Need Advice - DH Is Very Sick After Latest Chemo - Update

[Val*pal]

Hi, everyone. I really need some feedback on my husband's condition. I know none of us are doctors, but for those of you who have been through the mill like DH perhaps you can offer some opinions.

As you can see below, my DH is 65, has Stage IVb cancer, and has been on his third series of chemo since October. He has not been doing very well since late November, and there was some progression of the cancer while he was on Erbitux, so it was eliminated. The oncologist went back to Avastin, but he experienced a possible partial intestinal blockage in January, so the doc stopped the Avastin since it can cause perforations. Since early Feb, DH has been on 5-FU and Oxi. Currently, he does have a peritoneal tumor that is pressing into his small intestine.

Since his one week hospitalization in late January for the possible obstruction, my husband has been having a harder and harder time withstanding the effects of his every two weeks chemo. He has lost at least 18 pounds since that time and has grown progressively weaker. Before his last chemo last Thursday (4/17), I had the oncologist consulted because I felt he wasn't strong enough for another infusion. However, since his bloodwork appeared decent, the oncologist suggested he go ahead, and he wanted to. This was DH's off-week from seeing the oncologist and he declined to see her in her office that day when she offered to look at him. The doc did lower the dosage of Oxi. Since that infusion, he has not been able to eat and even drinking is an effort. He has almost no energy to speak of. I am monitoring him for dehydration.

Obviously, I will probably take him to the ER today if he has shown no improvement, but I was wondering if anyone has had similar experiences or if you can offer your opinion, particulary those of you on chemo.

My gut tells me he is too weak for chemo right now, and I probably should have stood my ground last Thursday. Many of the desk people at the Cancer Center immediately saw that he was weak and kind of out of it and expressed concern.

Should I really take a stand or are the chemo treatments more important at this time than anything else?

[vickitwo]

This dang cancer can put you between a rock and a hard spot. If the oncologist's office is opened today, I would try to see if they can see you today.

[NWgirl]

What does the oncologist say as justification for continuing chemo at this point? I know my chemo has been withheld for much less than how you describe your husbands condition. Just wondering what the rationale is. It is within his power to say he wants a break, even if it's just for a week or two. Maybe do infusions every 3 weeks?

Oxaliplatin is a hard drug to tolerate. Medical marijuana help many people with stimulating their appetite, nausea and many other things (sleep aid, anxiety, etc). Perhaps that might help if you have access to it.

[skypup]

Before his last chemo last Thursday (4/17), I had the oncologist consulted because I felt he wasn't strong enough for another infusion. However, since his bloodwork appeared decent, the oncologist suggested he go ahead, and he wanted to.

Herein lies the crux of the matter--that he wanted to. This makes me wonder if he understands what chemo can and can't do for us at our later stages. Do you know if he and his onc have had a straight-out real conversation about his options? Is he open to this?

[Val*pal]

Vicki: Thanks for your concern. This IS being between a rock and a hard place. He's sick if he does the chemo and sick if he doesn't. And I'm between a rock and a hard place because I know that my husband's health is declining faster and faster but I am afraid to upset him with the opinion that this may be the time to possibly reduce the chemo or stop it. I have a call in to the oncologist and/or her assistant.

NWGirl: Thanks so much for your concern and comments. It's my impression that the doctor felt that since nothing was amiss with his bloodwork, that he should do the treatment if he wanted to. The nurse who triaged him when other cancer center personnel told her he wasn't doing well sort of glimpsed him when he had been made comfortable in a bed - she didn't see him lurching about. And he always says he's "fine."

My husband doesn't want a break, he says, until July, so he's fighting his hardest to keep up the treatments until then. He knows that he can ask for a break. I've talked to him about medical maijunana but he is not interested, he says. He's a wonderful man, but he is not open to a lot of "new" ideas.

Skypup: I think you've hit the nail on the head. My DH wants to "fight", but he is still in denial, in my opinion. Several times he has asked the oncologist why the chemo is not killing off the mets, and several times she has explained that chemo can't kill them off, only hopefully stablize them. She has never offered a time frame for his prognosis, and he hasn't asked. I'm the one who asks the specific questions. At least twice I've told him the same thing as the doctor when he asks me: chemo cannot cure. It's taken all my courage to do that, but I won't lie to him. He has not requested much information about his condition, though he knows it's bad. I'm afraid to rock his boat by trying to have a hard conversation with him about the outlook. I know things are tough enough for him without all vestige of hope being taken away. However, this may be the time to get him prepared for such a conversation. My sister has suggested I talk to one of the social workers who can help advise. Ugh. Right now I am just afraid to frighten him when is so fragile. His next CT-scan is set for early June.

Skypup, as a cancer patient yourself, what do you advise? Should I attempt to bring reality more in to focus for him? I know his oncologist can probably help with this as well, but I find it hard to bring this up in front of him, and I'm always hesitant to talk in private with the doctor since I feel it's going behind his back. I know I'm a whimp.

[daisydaisy]

Dear Val*pal,

I just wanted to say I am so sorry about what's happening. Your DH is in my thoughts and prayers. Regarding his being in denial...well, all people are different. I think he realizes how serious his condition is, but maybe that's some kind of his psychological defense - not asking questions, hoping for the best. I don't know how he would handle it, if one puts bluntly his prognosis to him. Regarding chemo, I am not at all an expert, but somebody above suggested having extended breaks in between chemo sessions - I think your DH may accept it, and it should be easier on him. This way he will still be fighting. I wish something changes to the better for him soon. Good luck to you both!

[orcasres]

I was lucky to be a Stage II, but FOLFOX hit me really hard starting about the 4th treatment. I lost 25 pounds and could barely eat anything because of the metallic taste in my mouth. They did skip a treatment once because my neutrophils were too low and they started to use neupogen injections to keep my counts up for treatment 7 and beyond. Everyone tried to keep me on schedule, because every trip for treatment involved a 20 hour day (we live on an island) but the nurses actually said that the one time my counts were so low, even if the bloodwork had come back OK, they could see I was in no shape for an infusion, and I had to agree they were right.

So for your husband, they are probably keeping his infusions coming on schedule because they sense that he really wants them. I feel like the weight of all of this is on your shoulders, and you need to enlist help from the oncologist to help your husband make realistic decisions about his treatment.

I am thinking about you. I wish I had more to offer for advice.

Lois

PS. You're certainly no wimp. Just a loving spouse.

[Val*pal]

Thanks, Daisy and Lois, for your support. It is hard to know what to do, and since I'm not a doctor, I doubt myself and my observations a lot. However, I do think DH needs a longer period of time to recover from the chemo. What's the point if the in between time is taken up just getting through each day by sleeping and feeling exhausted in spite of the sleep? He had Folfox one other time and still managed to recover from the infusion by the 5th day or so, but this time is totally different.

[Patience]

I can relate the to problem of watching a loved one get weaker and weaker, yet the "hope" offered by the oncologist to pursue chemo being dangled out there. Who are we, the caretakers, to be the one to dampen that hope? It is a no-win situation, if you ask me.

I see the prospect offered by unrealistic hope as being a barrier to making a course change heading towards Hospice (since you cannot do chemo and Hospice at the same time). My husband continues to decline, yet still is contemplating more chemo, all the while not being able to avail himself of the comfort (pain) control and expertise offered by Hospice services. Since it is the patient's decision, I'm not one to pressure him at all to make the same choices that I think I'd make in the same circumstance ... the patient has the final say. But it is a frustrating and difficult situation.

Good luck to your husband, and to you the caretaker. I hope things sort out soon for him in decision making.

[Maia]

My DH wants to "fight", but he is still in denial, in my opinion. Several times he has asked the oncologist why the chemo is not killing off the mets, and several times she has explained that chemo can't kill them off, only hopefully stablize them. She has never offered a time frame for his prognosis, and he hasn't asked. I'm the one who asks the specific questions. At least twice I've told him the same thing as the doctor when he asks me: chemo cannot cure. It's taken all my courage to do that, but I won't lie to him. He has not requested much information about his condition, though he knows it's bad. I'm afraid to rock his boat by trying to have a hard conversation with him about the outlook. I know things are tough enough for him without all vestige of hope being taken away.

Oh Val... I feel your pain. Few powers are as strong as denial. Of course the doctor won't offer a time frame is he doesn't ask. Wish I'd have words of wisdom, or advice about what to do... I have not, I can't do it. But please know that I do feel your pain and I'm hugging you in my heart. ((hugs))

[Laurettas]

Oh, Val, my heart hurts for you. I had a very similar situation with my husband and it is so hard to see them hurting unnecessarily and not be able to do anything about it. I so wish that the oncologists would be more forthright with the patient and help them to understand the reality of what treatment can and cannot do. I hope that you are able to find a way to help your husband improve his quality of life for as long as possible.

[skypup]

Skypup, as a cancer patient yourself, what do you advise? Should I attempt to bring reality more in to focus for him? I know his oncologist can probably help with this as well, but I find it hard to bring this up in front of him, and I'm always hesitant to talk in private with the doctor since I feel it's going behind his back. I know I'm a whimp.

First things first, you are no wimp. You are an incredible partner!
I am glad to know your oncologist has been honest with your husband. If he doesn't internalize it, then I think (since you asked) the thing for you to do is support him in handling this sucky disease the way he has to. If that is chemo-ing himself into really bad shape, I think your support is what will help him most--all the while keeping an eagle eye out for when he finally says he may want a break. I am far on the other side of this chemo thing from your husband, but I know I don't want my friends and family encouraging me to take more aggressive chemo. This sure leaves you in a difficult position! I'm sorry, and I thank you for being a caretaker.
All that said about what to do for your husband, a little private heart-to-heart with the oncologist might not be a bad idea. Perhaps she needs to know the family is open to less aggressive treatment? If you can ask your husband if he minds if you talk to her without him to help yourself understand some things, that'd be great. If not, I say go have that talk anyway. Your heart is soooo in the right place!

[vilca11]

Hi Val,

I have one suggestion. I am not sure I can make this suggestion on the forum, but this is absolutely harmless simple thing that can help and you do need help in such a dare situation.

I do believe that chemo must be stopped, it is not going to prolong his life at this point, just going to finish him up and soon. But there is one thing that hopefully could put him in a much better quality of life, painless and functional mode - it is Lyposome Vit C. That is what I would do myself. I personally know people who were in similar condition and were able to get back to functioning and live normal life up to 1mo before death - living about 1-1.5years more - just on that. You do not have to buy much right now, get a couple boxes on Internet and see how he feels after a week or two after getting 6grams of it a day. If good, buy more. Start with 3grams for a couple days, then 4, then 5, then 6. After a while, like 2-3mo, you likely would be increasing dose, but that is when you see that he needs more to have an effect.

You can look up studies on Vit C IVs, how they prolong lives, improve quality of life and increase effect of chemo. But IVs are costly and hard to find places that do them in the US. They do 100grams of IVs in good centers, but out of 100grams body takes only 6grams, the rest is expelled. What is good about Lyposome Vit C - you take 6 grams and all 6 grams are properly accepted by your body. It does not taste good (it is like gel, you squeeze it from the little pokets), though, but people take it with the juice, usually. Lots of people, including me, always have Lyposome Vit C at home just for the common cold - take 3grams for 2 days and you will have no cold.

The only thing is that when you start it, you can't stop it - he will be back to square one in 2 weeks after stopping. And with time the dose will need to be increased to have an effect (friend of mine a month before he died used 18 grams a day). That is just two downsides to this.

I do not know how to pursuade your husband to do the above instead of chemo. But I am very sure that if it is not too late, this should put him back on his feet.

Hang in. Vilca

[vilca11]

Val, how are things, what did you decide to do?
Hugs, Vilca

[Val*pal]

Thanks for all the expressions of support, everyone. It is so wonderful to get such helpful, kind responses.

Fortunately, my husband has improved a bit over the last day or two. His oncologist lowered the dosage for his last chemo infusion this past Thursday, and though he had a rough couple of days immediately after chemo, he actually got up and did a few things today. I 'll keep my fingers crossed that he continues to get stronger before his next chemo on May 1.

Basically, after some research, I realized that my DH needs to call the shots. I think this is what NWGirl is saying as well. Though he is definitely in fluctuating states of denial, he needs to handle this the way he sees fit. If he feels the chemo is important, then so be it. Obviously, if he gets as sick as he was a week ago, I'll still advocate for at least an extra week respite from chemo, but for now he is content with the treatment. He keeps telling me repeatedly that he is "used" to it, though I can't imagine how anyone can acclimate to it, especially when someone is so weak, but that's how he feels.

I did some research last night about how to deal with denial in terminally ill patients. What I discovered is that about 80% of colon cancer patients operate with varying degrees of denial, while only about 20% are able to face the facts head on. The current belief in health centers today is that denial is a functional coping mechanism and there is some evidence that it appears to extend lives since there is less stress and anxiety. It's an adaptive mechanism that allows people to function. The only time when denial is not good is when it causes the patient to ignore medical advice and not get treatment. However, most mentally sound individuals accept and continue treatment even if they are experiencing high levels of denial.

In 2012, research at Dana Farber revealed that CRC patients experience the highest levels of denial as compared to the terminally ill with other forms of cancer. Denial in that study was based on a patient's false belief that chemo can cure when it is given to those with metastatic Stage 4. Even though doctors supposedly make it clear that with the disease progression that widespread, the only use for chemo is to keep cancer symptoms in check for as long as possible and to extend life for some months, people in denial continue to believe it is curative. That is exactly where my husband is at. Though I've sat with him when the oncologist has flat out told him that exact thing, he continues to believe chemo may cure him. The Dana-Farber article also mentioned that Stage 4 patients have been known to deny being ill after chemo infusions since they are afraid the treatments will stop and sometimes get very ill because they won't share this necessary info with the doctors. They have also been known to carry weights in their clothing when they are weighed so that the treatments won't stop due to excessive weight loss. (May 1st I'm checking my DH's pockets! )

I also learned that the prevailing opinion at this time is to not disabuse a terminally ill patient about their unwillingness to face facts; however, caregivers and health professionals should not consciously encourage denial either. For example, if the patient asks something directly about his/her treatment, then one should be honest in response though in a humane way.

I'm sorry I've gone on so long about this, but I think it is interesting. Lord knows that I exist in denial about many things (my weight for one thing!), and I like living in that world, so why should I tinker with my husband's?

Also, the articles I read stated that denial is dynamic in that it can change minute-to-minute or day-to-day. Caregivers need to listen carefully and be there to support their loved ones. The worst thing to do is to withdraw at a time when they are most needed.

I think I was feeling conflicted because in part I felt I might be negligent to allow him to continue treatment when the side effects have been so bad, but the choice is really the patient's and the health care team. I will continue to advocate for his best interests, but I shouldn't get so frustrated that my DH is allowing himself to suffer. He is doing what is best for him.