I figured I would say hello update

CowboysGirl

Hi everyone. My husband of 13 years (he's 55, I'm 43) was dx in January 2011. This is a guy, by the way, who never missed a day of work in his life for illness (and only missed minimal days pre-surgery when he crushed some vertebrae!)

So~ we did the initial endoscopy that found the tumor (located near the opening for his stomach) on January 27th (he was having trouble swallowing, but was still eating steak); once that was found we were plunged into the flurry of activities and events that i know you are all familiar with, too: another EUS, consultations with a radiation oncologist and hematologist/chemo doc, a PET scan, CAT scans, liver biopsy, more EUS's with "roto-rooter" (argon beam cauterization- twice) and finally, a second opinion at Moffitt Cancer Center in Tampa.

After all was said and done, everyone agreed: Stage IVb. Liver, lungs, regional nodes. Not a candidate for radiation or surgery; recommend palliative care chemo...

So, he had his first chemo treatment on 3/14/11 - EOX, except he didn't do the "X" part, which is Xeloda, because the E & the O made him violently ill for 2 weeks. It shook him to the core; he lost alot of weight. They did NOT put a feeding tube in so it was all about me & the boys (our sons are 27 and 21) trying to get him to eat something, anything! He was miserable and spent those 2 weeks (plus a little more) doing nothing but going from the bed to the back porch where we fixed him a bed (we live in the country, surrounded by trees, and spring was coming, and I think that did him more good than anything).

He has decided against doing the I.V. chemo anymore. He told the doc he would *try* the Xeloda, but so far he has not. He's been worried about what it might do. He says he would rather have a few good months of nothing wrong than to have two weeks of being sick, two weeks of trying to get over it, and then starting it all over again, just to live a little bit longer.

He's eating a little better now (yay,finally!) but still eats nowhere near the 2,000 calories per day that docs have been recommending. I call him my Cowboy for a reason-he's rough and tumble, and likes to be outside (HAS to be outside) and is used to eating only 1 big meal a day (coffee for breakfast, sweet tea for lunch). I am trying like mad to re-train his thinking about meals..and we now eat outside. He has to regurgitate something before he can eat...I am thinking it's time for another argon beam cauterization (we call it roto-rootering). He's still eating little bits of mainly soft stuff-rice, Ensure drinks (he wont drink the high calorie carnation stuff, and he doesn't want ice cream) and oh, his current fave: banana and mayo sandwiches on sunbeam bread.

It's a weird place to be, where cancer patients and their families are. Trying to balance work and home and finances and insurance stuff and running interference on phone calls and visitors when necessary.. its alot of work. Mostly, though i am absolutely grateful for every minute we get to spend on the back porch watching birds and big bumblebees and flowers and trees, feeling breezes and just loving each other. I love him with all of my heart. And I keep feeling like I am missing something; there must be something I am supposed to be doing....something else. He's a stubborn cuss (said with love!) and I also know ultimately everything is his decision. I will support him in all decisions. I do gently press to take the xeloda, however, because it is supposed to be less intense than the other chemo and he can stop it if he decides no more. But if he doesn't try the Xeloda, I will call hospice, as the Dr's office suggested. The Dr. at Moffitt Cancer Center told us that almost more important than chemo at his stage is "eating sleeping and pooping" on a daily basis. I get that. He wants to feel human.

We're also waiting for the biopsy results for the HER 2 test to come back..

What do i do? Am i missing something? Sometimes i feel like we're just "accepting" but I'm not sure how to fight. The other thing is, even though i say "we" -we went to the doc, we tried this-Cowboy is the one who calls the shots-of course, it's his life. I just don't want to think i did him a disservice by not ferreting something else out. Suggestions?

Thanks in advance for anything you can offer-courage,wisdom, hope, faith, good juju vibes and advice are all gratefully accepted- and blessings back to all of you, for sharing in this journey. xoxo

CowboysGirl

PS
thanks for overlooking my atrocious spelling, and my penchant for believing that capitalization is optional

Sarah B

I'm right there with you, sister
My husband was diagnosed Jan.3 and he's 51. Luckily no metastisis but Stage 4 nonetheless, so we're hopeful the chemo radiation will knock it out. This is a long shot, but I'm offering it out if you want to try something that my sister in law recommended. She's an oriental medicine/accupuncture specialist in LA. She recommended a product called Haelan 951. There are many testimonials on their website about amazing results derived from drinking this 8 oz. bottle of fermented soy. It's not cheap -- $50 per bottle, but it might be worth a try to see if it helps your husband any.
Another recommendation is to check with the Block Center www.blockmd.com. They are an integrative treatment center that may be our back up plan if Plan A doesn't work as we hope it will.
I completely understand what you are going through right now. If you're like me, you're a fixer. I wanted a fix for his cancer, but my husband wanted complete and total control over his treatment and that didn't always mean following doctor's orders. It's so frustratring to sit by and not be able to do more. Part of me says it's his disease and he should handle it how he wants, but the other part of me screams you have three children under 20 and you should be doing everything under the sun to fight this monster! Ultimately you will be handling the brunt of this, as will I, and it's a scary and lonely place to be. Just pray and hang onto your friends and family for support. I don't know how anyone survives this without a strong support network.

fredswilma

Sarah B said:

I'm right there with you, sister
My husband was diagnosed Jan.3 and he's 51. Luckily no metastisis but Stage 4 nonetheless, so we're hopeful the chemo radiation will knock it out. This is a long shot, but I'm offering it out if you want to try something that my sister in law recommended. She's an oriental medicine/accupuncture specialist in LA. She recommended a product called Haelan 951. There are many testimonials on their website about amazing results derived from drinking this 8 oz. bottle of fermented soy. It's not cheap -- $50 per bottle, but it might be worth a try to see if it helps your husband any.
Another recommendation is to check with the Block Center www.blockmd.com. They are an integrative treatment center that may be our back up plan if Plan A doesn't work as we hope it will.
I completely understand what you are going through right now. If you're like me, you're a fixer. I wanted a fix for his cancer, but my husband wanted complete and total control over his treatment and that didn't always mean following doctor's orders. It's so frustratring to sit by and not be able to do more. Part of me says it's his disease and he should handle it how he wants, but the other part of me screams you have three children under 20 and you should be doing everything under the sun to fight this monster! Ultimately you will be handling the brunt of this, as will I, and it's a scary and lonely place to be. Just pray and hang onto your friends and family for support. I don't know how anyone survives this without a strong support network.

Hi how many of us are out there
My husband is 45, he was diagnosed in August 2010 at stage 4, the frustration of not being able to fix this monster is huge I scour the internet, for anything that even remotely sounds like it could work, i think it is great to try different approaches, however if it sounds to good to be true well you know the rest, we have had a suggestion with regards to Hydrogen Peroxide as being a healer, has anybody else been tempted by this?. Both your husbands sound like mine so stubborn, so willing everthing to be normal, but normal left along time ago. We to have three children all under 14years, so I to scream inside please fight for them, I know he is trying but yes it is a lonely place to be. Just wanted you to know you are not alone and this site is great for inspiration and down to earth advice, even if it is something you don't want to hear.

CowboysGirl

fredswilma said:

Hi how many of us are out there
My husband is 45, he was diagnosed in August 2010 at stage 4, the frustration of not being able to fix this monster is huge I scour the internet, for anything that even remotely sounds like it could work, i think it is great to try different approaches, however if it sounds to good to be true well you know the rest, we have had a suggestion with regards to Hydrogen Peroxide as being a healer, has anybody else been tempted by this?. Both your husbands sound like mine so stubborn, so willing everthing to be normal, but normal left along time ago. We to have three children all under 14years, so I to scream inside please fight for them, I know he is trying but yes it is a lonely place to be. Just wanted you to know you are not alone and this site is great for inspiration and down to earth advice, even if it is something you don't want to hear.

Thank you SarahB & FredsWilma
It's always gratifying to feel like someone understands what you are going through, and i will keep both of you and your families in my thoughts, and add you to my prayer tree outside. (I'll take a picture!)

I have wondered what alternative therapies there may be out there. Dr. B's nurses are all pretty cool with us trying different things-they just ask we let them know so they know for safety reasons. I will look up both suggestions, so thank you!

And yes, i am SO very grateful for the people on this forum. They are providing their fellow peeps an invaluable gift by sharing experiences and wisdom.

peace to all~xoxo

Unknown

CowboysGirl said:

Thank you SarahB & FredsWilma
It's always gratifying to feel like someone understands what you are going through, and i will keep both of you and your families in my thoughts, and add you to my prayer tree outside. (I'll take a picture!)

I have wondered what alternative therapies there may be out there. Dr. B's nurses are all pretty cool with us trying different things-they just ask we let them know so they know for safety reasons. I will look up both suggestions, so thank you!

And yes, i am SO very grateful for the people on this forum. They are providing their fellow peeps an invaluable gift by sharing experiences and wisdom.

peace to all~xoxo

This comment has been removed by the Moderator

Unknown

This comment has been removed by the Moderator

Sarah B

fredswilma said:

Hi how many of us are out there
My husband is 45, he was diagnosed in August 2010 at stage 4, the frustration of not being able to fix this monster is huge I scour the internet, for anything that even remotely sounds like it could work, i think it is great to try different approaches, however if it sounds to good to be true well you know the rest, we have had a suggestion with regards to Hydrogen Peroxide as being a healer, has anybody else been tempted by this?. Both your husbands sound like mine so stubborn, so willing everthing to be normal, but normal left along time ago. We to have three children all under 14years, so I to scream inside please fight for them, I know he is trying but yes it is a lonely place to be. Just wanted you to know you are not alone and this site is great for inspiration and down to earth advice, even if it is something you don't want to hear.

Alternative treatments
My mother in law tried hydrogen peroxide IVs and IPT to treat her lung met to brain cancer a few years ago. The hydrogen peroxide gave her a small energy boost, but nothing more and the IPT, in my humble opinion, is a crock. They inject you with insulin to the point of almost induced insulin shock and then dose you with glucose laced with a small dose of chemo. The theory is that you can specifically target the "starved" cancer cells as they gobble up the glucose along with the chemo. After 12 months of this and only a worsening condition and spreading tumors, it didn't live up to the theory. You have to have someone highly trained doing this because knowing when to stop the insulin injections prior to inducing shock isn't for the meek. I would avoid these treatments.
And as a follow up to the Haelen 951 at $50/bottle, I wouldn't recommend it unless nothing else worked. We didn't choose to go down that road due to expense, but agreed that as a last resort we would try it.

CowboysGirl

unknown said:

This comment has been removed by the Moderator

Thank you all & update
I appreciate everyone's offers of support, advice and opinions based on personal experiences. This place is such a comfort to me. I'm used to being sort of semi private, and this is a humbling experience.

We went to see the Chemo doc yesterday and found him shocked that Cowboy does indeed test positive for HER 2 genome, so he is a candidate for Herceptin. Hoorah! Since it is an antibody and not a chemo it doesn't worry Cowboy as much-although it is only effective when used in conjunction with a chemo. BUT one of the approved chemo types is Xeloda/Flouracil/5FU whatever we call it which is the same thing we have here at home in pill form that Cowboy has yet to take!

BUT he is warming to the idea. Our doc ASSURES us this is nothing like the EOX regimen that made Cowboy so sick; that most people name the main side effect as having some (how do i out this delicately) loose bowels movements type issues, but it is manageable and won't knock him down like last month's chemo treatment did. So I am supposed to encourage Cowboy to try the pill before 4/26 when the first Herceptin/Xeloda IV treatment takes place.

He also gave him a prescription for metoclopramide for help with appetite/nausea/moving things through the system --it certainly seemed to help last night! He ate a hamburger (no bun) and french fries!!

Sherri, thank you for the information re: fish oil, i will give that a go since it seems like an immediate access kinda thing He does not want to take the stool softeners but i can get him to do milk of magnesia every couple days..hopefully the xeloda will help with that???

William Marshall sir, i cant see your email right now but i can tell you i appreciate the info-and the title gave me the first ear to ear grin i have had in awhile!!

better go see what my bucking bronco is up to right now-peace to all!!

xoxo rhonda