O/T Need help with problem with DH

livesstrong

Hi Ladies – I need your help. This situation has been going on for some weeks now and I just don’t know how to handle it anymore.

My DH, Bill, had Non-Hodgkin’s Lymphoma 7 years ago next month. As we are all aware, it was not an easy time. He went thru 7 months of chemo including a once a month in-hospital treatment. To make a long story short, 7 years later he is cancer free.

After treatment he had a hard time believing that the cancer would not come back, but as the years went on it did get a little better. Until about a month ago. He read an article in the New York Times about how some lymphoma patients were denied a specific treatment based purely on cost. (I know unbelievable, right)? Anyway, the article mentioned that with NHL you are never truly in remission and that the cancer will more then likely come back. The article noted a 10 year term. So now DH is totally obsessing over this. He truly believes our oncologist lied to him (he was told by the doctor that he didn’t ever see it coming back) and that he only has a few more years to live. I tried over and over to tell him to not believe everything you read, the ocn knows best etc, etc. but he just continues to be depressed. He’s been on Prozac for awhile but I’m beginning to think he needs some other antidepressant. He hasn’t been sleeping and has very little energy.

I just don’t know what to do or say anymore. Any advice out there would be appreciated.

Thanks for listening to my tale of woe,

Valerie

Bugs

Valerie,
Has he discussed this with his onc? Or, if he wouldn't believe what his onc said..maybe see a new one?

{{hugs}}

Bugs

nosurrender

I just looked at the National Institute of Health's stats on NHL and they measure patients in COMPLETE RESPONSE as well as patients who have recurrances years later.

I also saw that report your husband saw... it was a study of a promising new drug that couldn't get off the platform for clinical trials because it was so costly. The way is was written was to sound like everyone who ever had NHL would die without this drug. I think it was slanted to get people's attention...unfortunately I think it got the attention of everyone who ever had NHL and scared the crap out of them!

It is hard to be afraid of cancer's constant looming presence as we all know. And sometimes it becomes a viscous cycle.

He needs to hear from someone whose medical knowledge he respects and then take that leap of faith that we all do in knowing that we did everything we possibly could do to cure ourselves and we can't live like it didn't work.

Because if we live like it is just a matter of time before IT comes back then we rob ourselves of good and happy years.
Live like it WON'T come back and if, God forbid, it does, then at least you have banked good times without living in the constant fear of the disease.

Please tell your husband that SOMEONE has to make up the GOOD SIDE of the stats. Why can't he be on the side that wins?

My neighbor is a 25 YEAR NHL survivor.

I hope you both can work things out.
g

BlindedByScience

Hi, Valerie,

I'm not sure of the drugs you're referencing, but Zevalin and Bexxar are the two that I read about in the NYT recently. They are difficult to handle, so are usually administered by large academic hospitals rather than the local oncologist.

One thing for your husband to consider is that the patients identified in the article were all late-stage. These drugs may still be an option for him if he has a recurrence. Granted, the article said the companies making them were considering dropping them because not enough patients were getting their treatment, but as NS said--this article clearly looks like a public service announcement/marketing pitch. They tell the readers that patients can get the drugs if they know to ask for them. And put up a fight if necessary. You can bet the sales of the two drugs are going to go up this year!


This link will only work for a short time, so anyone who wants to read the article needs to download it quickly:
http://www.nytimes.com/2007/07/14/health...a74&ei=5070

An excerpt:
While Bexxar and Zevalin help many patients, only a minority become cancer-free for many years. But clinical trials indicate that they are as good as or better than other treatments. When the drugs were approved, analysts expected they would be used widely.

But the drugs have run into an obstacle that so far has been impassable. Because they are radioactive, they are almost always administered in hospitals, not doctors’ offices. As a result, doctors are not paid by Medicare and private insurers for prescribing them, as they are when they give patients a more common treatment, chemotherapy.

In addition, most oncologists outside academic hospitals treat many different cancers and may be only vaguely familiar with the drugs, said Dr. Andrew D. Zelenetz, chief of the lymphoma service at Memorial Sloan-Kettering Cancer Center. “There are a number of barriers,” Dr. Zelenetz said.

****
I find the uncertainty of a 'cure' to be one of the most difficult aspects of having early stage bc. I hope your husband finds a good way of navigating this new awareness.

Anonymous

Aren't we all in the same boat your husband feels he's in. There is NO cure for breast cancer.

When his oncologist says "he didn’t ever see it coming back" I don't think he was lying. I don't see where his onc said "it will never come back."

Your DH needs to see a therapist. I know -- easier said than done. But if he's not sleeping does he not know the stress he's putting on his body?

We all know how dreadful this feeling of not knowing is. I feel for him.

BBS and NS explained their view on the article very well. Perhaps you could share this with your DH.

Good luck.
Shirley

Emelee26

I don't have any better advice, but I'm thinking of you..here's hugs for you

livesstrong

Ladies - thank you all so much for your thoughts and support.

His next ocn appointment is in Sept. and he told me he is going to ask him again what his odds are. I told him to call him now, but I know he won't do it.

G - I agree. The artice was slanted - typical for the NYT's. But you are right, I have to try and convince him to live in the "NOW". But how do you do that without it looking like I agree with what he is saying?

Shirley - I know he needs therapy but he is such a man!! Stubborn and macho. He's tired all the time and remembers that was how he felt when he first got sick so naturally he assumes it might be coming back. I tell him he's not sleeping because of the stress he is putting himself thru and he has no response. Drives me crazy!!

Emelee26 - thanks so much, the pic was way too cute. Made me smile!!

Thanks again everyone, I'll keep you posted.

Valerie

NoH8

I'm going to hit on the therapy thing again.
I think your husband could benefit from therapy. Cognitive therapy, would teach him how to turn negative thoughts around, although other modalities can be equally helpful. Does his oncologist have a therapist or social worker in the practice? Maybe if you two went together it would help encourage him. If he still won't budge on the therapy issue, why not go yourself-- if nothing else it might give you coping strategies to help yourself and both of you.

iodine

I'll second that "go yourself" thing. I found it very helpful when my dh wouldn't go.

livesstrong

When my DH was in treatment he did go to a therapist and it helped. But he didn't keep it up. I finally mentioned to him today that I thought he shoud give her a call and he told me he had been thinking about it!! I was relieved. Now all I have to do is convince him to make the call.

Thanks so much ladies for your thoughts and concern. Its really nice to know that I can always come here for help!!

Hugs,
Valerie

NoH8

That's great to hear Val!