Recurrent Brain mets? - 1264225

cmcintosh
Posts:12

Hello, Its been a while since I have posted here. My husband has been doing Alimta as maintenance therapy for two years now and it has really done well for him. He has had a few spots pop up here and there and had radiation for them. He was diagnosed with brain mets in April of 2012 and had 15 tx. of WBR. In the past couple of months he had noticed his vision was getting worse and worse (which he has no side vision on the left side of both eyes now) and he would say "my equilibrium is off". Then in the past month I noticed little things like anytime he opened a cupboard door he wouldn't shut them..EVER. And then this past weekend he started walking in a way I could tell he was trying to keep his balance and he was not thinking correctly. I called his oncologist and we got him in for a brain scan and it shows the previous radiated area is almost doubled in size. Started him on Dexamethasone 4mg three times a day for 2 weeks and the very next day he was walking normal and back to his normal self. He still doesn't think very quickly but he is almost normal. They are going to start him on Avastin in 3 weeks when he gets his next dose of Alimta. We have been told that if it helps it is radiation necrosis vs. tumor. If it is tumor then possibly do stereotactic radiation. My question truly is this.....either way.....what does the prognosis look like? He is 2 years out WBR and his onc and radiologist have both told him that given his stage 4 diagnosis and it being 3 years that he is already in that low percentage that survives beyond their expectancy. I know beyond a shadow of a doubt that only God knows for sure but out of experience with all cancer patients in your care....what are we looking at? His last brain scan in March didn't show these changes and this is just 2 and 1/2 months later with doubling in size. Does necrosis usually happen that fast? He has one small area on both shoulders and then one on the rt. arm. Thank you for your time.Carla

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Reply # - June 7, 2014, 01:14 PM

catdander
Posts:

Following is Carla's husband's bio,

Husband 51 on January 24 2014 Dx 07/2011 with adenocarcinoma stage IIIA lung cancer/unoperable tumor in Left lung and into the mediastinal lymph nodes. Chemo of carboplatin/paclitaxel once a week x8weeks & concurrent chest radiation x35 tx. 10/2011 tumor shrunk from 8.5 to 4.6. Started Tarceva 150mg 12/2012. CT scan 03/12 showed improvement to lung & lymphnodes. 04/12 MRI of brain (d/t light flashes in eyes) showed brain mets with WBR 12 tx, PET scan on 06/06/12 bone mets to hips and spot on shoulder blade. Tarceva stopped, radiation to hips started on 06/07/12 for 15 tx and to start Alimta on 06/12/12. Remains on Alimta at this present time (Dec. 12, 2013), had all of his teeth extracted (15) d/t poor shape and needed to start on xgeva a bone strengthening med. Did radiation 5 tx. for a spot on his rt. elbow and another spot on rt. shoulder blade in October 2013. Still works full time job. 06/03/14 area to brain/ rt. occipital lobe has almost doubled in size. Dx. either reocurrant tumor or radiation necrosis.

Reply # - June 7, 2014, 01:18 PM

catdander
Posts:

Hi Carla, I pasted your husband's bio on the previous post to give the doctors context to help form comments. However you question about prognosis is impossible for even his doctors to give with certainty. Everyone is different. It could be that the swelling can be kept under control. I will contact a doctor for comment and you should hear back in a while.

One question. Are you saying they want to see if avastin affects the brain? It would be unusual for it to cross the blood brain barrier and very unusual to make decisions based on that outcome.

I hope your husband continues to be an outlier. All best,
Janine

Reply # - June 7, 2014, 04:15 PM

Dr West
Posts: 4735

Carla,

I think patients and caregivers don't appreciate that nobody on the planet has a collection of hundreds or dozens or even more than a stray handful of patients with radiation necrosis in the brain or any other extremely specific situation. His doctors are about 1000x better equipped to say what to expect than anyone on a website who has never seen your husband or his scans. I find it easy to believe that they don't know either, but if anyone online or a well-meaning friend offers you an answer, you need to understand that it's completely made up and of no value.

I wish I could be more helpful, but you are asking about things that are completely unique to your husband's case. Nobody has experience with a bunch of patients like your husband to guide what to expect. In truth, many people have one or more aspects of their case that are very unique. As a control freak, I like to be able to predict and tell people about what is likely to happen, but that's often just plain impossible.

Good luck.

-Dr. West

Reply # - June 8, 2014, 06:17 AM

cmcintosh
Posts: 12

Thank you Dr West. Actually you just confirmed what I already knew in my heart and head but felt impelled to ask. I was really wondering, I suppose, if any of you had dealt much with this condition. His doctors (who we regard with the utmost respect and trust VERY much) have told us that not a lot is known at this late stage after radiation. Thank you for your time and response!

Reply # - June 8, 2014, 06:23 AM

cmcintosh
Posts: 12

Catdander, from what I have read and from what the doctor has said, Avastin is being used to stop the progression of and in some cases reverse some of the damages caused by radiation necrosis. However, I did read that not a lot is known in late effects of necrosis. So for now it is where we are placing our hope.

Reply # - June 9, 2014, 12:32 PM

catdander
Posts:

Thanks Carla for the response and lesson :) . I did a search on Grace just now to educate myself on the concept of treating radionecrosis of the brain with avastin. From our faculty member Dr. Loiselle, a radiation onc I found this most encouraging statement. He said, "In such a case as you described, if an MRI and/or other imaging studies (like a brain PET/CT since you are years out from treatment) strongly suggest radionecrosis, treatment with bevacizumab (Avastin) can in many cases dramatically reverse symptoms related to radiation necrosis." http://cancergrace.org/topic/late-delayed-radiation-toxicity-or-side-ef…

The problem with trying to guess at what your husband's lung cancer will do is there are so few people (but it is a growing number) who survive wbr years out. For example we had a member describe her husband's case. He had post wbr neurological problems that began to reverse 5 years post tx. My husband is a wonderful outlier, in 2009 at 53 he was dx stage 3 nsclc unresectable (though an open thoracotomy was needed for biopsy damn cancer) and was treated with curative intent with concurrent chemoradiation but soon was found to have vertebral met then a year later another lung met. Longer story shorten, no positive biopsy tissue on the mets but both were thought to be cancer. We have to question that now and live with hopes that he continues to be NED or has a very indolent cancer, or is cured. Either way his primary tumor was enough to kill most people and it didn't.

For outliers like our husbands stats mean even less. No one has enough data on people like them to even make guesses. No one really fits into that space of median anyway, it's a formula using hundreds of people not a person and every person's cancer is individual.

For a person who's lived with stats being a gauge for decision making I believe in hope when it comes to cancer.
If you made it to the end of my rant, thanks,
Janine

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