Husband with Stage IV NSCLC

[bauner95]

Posted: Mon May 23, 2005 8:03 pm Post subject: Husband with Stage IV NSCLC

I am new to all of this and don't have much to information for you. My husband is healthy with no symptoms of the cancer. If not for a softball

injury, we still would not know he had it. We were diagnosed in Jan. 2005 with NSCLC Stage I. Attempted surgery on Feb. 16, 2005. Could not operate. Met. on Chest Wall. Now NSCLC Stage IV. Our wonderful surgeon came out to a waiting room full of people to break the news to me, my nine year old son, three year old daughter, his Mom and Dad and our two closest friends. He told the entire waiting room that we were looking at six months to a year. Talk about scared to death. Then there were our children full of questions. We went saw one onc., who we were not pleased with at all. We switched to a new one that has been wonderful. He thinks that considering my husbands age

(33) and good health, remission could be a possibility for us. We are praying. He was a nonsmoker and they are not sure where this came from. We started Chemo on March 18th (right after my husbands 33rd birthday). The treatment we are using is Carboplatin and Taxotere. He is taking the Chemo pretty well, aside from the metal taste.

Kim Miller (32)

Husband Mike (33)

Jan 2005 Diag. NSCLC Stage I

Feb. 2005 Diag. NSCLC Stage IV Inoperable Met. to chest wall

March 2005 Chemo Carboplatin/Taxotere (Every three weeks)

[Fay A.]

Hello, Kim,

I am so sorry you have reason to be here. Having said that, this is a pretty good place to be if you or someone you love has been diagnosed with Lung Cancer.

It's good to know you've found an Oncologist who is willing to work with your husband. It's critical to have a good working relationship with the Medical Providers.

As your husband undergoes chemo please be sure to ask questions about how to handle the side effects (if he has any. Some folks don't). Pretty much anything he might experience has happened to someone on this list.

Oh, and I hope you will look into a second opinion on surgery. There are some docs who can operate. One of our members had surgery to her lung along with surgery to her chest wall. And I am a Stage IV who had the remainder of my right lung removed a little over two years ago, along with most of my mediastinal lymph nodes.

You guys may have to travel to find the caliber of surgeon who can tackle a complicated case.

Wishing you all the best

[bauner95]

Does anyone have any suggestions for the metal taste after chemo? That is our main problem. As a result of the taste, my husband does not want to eat until it is gone.

Thanks,

Kim

[gail p-m]

Welcome. You'll find lots of information and support here as well as long term survivors. Don't believe the statistics or what gloom and doom doctors have to say. And something else I've learned from these people is to always go for a second opinion. As Fay said, some have been told they're inoperable but they were later operated upon by a different surgeon.

My prayers and thoughts go out to all of you and please keep us updated.

Gail p-m

[richinsdakota]

Welcome; yea, keep learning, searching for docs who can help...Lot of ppl have had tumors reduced by chemo or radiation which made surgery possible, etc. Anyway, youre in the right place for help and support. Good luck...Rich B.

[karenl]

Hi Kim

Sorry for your need to be here, but glad you found us.

Don't pay too much attention to the time-frames assigned by the doctors - Mum was diagnosed at stage IV almost 2 years ago now.

Like the others have suggested, if you are able to, seek another opinion.

Wishing you all the best,

Karen

[bauner95]

Thanks for all of the great advice. We did go see another doctor and he is wonderful. He feels that after we have had chemo, that surgery could be a possibility for us. He comes in the room, hugs and kisses my cheek, asks about our kids, Mike's parents, everything. He is awesome. Some people have mentioned the University of Cinicinati. We do live near there, but would not go there. You see, that is where the surgeon is and the oncologist that we saw there did not give us much hope either. I do believe that your doctor must believe in you and your health as well. If he is not on your side, you are out of luck.

Thanks,

Kim

[Pam's friend]

Kim,

I had the metallic taste as well. I bought bags of hard candy to suck on.......I am a coke addict (coca-cola). I like them out of the can and the taste was horrible.....I didn't get the taste immediately after my treatment it seemed like it was about 5 days into it. It does go away and sometimes after my treatment I didn't have it at all. But I know what your husband is talking about. Nothing taste the same. The only thing I can suggest is the hard candy and not to eat his favorite foods. That doesn't mean he can't eat anything it's just going to taste different. I just avoided the foods I liked and enjoyed them when my taste was back to normal.

Hope this helps!

Pam

[cindi o'h]

Hi Kim.

Looks like your best friend pointed you here. welcome to our clan.

Regarding your last question. We had a big discussion over the metallic taste awhile back with another member. If I remember right, it seems as if people tried all kinds of things, from popscicles to salt water rinses. And then if I remember right, it was just something that needed to work its way out of the body and then the taste buds started to work right again.

Well. I just gotta say, that it is a big bummer when food tastes like a nickel when it is being consumed. I never did have that side effect so I can't know. But, I will tell you this out of concern. Mike must eat if he is going to survive this deal. He needs his strength to re-build what the chemo is destroying ...the good cells, you know? That is one of the things that the onc. stressed to me before I started. He said that a study was done on it and said that people who ate regularly fared much better than people who lost weight.

And I also want to add that there are some marvelous chemo drugs that seem to have been built for people exactly like your Mike. Lots of hope, Kim. Lots of learning to do. And lots of living to do. Come here often. We will help you all we can. And together we will get that man back on his feet to see his grandkids have babies!

Cindi o'h

[ginnyde]

Hi Kim, wish you didn't have to be here.

Food, have Mike try every different food you can think of, he will probably find something that is tolerable. Boost or Ensure milkshakes with lots of ice cream sometimes work and provide both nutrition and calories. Get the Plus variety, more calories.

Many cancer survivors are on anti depressants. Talk to you doc.

Like others have said surgery may still be an option and being young and healthy certainly works to Mike's advantage. Keep us posted.

[dadstimeon]

Hi Kim, Welcome and sorry to hear about your husband. Best place for caring, sharing and info. As for the metallic taste I read it helps to eat with plastic utensils not regular silverware. Worth a try. Couple of links that might help also. Hope this helps. Prayers for the best. Rich

http://www.chemocare.com/managing/fulls ... itype=1875 (Taste Changes)

http://www.chemocare.com/managing/home. ... emotherapy Side Effects)

[shineladysue]

Kim,

Welcome to our family. I'm so sorry you have to be here, but I want you to know that this is a wonderful group. Mike's new oncologist sounds like a very kind person and I'm so glad he has given you hope. I'm sure Mike's young age and strength will be in his favor.

My husband (Mike) didn't have the metallic taste except for certain antibiotics he has taken, but I think it just had to work out of the system. In the meantime, I hope Mike will eat anyway. Good nutrition is as much a part of fighting cancer as the chemo. My best to you and your family.

Love and Prayers,

Sue

[chloesmom]

Kim,

I had that metallic taste too, and never really found a solution, but others have since said that lemon drops or those altoid sours help a lot. Might be worth a try. I hated to even put a metal fork or spoon in my mouth because it just seemed to exaggerate that metallic taste.

Cindy

[Doughnut]

Hi. I can't help you with any of your questions but I wanted to welcome you. It's astonished me how many people are afflicted with this disease as such a young age. Best wishes for your whole family and it sounds as though you've found a really great doc.

Dee

[SBeth]

Hi Kim,

I'm sorry you're joining us, but Welcome! I think I read in one of your posts that you are near Cincinnati...I'm just outside the city to the east in Batavia.

There are many many wonderful doctors at U.C., please don't allow the discouraging attitude of one deter you from your goal. I understand much of what you are going thru, as do many here. I wish I could give you some advice about the metallic taste; my husband lost alot of weight because of that. It wasn't that he wasn't hungry, he just couldn't stand the taste. It seems like foods with alot of spice taste good and he says cheese still tastes the same. One thing we did and it worked for a while is to eat a piece of pineapple just before a meal...not sure why, but it masked the metal taste long enough to eat a little.

I'm going to send you my telephone number in a PM, please don't hesitate to call me if there is ANYTHING at all I can do for you, even if it is just to sit and listen. We are all in this together.

Love,

[Don Wood]

Hi, Kim, and welcome. My wife has the same diagnosis and also started with the same chemo protocol. She is 2 1/2 years out from diagnosis (given 9 months), so take heart. There are many things to treat non-small cell LC. Don

[jang]

Welcome Kim! There are lots of people here with Stage IV ... many have been around a long time. Don't listen to the statistics ... read the stories on the "my story" forum ... Good Luck to you and your family.

[J.C.]

Welcome Kim,

Sorry you are here but you will find a lot

of people that will help with your questions.

Take care.

J.C.

[Hebbie]

Welcome Kim ~

Your husband is the same age as I was when diagnosed (also a life long non-smoker). It's a hard diagnoses to swallow, isn't it....

You have come to a wonderful place for support, comfort and hope. I too was given a protocol of Carboplatin and Taxotere, however, mine was given in weekly doses, at the same time as daily radiation (and both came AFTER surgery).

I know you said he doesn't want to eat until the metallic taste is gone, but he really needs to keep up his strength while undergoing chemo. Experment with different foods, textures, and even temperatures of food until he finds things that don't have that metallic taste -- and when he finds something that works -- eat a lot of it!

[Maryanne]

Hi Kim,

I ditto everyone else... welcome here and sorry you had to come here. And as you can see already, we are very supportive and informative to you needs.

I am so glad you sought out a second opinion. That first doctor had no class as he announced that in front of strangers. That was so unfeeling. I can only imagine your emotions at that time.

My husband had an upper left lobectomy (lobe) removed. The operation was suppose to take 4 1/2 hours, well 7 1/2 later the surgeon came out came over to the waiting room and took us to a private room to discuss why it took so long. Thank G-d he was alright.

But my blood boils when I think about how he told you.

Anyway as you will see all the profiles below peoples names that there are so many here who were diagnoised with stage IV and are still here years later. So do not listen to statistics... people beat the oods here all the time and continue to do so. Mike will too. Just believe and have faith.

I will be thinking of you and Mike and send prayers for a better diagnosis.

Please keep us informed.

Maryanne

[Frank Lamb]

Hi Kim,and welcome to our support family.There is a very good chance you can achieve remission.There are many with stage 4 here doing ok.

I also had carbo and taxol as treatment and it worked well but I had allergic reaction to the carbo after 5 or 6 rounds.Along with radiation it shrunk the tumor considerably.

The metal taste is tough to deal with,hard sour candies do help.