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Husband has NSCLC- need a little encouragement


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I posted this in the late stage forum, but thought it should go here too...

Hi all !

I am new here...my husband (Tim) was diagnosed with NSCLC 12/27/02. He went to the ER and they thought he had pneumonia with fluid on his lung, but after a course of antibiotics it did not clear up and we followed up with our Primary care...ended up taking 2 litres of fluid off the lung and the fluid was sent for testing and they found cancer cells in the fluid. He ended up having a VATS Talc Pleurodecis procedure to seal the pleural linings of his lung to prevent any further occurances of fluid. We were told that it was large cell undifferentiated from the test of the fluid. They did a bronchoscopy when they did the VATS and the surgeon saw one tumor in his right lung that was pressing on a airway. All his CT scans, Brain Scan, Bone scans came up clear... but from what I understand as he had a malignant pleural effusion that automatically stages it as IIIB

The oncologist said no surgery, but he has had his first treatment with Carbo/Taxol- once every 21 days and goes for #2 on Monday. He did fairly well with the first one...a little nausea that the meds took care of, a LOT of fatigue, especially at the point when his white cell count dropped, and his hair did start coming out (shaved his head to take care of that !) He will be having 6 treatments and then the onc said she would start radiation either 1/2 through, or after.

Tim decided he did not want to hear "how long"...that he just wanted to know what he needed to do and he is determined to beat this. He has a great attitude...I have (unfortunately) read up on the internet and the statistics are so grim, that I am trying to be positive, but to tell you the truth, they have scared me to death....

I love this man and do not want to lose him. He is only 54 and before this never even got colds. The shortness of breath that one day when we went to the ER was the first and only symptom. My friends say they understand, but they really don't. I have no family..I have no brothers or sisters and my mom is in a nursing home. I do have 2 stepsons, but they have only called their dad twice since they found out in December and never visited him in the hospital when he was there for 6 days for the Talc procedure. I go from being angry to crying... Please tell me there is hope.

Kathy

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Hi Kathy,

Your husband's diagnosis is almost the same as my mom's. Except that it has never been clear whether there were any tumors or not(The doctors we were initially dealing are morons). It didn't occur to them to try the talc pleuradesis before starting her on chemo. The pleural effusion came back positive for "cells consistent with metastatic adenocarcinoma."

You better believe there is hope. My mom was diagnosed in July 2002. Now, after 7 months of treatment, she's still here, and the recent tests on her fluid have come back negative for malignancy. Not only that, but her CT and PET scans last month also show no signs of active cancer, or to quote from the report, "no evidence of abnormal metabolic uptake".

There are at least 3 other people (or their loved ones) on this board dealing with this very same condition. I will try to help as much as I can.

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Yes, there is defnintely hope. The prognosis is only a guess on past averages, and each person is different. My wife has NSCLC and we have agreed with each other that we will focus on the present and the near future only. She is undergoing chemotherapy after radiation treatment the end of last year.

I don't know what relationship you have with your stepsons, but they need to be talked with directly on the seriousness of their father's condition. I had to take my older son aside, explain that she could be gone next year, that we had hope and would work toward her being here then and beyond. BUT, it is no longer "business as usual". He needed to call her more often, visit with her, bring his kids around, etc. And I told my wife she needed to ask her children for what she needed and not be shy. So far, it has worked well.

No, your friends who have not been touched by cancer really don't know what you are going through. But you do need to reach out to someone you can trust and talk openly with through all this. You need to do that for yourself. My wife and I are trained volunteer lay chaplains in a local hospital, and in the training, they spent one lecture on "taking care of the caregiver" and how important it is to take care of ourselves so we can better take care of our loved one.

Your role takes patience, perseverence, a lot of love, knowledge of what is going on and assertiveness. It is an awesome role, but it can be done, day by day.

My hopes, wishes and prayers are with you. Don

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Kathy,

I don't believe anything is hopeless, as long as we have love, faith, belief and the patience to see this journey from beginning to end, however long that may be. There are awesome stories on this board of surviors and folks who know exactly what you are going through! I don't have friends or siblings to talk to either about my dad -only my husband, everyone else either doesn't have a clue or chooses to ignore the seriousness of what we are facing by going on with their lives as usual and Dad gets the obligatory call once a week. By circumstance, you are already a member of this board, and if you choose, this is the perfect place for you to come to "vent", laugh, get information and lean on others! We're here for you and we are including you and your husband in our prayers!

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Kathy, this is all still very new for you. You sound like you are somewhere between shock and anger/depression. It's natural in the grieving process. You are grieving the loss of your life as you knew it.

But I am here to tell you there is life with cancer. We cancer people are just more aware of how fragile life can be. And we learn to value each day we have.

So forget the statistics. They are just numbers. Remember too, what the statistics for things like auto accidents are. God is the only one who decides, not anyone else.

I found anti-anxiety and anti-depression medications helped tremendously, especially at the beginning of the diagnosis. And stay close to us and let us help.

hugs and hugs and hugs and hugs

gail

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Kathy,

I'm glad you found this board...it is such a vital source of communication, love, and support as you can tell from the posts that precede mine. I'm glad your husband has decided not to pay any attention to the "numbers", because, as you have discovered, they are soooo depressing and none of us can be expected to adhere to them as each case is so individualized. Saying a prayer for your beloved husband and you.

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Hi Kathy,

I am so sorry you had reason to find this board, but that said, welcome. Your husband sounds like he has overcome the most difficult part of this battle-that being attitude. We hear this everyday, how attitude makes a difference, and yet fail to realize how much it does. Your husband Tim sounds like he has a great attitude and the right outlook for fighting this battle. Although the physical part is a different sort of battle, no less challenging.

Please make sure to keep up with the doctors, and research research, research. Now you are not only a caregiver, but a researcher, and patient advocate-all being equally as important.

Please keep us up to date and visit us often.

Mirrell

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  • 2 weeks later...
Guest sharon

First off, we are with you every step of the way....

Now my opinion on the stepsons .... sometimes children have a very difficult time coping "realizing" that a parent is gravely ill. In order to deal with this realization... they pretend its not really happening, thus "going on with life as ususal". I don't know if this is true in your case, I have just seen it happen in my own family. Before we figured out why one of my siblings was acting the way they were, we were very annoyed at the fact that they seemed "very unconcerned" about what my Dad was going through. But after long talks and long hard looks on our part - we realized that it was not lack of conern on her part, but rather lack of being able to face what was happening - so, talk to them, voice your concern and bear with them.... I think they will come around.... My best to you.... Sharon

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Children of cancer patients get a double whammy: First, there is a threat that they will lose a parent and much sooner than they expected. Second, they are faced with the fact it could be genetic and it hits at their own mortality. My older son is going through that, and he is very hard to talk to. He will listen and take it in, but he won't discuss it. he has been supportive in ways that he can -- like touch, and calls, etc. It's a tough row for the children. Luckily, my daughter will and does talk with us both. The younger son will talk with us, too, but we have to initiate it. As we have all said, "Cancer is a family disease." It pains us all. Don

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  • 3 weeks later...
Guest patricia

After listening to my 43 yr. old sister complain that the 'allergy presciption' her doctor ordered for her cough was not working, I urged her to seek a second opinion. That began the rollercoaster ride this past December 2002. The 2 inch tumor discovered on her right lung was pressing on her vocal cord, which made her cough worse at night. She is currently approaching her 3rd week of radiation (actually part of a clinical trial using IM Photon radiation beam) and weekly traditional chemo. Her cough has improved, and oddly enough, she feels quite good except for being a little more tired. As each new day approaches, she feels that this will be the day it will 'all hit the fan'....that she'll lose her hair, feel sick and just want to roll up in a ball. I share driving my sister to her appointments with my other sister. We are trying to be a support team for her...listening to the doctors and asking the questions that need to be asked. All the tests show that the tumor is only in the right lung. The doctors are great and supportive. Is there hope here?

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Patricia,

As long as there is breath, there is hope. You guys are at the beginning of all this, and I know first hand that a week can feel like a year, when your emotions are raw and your life is changing so quickly. As caregiviers we are faced with the awesome responsibilities of our loved ones while most times being left feeling as though we STILl haven't done enough to help. Remember to take time for yourself, remember that information and reserach are the key to your sisters progress, and that there ARE survivors! It may be a bumpy journey, but we are praying for each other, AND YOU and your SISTER, that this journey is a long one.

Keep the faith and keep helping your sister by instilling positive thoughts and the fact that there are survivors, right here! Keep us updated, visit us to vent or ask questions, we really do care here, and you and your sister are welcome.

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Kathy,

Boy did you bring me back to last June. When through the same thing with my husband. No signs of anything, never been sick. Found out about his cancer by accident when he went into ER for something completely unrelated.

Was Stage IV NSCLC, with 3 brain mets. Is 51 years old. Could not believe what we were told when he asked how long he had. I'm here to tell you that after brain radiation treatments, chemo, Gamma Knife, and Iressa, he is in better shape then the rest of us.

His attitude is very positive and he stays involved. He is coaching out 10 olds girls basketball team just as he has done for the last 5 years.

Don't believe all you read when it comes to stats. They lie and there are people living out there with this nasty cancer. Stay positive and stay on this board. It has saved my life.

Alyse

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