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New here and praying for a miracle


kelley

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Hello everyone. I am fairly new to the board, been lurking a bit but this is my first post.

My step-mom was dx with LC this summer. She is 46. After months of recurring bronchitis a trip to the ER for severe pain finally saw what the dr missed - a 9 x 7 cm mass in her lt lung. That was 6 weeks ago, since then the tests have shown that she is in stage IV, has a 2nd mass on Hillium (not sure of spelling or what that is yet), enlarged heart, met to her lymph nodes and adrenal gland. We were told this info at her appt with "The Dr" to see at Sloan NYC 2 weeks ago. His opinion was that she was inoperable and incurable, there was no hope. He offered a timeline but she as well as I did not want it as this seems to be a morbid defeating discussion. Meds were uped to morphine and chemo for pain mgmt for "the rest of her life" was to start this past Wednesday. The day before they cancelled the chemo and resched for probably next week bc they had not had a chance to evaluate new blood results. In the last two weeks she has gone from a woman in extreme pain to unmanageable pain. She has had 6 Blackout episodes where she simply is fine one moment and the next on the floor. She can not sit or lay for any period of time due the pain. The last few days both of her ankles and legs have swollen to 3x their size.

After HOURS of waiting for a callback from onc at sloan we brought her to the er last night. We are now awaiting results of brain and bone scans.

I am sorry for my rambling, my thoughts have been a mess for a month now. I guess I am looking for guidance. I can not believe there is no point in trying treatment - And I do not know what to expect from here.

I would definately stand by a decision of pallitive care if that was the best choice but Im not sure that it is. I feel the DR saw alot of progression and didnt think it would help.

While this is my step-mom she is really like a mother/sister to me. SHe was much younger than my dad when they married her 18 me 7. My mom passed when I was 16. In a way we grew up together. This is now the woman that is the young and fun grandma in my childrens life. She can get down on the floor and play, run for hours etc. Or at least she used to be able to. My kids are so confused.

Im SOO sorry Im babbling again. Thank you for your time as I know that everyone here has a situation of their own that they are working with.

God Bless.

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Kelley,

I don't have much to offer for advice since I definitely am not an expert at this. However, I am glad that you found us and hope that you continue to post.

The only advice that I can offer is perhaps getting a second opinion. It doesn't seem right that she is in that much pain and things are being delayed by the doctor. I think the older I get, the more mistrust I have for doctors, and the more likely I have been to get a second opinion..it doesn't hurt anything and from what I've read on here, can only help at times!!

Wishing you well,

Debi

47 years old

Stage 1A-nsclc

Surgery June 16, 2003, upper & mid lobe removed

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Kelley,

Having had a 5cm tumor in my left upper lobe - reading your posting was very difficult for me and brought back some very powerful emotions. I feel your pain and relate to the dismay you're experiencing. Know that even in end stage cancer, pain as you describe can effectively be managed. You may want to consider enlisting the help and assistance of a hospice in your area. These are staffed with compassionate people that will help your stepmom and your family transition from shock, fear, and dismay to acceptance while retaining dignity and hope. I pray that God sees you through these terribly difficult times.

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Hello Dear Kelley,

What you and your father must be going through right now is nothing other then horrible. I cannot imagine an onc not answering your calls and you all having to take her to the er. I think I would find another onc. Seems to me he has his mind only on her passing....their are many many more onc that are great and will try hard to help the patient survive or get through the bad times....

every hospital has a pain management team, inquire with the drs or nurses to have someone come and see what they can do for her.

I will say a special prayer for her this evening and every evening thereafter until she is out of pain and on the road to recovery, - - God willing.....

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Kelly,

No need to ever apologize for babbling. That is what we are here for, to listen and give advice, support each other and offer comfort.

I can't offer too much advice other than I would definitely check into second opinions. Even at the same facility there may be another doctor who is more in line with the fighting spirit you have, or the desires of your step-mom. There is no need for suffering, at least not unmanageable suffering. She deserves help, she deserves dignity and peace. And I am also a firm believe that the game isn't always over when the doctor's say it is. They don't know our timeline, and sometime treatment can have shocking results that will offer a loved one a lot more time.

I am praying for you and for your step-mom,

Carleen

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Kelley - The hilum is the central chest area where the main airway (the trachea) diverges into the left and right main bronchi, forming the large airways in the right and left lung. The main bronchi further divide into smaller bronchi, even smaller bronchioles, and finally the tiny air sacs, alveoli. The hilum (adj.: hilar) is where the two main bronchi enter the lungs - it contains a rich blood supply and lymph nodes, compared to the outer portions of the lungs.

- Teresa

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