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nagynaggles

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Jessica. 38. Mother of 2 teens. Caregiver to mom whom is caregiver to disabled brother. My mom is my world and always has been. The thought of losing her totally devastates me. We have always been close, we have always called each other 2-3 times a day just to say hi. Hang out 2-3 times a week for lunch and what not. My mom was there when nobody else was. Our shopping and lunch dates have turned into biopsy, oncologist and chemo dates. I wouldn't have it any other way. It just gets hard.

June 25th was the day. I woke up so excited it was 6 months until Christmas! Shortly thereafter my 65 year old mother called me and told me she had went to urgent care last night because she couldn't breathe and they had found a 7cm mass in her left lung. Her self diagnosed pneumonia turned out to be lung cancer. My excitement had quickly turned to shock. Will my mother even make it until Christmas? She had a persistant cough that wouldn't let up with occassional tinges of blood. I had been nagging her to go to the doctor and have them recheck her COPD. I figured she was a pack a day smoker for the majority of her life they were just blanketing the real problem. The issue was they did not think it to be lung cancer as she had just had a screening in October 2017 that was totally clear. They did a PET scan which showed cancer in her lung, breast, liver, lymph nodes, and adrenal glands. Brain scan came out clear. Liver biopsy showed it to be advance stage small cell lung cancer. Breast biopsy confirmed.  Oncologist recommended a clinical trial. Without treatment prognosis was 4 months to live. My mom signed up. Unfortunately she would be unable to partake due to emergency chemo that had to be administered over labor day weekend due to a collapsed lung. She seems to be doing well for the most part but has developed a terrible cough with brown sputum. (is this normal?) The oncologist told us her cancer is so advanced that they aren't going to bother with radiation. (is this standard?) The plan now is to continue with Etopiside and Cisplantin chemo for 6 cycles every 21 days.

 

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Hi, nagynaggles, and welcome.

I'm sorry about your mom's diagnosis.  I don't know a lot about small cell lung cancer, but I think it is pretty standard not to use radiation when the cancer is widespread.  Coughing is a classic symptom of lung cancer (when it gets to a certain point, anyway), and I imagine the brown sputum is the result of blood from the cancer--another typical symptom.  

How old is your mom?  Does the oncologist have a backup plan since she won't be eligible for the trial she signed up for?

Hang in there--dealing with lung cancer is tough on everyone in the family.

 

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I'm also sorry to hear about your mom's diagnosis. As LexieCat says, dealing with lung cance is tough on the whole family. I don't know much about Small Cell LC, but hope that members who do will respond here. I wish the best for your whole family. 

Bridget O

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Nagy,

Welcome here. With your mom’s advanced stage small cell lung cancer, the coughing and blood in sputum are common symptoms. To be frank, with the number and location of her many metastasis, conventional radiation is not possible. Conventional radiation may be helpful for tumors in close proximity but with tumors in various places, the dose needed for effective treatment makes the radiation more harmful then the cancer. 

I have two suggestions for you to consider. Your mother’s discomfort is going to likely increase quickly. To manage pain, palliative medicine is a good choice. I’d ask your doctors about that alternative.

Because of the extent of your mom’s cancer, curative treatment will be difficult and will introduce side effects to already present cancer symptoms. You’ll nead to ask her doctors if curative care has a good chance of arresting her cancer. If not then you should seriously consider hospice care to ensure she does not suffer pain or discomfort. 

These are enormously hard decisions you need to help your mother make. I’ve been at this junction many times with many people. Any form of lung cancer with many distant metastatic sites is very difficult to control. Small cell lung cancer raises the bar of difficulty because it spreads so very quickly. 

I could sugar coat my response, but this forum is all about answering the tough questions. My treatment experience was rigorous and uncomfortable but my tumors never moved out of my lung. Still it took three surgeries, 18 infusions of Taxol and Carboplatin, conventional radiation and precision radiation lasting almost 4 years. The side effects from the many treatments were very hard to take, but the fact that the tumors were confined to my lung held a possibility of arresting my cancer. Had my tumors been as wide spread as your mom’s, I would have made different choices. 

More questions? This is the place. 

Stay the course. 

Tom

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Chances are, the cancer had been growing and spreading for a while before she experienced any symptoms.  And small cell cancer is more aggressive than non-small cell (what most of us here on the forums have).  I'm glad there's a plan to make her feel more comfortable.  

Please keep posting here--we want to support you and your mom through this.  I was 31 when I lost my mom to metastatic breast cancer--she was in her early 50s.  We were very close, too, though we lived in different parts of the country.  I know how tough this is for you.

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I am so very sorry to hear about your mom's health situation. When you described your relationship with your mom, it was like I was describing my relationship with my mom. I do not have kids, but my mom is beyond my best friend and closest confidant. My mom too, is a caregiver but for my dad who is disabled. I have no answers or suggestions for you or you mom. I just want to let you know I am here for you. I understand the fear, frustration, and anger that comes with a loved ones's lung cancer diagnosis. I am so very sorry. Please reach out to us whenever you need. We are here for you. That is why I joined LUNGevity, for the support. And I have gotten it. I am thinking of you. The next time you see your mom, please give her a soft hug from me. And give yourself one from me too. 

Take care,

Steff

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Thank you all for your support. It is a tough pill to swallow. Like a bad dream you want to wake up from but it doesn't  go away. Working through the emotions the highs and lows not knowing how to think or feel. I feel as though I have been in a fog since it all started and yet I know the worst is yet to come. It's just hard being strong for everyone when you just want to crawl up into a ball and sleep.

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While you're being strong for everyone else, try to take care of you, too.  You might ask at your mom's hospital whether there are any caregiver support groups.  Remember to eat well and get some rest when you can.  And if you can give yourself a break with a good book or movie once in a while, do it.  Or whatever else comforts you or makes you smile.  I had a couple of terrific books I used to lose myself in when my mom was sleeping.  

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I know the fog all to well. I don't know how I got thru the fog, I just kept moving forward. I was lucky that my husband was working nights so I could come home from work and cry. That went on for a long time. I finally gave in and talked to my own doctor who suggested I try an antidepressant. I'm not a fan of them for myself but went ahead and tried it. I felt much better after a few weeks and the fog started to lift. I would like to say "take care of yourself", but we both know that's probably the furthest from your mind. You will survive this fog. You are showing your teens what it means to be a strong woman by taking care of your family, even if they see you break down. That shows them you are also human.

Take care

Steff

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