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2 Chemo's down (54 weeks!), now on to next treatment option for me.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

I haven't been around here much, as I've been back to work and overall was doing pretty well on the Xeloda & Avastin.

I had six months of Folfox & Erbitux (24 weeks of treatments - Folfox on the odd weeks, Erbitux on the even weeks)

then in late July 2012, a surgery to resect the liver and to remove "the bag" (which I had for seven months)

we waited 4 weeks after that surgery to start Xeloda and Avastin on Sept 1st. This was the "maintenance chemo"

it worked, for about 4 months... the past 2 months it hasn't worked and it showed in my most recent CT scan.

the Oncologist wanted to dive into Folfuri and Avastin, I wanted a more liver directed therapy to just focus on the cancer in the Liver.

 

Transplant is not an option for me. Liver resection is not an option for me. And, in my mind... cancer for life isn't a really good option.

One time I read somewhere on CSN of the progression of the cancer learning how to grow around the cancer, or the chemo kicking our ass so much that we have to change to a weeker dose or a weeker chemo.

anyway, I've been lurking and learning here and many other places. Asking lots of questions and trying to get second and third opinions. I've written letters, called several different types of doctors and also had conversations with the alternative therapy guys and gals.

Basically, I came down to three choices for me.

1. Liver directed therapy... y90, aka: SirSpheres or radioembolization. This option heats up or burns the tumors in the liver, without treating the rest of the body.

2. Liver directed thereapy... HAI Pump. Everyone around here in medical team, says it's old school and no one uses it anymore.  Sloan-Kettering speaks very highly of this and I have spoken to them. HAI Pump pours the chemo directly onto the liver. treating only the liver and not the rest of the body

3. Liver directed thereapy... Cryosurgery where they freeze the spots within the liver with essentially Dry Ice.

 

and obviously, the other options are folfuri, avastin and all the other chemo cocktails.

 

in my last CT scan on March 3, 2013 the cancer has grown in my liver. My CEA level increase, and they suspected there was a new spot or growth on my adrenal gland and kindey. (left side)  they wanted to dive right inot folfuri, yet I had my eyes focused on a liver directed therapy. But, if the cancer had spread, my three options for liver directed therapy would be off the table.

so, I demanded a biopsy of the adrenal gland. not an easy test... they boipsy'd it under a CT scan and it was definately a costly proceedure. But it came back in my favor. NO CANCER spread.

I have been totally off chemo since Feb 28th and need to be off for six weeks, prior to y90 treatments. I am going over to Cleveland Clinic on Friday for hte mapping of the liver and the spots, and they put blockers in the other arteries to prevent the y90 beeds from going where they are not supposed to go.

After the mapping proceedure this Friday, I'll know if I qualify for the y90 treatment. It sounds like around 4,000 of these treatments are done per year. If I qualify, my first treatment will be the week of April 15th

I'm nurvous and excited about this direction I am taking.

nervous to be off of chemo for six weeks, while we know the cancer is alive and active within my liver.

I'm excited because I already feel better than I did any month I was on chemo the past 14 months.... and excited for the potential to burn up those tumors in my liver to the point where I might be able to stay off chemo for a year or more.

my doctors did NOT bring all this up to me.

I had to read, learn, ask questions... be my own advocate.

Be you own advocate!

Spend less time in a pitty party about what you have, and spend more time getting more information and discoverying more options for how you're going to beat this stuff.

Giddy Up!   Battle Mode continues!

Joe

 

My most recent blog: http://www.caringbridge.org/visit/joemetzger/journal

 

 

steved
Posts: 836
Joined: Apr 2004

Well done for taking control of your own treatment In a very informed way. It sounds like you aretruly making decisions that are right for you. Hope you enjoy yourbreak from chemo and y90 goes ahead. Will be interested tgenera of your experience when it happens and of course the outcomes. Hope you are still managing to work andcreep some normality in your life while this is all happening,

Steve

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

There is no reason why treatments such as sirt or chemoembolization can not be done together with systematic chemo. That was one of my oncologist's myths that I managed to dispell.

I personally opted for TACE rather than sirt first. Sirt is my plan b.

Chelsea71
Posts: 1170
Joined: Sep 2012

Nice work, Joe. Steve and I have had a similar experience. We had to leave our area in order to find a doctor who was willing to help. When we found the right person, we couldn't believe the options that were available. The liver surgeon from The Ottawa Hospital, where Steve is treated told us that there was nothing that could be done. Systemic chemo for life. Like you, his cancer appears to be only in the liver (we hope). Systemic chemo indefinitely? Not acceptable. We all have to take charge and be strong self advocates. Good luck.

Chelsea

tanstaafl's picture
tanstaafl
Posts: 956
Joined: Oct 2010

... biopsy of the adrenal gland... under a CT scan ... a costly proceedure

give us a hint ?  Thanks for the detailed view.

coloCan
Posts: 1845
Joined: Oct 2009

www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1354&pageaction=displayproduct

Also, a phase ii trial i read of in july,1012 involved irinotecan,5-fu and oxi and seemed to reduce size of liver mets,tho you're beyond that i think.....

 

 

 

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

Joe sounds like you have it all covered.i am happy that you have a good plan keep us updated....Godbless....johnnybegood

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

Thanks for reminding the rest of us.  I'm sorry you've had to pursue another treatment option.  You've certainly done your homework.  Good luck with your plan.   

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Joe....I did this procedure in Nov. and Dec., three weeks apart. Just got the pet scan results last week and my liver is clear of tumors! Any question, please ask! ......~Ann

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hope you have GREAT results from this Laughing

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

Impressive!  Do you know why they consider the HAI pump old-fashioned?  It seems like a smart way to deal with liver involvement to me...AA

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thank you for the update. please know i am praying for you! cleveland clinic is very good. if you ever feel you want another place, ohio state  & uc med center ( in cinti ) are very good too. for my hipec surgery, i checked out all 3 places. we are lucky to have good centers in our area.

hugs

judy

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I hope you have wonderful results from the spheres. Craig (Sundance) here also had RFA and Cyberknife and it got rid of his liver tumors. My daughter is possibly going to have Theraspheres again or Cyberknife if any disease remains in her liver at the next scan (PET/CT). The last one was questionable - and it was her first, so nothing to compare it to, so she's to have six more treatments (Folfiri + Erbitux) and rescan. That's the plan as of this minute, anyway. It could change. Her first oncologist never did a PET scan. He said since she was stage IV, there was no point. Never did a bone scan either. All she'd ever had was an abdomen/pelvis CT. She's since had the others - chest, bone scan, PET, etc.

Sounds like you are doing well otherwise and I hope this treatment finishes this disease off for you! I believe in these liver targeted therapies. I am just disappointed that so many doctors say that HAI is "outdated," especially since so many are still having good results from it at MSK with Dr. K. Good luck with your mapping and lung shunt study (I guess you'll also have one of those)! And remember... it sometimes takes some time for the results to show on scan. And your CEA and liver enzymes might elevate after the procedure - maybe even a lot. My daughter's did. Suzanne Lindley at www.beatlivertumors.org had SIR spheres years ago and eradicated her inoperable liver tumors. She is a 14+ year survivor of stage IV colon cancer with mets to the liver. She is a GREAT resource for anything related to Y90 spheres. And I'm glad to see we have a new member here who had phenomenal results from it. Best wishes!

Sandy

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