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JoeMetz - Chemo Vacation, Scanxiety & Next Treatment UPDATE

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

Greetings!

It's been awhile since I've posted here, and wanted to share an update.

I was dx'd in November 2011. Had surgery in December to get "the bag".

Folfox & Erbitux from Jan. 3, 2012 to July 3, 2012.

Colon resection, bag take down and 5 week's off chemo.

September 1, 2012 to Feb 28, 2013 - Xeloda 5/days a week + Avastin every other Tuesday.

YESTERDAY was my very last day of chemo and taking a 6 week break in the action.

Have a CT scan on Monday, and they expect the only cancer remaining are about 6-8 spots on the liver.

Planning to have SirSpheres Treatment (aka: y90 or Radioembolization treatments) in mid-april.

There is a chance these things will eliminate the cancer, or at least freeze it so I can stay off chemo for awhile.

seems that my local docs state that my only option if "chemo for life" to keep the cancer from growing or spreading.

strange, but all of my chemo treatments are doing a great job... and I have gained weight, overall I feel pretty good, but the constant side effects of the mouth sores, bloody noses, hand and foot problems, chemo-brain and overall feeling like I have a hangover most days... well, it's getting to me.

I want other options, and this SirSpheres treatment appears to be the only option, other than Chemo for Life.

If anyone has feedback, negative or positive... I'll take it!

I'll keep you posted on how the SirSphers works, as I haven't seen too many posts on such.

I pray for everyone on this board and for all the newbies that show up here, way too often.

Hugs

JoeMetz

http://www.caringbridge.org/visit/joemetzger

 

 

lilacbrroller's picture
lilacbrroller
Posts: 334
Joined: Jun 2012

Yay!  congrats!  Cause to celebrate.  (I like the word "scanxiety" - perfect). glad the chemo is working. 

Never heard of SirSpheres - I just checked it out on Wikipedia.

good luck with your next treatments

 

Karin

Trubrit's picture
Trubrit
Posts: 1712
Joined: Jan 2013

I love your avatar.

I'm so sorry that your have such few options.  Chemo for life would not work for me, I am only on treatment three and I've had enough. I doubt I'd have the guts to go for chemo for life. 

I hope that you find this SirSpheres treatment works well for you. 

I've nothing more to offer but my prayers and support.

wolfen's picture
wolfen
Posts: 1214
Joined: Apr 2009

Glad you have finished this tough part of the journey. I know some of JBG's chemos were awful for her.

Hubby has not reached this leg of the journey yet. Due to start rads on Mon. Docs can't give him both at the same time.

Hope Sir Spheres does well for you. Take care.

Luv,

Wolfen

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

thanks for the kind words regarding my pic. I took that three months ago.

that new skin of mine, is what came in after 6 months of the Erbitux rash. The hair came back and I gained 30lbs back, while on Xeloda and Avastin. I got back to work the day I took that pic and put my favorite shirt and tie on to celebrate 9 months of chemo... I took pics of myself every couple weeks during the Folfox & Erbitux treatments... as I lost 50 lbs and had the worst Erbitux rash they've seen here in town.  So, I'm proud of that pic. (sorry for the long story... but its the emotions of dealing with Cancer)  LOL.

yeah... cancer for life seems like playing defense for life.  I figure we have to fight to eliminate the cancer. Get on teh Offense, instead of the defense.

 

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

thanks for the kind words regarding my pic. I took that three months ago.

that new skin of mine, is what came in after 6 months of the Erbitux rash. The hair came back and I gained 30lbs back, while on Xeloda and Avastin. I got back to work the day I took that pic and put my favorite shirt and tie on to celebrate 9 months of chemo... I took pics of myself every couple weeks during the Folfox & Erbitux treatments... as I lost 50 lbs and had the worst Erbitux rash they've seen here in town.  So, I'm proud of that pic. (sorry for the long story... but its the emotions of dealing with Cancer)  LOL.

yeah... cancer for life seems like playing defense for life.  I figure we have to fight to eliminate the cancer. Get on teh Offense, instead of the defense.

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Good luck, Joe. It will be nice for you to have a break from the chemo. I've heard good things about Theraspheres. My husband may be doing it, as well.

Chelsea

gfpiv
Posts: 50
Joined: Apr 2010

Well done so far Joe.  Sir Spheres sounds like a great option for you, assuming you are looking for a shot at becoming resectable.  Hopefully that will be an option in my own quiver for further down the road if necessary (Sloan Kettering has/had a trial for Sir Spheres after progression on HAI).  On that subject:  I don't recall your full background, have you looked into HAI as well? 

 

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

I had far too many leisons on the liver in the very beginning to ever qualify for a liver resection. (well, as least that's what I've heard from at least 5 different oncologists/liver specialists).

I had like 12 large spots (4cm x 7cm x 2cm) another dozen that were 1cm x 1cm x 1cm and then they said countless "micro spots".

luckily, the folfox and erbitux killed the micro spots and the 1cm spots, and we're down to about 6-10 spots that are about 2x4x2 or smaller.

so because of this, my options are a bit limited.

 

I have asked about HAI however, in Toledo and at Cleveland Clinic... the five different docs have said that its not an option.

part of me is thinking that I should get over to New York or Houston to get their opinions.

 

Have you had the HAI pump?

how'd it work for you?

thanks for your feedback and ideas.

 

gfpiv
Posts: 50
Joined: Apr 2010

Joe,

All due respect to Toledo and Cleveland, but I'm not sure why they said HAI wasn't an option for you; perhaps it was due to their lack of familiarity with the procedure?  (I assume they didn't do a specific scan of your hepatic artery vascularity.)  Do you have cancer anywhere besides in the liver and colon?  If so, and if extensive, that might make it a non-option; but if not, then I'm not sure why they said no.

Yes, I have the HAI pump.  Although it hasn't gotten me to resectability, many initially inoperable people have gotten to resectability via HAI.  In my case, I credit it as probably the reason I'm still here today, 3 yrs after stage IV diagnosis with 2/3 of liver involved, and only having had chemo treatment (no resection, other than the primary and 2 lymph nodes).  I still have numerous liver lesions (too many to operate on confidently), but they have all shrunk way down and calcified.  In fact, knock on wood, I've been off all chemo for over nine months now (hallelujah), with no growth of anything. 

In any case, I'll spare you details here, but you can certainly search the threads for more info on HAI... and I'd be glad to answer questions.  Just wanted to bring it up since IMHO it may be a slightly less "radical" option than Sir Speres (which again, I also see as a good option).  One caveat that you may have heard is that very few centers other than MSK in NYC do HAI (not sure about in OH), so that may be an issue if you can't get to NYC for the install, and once monthly thereafter. 

Best of luck,

Chip

 

 

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

I did a lot of research into sirt and chemoembolization as I was considering one of these for my next treatment. The sirt specialist I saw does both procedures. He recommended sirt first as patients who have not failed chemo, have 80% responce rate, which is better than chemoembolization. However, there are more risks. I was told 3% died of this procedure, though mostly sicker patients. There is also a chance of ulcers if the beads end up in the lungs or colon. Chance I think about 25% chance of this happening. Permanent liver damage can also result. Radiation can also help mutate the cells further possibly resulting in more aggressive disease. Upside is that complete responces are seen.

I personally decided on chemoembolization first, with irinotecan micro beads. I'll also try to have GCMSF thrown in as immunochemoembolization had some interesting phase 1 results. The y90 sirtex procedure I am saving as plan b.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

goodluck with your treatment.

google pete and vogel, the chemo break sounds good, mine is lastinng a long time.

hugs,

pete

ps maybe email hallwang for an alt to radio if you want, regardless my best.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

I'm glad that overall things look good. As you know there's no One Path to take and No Guarantees at all. I've been at this a long time. A week ago I celebrated nine years of Living With Cancer. During the past six years (or so) I've been on Erbitux and Irinotecan and it's kept me in a place where I've gotten RFA's done roughly once a year. After this long in treatment one could say I'm on "Chemo for Life". It can also be viewed as "Chemo has given me Life". I strongly believe that we hold the power as to how we view ourselves. Are we People with Cancer or Victims of Cancer? There's no right or wrong, it's just how WE view ourselves but I believe it has much to do with how well we fare.

As you may (or may not) remember, I had HAI pump therapy and I've been under the care of MSKCC. There aren't many hospitals that do that therapy and some oncologists consider it to be outdated. I've mentioned that to my Onc (who's been a pioneer in the field) and she told me she's heard that a lot too. "But, many of my (her) patients are still around..." so that's that! I will say that we all need a break from time to time and also that the Erbitux rash is really a non-issue for me. I get some dry cracked skin and some mild rash on my torso but in the scope of things, it's not a big deal for me.

I'm not familiar with Sir Spheres other than hearing the name. I wish you well, enjoy life!

-phil

jen2012
Posts: 1255
Joined: Aug 2012

Thanks for the update.   Enjoy your break and good luck!

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Good to hear that you are doing well.  Best wishes on the SirSpheres.  Maybe I need to look into those....  I am also a "chemo for life" patient according to my oncologists, and it does get tiring at times.  I feel like I'm just treading water and waiting for bad news, especially since my first chemo regimen (FOLFOX + Avastin) shrank my tumors but didn't eliminate anything completely.  I generally feel very good, have stayed active, have tolerated chemo very well, and have also gained back 25-30 of the 45 pounds of weight I lost.  I feel like I am beating this cancer, but the CT scans don't seem to agree with me... 

Tedd

jasminsaba
Posts: 149
Joined: Jul 2011

Hi there - I don't have any direct experience but wanted to tell you about this lady on another forum I visit who was told NO surgery on the liver because of too many lesions ... she visted MD Anderson (who by the way does not do the HAI procedure) and was told resection would be possible. Long story short, they opened her up and decided to abort the operation because the risk of resection was too high.

She then was encouraged by that board (online support board) to visit Dr. Kemeny at MSK for a consult ... she did and she qualified as a candidate for the HAI despite having numerous lesions and is currently doing very well ... she is still receiving systemic chemo along with HAI to address the liver mets ... but they have reduced in number and size and she is on deck for a liver resection soon.

I am not qualified to offer any advice, but if it were me, I'd look into the possibility of a 2nd opinion with Dr. K. Apparently, these situations are her specialty.

jasminsaba
Posts: 149
Joined: Jul 2011

Hi there - I don't have any direct experience but wanted to tell you about this lady on another forum I visit who was told NO surgery on the liver because of too many lesions ... she visted MD Anderson (who by the way does not do the HAI procedure) and was told resection would be possible. Long story short, they opened her up and decided to abort the operation because the risk of resection was too high.

She then was encouraged by that board (online support board) to visit Dr. Kemeny at MSK for a consult ... she did and she qualified as a candidate for the HAI despite having numerous lesions and is currently doing very well ... she is still receiving systemic chemo along with HAI to address the liver mets ... but they have reduced in number and size and she is on deck for a liver resection soon.

I am not qualified to offer any advice, but if it were me, I'd look into the possibility of a 2nd opinion with Dr. K. Apparently, these situations are her specialty.

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

I had the procedure done in Nov. and Dec. (2012) and just got the pet scan results..... Liver is good!!!! if you have any questions, feel free to ask...pet scan also confirmed lung mets and possible abdoninal tumor and neck abnormality. More tests and starting radiation! But good news about the liver! I had stage IV colon cancer with mets to liver, chemo, liver resection, ablation, recurrence and then SIRTS.    ~Ann

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