Caregiver needing an ear

[blakeswife]

Hi Friends. I've been lurking on this site for almost 2 years so I consider you all friends. I read the site almost daily to see how everyone is doing and to LEARN from all your experiences. I truly appreciate the information you all share. It's been invaluable to me.

As you can see by my signature, a recurrence has been detected in my husband. He has mets to his peritoneum & messentary. We're told we have some time before he has to start chemo (folfiri+avastin) and to try to live life to the fullest... He's not interested in HIPEC because of the travel involved and he just has the "whatever will be, will be" attitude. I've read about some great survivor stories (scottg, hawaii, jen prays) but I've also read about some not-so-good outcomes. Makes you wonder if you might decrease the time you actually have... I completely understand some people may not want to do anything and just live life! Right now everything is so raw.... Everytime someone crys, he thinks we're silly. Probably denial for now... scared for when it "hits"

btw, he also had low cea. was 3.47 at dx, 1.2 after surgery, 1.8, 2.1, 2.6, 2.3, 4.7 when the CT found 4 suspected peritoneal mets. Pet could not confirm peri mets but found 2 "hot" tumors in messentary in lower abdomen 1.4 & 1.6 cm. CEA just went to 5.8 within 1 month. Onc says we should probably re-scan if it hits 10 before scheduled scan in October.

Anyway, I just wanted to throw our story out there.... Can you guys please share any ideas or thoughts? How bad do you think this will get? He feels fine now.

[girlnextdoor]

Hi Blakeswife,

I'm a caregiver also. My husband had a recurrence after one year with mets to the lungs and lymph nodes. We just started chemo in June. He feels fine. I was where you are a few months ago: stunned, crying a lot.

His CEA has been normal all of this time. Seems that is not a good predictor for us.

I know some people on here have had HIPEC with good results. They can speak to that.

It sounds like your husband is still trying to process this recurrence. It is his decision whether to go for HIPEC or just chemo but HECK it's our job to help sway and convince them to the best decision. Unfortunately, I find myself to be the fighter in our scenario while my husband takes a back seat and lets people take care of him. This is not the demeanor of a survivor.

I'm reading a book which I MUST get him to read as it could be a lifesaver. It's called "Love, Medicine and Miracles" by Bernie Siegel. It's about the 5% that do survive and what their personalities, way of life, life outlook, etc. In other words, what makes them different. So far, I have found that survivors are their own best advocates and now I'm trying to inspire my husband to be the same.

I hope this helps. You'll be in my prayers.

Lisa

BTW, I can't see your signature so I didn't have too many details to go by except what you wrote.

[blakeswife]

Here's the signature.... Not sure what I did wrong.

Thanks for any and all input.

Kathy

[John603]

Blakeswife,

My CT Scan in April picked up a recurrence and my oncologist told me that I had time before I had to go back on chemo, but I started back on chemo in a couple of weeks and it only took that long because my doctor had to get me a slot at his office.
Every day your husband will have more cancer cells in his body so the sooner he is on chemo the quicker the number of cells will be knocked down. I find the Folfiri + Avastin a very easy regimen compared to Folfox. Well, at least until I had a blood clot last week. You may want to ask your doctor about taking a daily aspirin to prevent blood clots while on Avastin and to reduce the amount of future metastases.

[Terry]

As far as how he will feel well, he was already on folfox and avastin so that's how he will feel if they put him back on that, if it's folfori plus avastin I can't tell you because I haven't been on the Ironitecan (sp?) but I hear the side effects aren't as bad. If your looking for end of life the chemo may get rid of it so that seems a little premature.

I'm sorry to have to welcome you to this site but welcome! I pray his chemo works to get rid of the cancer.

God Bless you and your husband.
Terry

[blakeswife]

Thanks for the input so far... I really appreciate it. The new chemo will be folfiri w/avastin.

The docs say that we've lost our chance for a cure but can gain time with chemo. Without HIPEC, they may be right... We're looking for quality of life then quantity of life; in that order.

Thanks everyone

[Guest T]

Hi Blakeswife,

I totally understand what you are dealing with. My husband sounds allot like yours, the macho type. But I know he is also very worried about what will happen to him. He has gotten all of his affairs in order so he has nothing to worry about. I guess that should be everyone's first step.

His diagnosis was stage 3 rectal April 2006. He had surgery first (his onc was worried about an obstruction), LAR never needed an ostomy. Then he had 6 weeks of radiation along with xeloda. Then folfox full term I think that is six months. He was NED for almost 3 years. This past Feb. something showed on his PET but his CEA was the same at 5.1, normal. He had 2 biopsy's both came back neg. With the normal CEA and 2 neg. biopsy's we had no choice but to wait 3 mos and re-do the PET. Which we did in May. The area showed up bigger and brighter then the last PET. So we had another biopsy this one came back possitive. We were very discouraged, my husband did everything by the book and he still had a recurrence. Worse news this one came back outside the rectal wall and attached itself to the tailbone. We went to the best surgeon at the big cancer center near our house. The bottom line is, the surgery is very risky and we still may not be able to get all of the cancer. Apparently, there is no way to see how far in the spine the cancer has spread without cutting the tailbone off and looking at the tailbone under a microscope. My husband decided just to do chemo. I don't think he will ever go for the surgery. I have tried to influence that by pusshing him to try the surgery after the chemo. So that is still an open subject. He started Folfox with Avastin in June he has suffered greatly. Lost about 37 ibs. and just feels horrible the whole time he has no good days with this protocol. Thats my story so far. I know it doesent help you much but hopefully just knowing allot of us are out there is a help.

Good Luck!!!!
Love Toni

[hannahw]

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[Guest T]

I agree with Hannaw. I would never try to keep someone suffering to keep them alive for just a little longer. But in my situation it is my husbands first recurrence. Knowing that surgery is the only hope for a cure I would say I do give him a nudge, just to look at the possibilities. Only because I read of someone on another post whom had a cousin that had his tailbone removed because of the same type of reccurence that my husband has. He is still NED 14 years later. Of course saying that is easier then going though the surgery and the after affects. But I felt I needed to let him know about that man. My husband also knows I stand behind him 1000% at what ever he ever decides. But if he did not go though the surgery and I did not try to show him the positive possibilities I would never forgive myself. I think in a caregivers position especially a wife you need to inform yourself and your husband of all of the treatment possibilities and let them make the finale decission of course, but knowledge is power. So I guess I'm not trying to presuade him into anything as much as I'm trying to make sure he understand all of his options.

Good Luck!!

Toni

[Terry]

GuestT, is there any way to have that person that had the surgery and is still alive talk to your husband and tell him about the experience?

[Guest T]

I'm not sure Terry. He does not post on the forum his cousin does. I did pm her and speak to her she did not offer that up.I know some people are very private and just thought that he may not want to talk about it.I did tell my husband about the experience this man had with the surgery. I know his outcome may not be my husbands outcome, I just wanted him to know it is a possibility. If the Folfox w/ Avastin does the job to shrink the tumor maybe we can see if the surgery is a better option at that time.

Toni

[hannahw]

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[MonaL]

Hannahw, great posts. And great point about watching for depression, as that can alter the decision making process.

It's tough making the distinction between your own will to fight, and that of the person that actually has the cancer.

I think it's extremely helpful to help them do the research and understand the possible outcomes, but those are decisions that they have to make themselves.

Blakeswife, do be sure that you take care of you emotional and psychological needs too.

[hannahw]

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[PGLGreg]

I think than hannahw's posting and others', proposing to let patients "die peacefully", without treatment, do not give recognition to the possibility that a death without treatment may not be peaceful.