Optimistic wife of stage 4 nsclc husband

[alibass]

Hello! Have found this site very helpful - found it last week and decided to join. My 58 yr. old husband was diagnosed with stage 4 nsclc about 4 months ago and is finishing up his 6th cycle (specific info is included in my profile). Feel like we have been lucky, (or maybe just grasping at any straw available) since chemo is working and he hasn't had disabling side effects. He has been tired and washed out and feels ick (he calls it feeling chemically) but have found if he goes home from work around 3pm and naps, it helps some. He's a little depressed but trying to work through that.

We found out about the cancer through a fluke, like most. The dermatologist removed a cyst on the side of his ribcage, and assured him it didn't look like anything to worry about. The doc, who is a friend of Jim's was floored to find out it was full of cancer calls (adenocarcinoma nsclc). He had no other symptoms, which I now know is common. The good news is that it was probably the easiest lung cancer biopsy he'll ever have. The bad news we found out was that it was in a whole bunch of places, including possibly his brain.

We thought about going to MD Anderson in Houston, but decided to first check out Ochsner Cancer Institute in New Orleans, since the orginal Dr. Ochsner was the one to discover the link between smoking and lung cancer. (Jim used to smoke, but had quit for 5 years). They also participate in clinical trials, which was a factor as well. The doc we saw encouraged us to go to MD Anderson and get a second opinion, especially since they did not have any first line clinical trials open. He did not give us any timeframes for Jim, other than he felt Jim would be ok to take a couple of weeks of deciding before starting anything. He said he felt that a 50% reduction in the cancer and stabilization was possible which has given many patients several years. He also suggested the chemo cocktail Jim is now taking because he felt there were less side effects. We talked a lot and decided not to go to MD Anderson - honestly, we weren't ready mentally to change our life that drastically and wanted to be able to be at home at first. FYI - we feel stabilization is fine, but are going for total elimination of the cancer.

So, Jim started chemo, we've been fine with the doc and at this point, think its turned out to be the right decision. We realize that may change. We looked at special diets and supplements and decided there was no silver bullet and that it would take a well rounded approach We changed our diet to fruits, vegetables, lean meats, no junk food, no sugar or white stuff, and no processed stuff. Strong multi-vitamin that the doc checked to make sure nothing messed up the chemo. We bought a treadmill for exercise and are more spiritually active as well. Our approach is to boost up his immune system. What we recognized in the doc's approach (and confirmed it with him) was to keep Jim as healthy as possible for as long as possible so he could fight it as much and as long as possible.

Wow, reading over this, it sounds like we think its so easy and like we think we have all the answers - its not that way at all. We make a decision after discussing and researching it to death and then dive into that black hole hoping it was the right one. As we all know, its a fragile house of cards. Its not fun and its not easy.

Am 40, he's 58, this 2nd marriage for both of us - we've been married for over 3 years. Both of my children are still at home, their dad died a couple of years ago, and Jim's children are married and live about 3 hours away and are very close to their Dad. Our family has blended very well and has dealt with a lot.

Right now, we are in "what's next" mode. I tend to research everything to death. Soon, he'll end up off the chemo he's on now and take a few weeks off to build back up. We're trying to figure out what to do next and discuss with the doc all the available options. Avastin? Alitma? Tarceva? A trial with both Tarceva and Altima?

The thing I found most helpful and hopeful were many members in the same shape we are in and have had success for several years. Y'all are my heroes.

Have some specific questions that would be helpful to us:

1. It really bothers Jim when he goes to have his scans and everyone is upbeat, and joking and then after the scans they see all the cancer and stuff, they look at him different (he calls it 'dead man walking' syndrome) and act subdued and morose. Part of this could definitely be his imagination, but I can only imagine at least some of it is true and standard human nature. Just wondering if anyone has experience similar and if y'all dealt with it in any way.

2. What is considered stabilization of the cancer? (This is also my next question to the doc)

3. Has anyone had a positive experience with MD Anderson? This kinda sounds like a joke, but really haven't seen much in the way of a psoitive response on this site and others - am being sincere - want to know good and bad stories.

4. For wives and husbands of cancer patients - how do you deal with anxiety and all of this? Am afraid to get on Xanax because I don't want to get addicted, or is that just a joke? Are there other meds you take that help?

[Donna G]

Welcome neighbor. Or almost. I lived in Gautier a couple of times. I was there when Fred ( the hurricane ) came to visit. We still own a house there. We hope to spend winters there. We also lived twice in La. I wish I could answer your questions but I am sure someone can comment. Glad you found us. We all know what a difficult time you are going through right now. I hope and pray that your husband responds well to the chemo. Please keep us posted. Donna G

[Ry]

Welcome to the wives club. To answer some of your questions...my husband is considered stable because his cancer is not growing. It is active on the PET scan but it is not getting any larger. He was on Iressa and is now on Tarceva which seems to be keeping it in check.

Get the Xanax, it isn't something you take daily only when you feel the anxiety. It will help.

All the best to you both.

Rochelle

[Fay A.]

"1. It really bothers Jim when he goes to have his scans and everyone is upbeat, and joking and then after the scans they see all the cancer and stuff, they look at him different (he calls it 'dead man walking' syndrome) and act subdued and morose. Part of this could definitely be his imagination, but I can only imagine at least some of it is true and standard human nature. Just wondering if anyone has experience similar and if y'all dealt with it in any way. "

It has bothered me, too. So, from the very beginning I set the tone for the encounter. I crack jokes, take an interest in the med techs (I've made some good friends along the way), and I let them know how long I have been a survivor...one month, 1 year, etc. I make sure that they understand that I want the entire truth...the whole picture. Because if I don't know where the cancer is and how much of it is there I can't advocate for proper treatment. Many of us who are Stage IV are considered "throw aways" by the medical profession. And the only way around that attitude is to fight like your life depends upon it...because it does.

So that's how I handle it. And when I meet a new person who gives me "that look", I just smile and say to myself that time will change the expression on his/her face.

PS Is Jim having scans done at Keesler? Just curious.

[Joycesson]

Your husband and my mother are similar in that they both were diagnosed in 11/04 with adenocarcinoma. My mother's LC is isolated to both her lungs and lymph node involvement, but so far it hasn't spread. My parents live in Dallas, me in Houston, and she goes to MD Anderson for her scans and treatment evaluations. I talked her into going to MD Anderson for her second opinion and we really liked the doctor there as well as the facility. Her doc. at MD Anderson started her out with Tarceva and now she's on her second round of chemo (alimta and carboplatin). She gets her chemo at her local hospital. She has an appt. at MD Anderson next Tue. for scans and then Thurs. for the results. What the doctor at MD Anderson told us was to get treatment in Dallas but get scans at MD b/c they have the state of the art equipment as well as a whole floor dedicated to lung cancer. So far we've had no complaints, but we're still in the infancy of all this. I'll keep you posted on our experences with them and I hope all goes well with your husband!!!!

[MelanieLR]

Dear Ali,

Welcome to our little cluster of hugs & prayers. I wish you didn't need to be here but it's really a wonderful little family. As I'm sure you've noticed by now, the right attitude is so important. It sure sounds like you've got that beastie in the right place. One thing my husband has done to assist on occasion is to take a very small dose of valium. He really doesn't want to go the Xanax route & finds the valium will take just enough of the edge off when it gets to be a little too overwhelming.

Please don't hesitate to let us know when you need ANYTHING. Be it info, a word from those who've "been there, done that" or even to just blow off a little steam. That's what were here for & we do it with joy that we might assist others through this most unwanted journey. We sure don't have all the answers but that common bond makes us a very formidable group to be reconed with! Well honey, you just keep that great attitude going & do all you can to adjust to "the waiting game" the stinkiest game in the world & one we always seem to be square in the middle of.

My hugs & prayers are with you & your husband,

Melanie

[Guest Rebecca]

Welcome! I just joined myself day before yesterday. Already, I feel better just from the kind words of other members here. My fiance (58 year old male) has just been diagnosed. We know it's lung cancer from the PETscan, but so far not what kind. We haven't begun treatment yet. It's going to be a long (hopefully) road. Everyone here at this site is in it with each of us for the duration. God Bless.

[cindi o'h]

Welcome to our group of optimists! We are a bunch of folks who believe that we can beat the odds. I think that you have come to the right place!

As far as that taking the edge off medication. There are some classes of anti-depressents that are available that also cut down anxiety. It might be of value to get an appointment with a Good psychiatrist. They are the ones who are pretty knowlegable about these things if your PCP is not. This way, the anxiety is controlled without the worry of addiction. Just a thought anyway. Also, they are beneficial in that they don't put you to sleep or make you groggy.

So glad that you are in it with him. You two sound like a neat couple already. We have some really great couples on this board.

love, Cindi o'h

[Guest Iiris]

I've only been here for about 3 weeks, since my dad was diagnosed with extensive SCLC. Just wanted to tell you how much I admire your husband's willingness to work on this together with you. He's taking an aggressive approach to his illness and that's great!! I envy your ability to work together as a team!! We can't even get my dad to talk about his illness....he isn't even aware of how serious it is. He's still grumpy, griping at everyone, sneaking off for a smoke, and wondering when he's going to feel good again without having any idea of what he's dealing with. They say ignorance is bliss.......I wonder?

God Bless and prayers for the best to you both!

Iiris

[dadstimeon]

Welcome Ali,

Sorry to hear about your husband. Stay with us, best place with the best people for sharing, caring and knowledge. Prayers for the best.

Rich

[alibass]

Thanks for the info, support and help. It really makes a difference.

Someone had asked about Keesler - Jim wasn't in armed forces at all so no, we don't get our scans there. Ochsners schedules things all in one (long) day where he gets his scans first thing, then sees the doc early in the afternoon and then chemo. The doc will either get preliminary reports by the time we see him or he'll call and talk to the radiologists(?) if the reports aren't ready.

Rebecca, I hope things go well and as fast for you as they have gone for us. Please keep us posted.

I will keep all in my prayers.

[SBeth]

Dear Ali,

While all of us here have one thing in common; some of us have much more in common, such as you and I. My husband's cancer was discovered quite unexpectedly as well. We were on a trip in Aruba and thought that the cabin pressure during our flight had triggered an unknown sinus infection. Upon our return home and a much more serious headache, a trip to the ER ended up in surgery to remove a brain tumor and the discovery of a mass on the lung. The rest is in the bio below.

Our similarities don't end there though...this is a second marriage for both of us as well. His two daughters (ages 26 & 23) are grown and on their own, while we are still raising my two sons (ages 14 & 11). I'm 38, he is 49. All in all our family is handling the diagnosis and treatments well; his oldest daughter has probably had the hardest time accepting the situation as he raised the girls all by himself and they, too, are very close to their father.

I really wanted to address your remark regarding the demeanor of the medical staff upon their realization of your husband's cancer. We have noticed the same thing, but in a different manner. I remember how we were treated in the ER way back in May. Upon our arrival (the Sunday evening before Memorial Day) the staff was pretty confident that his headache was nothing more than a sinus infection, or they suggested that we had possibly made a mistake in the dosage of his blood pressure medicine. As soon as the ER doctor came walking towards our cubicle after that "long and hard battled for" CT Scan of the brain...we knew. We knew something really BIG was up. Suddenly the red carpet was rolled out and for the next two weeks...everyone was SO nice. It was very unsettling to realize that people were going out of their way to be accomodating and caring and just so daggone nice once we realized that they were doing so because they thought he was going to die. Anyway, I don't know which is better...but it's interesting to me to note the different perspectives we have on the matter.

As for dealing with the anxiety, I haven't reached the point where I feel like I need a Rx...yet. I do alot of crying during my commute to and from work and feel like that is very theraputic. I will admit that there have been many nights when I am paralyzed with my eyes wide open as I listen to my husband sleeping and breathing and hold my own breath while I wait for an exhale from his side of the bed, so maybe I could use some help. I don't think there is any right or wrong method of dealing with anxiety and stress, it is whatever you feel like you need and when you feel you need it. I didn't realize that if you are taking Xanax you don't take it every day, but more on an "as needed" basis, so maybe that is something I might need to look into. Thanks Ry.

Anyway, what was supposed to be a simple Welcome and You're Not Alone, ended up being a book, sorry. Please come back often and let us know how treatment is going. As you probably already know, this is an outstanding site for answers, support and venting. We're glad to have you join the family.

[alibass]

thanks beth - what's also pretty wild is that we love key west too (noticed y'all celebrated at mallory square). It was pretty interesting reading your email and all the similarities.

My doc put me on a small dose of lexapro - am cutting the smallest dosage in half - its for general anxiety and depression, and imagine I have a bit of both.

Anyway, hope everyone has a terrific week and only good news.

[Maryanne]

Hi Ali,

I also want to welcome you to the board. I am so sorry you had to find us, but we are the most optomistic ( as Cindi put it ) people you will find.

The only advise I can give you is don't listen to statistics. Most people on here are statistics. They have beaten the odds time and time again.

I pray everything will turn out good for your husband. You seem to have nicely blended family whose support will help make a difference.

Sending out healing meditation to Jim and strength to you.

Please keep us posted and you will find we are always her for you.

Maryanne