What's Next? Wife has NSCLC & multiple brain mets

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Ten days ago, I took my wife (61) of 39 years to the ER for a possible concussion due to a fall at home. That wasn't it at all! After 3 days of CTs, MRI, blood tests and biopses, we got the really bad news - multiple brain mets and NSCLC. The lung cancer by itself would be stage 1 or 2, but there are multiple brain mets. The biggest is 5.5 cm in her cerebellum but due to the number of lesions, Gamma Knife is not an option. The specialists and literature (that I've found online) says she has anywhere from a few weeks to a few months to live. She's taking 4 mg of dexamethasone 3x daily which I'm told is a low dose. WHRT was suggested but the oncologist said that would only buy her a little more time, not be a cure. And for my wife, the quality of her remaining time is more important than the amount. Our daughter is grown with teenagers of her own; we've travelled and had a great life together, so as much as it devastates me, I'll honor her wish to let nature take its course. Her only observable symptoms at the moment are a slight memory loss and tiredness in the afternoon. My question is this - what physical symptoms is she likely to suffer as the disease progresses in her brain? The kindness of a reply will be appreciated.
The boy who married the girl next door.

brainman

RLW1, I am very sorry to hear about your wife's cancer. No, her prognosis is not good. Most people with NSCLC Grade IV do not live more than 2 years after first diagnosis. However, as I always tell people, if MY doctors had been right about MY chances, I would have died at least 5 years ago. I do like to know my prognosis just so that I can prioritize what I still want to do in this life. However, after that is done, I just try to forget it and take one day at a time. I know that is easier said than done and my brain cancer was a less aggressive cancer than your wife's.

You said "WHRT". Did you mean "WBRT" (Whole Brain Radiation Therapy)? If that is the case, I have a comment... if that is not what you are talking about, the what does it mean?

The decision to use or not to use WBRT is not an easy on... especially in your wife's case. Obviously, the major goal for most WBRT is to prolong the life of the patient. However, in some cases (and I think your wife may be one of these), WBRT is also used to help the quality of life. It can go in either direction and there are no guarantees. However, if the radiation is able to at least control those brain mets, your wife could not only experience a few more months of life but also have a better quality of life. Talk to her medical team to see what they think about radiations affect on quality of life.

You ask for symptoms you might expect to see... that too is a very complicated question. It all depends on the specific locations of the mets. That is, if one is located in the memory part of her brain, she might have memory problems; if one is in the vision part of the brain, she might start to have vision problems; etceteras. However, in general, she will get weaker and tire more easily. The primary cancer in her lungs will contribute to this too. I wish I could give you more specific information but everyone is just slightly different.

Start keeping a medical journal for your wife. List in it all of her symptoms and your questions for the medical team.

You and your wife are in my thoughts and prayers.
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RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

I did mean WBRT. Sorry. I'm just not with it at the moment. My wife seems to be struggling a bit with remembering things. I guess she's not the only one.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

RLW,

Welcome to this community, but I'm so very sad that you had to find us with this type of diagnosis.

Although my husband also had Stage IV NSCLC, his never went to the brain, so I come with virtually no knowledge of that aspect of this disease. I do know many people who have bought a lot of quality time by doing WBR. It really is up to the person with the cancer as to how they want to approach treatment and we, as spouses, have to fully support their decisions.

It sounds like you have already armed yourself with a great deal of information. That is good -- not only will it help your wife, but it brings a sense of "control" to you in your new role as caregiver.

Although my husband had a large tumor burden and was never cancer-free, he did survive 2 1/2 years and the quality of our life was okay. In the beginning it was pretty darn good, but I'll be honest, it did decline following treatment after treatment. (He was unusual and was able to tolerate huge amounts and line after line of chemotherapy.)

Have they done a biopsy to determine the cell type and differentiation? Both of these can factor into the survival rates. My BIL was diagnosed initially with three brain mets, one was surgically removed and the other two nuked. He went on to live 2 3/4 years and maintained a nice quality of life, even with two different lines of chemo. His tumor burden was pretty low outside of the brain mets. Everyone is so very different, but I wanted to present a few different scenarios for your consideration.

Best of luck in your wife's decision making process and I hope you will post with updates.

PBJ

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

To the Brainman and PBJ, thank you so much for your kind replies. This is all so alien to my experience. Like many guys, I'm a "fixer" - got a problem? I'll fix it. I'm at the top of my game with 5-6 good years ahead of me before retirement. Now I can't "fix it" and the future is far more cloudy. Like most guys, I've relied on my wife to take care of me. Now I must take care of her rather than the other way around. And like many, if not most, guys, I don't have a circle of intimates that I can confide in. So this forum, and kind replies such as yours, are more appreciated than my words can express. Thank you.

ksplat

RLW1

Welcome to the forum. Sorry it's under the cloud of your wife's diagnosis!
Just wanted to let you know how I was touched by the tenderness of your post regarding your wife. You are in my thoughts & prayers.
This Cancerforum reaches out to people all over the world. It is like an intimate community, where we are all members bought together for support, love, comfort, advice & information. This community has been of great support to me since I heard about my Bro's diagnosis of brain cancer earlier this year.
Keep strong with your love & support of your wife. I have read the replies to your post & it would appear that although your wife's illness is serious there are some real positive stories & I pray for a positive future for you both on this "journey".

Cheers, Aussie Angie.
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http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

mommysgirl

Dear RLW1,
I am so sorry to hear of your wife's cancer diagnosis. I just lost my mom on Oct. 23 to NSCLC with brain mets. Although I do not have any specific advice on your situation, I will offer my experience with my mom. My mom was just diagnosed in May after a routine physical with her family doctor. During her exam she mentioned to the doctor that she had been suffering a nagging cough since March. So he ordered a chest x-ray. The next day, I will never forget it, my cell phone rang and it was my mom saying that the doctor's office had called and they wanted her to come in to the office to discuss her chest x-ray results. As a nurse I knew that this was a very bad sign and my heart literally jumped into my throat. Then later came the diagnosis of NSCLC with brain mets. My mom had 1 lesion on her brain but it was of moderate size. The day of her diagnosis my mom was very adament that she was NOT going to have any treatment! She insisted that what time she had left was NOT going to be spent going through treatments that would make her sick and tired, as she knew that there is no cure for this cancer. That decision although changed very rapidly. Just a day or two from hearing the diagnosis she began to have neurological problems as if she had experienced a stroke. Her speech became all gargled, the left side of her face began to droop, and she lost function of her left arm. After speaking with her about radiation to her brain, only to alleviate the symptoms she was having, she agreed to the treatments. After 15 WBRT treatments and high doses of steroids her symptoms went away. She then surprised us all by saying she would try chemo. My mom was on a constant roller coaster. She would almost change her mind on a daily basis as to if she would continue with chemo or not. The most important thing for me was that my mom know that no matter what she decided I would support her 100%. If she wanted treatment fine if she did not, that was fine with me too. It was her life and her body that was going to have to endure the chemo. For the remainder of her life, I tried to focus on spending as much quality time as I could with her, for as a nurse I also knew that each time I left her could be the last time I seen her. Lung cancer is a horrible disease, but it can also be unpredictable. Like PBJ said her husband lived over 2 years. As for what else to expect, my mom's memory, strength and mobility only decreased slowly over the first 3 months, and then the last 2 months it decreased almost on a weekly basis. Another sad truth about cancer is that so many times it is some kind of secondary infection that ends up taking their life, or worse yet no body really knows what happens. My mom was one of those people. One day she just wouldn't really wake up. We took her to the hospital and they could not figure out why she was just "sleeping". She continued to sleep (and have a lot of tests) in the hospital for 5 days. Finally we decided to take her home with hospice and she continued to sleep at home in her own bedroom for almost 4 days, until on the 4th day sometime between 7:25am and 7:30am she just stopped breathing. She was not in any pain and was not suffering at all. Just the way I prayed it would happen. My mom was only 58. I have been trying to keep a close eye on my dad since my mom passed. He is definately suffering from a broken heart. I know he has since returned to work and I think that is really helping him, but I also know that he has visited her grave every day since her burial on Oct. 27. I am very sorry for such a long post, but you will find great support here in this forum as I did. I wish you and your wife only the best. You will be in my prayers. All you can do is love her and support her to the best of your ability.
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RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Mommysgirl,
So far, my wife has experienced "normal" headaches lasting a few minutes, wobbliness and increasing weakness. Her initial complaint a few weeks ago was a temporary impairment to her vision which was enough to stop her from driving. She can't describe the vision problem other than to hold her hands to either side of her head and say her vision "wasn't right." So far though, her vision problem hasn't been every day or all day. That's a blessing since she loves to read. Perhaps due to the decadron, she's got a bigger appetite than anytime in recent years and is holding her weight. She has great days when her mind is sharp. And some not so great days. I guess I'm the one who wants to know what may come next. Your reply gave me some insight into that. For that, thank you.

mommysgirl

Dear RLW1
My mom often complained of vision problems. She would say she could see a whole bunch of black "floaty" things in her peripheral vision. We never really new what caused it. Maybe the decadron, the cancer, or the WBRT. Oh and the decadron!! My mom gained almost 50 pounds back after they started her on the decadron every day. Of course some of it was the swelling that steroids cause, but her appetite was furocious. Some of my funniest memories of my mom will be finding her sitting in the middle of her bed with a half gallon of ice cream and polishing off the whole thing. Or eating a half box of lucky charms cereal at one sitting. I do not know what your situation is at home, but one of the things we did with my mom right away was get her a lifeline bracelet to wear so that she could just push the buttom if something happened or she needed help. My mom remained pretty high functioning as far as taking care of herself and being able to be home alone. She never needed 24 hour supervision until those last 8 days that she was "sleeping". So my dad and the rest of the family still worked. But we felt better her having the lifeline just in case. Has she thought any more about having treatment? She is in my thoughts.
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mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Dear Mommysgirl,
Yesterday was not a "good day." My wife didn't sleep much and woke at 4a with a severe headache in the lower cerebellum area that lasted 5 hrs before tapering off. She was lethargic and the vision "thing" bad. She could focus with either eye, but with both open, couldn't read or watch tv. Scared both of us. Doctor upped her decadron to 24 mg in the afternoon. This morning, her vision was back to ok. Did your mom get "assertive" as well as hungry on the decadron? (By the way, Lucky Charms and ice cream seem to be universal favorites). My wife has always spoken her mind but now more so! Occasionally jabbers. And no, she's not changed her mind on the WBRT. I'm still working a few hours a day but am mostly burning up accrued leave until that runs out. I really appreciate hearing your experiences with your mom and your thoughts.

mommysgirl

Dear RLW1
Assertive is a very nice way to put it. It will not be uncommon for her physician to change the dosages of her decadron throughout this process. And unfortunately steroids have that side affect. I remember my mom cussing like a drunk sailor very upset one day in the doctors office. My mom usually didn't cuss, and I was mortified and embarrassed. I thought I would never go in public with her again. But then you have to just stop and realize that it is not their fault. Cancer is very hard and it is just as hard on the family. I know how frustrating it can be, just remember she is doing the best she can, and you just be as supportive as you can.
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mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Mommysgirl,
All the stories about decadron are true! My wife has always politely stood up for herself but is usually "refined" about it. A week or so ago, we stopped by a cookie shop (no advertising but the name sounds like "Mrs. F***d's") for a dozen. Buy 3 get 1 free deal. My wife didn't think the price was right (it was) and verbally jumped into the young counterboy's face over the price. Our daughter and I were shocked over her outburst. The young man beat a hasty retreat and his boss came out of the office to see what was wrong. I apologized and we departed with our cookies. That was on a low dose of decadron! After the fact, I smile about it, but wonder what the higher-dose of decadron will be like. Needless to say, I'm making it a point not to "cross" her. Thanks for sharing your experience with me.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

RLW,

Yes, "roid rage" is very common. My husband wasn't on steroids too often, but he got pretty zippy feeling on them. Just think of it this way, I would have probably done the same thing at the cookie shop without the benefit of being on steroids! LOL Shocked

PBJ

In

So true a women and her cookies.

And you can tell you two have been married a while "not to cross her" lol,. Laughing

Good to see there is a smile there with so laughter to follow.

I have heard of personalities "changing". Rage etc.

good luck with it. Just smile with it. People will think your nuts. Wink

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RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Thanks to all for your replies.
Mornings are bad for my wife. She rises early (4:30-5a), has problems with her vision and moves slowly, unsteady on her feet - almost like sleepwalking. After breakfast, she goes back to bed to rest. By late morning, her vision improves, but it's not until late afternoon that she perks up and wants to get around and do things for a few hours. She's comfortable and alert in the evenings until falling asleep around 10. Part of her energy problem may be her sleep which now only lasts from about 10p until 2a. From 2 to 5, she catnaps. The prescribed mild sleep aids have thus far not helped her sleep thru the night. Has anyone else experienced a similar change in sleep habits?

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