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DarlaK

Not Sleeping since DX

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Newly DX Sept 3rd and have been on this site for weeks now looking for hope and help.   Many of you are a blessing to calm the anxiety that is caused by this awful disease. I am 50 years old former smoker and quit cold turkey Jan 1st 2006.  Here is a bit of my journey so far…

 In May this year had bad coughing for a month and then blood started so I went to Dr.  I had chest x ray and then CT June 20th that showed a 4CM cavity lesion and waited taking antibiotics while all the Doctors thought it was TB or bacterial issue Valley Fever..all were wrong.  Sent to pulmonologist and on Aug 30th I finally had a bronchoscopy and diagnosed Sept 3rd with poorly differentiated squamous NSCLC in left upper lobe.  Pet scan came back clear all but the lesion in upper lobe so I was cleared to get robotic surgery Sept 20th to remove the upper left lobe...praying the cancer had not spread to any lymph nodes but 1 out of 16 they took out had evidence of cancer.  Size of lesion I was told is actually around 5CM after resection so staged at 111A.  I know I am lucky so far.  The cancer is out and I need to get any cancer stragglers out with chemo in a few weeks.  I am so worried and can’t get it off my mind especially at night. I know it does not change anything to worry but it is hard not to.  I can't sleep at all at night any suggestions?  

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Hi @DarlaK  I had a similar path as you except no chemo after surgery.  The quiet times are often the hardest.  It’s perfectly normal to be worried.  You’ve been through a lot.  Don’t beat yourself up over it.  Hang in there.  

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DarlaK,

Worry and lack of sleep during my diagnosis and treatment phases were indeed problems. Because of surgical problems, I didn't get my post surgical chemo and that caused more problems. I hope your treatment goes smoothly and that you police up all the stragglers.

Has your tumor been biopsied? You mentioned squamous cell as a diagnosis so I assume you had a biopsy. Ensure, however you ask that your tumor tissue be sent for biomarker testing at a laboratory to see if you can be treated with new immunotherapy drugs that work on squamous cell.

Stay the course.

Tom

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Hi Darla and welcome here. I'm sorry to hear about your diagnosis, but glad that you found us. Do you have any anti-anxiety meds? if not, you might ask your doc for a prescription of something like lorazepam (ativan). I found this helpful when I couldn't sleep because my mind was going round and round over the same stuff.  If you get a prescription, be sure to read all the cautions. Ativan isn't great to take long term because it can lead to dependence.

I wish you all the best. Keep posting here and let us know what questions you have and how we can support you.

Bridget O

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Hi Darla-

Sleep is pretty much elusive to everyone in the beginning for a variety of reasons with anxiety being the most common culprit.   It’s so hard to get a good nights sleep because your head is spinning all day and at night your body is tired but your brain is on still on over drive.  How to slow down those thoughts????  For me it was a YouTube video by Dr Andrew Weil on the 4-7-8 breathing exercise. It triggers a parasympathetic response to slow the brain down.  It does take some time to kick in however it was effective for me.  

Bridget gave some good advice to have some meds available for the short term.  

You might also try diffusing essential oils or downloading the Insight Timer app (free)..

Each passing day will get a little easier, sleep will come.   Hang in there take it one day at a time, remember not to punish or judge yourself.  This is all very normal.  I’m glad you found us. Welcome to the family. 

Michelle

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I am hanging in there for sure and it is getting a little easier to deal with as time goes on. The Oncologist prescribed Remeron for the possible depression and lack of sleep but see the drug side effect is possibly low white blood cell count.  He reassured me it will be ok...I took a 7.5mg and a .25mg Xanax last night and think I got some sleep but woke up at least 6 times during the night.  It is so hard for me to sleep and I fell like I am going to go crazy.. the mindfulness and deep breathing seem to work a little bit but is is really hard right now.  I have already lost 10 pounds since DX and need to keep up weight for chemo I am sure.  

 

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Hello Tom, 

I got a call from the oncologist last night for my sleep issue and other info but i did mention the Biomarker testing but since it is squamous I think he thinks I can wait till after the chemo to check it?  Is there something I am missing about squamous NSCLC and doing the testing now vs. later?  

I am truly inspired by your journey and it keeps me very hopeful as I go on...I am so glad for you and I hope to be NED too and for many years to come...

I WILL Stay the course

Darla

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Darla,

Like the rest of my Lungevity Family, let me assure you that anxiety is part and parcel of this darned disease.  The testing, diagnosis, treatment plans and (worst of all) fear of the future all play a apart in keeping us anxious and scared.  But, you are already over some of the worst times (diagnosis, confirmation of cancer and surgery), so now you need to participate in your recovery (yes I did say recovery), you can and will return to health and in doing so you will feel less anxiety over time.  Mindfulness, breathing and a Xanax can surely help.  But also learning about your disease, asking any and all questions you have about your disease and staying away from Google will surely help reduce your feeling of uncertainty.  Many of the folks here have gone through chemo and will give you better input on that than I can as I had the surgery only.  Feel free to ask questions; especially about the things that frighten you the most.  We've all had those "wee hours of the morning" fears and feelings of isolation, but your not alone anymore.  There are great stories of survival here and remember that someone here has traveled the same path you will and can provide guidance.  The rest of us will provide our support.  

Lou

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Darla,

Most pathologist labs keep tissue samples for several years. Press your oncologist to have your sample tested for PD-L and PD-L1 markers that indicate suitability for immunotherapy. 

I really really hope your treatment is one and done, but recurrences are so frequent in lung cancer after NED producing treatment. If it were me, I’d want to know if my cancer fitted the immunotherapy profile now. So, press for the lab test. Press hard; be thinking ahead. Fortunately, we now have more than hope on our side but we need to be positioned to “T” up the next treatment method. 

Stay the course. 

Tom

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Hi Darla,

You have already received great advice and support but I just wanted to mention the LUNGevity Peer-to-Peer Mentoring that is available.  The LifeLine program will match you with someone similar in age and gender with a similar diagnosis and treatment plan.  You can communicate via email or phone as often as you would like.  It might reduce some of your anxiety to talk with someone who has been through what you are currently going through.  Here is the information for the program in case you are interested: https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring 

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