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New Here - My husband has stage four NSCLC


MaryP

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Hi,

What a great board! I wish I had found this sooner.

My husband was DX w/stage four NSCLC in April 2002. He went in for pnemonia and came out w/the DX of stage four lung cancer - it spread to his brain, his heart sacs, his lungs' pleura, his adrenal gland, and his lymph nodes near the originating lung tumor. It was bad enough finding out he had CANCER, let alone STAGE FOUR. :( I had gone from shock to disbelief to despair to hopeful and I have come to an acceptance level emotionally, and it is so hard.

We have two children, ages 16 and 14. My husband is 48 and I am 35. We owned a home and he worked full time making a very good living - well that all has changed. He had to quit working for radiation and chemo and the ill effects he suffered from radiation and chemo and he went on SSD, Medicaid, and food stamps. :shock: It was quite embarrassing at first, however, he was a HARD worker his entire life - since he was a young boy - so this is HIS money he put into Social Security and the government, this is how we choose to view it. We had to sell our home and rent an apartment...that broke our hearts...but, we have food, shelter, clothing and all we NEED...and we have all the material things we aquired over the years to comfort us and give us the sense of "home"...even in the apartment. It is a very large apartment - that helps but it is not the same as my four bedroom house was. :( Oh well...such is life.

Anyway...I am worried as the STATS are NOT good for stage four NSCLC but my husband has repsonded to treatment very well. He gets another CAT SCAN Tuesday and currently he is on Gemzar. He has not been able to follow the schedule due to his white cell count dropping so frequently, so I must wonder if the cancer is growing again, spreading more, etc. I guess we will know soon enough. He did have a brief (6 week) remission in the Fall...that was WONDERFUL. We were able to "forget the cancer" for those six glorious weeks and "get back to normal", or as "normal" as we could.

My husband tires easily, he is pale, yet he is not too thin - he eats well and he drinks Ensure or Boost. He gets a shot of Procrit every few weeks (I think it is every few weeks).

His oncologist is a bit too "laid back" for my liking. I suggested the Procrit and now he is giving it to my husband. Had I not suggested it I wonder if it would have even been offered...and he goes to the Ireland Cancer Center here in Middleburg Hts., Ohio...it is one of the best for cancer.

Well I just wanted to introduce myself and give a background on our situation.

We choose hope and we believe miracles happen. :)

Take care, :)

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Hi Mary,

I'm glad you found us here. There is a great group of caring people here who have been fantastic in supporting those with L/C and those that love and care for them. Sounds as though you and your family have already been through quite alot. I hope you will make yourself at home here and know that we are here for you. Positive thoughts and prayer go out to you and your family. Keep in touch and don't forget to take care of yourself too.

Hugs

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hello Mary,

I know what you are going through... although my mother could never have afforded a four bedroom house, she has lost most of what she did have and like your husband is now on SSI. You are so right about it.... they worked very hard for all they get and more.

Mom had finnaly established her own business just 4 short years before the DX, of stage 4 NSCLC. She lives with me know in what used to be my daughters room, a far cry from her cosy little home she used to have. Unlike you, she doesn't have anything from home. I try to get her to bring stuff to make her more comfortable, I think she doesn't want to move her stuff here because it would be like giving up her home completly.

Well, my point is, you have the right attitude and should still keep your head held high. Fight the good fight. I TRY not to give up, it's hard, easier said than done tho.

Keep us posted and good luck to ya,

Renee

Mom dx in september 2002 stage 4 NSCLC,

finished 8 weeks of radiation, started chemo last month,

had second round today, (keeping fingers crossed she doesn't get sick and in the hospital again.)

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Hi Mary,

my prayer are with you, i know how you feel, my husband is 43 and he has sclc, and i know how over night things can change, my husband went to the hospital which we thought was pnemonia and found out it was lung cancer his spread to his liver, lymp nodes in the chest, and in one week was on a breathing machine, i have a 18, 16 and 9 year old. My husband has his good and bad times, and i know there is times i forget he is sick because he is doing real well, then he has a bad day and i remember real fast. I aslo know how you feel about ssi, my husband had no disablity insurance and we had to apply for ssi, i know how it feels to be helpless, but i learned to take what people offer, i felt funny at first, but that is how we have made it so far, i work full time because we need the insurance, and our township and church has done so much for us the have had fundriser for us i used to hate when they would say we need financial help, but we do, and they have help at thanksgiving and christmas so now if you offer i will accept. we just got 20 inches of snow and i didnt know what i was going to do, and i look out side and a neighbor had a snow blower in our driveway and told my husband he knew he had cancer and wanted to help, so all i go though, i know someone will alway be there to help. We have been able to keep our house, because of the help we have gotten and now we get ss and that helps with that , i will be thinking of you, and you will alright.

Sandy

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So sorry to read your post. I love this board but I hate to read about what this disease does to good people, especially families with children. Your oldest is 16 so that means you and your husband have essentially been together since you were kids, and I can understand the shock and devastation you must have experienced.

My husband also has lung cancer although we are older than you and your husband we have younger children 15, 11 and 4. I know the statistics are scary, but you just have to go ahead and make the best of the good days. My husband and I had planned for retirement etc. and often we did not take a family vacation because we didn't want to spend the money. Now I wish we would have enjoyed life a little more when he was healthier. If nothing else, lung cancer sure does bring an understanding of what's important in life.

Somewhere I read (and it may have been on this board, I don't remember) the phrase "dream new dreams" and that is what has happened. Now our dreams have changed. Instead of saving for the future we are more concerned with today and just having him here. And while you have lost your house, you still have your husband and your family. So live as much as you can, and try to dream a new dream.

And on a practical note, your husband should get shots for his white blood cell count too. Ask about leukine or neupogin (probably spelled that wrong.) Know that unfortunately there are lots of spouses here with you and we will help however we can.

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Hi MaryP,

You are right, this whole cancer thing makes us realize what is important in life. Material things seem to have less significance, and we find out we already have everything we NEED. My mom is also currently on a Gemzar regimen, with Navelbine. She gets her chemo from a complementary cancer care clinic. It's been 7 months since her Stage IIIB borderline, Stage IV diagnosis, but her recent CT and PET scans came back clean.

Hang in there, kiddo.

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You will find a lot of friends here. Stay with us. This has been like a lifeline.

I too, hated getting help. It took me a while to get past that. I knew through my surgery that when i was well, I would help others. And we do. So take the help now--you'll know when the time is right to pass it on.

These days, as I step over my laundry, I smile about the ties I was relentless with getting it done and the house pciked up. Now we are more relaxed. We sit and enjoy each other's company.

The cancer as well as 9/11 showed me that life is too precious.

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Guest Karen L

Hi Mary

I followed your story on another board and then this one was recommended and I'm so glad it was!

My husband is 58y non smoker, became ill 6/2002 and finally dx with NSCLC of the pleural lining with malignant pleural effusion in 9/2002. It is questionable whether it is anywhere else in his body as biopsies and scans are all negative in spite of a lit up PET scan.

He was so healthy before and we always lived live to the fullest. We have no regrets or unfinished desires as we always lived within our means and dreams. But cancer does change your life and direction and relationship and I am struggling with that now, too. We have entered a new phase..........

I'm a nurse and have fortunately worked the ropes from all sides...disability, insurance and hospitals. I don't know how non-medical people make it as it is a constant battle to get things right.

We applied for SSDI (not SSI which is income qualifying) and we were approved in 1 wk. If anyone needs assistance in the wording of their appication or necessary medical documents in regards to NSCLC and disability I would be happy to make some suggestions.

Karen

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Hi Karen,

My mom also was diagnosed with malignant pleural effusion in July 2002. All her other scans showed nothing. But she was certain she had tumors because she used to have pain around her shoulder area and back. No more. My mom is almost in remission now, but she needs to have a surgery to try and re-expand her trapped lung that formed as a result of the constant fluid buildup. A word about malignant pleural effusions: Whether medically or surgically, please get them taken care of PRONTO.

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Guest Karen L

Marlon

My husband had a thorocentesis 3 times. The fluid comes back because there is the space left by the trapped lung. It has remained steady or smaller fortunately since 9/02. No need to drain unless he is uncomfortable. They did the VATS procedure and found they could not re-expand it in Sept. That sent him down hill as his lung collapsed and they found it had torn from a previous thorocentesis. He went home with a chest tube that drained for 6 wks and eventually fell out.

Marlon, I would only seek surgery from a thoracic surgeon. Ours was also certified in Oncology, so we had the best available in our area. I glad to hear your mother is doing well. Did she have chemo?

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Well Karen I for one could certainly use those hints on the SSD application. We have been working on ours for days!!!!!!!!!!!!!!! My God, how many pages is this thing? We are doing it on line and get to a stopping point, come back to finish and go on, think I'm almost there and NO more pages!! My gosh. Please post anything you have to help out myself and others. Thanks

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Guest Karen L

Ry

It's our goverment, ya know. They can take anything and screw it up. I think it provides job security for the designers of such! I'm glad you stuck with it. On a positive note, we should be really glad they let you take a break and go back!!!

This is just the start of it. We then called for an appointment. Always best to be a face rather than a piece of paper. It took 2 wks for the appt and then they called to say just come into the drop off window and have my documents witnessed. Mondays were busy. (My husband is from England and to get a marriage/divorce/birth duplicate would take an act of God) If at all possible, do not leave your originals with them unless you are certain you can obtain new ones easily.

The documents were witnessed and I left a copy of the ap and medical documentation with it. We received a letter acknoledging receipt with a contact number. They asked to be notified of any new tests. I did, left a message, they called back in 10 min!, I explained a few points and the case was closed and approved.

I think we need to open a separate subject on this matter. Questions? I can also post the "Blue Book" automatic diagnoses guidelines. Not all NSCLC is terminal, thank goodness.

Karen

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Thank you to all who replied and for the kind words and the understanding. It has been most difficult going through this. :(

I found this board via a link on the board I had been posting on since last April. The mod's there deleted the link but I got it before they did thank God. I feel for a support board that is not right...we were not even allowed to exhange e-mail addy's and one of the lady's there - her husband passed recently and her husband and my husband had the same doctor and went to the same Cancer Treatment Center. We had to get messages to each other through the hospital - that is just sad that a place is that insecure that they deleted ANY posts w/e-mail addy's and other lung cancer message boards. Life is too short for that...this is a tough illness to have and it is hard on those of us who are the caregivers. I tell my husband that his cancer affects not just him, but it affects me and the children and the entire family - all who love him. We hurt too...but no where near his pain I realize. :(

Today we had a scare...my husband had his chemo two days ago and he woke up w/a swollen neck and shoulder. It is on the side the originating tumor is on - he went to the doctor and had an x-ray and found out he has wax buildup inside his ear and a lymph node infection - a "bad infection" they told him...? I never heard of any such infection before, has anyone else? He is on Augmentin {sp?} and if he gets a fever they will admit him. He has been sleeping since he got home. He is tired and rundown from chemo...it hits him the second to the fourth day - that is when the fatigue set in. He is on a break for two weeks and then he gets his CAT scan and we find out how he is responding to Gemzar. I thought his scan was this week but I was wrong...it is in two weeks - this week was chemo as last week his white cell count was too off for it.

WOW...I am having a hard time w/this tonight. I was so shaken from the scare we had today. This is a day to day battle. I recently started Paxil to cope. I have GAD/panic disorder anyway and this just made me agoaphobic and so now I want to get my life back so I can leave the house and live and let him know I am going to be OK....he worries about me and I don't need him to have such worry. :(

Sorry so long, thank you ALL for the replies.

Take care,

~ Mary

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Hello,

I am so sorry you are going through this rough time. You're right. Cancer is a day-to-day battle, even for those in remission, for each time they have a check-up is re-living all the horror again. My dad is not in remission, so I am full of anxiety and worry just like you. The cancer does affect us all and no one will ever be the same. I try to look at the positive. I have never loved so much. I have never appreciated things more than I do now, I have a different outlook on life and live it one day at a time. All we can to is be their strongest advocate (in terms of research, staying on top of their treatments and medical care) and love them. I am sending positive thoughts your way for a speedy recovery for your husband.

Hugs

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Hi Karen,

Yes, my mom is doing chemo. According to her first oncologists and doctors, chemo was the only option once there is malignant pleural effusion. Last month, this thoracic surgeon we met with implied that she recommends surgical, rather than medical treatment of MPE, because of NSCLC's dismal record with chemo, and after a while treatment gets more complicated. My mom's recent CT and PET scans have come back clean :D

BTW, I was the one on the healthboards site who recommended this site, before they erased the link.

:wink:

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Guest Karen L

Thanks for recommending this site, Marlon!!!!

My husband was nauseated and vomiting all last week after chemo. This week we tried 3 days of IV hydration at home after chemo, along with IV Kytril and Decadron. He's not 100% but better this week.

Cancernausea.com has some good information on dealing with different types of N/V and when it occurs.

Karen

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Mary, Lucie and I also choose life. Sh is Stage IV NSCLC with mets to the bones. No one knows how many day son this earth he or she is given. Just look at the young athletes recently who died of various conditions. Lucie has gotten dehydrated too (she was taking radiation as well as chemo in November) so we are well aware of the need to eat and drink. She has restarted chemo and it is going fine this first time around. Her spirits have improved with me working on that, and having the help of caregivers (both of us). Hang in there. We all have each other to get through this. Blessings. Don

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