forum, who are advanced stage IV, and who are trying a no-sugar approach. Some are on the ketogenic diet. I'm doing some readings on it also. My mom is stage IV with mets to the liver and is beginning a Folfiri regimen soon. I think, in addition to her chemo regimen, she will cut out sugar and possibly minimize carbs (I still need to do more readings on this though). Try to stay positive! We are all in this together! We are all fighting!   

lilacbrroller's picture
lilacbrroller
Posts: 306
Joined: Jun 2012

What about RFA? If his tumors are small (1 cm or less), why not zap them with RFA?  One of my oncs wants to do this (I'm stage IV with supposedly inoperable liver and lung mets) if/when they shrink.  

I'm doing dendritic cell therapy now (see my post/blog on this site) but it's too early to tell if it's working or not. Other members/their family members are on it as well, with differing results. I think at least one member is doing dendritic cell immunotherapy thru a clinical trial at U of PIttsburgh in PA, with apparently great results. While chemo is good, there are other options.  

good luck

Karin

janderson1964's picture
janderson1964
Posts: 1688
Joined: Oct 2011

Google "Nano knife". There are only a handful of hopitals that have this device but seems like it could be an option. You said the spots on his liver are inoperabe. I assume that is because theya are too close to an artery. Nanao knife is just for that purpose. They insert 2 electical probes into the tumor and burns holes in it iva electical pulses. It is not supposed to effect any surrounding tissue such as vital blood vessels.

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

Having been through two failed chemos myself, I know how difficult this path can be.  From reading your post it sounds like you haven't yet had a 2nd opinion?  If that's correct, you might want to consider getting one, preferably from a NIH cancer facility (which should be up to date on the many different tx options).  You can check here http://www.cancer.gov/researchandfunding/extramural/cancercenters to see if you have one near you.  And talking to an experienced colorectal surgeon, not just the oncologist, can be helpful.  My experience has been that not all oncologists are equally knowledgable about surgical options, and I would want to make absolutely sure that that option is off the table.

As a side note, there is a woman on the Colon Club forum who is stage 4 and was told she was inoperable (primarily lymph nodes I think).  She went to several surgeons until she found one who would operate.  She's still around (although not NED) almost two years later.  It's not quite the same as your husband's case, but it does suggest that getting other opinions can really make a difference.

Good luck, and keep us posted.  Ann Alexandria

renw's picture
renw
Posts: 282
Joined: Jan 2013

Look into TACE. High dose local chemo continues to work even after resistance develops to systemic doses.

John23
Posts: 1832
Joined: Jan 2007

 

Re:

After seeking several second opinions all come back the same

 

 

Two questions:

1. Are all those opinions from Oncologists, or from Colorectal surgeons?

 

2. Are the physicians providing their “different opinions” of the same group and/or organization, or are they independent from one another?

 

There are plenty of other viable options of routes to take, aside from the Trial St. cul-de-sac.

 

I can never, ever understand why those left cold with western medicine will turn to trials and tests, allowing themselves to be used as a test rat for the industry, when there are so many other routes that have some historic value.

 

No, there isn’t any known “cure” for cancer, but there are other ways to fight cancer, and some here have had great success using those “other ways”.

 

Your physician providing an opinion for colorectal cancer should be a colorectal surgeon. Pet scans are useless and can indicate false positives. The PETs are great for treasure hunting and scaring the bejesus out of a cancer patient, providing the biggest selling point for the use of chemo and radiation.

 

75% or more of the liver can be resected and it will grow back.

 

You really should get other opinions from colorectal surgeons……

 

And it wouldn’t’ hurt to read the profiles of those here, to learn of their experiences. You just might learn of other ways to stay alive!

 

My best wishes for you both,

 

John

 

 

janderson1964's picture
janderson1964
Posts: 1688
Joined: Oct 2011

I am living proof that the liver regenerates after removing 75% of it.

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

that I am alive (and NED) today.

Just to provide a slightly different perspective!

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