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Mom recently diagnosed with stage IV NSCLC


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I am the 25 year old daughter of my 48 year old mother who was diagnosed two weeks ago with stage IV non small cell carcinoma. It started with a trip to the Emergency Room for headaches that had been ongoing and worsening for about two weeks. In that visit the xrays found two tumors in her brain. The doctors performed a crainiotomy to the frontal lobe to reduce the swelling and pressure and relieve her of the worst pain. The neurological doctors have done an amazing job and have made her almost back to the mother she was prior to her headaches. Now she is going to radiation for the full brain hopefully to get rid of the remaining tumor. If the radiation does not work as hoped she will either receive a gamma knife procedure or another brain surgery.

After the surgery mom has been prescribed Dexamethasone (steroid) for the swelling to the brain, Darvaset (pain killer) for pain of the surgery and head aches from the remaining tumor, Colace (stool softner), Keppra (anti seizure meds) not that she has had any but as a prevention and Pepcid for acid relief because of the steroids. She can't see very well out of her right eye, she actually is having poor vision all around, but the right side is much worse. Her headaches are nothing in comparison to the original headaches though. She still has slightly slurred speach, she doesn't seem to control her thoughts as she speaks out loud about absolutely anything, she stumbles a little when she walks but other than that she is doing incredible. I think this is the reason I am so confused.

Once the original tumor was removed from the brain a biopsy was performed and the doctors have said it's marking, although not clearly, is lung cancer. Since the lung cancer has spread to the brain it makes it stage IV. We just saw her lung oncologist for the first time and he really scared us. He says all he can do is treat the cancer with chemo and that it won't treat the cancer only prolong life. Mom is fighting and strong but this doctor said her life expectancy is only 2 weeks to a year. We are very confused as a family because she is so healthy other than this hidden disease. He says he wants to perform a PET scan, so I assume this is a more thorough test to see if there is infact more cancer throughout her body. Also he says at our next visit, after radiation is complete, he will have a port put into her chest for chemo, blood tests and ivs.

I am also trying to jump through hoops for the state to get good healthcare for my mother becausec she was and is uninsured. I am working with Dept of Health and Human Svs to get Medi Cal established, that is an incredible task in itself. I am 25 yrs old, fortunately I don't have children to care for so mom is my first and foremost concern. I've moved her into my home and have taken FMLA for the next 6 weeks to be with her and care for her as she is not even allowed to drive. So I am also working with the state for assistance for myself for these few weeks, months or years?

I'm sure there is more, all I know is that I greatly appreciate a site like this. Mom is too tired to attend counseling or support groups at the hospital. We both feel like we spend 90% of our days there anyway. Thank you ahead of time for all the help.

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Hi, Haley, welcome to the group! Sorry I missed chat -- it comes a bit early in the day for me, and I've made only a few sessions.

We have a number of members who were diagnosed stage IV years ago and are still doing well, and you'll probably be hearing from some of them soon. We don't put a lot of stock in statistics, as you may have discovered already.

He says all he can do is treat the cancer with chemo and that it won't treat the cancer only prolong life.

I believe he probably said (or meant to say) "cure" instead of the second "treat," and that is generally considered correct for stage IV (and IIIb, my stage). The word "cure" has a specific meaning in cancer: 5 consecutive years with no evidence of disease (NED). But even if we can't reasonably expect to cure these cancers, it's becoming possible to manage many of them as a chronic condition long-term or even indefinitely.

It sounds as if your mom is receiving aggressive treatment, and that's possible because of her overall good health. Let us know what chemo drugs are planned and those of us who have had the same ones can give you some tips on side effects. Your mom is very fortunate to have you as her helper and advocate. Best wishes and Aloha to you both,

Ned

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Haley,

You have alot on your plate! I'm so sorry you and your mom are having to deal with all of this. She is very lucky to have you in her corner fighting with her. It sounds that you are doing everything right and have stayed very active in her healthcare! Hats off to you!!

Welcome to the board and I will certainly keep your family in my daily prayers!!

God Bless!!

Jamie

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Hi Haley-

Welcome. We met in chat last night. So glad you posted an introduction.

Remember what we told you last night - we don't believe in statistics here. I am living proof of that!!!! You and mom just keep fighting!!! Never give up!!!

Your mom is so lucky to have you by her side. Please, please keep us posted on her progress. And take good care of yourself, too!!

Hugs - Patti B.

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I am utterly amazed and almost speechless. Mom and I have so many friends and family that care and check up on us. But all of you and your kind words are absolutely a god send. Thank you and I will most definitely stay in touch. I'm trying to familiarize myself with the site, so hopefully i did this correct :)

Thanks again, my prayers are with all of you and your families.

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