What is prognosis of "Too numerous to count brain metastases"? - 1246110

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kelleylynn129
What is prognosis of "Too numerous to count brain metastases"? - 1246110

My mom was Dx with stage IV NSCLC, adenocarcinoma with too numerous to count brain metastases and diffuse bony metastases involving both femurs, pelvis, both iliac bones, rt scapula, ribs, thoracic spine and lumbar spine. Has had 5 weeks of radiation to center of chest, whole brain radiation and just had 2nd treatment of chemo (carbo/alimta). Barely can walk on rt leg due to gait problems and loss of balance, due to cancer in cerebellum. She also had another MRI last week of brain because her walking/balance were getting worse and it only showed a SLIGHT decrease in size of some lesions but again stated there were "too numerous to count metastases in brain". Surely someone has an idea of what her prognosis is? Please my family just wants to know what to do and what we are going to face in the next few weeks/months???? thank you

Dr West
Reply To: What is prognosis of "Too numerous to count brain

There is certainly a range in how patients do with brain metastases. I have some patients who remain alive for literally years and have an excellent performance status (few, if any, limitations in activities, and feeling well) for a very long time. But brain metastases do confer an overall worse prognosis that is often associated with a median survival of a few months...the median being the point at which half of the patients in that group have died, and half remain alive. Meanwhile, response to the treatment in terms of both improvement in symptoms and imaging looking better are associated with a much greater chance of doing relatively well, while the opposite is true for people who are not doing much better and/or have no improvement or especially worsening of findings on imaging. It's worth noting, however, that it's not rare it to take several weeks or even possibly a couple of months to really see more significant improvement after treatment.

If she's not improving at all, and especially if she's getting worse based on either how she's doing clinically or on how her scans look, then the cancer may well be very aggressive, and her survival may be limited to weeks, I'm sorry to say. But if she turns around, there is reason to be hopeful that her survival could extend into many months and potentially a year or years.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: What is prognosis of "Too numerous to count brain

Hallo kelleylynn. I'm sorry about your mother.
I wanted to reinforce Dr West's point - that you wouldn't necessarily see positive changes on an MRI straightaway (it sounds as if the brain radiation only ended a few weeks ago?). Also to mention that radiation sometimes makes things worse before they get better. So it's possible that her balance problems might improve.
When you asked what to expect, your mother is going to be very tired after the radiation, especially if she's having chemotherapy as well.
I know that the idea of the mets being "too numerous to count" is very distressing. Just bear in mind that they may be very small, so it would be like trying to count stars or grains of sand. My best wishes to your mother, and to you.

kelleylynn129
Reply To: What is prognosis of "Too numerous to count brain

Thank you, thank you, thank you so VERY much Dr West and Certain Spring. My family and I are just having a hard time in this limbo stage and we were so upset about hearing the words too numerous to count. She actually just ended her WBR last Friday the 27th, the same day she had her 2nd round of chemo (carbo/alimta). We are going to see the radiation oncologist tomorrow and I hope he has good news. Any advice on further questions I should ask him???

Thanks again so much, I really appreciate the responses!!!

JimC
Reply To: What is prognosis of "Too numerous to count brain

Hi kelleylynn,

As certain spring pointed out, a follow up MRI done just as WBR was ending is not likely to give any information about whether the radiation was effective. The radiation used to treat cancer is not like a ray gun that melts away the cancer cells on contact; on the contrary, it can take weeks to kill the cancer cells. That can take a while to show up on a scan. You may want to have the radiation oncologist go over that process with you tomorrow so that he can give you a sense of what to expect at this point in terms of what the scan should show and how quickly to expect an improvement in symptoms.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

marisa93
Reply To: What is prognosis of "Too numerous to count brain

Hi kelleylynn,

I am very sorry about your mom. I just want to let you know from my experience w/my husband and his WBR that it took a little time to see the improvements after WBR. He was a stage IV NSCLC adenocarcinoma w/many brain mets also. I know it is a very scary time and I am sending best wishes to you all. You have come to a good place to gather info. Take care.

Lisa