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Duke 1955

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I believe that I have told part of my husbands story before, but new developments!

He was diagnosed in May with Advanced 3b Lung Cancer. Huge tumor at the bottom of esophagus, blocking entrance to right lung!No surgery because it had spreas to lymph node by right clavicle. Obliteration of Right middle lobe of the lung, completely collapsed. Only 7 chemos and 28 radiation. This he completed at the end of August. Then he did his radiation crash and burn... and rested for 6 weeks. He did 1 Immunotherapy, and got pneumonia a few days later. Oncologist decided he needed more rest... then 2 weeks later was admitted into hospital with pneumonia and pulmonary embolism. Had chest scans done... showing a slight decrease in tumor size, and lots of shadows around lung area. No appetite, has lost 20Ibs this year.

During all if this, he has been battling severe anxiety. From the day of his diagnosis, it’s like something switched in his brain. Pacing the floors like a caged animal, rocking back and forth, not sleeping at night, can’t carry a conversation, can’t focus, restless beyond words, doesn't want to talk to anyone. It’s like a different man. No humor in anything.we alway could laugh! Has been seeing a psychiatrist from the beginning... taking Ativan and a nightme sleep aid. On a clotbuster and puffers now. He is suppose to make a 3rd attempt at immunotherapy on Wednesday. But his oncologist point blank said to us at the last visit... unless he get this anxiety issue under control... he is not able to help him! REALLY! What does that mean....?????!

Look, I know that the prognosis is not good for him. But I would like some honest opinion from people who have traveled this road.

Thank you!

Duke

 

 

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Wow,  Duke, you and your husband have been through a lot!  I hope you have support for yourself. Your husband's  issues must be challenging for you to deal with

Anxiety is common among people diagnosed with cancer. Your husband's anxiety seems more than what is usual-- it sounds like it is disabling.  A couple of things occur to me. First, has he been assessed for any organic brain issue, either cancer related or other? Second, have you/he considered getting second opinions, both oncological and psychiatric? or a referral to palliative care? Some people equate palliative care with hospice, but that's not what I'm referring to. Palliative care aims to help with pain and other symptoms of serious illness or from side effects of treatment and aims to improve quality of life. A good palliative care doc can also help coordinate treatment when there are multiple issues and multiple doctors involved.  Hang in there and best of luck to both of you.

Bridget O

 

 

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Thank you Bridget. This was our second opinion. We are going to Sloan Kettering... and do feel we are getting the best of care. He has had a brain scan before we started any treatments....and the beginning of this bizarre behavior started on the first day we were on our way to meet the oncologist. It just seems to have gotten worse.

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Opps...clicked early. Walking is another piece if reducing anxiety. Is he doing any breathing exercises- also to be found on youtube? This is a scary, loss if control, loss of health time. Find support for you too.

 

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Unfortunately, I battled the depression beast. The battle was joined because I refused to admit that I could be affected by the mental strain of treatment and failure and more treatment and more failure, etcetera! I didn't make progress with my depression treatment till I admitted I had a problem. 

My wife talks about pacing, restlessness, inability to concentrate, sleeplessness and more.  You are seeing me thirteen years ago. I was a different man then but central to my therapy was the idea that I can make choices about how I feel about life.  Lung cancer did not rob me of choice and there was (still is) substantial opportunity to enjoy my life if I choose to do so. My uninhibited power of choice became the sunshine of my life.

I may be NED (no evidence of disease) but I live with substantial medical and physical impairment. I can chose to be dominated by impairment and ferment. Or find joy and revel in it. Your husband has the same power of choice. Unfortunately, he'll need to discover this concept himself and hopefully his practitioner is leading him toward this path.

I think it strange that his oncologist is denying him lung cancer treatment because he is having concurrent psychiatric treatment.  My treatments were concurrent.  You should explore this point with his oncologist.  

As for your husband's prognosis, I think you may be premature.  His prognosis for tomorrow is life. I'm betting the same prognosis applies to next week and next month.  Why take measure of life without the intention to enjoy it? Start with the little things. Help him mine the smallest opportunities for joy -- a favorite song of his youth, your first dance as husband and wife, his awkward or perhaps suave proposal of marriage. Remind him, then help him revel in the memory. I've found there are small opportunities all around me.  All that is needed is recognition and appreciation.

Welcome here. We understand what you and your husband are dealing with.  We live his reality and we can help both of you to make a life with lung cancer.

Stay the course.

Tom

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Was the doctor saying he wouldn't treat him (which sounds unethical), or that he didn't think the treatments would help him as long as he was consumed with anxiety?

I think mental attitude DOES play a significant role in the ability to recover.  Having a good attitude doesn't guarantee your treatment will work but I think a bad mental state can definitely interfere with recovery.  Stress can interfere with the immune system.

Not all mental health practitioners are created equal.  It might be good to see if you could find one who specializes in treating patients with serious/chronic illnesses.  Also, in addition to drug therapy for the anxiety/depression, Cognitive Behavioral Therapy (CBT), which involves learning to adjust self-talk and negative perceptions, might help.

Please do be sure you take care of yourself, too.  It's easy to become so consumed with a partner's problems that we neglect our own health.  That helps no one.

Sending a hug of support.

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Hi, Duke,

I'm sorry that you and your husband are going through such a difficult time. I'm glad that you've connected with some of our members and moderators, who can share their personal experience and advice. The Lung Cancer Helpline is another great resource. It's a free phone service through which a team of professional oncology social workers will be available to address the emotional, practical, and information needs of people diagnosed with lung cancer, their families, and caregivers. You can call toll-free 844-360-LUNG (5864)Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm (Eastern time).

If you'd like, I'd be happy to provide you with additional information about LUNGevity's patient and caregiver support programs and resources.

Please post an update when you can and let us know how you're doing.

We are here for you,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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  • 2 weeks later...

I just got diagnosed on November 12th with adenocarcinoma of the lungs and currently waiting results of PET scan and MRI; my pulmonologist gave me Xanax a very low dose but has helped me through this week so far.  It makes me sad and anxious to hear of others having anxiety as a barrier.  

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Hi Katie

I was diagnosed on 9-21-18 following an admission for pneumonia that did not respond to antibiotics, steroids & inhalers. I’m. 51 year old athlete, never smoker.  I see from your posts you’re in the blitz of assessment. Please be sure to ask about molecular testing to evaluate for mutation & potential targeted therapy.  

We’re all in this together.  

Michelle

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  • 3 months later...

Duke, I was diagnosed in September. Stage four. And I was very anxious. Thank goodness someone sent me some cannabis oil and I could finally sleep and control the anxiety that came up often. Walking, making art and therapy help too. Good that you ask for help. Keep asking. There’s lots of excellent books out there. Mainly you are not alone.

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