WBR Improvement after late toxic symptoms - 1258809

badita
Posts:6

My husband had WBR in 2006 after surgery for lung tumor metastases in the brain. Three years later he has developed slowly and progressively a neurocognitive impairment: dementia, lethargy, problems with speech and swallowing, incontinence, problems of equilibrium and inability to manage his body. Until recently he lay in bed or in a wheelchair and was totally dependent. Two months ago he began to improve. Today has better cognitive level, can walk, talk, eat alone and have no more incontinence. Is there any explanation for this inexplicable improvement?

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Dr West
Posts: 4735

To be honest, your husband's course is remarkable in every way. People alive 7 years after having brain metastases from lung cancer are exceptionally rare, and we're only beginning to see enough people alive 2-3 years later to learn that several of these people develop degenerative brain problems as a long term side effect of the radiation. Up until the last few years, people didn't live long enough to experience long term side effects from WBR for brain metastases.

Could he now be experiencing a healing process after neuronal damage from the radiation so long ago? I'm just speculating, but I think that's possible. But what to expect from here is anyone's guess. You and he are in pretty much uncharted territory -- I congratulate you and thank you for giving me a new sense of what is possible.

-Dr. West

catdander
Posts:

Wow, what an incredible story. Thank you for posting even if you don't get answers here it helps us to see something so positive in such a dire situation.
Congratulations to you and your husband!
Keep us posted.
Janine

btlaw123
Posts: 45

This is very amazing. I am so happy for you. Is he on any active treatment for the delayed toxic symptoms? Or is there any changes in his daily living routines that may have trigger the turn around in his functional mobility?

badita
Posts: 6

Dear njliu,
He doesn’t want any maintenance treatment. Today he takes only 5 mg escitalopram to deal with depression. Since August 2012, after his doctor diagnosis him the third metastasis back in his lung, he received palliatives care at home because he strongly rejected any type of oncology treatment or additional studies. All he wanted is to let he be in peace. When morphine doesn’t work anymore the palliative care team started talking me about induced coma to prevent his suffering. At that moment he spontaneously started improving. Today he is not as well as he was 6 month before, but he is ok and has a good quality of life. Of course we are supported by physicians, caregivers and psychologist at home. We don’t know what has happened with his neurological disease neither with his lung metastasis. The medical team backs me about no more oncology treatments because this is his will and there is not a healing prognosis.
We go out to dinner, lunch or just to take a coffee everyday. All I give him is peace, harmony and love. I enjoy any precious moment I share with him.

badita
Posts: 6

to My wife's advocate,
He denies any maintenance treatment. The only change in his daily living routines is that we don’t fight anymore: “I let him do what he want to do”. If he wants to do kinesiology it’s ok. If he doesn’t it’s OK. If he wouldn’t like to receive the doctors, then I leave him to dismiss them. He hates the hospital, so no more tomography. Let him rest all time he wants!! I finally accept that the love of my life is the only owner or his life.

watu
Posts: 45

Very interesting story. Thanks for sharing.
In our case, my dad developed that neurocognitive impairment soon after the WBR. It started with extreme fatigue and progressed over a few weeks towards significant neurological impairment. We are now almost 4 months after WBR and dad spends most of his day laying in bed or sitting a few hours in a wheelchair, sleeping and with a number of other neurological problems.
Although our oncologists believe this is mainly due to the progression of the cancer, the neurologist does not exclude these are also (or mainly) symptoms of radiation-induced necrosis. Nobody knows why dad reacted so badly to the WBR, although the treatment apparently was really effective (his last CT scan was almost clear, showing just one single 6mm brain lesion left - of the 4 fairly large lesions he had).
He is currently just on dexamethasone and nimodipine. Nothing really makes us optimistic for the future.
We continue with palliative care, trying to make him feel (at least) comfortable.

badita
Posts: 6

Nor Lung cancer neither brain cancer could kill my husband. Medical malpractice did. He died due to sepsis caused by aspiration of the nasogastric tube that had been placed after surgery to remove a chronic subdural hematoma product of some old unknown bump. He survives the surgery without any problem but he died for respiratory aspiration. It’s madness. He never gives up. He was a hard warrior. My eternal gratitude to surgeons and Oncologists who made possible the miracle that he survives the last 10 years.

JimC
Posts: 2753

badita,

I am so sorry to hear of your dear husband's passing. He fought a brave battle against cancer, and I am glad that the two of you were able to enjoy so much time together after his diagnosis.

Sincere condolences to you, with a wish for peace and comfort.

JimC
Forum moderator

catdander
Posts:

badita, I'm very sorry to hear about your husband's passing please accept my condolences. I want to let you know how loving your comments were about letting your husband live out his life as he wished. I know how difficult it is to let go of the decision making process but I know you would wish the same for yourself.

With hopes for peace,
Janine