JoeMetz - Update

joemetz · May 2013

Greetings

Its been awhile since I've been on here. April was a very difficult month.

First, I've noticed that we have MANY newbees on here. Welcome, but I must say... each time I see a newbee here, colon cancer continues to really make me mad. Real Mad!

So, for the newbees... here's a quick recap:

November 1989 to March 1990 - Radiation treatment to treat and beat Non-Hodgkins Lymphoma

March 1990 - "remission"

11-24-2011 - "You have stage IV colon cancer, with countless mets to the liver and you are inoperable"

12-16-2011 - Colostomy bag installed. Colon blocked in the upper transver area. (colon cancer cause: Radiation Treatments from 21 years prior)

1-3-2012 - Begin Folfox 6 w/ Erbitx

7-3-2012 - Folfox 6 w/ Erbitux is stopped... side effects destroying the skin and causing major neuopathy.

7-21-2012 - Colon resection + bag take down (cut out 10" of colon) Everything was a sucess, Folfox&Erbitux killed nearly 70% of the cancer in the liver and the resection cut out everything there.

9-1-2012 - Begin "maintenance" chemo: Avastin + Xeloda

2-28-2013 - Stop Avastin + Xeloda... it's no longer working. Cancer growing inside the liver. Having major hip pain since the holidays.

Had been exploring other "liver directed treatments".

4-18-2013 - Radioembolization aka: y90 treatment to the liver. They treated the entire liver.

while preparing for the y90 treatment, those doctors ordered a PET scan. PET scan uncovers 6 bone mets (5 in the hip and pelvic area, 1 in the shoulder)

4-30-2013 - Begin Radiation treatments to the bone cancer mets (planning on 10 treatments)

PET and CT scans are planned for 4 weeks after last radiation treatment.

Radiation treatments are not painful, and side effects have not set in yet. Night sweats from the active cancer is back and in full force. Can't wait to see if the y90 worked. Nautiousness and much pain in the hips is hard to deal with. The constant flow of bad news is beginning to really get to me. I pray for a miricle. And, I pray for each of you here at CSN in hopes that one day there is a cure

Hugs

Joe

KathiM · May 2013

Sending soft hugs, dearheart....

I'm sorry for all of your trials (can't think of a better, non-4 letter word here). I wish for you that miracle (Maybe the y90?).

Hugs, Kathi

fatbob2010 · May 2013

Strength

Joe,

I have watched your battle for some time now. You are a valliant warrior. My personal belief is that there are miracles and my hope is for you to get one of them.

Fight the good fight...Art

Trubrit · May 2013

I will pray for a miracle too

I know I've already told you, but I love you avatar. It makes you real to me, so when I pray, I see your face and I pray feverently for you.

You are obvioulsly strong, and healthy inspite of the Cancer. I pray that your health, good diet, and treatments, along with all those who are praying or sending good vibes to you, will bring that miracle we all want for you,

I hope you have a good caregiver. Parents maybe (mine are gone), siblings, friends, loved ones. I HONESTLY believe that LOVE is a huge healer.

May you feel my love and prayers for you.

SUE

ron50 · May 2013

Thinking of you mate
Wishing you the best and hoping something new and effective comes up for you,,,Ron.

annalexandria · May 2013

I'm sorry, Joe...

you're always such a source of good spirits on this board, and I can "hear" the worry and fear in what you've written. I think we all fear the idea of bone mets a great deal, and I'm just so sorry you have to face this reality. Do you ever read over at the Colon Club? Although she also posts here, most of Kathryn in MN's experiences with this has been written up over there. You might find what she has written about having bone mets, and her treatment choices, to be helpful.

I'm sending strength, and love, and hope your way. Wish I had more to offer. AA

renw · May 2013

Hello Joe, good decision to

Hello Joe, good decision to focus on the liver. I faced the dillema of y90 microspheres recently. I opted for chemoembolization first, leaving y90 for later. Preliminary results with the chemoembolization look promising, but the real results will come in about a month.

Before I get too sick, my plan B is ALPPS. Its quite an exciting two stage liver resection which can be done even with full liver involvement and extensive mets.

Fyi: http://www.alpps.net

joemetz · May 2013

renw said:
Hello Joe, good decision to
Hello Joe, good decision to focus on the liver. I faced the dillema of y90 microspheres recently. I opted for chemoembolization first, leaving y90 for later. Preliminary results with the chemoembolization look promising, but the real results will come in about a month.

Before I get too sick, my plan B is ALPPS. Its quite an exciting two stage liver resection which can be done even with full liver involvement and extensive mets.

Fyi: http://www.alpps.net

Plan B

Thanks so much for the note.... I have not heard of ALPPS.

sounds interesting. I just shared this email with two of my doctors.

thanks again

Joe

Chelsea71 · May 2013

renw said:
Hello Joe, good decision to
Hello Joe, good decision to focus on the liver. I faced the dillema of y90 microspheres recently. I opted for chemoembolization first, leaving y90 for later. Preliminary results with the chemoembolization look promising, but the real results will come in about a month.

Before I get too sick, my plan B is ALPPS. Its quite an exciting two stage liver resection which can be done even with full liver involvement and extensive mets.

Fyi: http://www.alpps.net

Hi Renw
Nice picture. That's
Hi Renw

Nice picture. That's actually how I pictured you in my mind. My husband is hopefully going to have that surgery soon. Providing there is no progression. His surgeon is listed in that group on the website. The one from Montreal, Canada. I'm pleased that you approve of this surgery. I know you really do your homework and are up on the latest treatments.

Chelsea

Chelsea71 · May 2013

Well Joe, you've finally
Well Joe, you've finally posted something that I did not enjoy reading. I am very sorry about this new development. Must have been a huge disappointment for you and your family. But I know that you will rise to the occasion and continue fighting the battle with grace and humor. So many people do well with bone lesions. Now you know the cause of the hip pain and it can be dealt with. Wishing you all the best. Looking forward to hearing the results of the y90.

Chelsea

Deena11 · May 2013

Oh Man

Joe, you have had quite a journey!! Wishing you strength and hope for an easier journey.

Deena

renw · May 2013

Chelsea71 said:
Hi Renw
Nice picture. That's
Hi Renw

Nice picture. That's actually how I pictured you in my mind. My husband is hopefully going to have that surgery soon. Providing there is no progression. His surgeon is listed in that group on the website. The one from Montreal, Canada. I'm pleased that you approve of this surgery. I know you really do your homework and are up on the latest treatments.

Chelsea

Even if there is progression

Even if there is progression getting the liver in order is crucial. Since the liver regenerates so quickly with this procedure, chances are that the new segment will grow back within a week cancer free. If you get new mets into the liver later, which does happen, a standard liver resection can then usually be used to treat any recurrences. There are some articles on pubmed too. It looks damn promising and gives people who have been told that they do not qualify for liver resection a curative chance, or at least a greatly increased OS as often its liver failure that will get you.

renw · May 2013

Alternate 2 stage liver resection with portal ligation

http://www.elsevier.es/sites/default/files/elsevier/eop/S2173-5077(11)00065-2.pdf This procedure is similar to ALPPS, but also ligates the bile duct. They claim faster regeneration rates.

YoVita · May 2013

I hope your radiation and liver directed treatments

are effective for you. Please keep us posted.

renw · May 2013

joemetz said:
Plan B
Thanks so much for the note.... I have not heard of ALPPS.

sounds interesting. I just shared this email with two of my doctors.

thanks again

Joe

Fyi: with my current

Fyi: with my current treatment I am doing it more strategically. The chemoembolization is to help break down the tumour structure together with tripsin and chemotrypsin enzymes. This is to help expose cancer cells that are otherwise protected by the tumour walls. Tomorrow I will hit them with the Removab antibody. My cancer Has epCAM overexpression and since removab attaches to epCAM receptors and tags the cells for the immune system to destroy I have high hopes for this treatment. Few days after that I get an injection of a dendritic cell vaccine that has been culturing for the past 2 weeks. The aim is to ensure that there are enough white blood cells in my system to kill off all the removab tagged cells.

Wait a few weeks, rinse and repeat.

Chelsea71 · May 2013

renw said:
Even if there is progression
Even if there is progression getting the liver in order is crucial. Since the liver regenerates so quickly with this procedure, chances are that the new segment will grow back within a week cancer free. If you get new mets into the liver later, which does happen, a standard liver resection can then usually be used to treat any recurrences. There are some articles on pubmed too. It looks damn promising and gives people who have been told that they do not qualify for liver resection a curative chance, or at least a greatly increased OS as often its liver failure that will get you.

Steve goes for a scan this
Steve goes for a scan this week. If there is progression they will likely prefer to do TACE or Theraspheres. I'm hoping I will be able to convince them to do the resection, regardless. We live in Ontario and could not find a surgeon within our province that would even discuss a resection. Quebec appears to take a less conservative approach to cancer treatment. Thanks for this info. Will check out the articles on pubmed.

AnnLouise · May 2013

Joe....

I am so sorry that you are having such a hard time. You are so supportive and inspirational to all of us that its is time for us to send you some support and strength. I had SirSpheres in Nov. and Dec. and had a clear liver Pet in March (of course I had them other places). Is that what you had? If so, I hope your results are also good. I finished radiation SBRT 4 weeks ago on a lung met and abdominal wall....5 treatments on lungs and 3 on abdominal wall. I didn't have bad side effects, just stomach pain for about 4 days. I am sorry that you are in such pain....this would be a good time for a miracle! Thinking of you, your wife, and children. As a wife and mom of 5, I realize how hard it can be for your family also. Sending strength and support...~Ann

steveandnat · May 2013

Praying for you

I too am so mad at thcan server but we know it's a big roller coaster. Sometimes I wonder where we find our strength. I now am dealing with getting use to being catherized. Hang in there and I pray your treatment gets everything under control. Jeff

herdizziness · May 2013

Joe

My sister-in-law has been dealing with lung, breast (originally breast cancer) liver, lymph and bone mets for over a year, things are still shrinking in her !!!

i think of you as our cheerleader, you keep us in good spirits and love the cheering you do for us.

So cheering you on now, I know you can do it! Let the radiation get rid of those pesky bone mets.

Winter Marie

tanstaafl · May 2013

renw said:
Even if there is progression
Even if there is progression getting the liver in order is crucial. Since the liver regenerates so quickly with this procedure, chances are that the new segment will grow back within a week cancer free. If you get new mets into the liver later, which does happen, a standard liver resection can then usually be used to treat any recurrences. There are some articles on pubmed too. It looks damn promising and gives people who have been told that they do not qualify for liver resection a curative chance, or at least a greatly increased OS as often its liver failure that will get you.

these extras

Thanks for all your searching, skills, and sharing Ren. I would be interested to know how these doctors feel about operative/perioperative adjuncts like cimetidine, celecoxib, menatetrenone-4 (human K2) and ascorbate for advanced liver procedures, some of the things that seem to be crucial to my wife success in her cancer journey so far.

Of course they are varying degrees of accepted, cimetidine and celecoxib being already accepted in surgery and VK known for helping some kinds of liver disease.

renw · May 2013

Chelsea71 said:
Steve goes for a scan this
Steve goes for a scan this week. If there is progression they will likely prefer to do TACE or Theraspheres. I'm hoping I will be able to convince them to do the resection, regardless. We live in Ontario and could not find a surgeon within our province that would even discuss a resection. Quebec appears to take a less conservative approach to cancer treatment. Thanks for this info. Will check out the articles on pubmed.

If you go for TACE, have your

If you go for TACE, have your radiologists look up studies on immunochemoembolization done in Hamburg and Brno. They report better outcomes and all it involves is adding a little GC-MSF into the chemo mix to stimulate macrofages inside the embolized liver. Also if using irinotecan as one of the chemo agents, I would make sure they use the irinotecan DC microbeads. Good luck.

JoeMetz - Update

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