CSN Login
Members Online: 6

You are here

JoeMetz - Update

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

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's picture
KathiM
Posts: 8077
Joined: Aug 2005

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's picture
fatbob2010
Posts: 467
Joined: May 2012

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's picture
Trubrit
Posts: 4296
Joined: Jan 2013

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's picture
ron50
Posts: 1663
Joined: Nov 2001

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

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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's picture
renw
Posts: 282
Joined: Jan 2013

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's picture
joemetz
Posts: 493
Joined: Nov 2011

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

 

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

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
Posts: 1170
Joined: Sep 2012

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

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

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.

Chelsea71
Posts: 1170
Joined: Sep 2012

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.

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

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.

Chelsea71
Posts: 1170
Joined: Sep 2012

Wow! Thanks for info, Ren.

tanstaafl's picture
tanstaafl
Posts: 1258
Joined: Oct 2010

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's picture
renw
Posts: 282
Joined: Jan 2013

I had to fight to get prescriptions for things like metformin, cimetidine and celebrex in Australia, though celebrex was easier than metformin as I had to argue less.

In germany, saw 2 doctors thus far and both recommend the use of all three. In fact was told to up my doses on some of these.

Very different approach, though I am not exactly going through the conventional cancer treatment centers in Germany, so this could be a factor.

tanstaafl's picture
tanstaafl
Posts: 1258
Joined: Oct 2010

She also did her normal UFT (5FU) - LV up to 24 hours before and after her 2nd, retroperitoneal surgery for the para aortic LN cluster to prevent regrowth and spread.   Not sure how close in and what liver surgery risks could be acceptable.     First surgery she was perioperative with IV C, big cimetidine, coQ10, vitamins D3 and K2. Both surgeries she had tapered off some of the other potential blood thinning supplements the week before, although I know some famous surgeons have used either fish oil or vit E for their standard surgeries.

Chelsea71
Posts: 1170
Joined: Sep 2012

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
Posts: 196
Joined: Nov 2012

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

Deena

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

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's picture
YoVita
Posts: 590
Joined: Mar 2010

are effective for you.  Please keep us posted. 

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

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's picture
steveandnat
Posts: 887
Joined: Sep 2011

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's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Sorry to hear of your struggles, but as I scrolled down, there are many good options out there. That gives us hope!!!

Judy

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Joe,

I hope and pray you get relief from your current treatment.  You are such a positive and strong man. 

 

Aloha,

Kathleen

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Wow, you really have had a rough stretch.  Hang in there.  George never had bone mets so sorry, no help there.  I sure hope the docs and your current course of treatment can once again get things under control.  I'm sorry, getting those kicks in the gut are so very tough to endure.  Stay postive.

Take care- Tina

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Stay strong and focused. So sorry to hear about the progression. Good luck pursuing different options!

- Karin

Cathleen Mary
Posts: 827
Joined: May 2011

 

Oh, Joe, i am sorry that you are going through all of this. It sounds like you have an agreesive team. Researching the options is both exhausting and hopeful. It is great to see others here already providing info worthy of conversation with your docs.

Please know that you are in my heart and prayer. Hang In!

Cathleen Mary

jen2012
Posts: 1607
Joined: Aug 2012

Hi Joe...im sorry to hear youve been having a tough time. I hope the treatment goes well...will be watching for an update. You are always so positive ...kind ...helpful- please keep us updated and get some of that support back.
Ren...thanks for sticking around and sharing your knowledge/research with us.

scared99
Posts: 74
Joined: Jun 2012

Hey Joe,   I am sorry you are dealing with these bone mets.   My mom was diagnosed stage 4 colon cancer almost a year ago.   Since April of last year she thought she threw her back out.  It turned out the reason she was having such pain was because she had a sacral bone met.   She was diagnosed with her colon cancer from the bone met.   She was in really rough shape last Summer.  Could not move around, infections left and right I really did not think she would make it a year.    She had radiation last summer for the bone met and has been on chemo since then.  She did not drive a car since her diagnosis and just the other day called me to tell me she went for a drive to the local mall... which shocked me !    As of today she is finishing up her chemo and going for scans next week.   She is doing 100 percent better than she did last summer and the doctor has been nothing but optimistic.  If you look on line you will find they have come a great deal in managing and treating bone mets. 

 

The biggest issue was the pain from the bone met.  They have treated her so far with Fetalyn patches and that has kept the pain at bay.  Her colon cancer did not take a normal path.  The larges tumor she has is in her sacrum.   The doctor has been more concerned with trying to eliminate and shrink as much of the soft tissue tumors as possible. 

scared99
Posts: 74
Joined: Jun 2012

Hey Joe,   I am sorry you are dealing with these bone mets.   My mom was diagnosed stage 4 colon cancer almost a year ago.   Since April of last year she thought she threw her back out.  It turned out the reason she was having such pain was because she had a sacral bone met.   She was diagnosed with her colon cancer from the bone met.   She was in really rough shape last Summer.  Could not move around, infections left and right I really did not think she would make it a year.    She had radiation last summer for the bone met and has been on chemo since then.  She did not drive a car since her diagnosis and just the other day called me to tell me she went for a drive to the local mall... which shocked me !    As of today she is finishing up her chemo and going for scans next week.   She is doing 100 percent better than she did last summer and the doctor has been nothing but optimistic.  If you look on line you will find they have come a great deal in managing and treating bone mets. 

 

The biggest issue was the pain from the bone met.  They have treated her so far with Fetalyn patches and that has kept the pain at bay.  Her colon cancer did not take a normal path.  The larges tumor she has is in her sacrum.   The doctor has been more concerned with trying to eliminate and shrink as much of the soft tissue tumors as possible. 

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

wishing you good results with the radiation treatments!  You are my "go-to" guy with your positive vibes and smiling face!  Take care and you are in my thoughts!

Also, thanks renw for the post about ALPPS.  My husband has numerous liver leisons and liver surgery is not possible at this time.  This is something I need to look in to and learn more about.

Best to all,

Ellen

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

So sorry for your fight, you don't seem to get a break! Please keep us updated with your treatment. Where is that CANCER cure? So frustrating.
Sandy

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Rare for bone, but it does happen.  Most of the cases I've known the cancer was in the sacral area, which is difficult to treat.

Hoping that the radiation eases the hip and bone pain for you...you've got an entire room pulling for you!

Luckygirl2
Posts: 308
Joined: Mar 2012

Thinking of you and sending prayers your way.

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

It's amazing what a few days can bring... and the positive encouragement from all of you here in the CSN Fam!

thanks so much for your positive messages and well wishes. It's so encouraging and uplifting.

I had my 6th of 10 radiation treatments today... and it's nice to be on the "almost done" side of this treatment. Radiation machines are very intimidating, and depressing, so I lay there and visualize of the last treatment and think about the nice card I am going to get for the two ladies who have giving me the laser pointed sunburn to my butt & hip. 

Met with oncologist today and set the plan for the next few months.

May 28th... PET scan to see how Y90 did on the liver mets and to review the bone mets in left hip.

Today, X-rays of right hip and femur to see if there are any bone mets in that side. Most likely the pain in the right side is from "overcompenstaion" when i walk with a limp favoring pressure on the opposite hip of the hip with the bone mets (did I loose you yet?... :-) )   They also did complete blood work.

the plan going forward, is to finish the radation treatments on the 13th. Begin weekly shots of Xgeva to help to strengthen the bones. Then, beginning first week of June begin Avastin, 5fu & Irinotecan (aka: Campstosar, aka: CPT11) which will go for 10 weeks.

I am unfamilair with Irinotecan (camptosar/CPT11)... let me know.  

it's nice to have a PLAN. But, the good thing... is that the PET scan will be May 28th.... and if there's remarkable change since having y90 & radiation... then we change the plan cuz that would be my miracle.

again... thanks to everyone here on this CSN board. You are awesome.  Let's all win this battle.

#5words2cancer  http://www.ihadcancer.com/5words2cancer  check it out!

my 5 words for today:  You Picked The Wrong Dude!

Or "Cancer, get the eff out of my life"  (okay... that was 8 words... but I mean it)

hugs

 

Joe

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Joe. Folfiri has been Steve's only cocktail, so far. Has tolerated it really well. I dread the day he switches to Folfox. The neuropathy will likely affect his ability to play the guitar. (Which will affect his mood). His main complaint is fatigue on the day following disconnection. Has had no nausea, diarrhea or constipation. Has not worked since diagnosis but otherwise lives a very active life.

Good luck

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I just got off of Irinotecan, diarhea happens, make sure immodium is on hand, use it as soon as it starts, and if continues another two hours later, and so on and so on, ask your onc, it's pretty standard.  I lost 20 pounds on it, 15 in first month, so be careful, don't need to be losing weight at this juncture.

If you have too much diarhea make sure you contact onc to get medication to control it.  Also low white blood cell count a possibility, I had to get Nulesta (spelled wrong probably) after 3rd time due to low white blood cell count, when that happens you get Nulesta 24 hours after every Irinotecan, mine was every two weeks, everyone is different.  I also lost my hair on it, within 3 weeks, some people thin, some people lose.  Mine went to Locks of Love, had a "Hair Today, Gone Tomorrow" party when it came out in clumps when I put a brush to my hair.

Other then that, it's been pretty good, sure shrunk the tumors along with the Erbitux for me. Oh lost most eyebrows (kept eyelashes for most part) armpit hair and um, other places.

Hugs to ya,

Winter Marie

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

thanks for the smile about the hair.

in all my treatments... i never have "lost it all"  it has thinned out, so I went to the butch hair cut... milatary style. but, i never lost all my hair.

and the "umm other places"... some people pay big money for that?  oh wait... this crap is Big Money!

 

hugs!

 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Joe - So sorry to hear about your trials.  You are a stong and giving person, I hope and pray for you that you can find a way to stop or at least slow this disease.  Traci

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

Traci... thanks for your note and prayers.

you said it right there... Cancer Sure Does Suck!

but, its what we have been delt, and I sure wouldn't wish it on my worst enemy!

but, I also would rather have it than anyone in my family. So I guess if someone has to have it, its best to be me.

I am using it to teach so many lessons and beginning to change how some people think and how they face adversity.

doubt there's anything more serious than a cancer battle... and so many life lessons to pull from this crap.

hugs!

Subscribe to Comments for "JoeMetz - Update"