post whole brain radiation, radiation encephalopathy and tarceva role

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March 2, 2015 at 4:39 pm  #1268706    

crazydaisy232

In 2009, my mom was diagnosed with essentially stage IV lung cancer, with a small lump in her lung and metastasized to her lymph nodes in her neck and at least a dozen nodes in her brain. She was a very healthy 60 year old Asian woman. After a VERY aggressive treatment which included chemotherapy simultaneous with whole brain radiation, she is “cancer free”. She has had one small node since in her brain but that was treated successfully with one gamma knife treatment.

She was shown to have genes receptive to Tarceva and her oncologist has had her on Tarceva during and since the treatment.

Unfortunately, my healthy mom, has a very rapidly deteriorating quality of life. Within this year, if things don’t change miraculously, she may not be able to walk. She is extremely fatigued all the time. Can hardly exercise.

Her oncologist has diagnosed her with radiation encephalopathy. I have two questions:

1) Can anyone point me to a place either in the U.S. or international that is treating this type of brain injury with stem cell therapy? (I have read about the cases at the Tijuana clinic and the sources seem questionable.)

2) Could Tarceva be contributing to her fatigue and physical decline or is it really just from the treatment 5 years ago? Her oncologist claims that if she stops Tarceva there is a strong likelihood that the cancer will come back, but quite honestly, what kind of life is it to be bed-ridden? And if it could be helpful, perhaps we should take her off all medications.

Thank you for your input. I did search the posts, so I apologize if this has been addressed.

Christine

March 2, 2015 at 4:41 pm  #1268707    

crazydaisy232

I neglected to say that she has undergone occupational therapies of many sorts and her “exercise” is a ridiculous routine of maybe 15 minutes on an exercise bike. She cannot go shopping and cannot cook due to fatigue. She cannot get in and out of a car on her own.

March 2, 2015 at 8:31 pm  #1268709    
Dr West
Dr West

I’m sorry to hear about her recent complications. I don’t think her symptoms are likely due to Tarceva (erlotinib) this far out and suspect that long-term side effects of her brain radiation concurrent with chemotherapy. There have historically been very few people who lived years out from brain radiation, but as we see more people who get years out from brain radiation for lung cancer, we do sometimes see people develop late side effects that have rarely been seen before. I suspect the diagnosis of radiation encephalopathy/necrosis is an appropriate leading diagnosis.

I don’t know of any place doing stem cell therapy for radiotherapy encephalopathy. I have heard of radiation necrosis being treated with Avastin (bevacizumab), though it is not a common treatment at this point. That might be an option to discuss with her doctors, though I wouldn’t want to imply that it’s a standard treatment at this point.

Good luck.

-Dr. West

July 4, 2015 at 3:54 pm  #1270370    

My wife’s advocate

Dear Dr. West, I am not sure if you have any professional affiliation with the Swedish Radiosurgery Center, Swedish Medical Center, Seattle, Washington, USA

I read an article with much interest entitled “The management of brain necrosis as a result of SRS treatment for intra-cranial tumors” by a group of physicians whose contact person is Dr. Sandra Vermeulen, MD. at the above Swedish Radiosurgery Center.

The article suggests corticosteroids, surgery, bevacizumab and HBO (hyperbaric oxygen treatment) are all possible good treatment options for symptomatic radiation necrosis.

Any thought on these treatments and which one is the least invasive if steroids is not helping?


Wife, Asian non-smoker, 10/2010 left upper lobectomy, Diag: mod. diff. adenocarcinoma, focal squamous diff. with one AP node involvement. Dec 2010 thru Mar 2011 4 cycle cisplatin/vanorabin doublets completed. July 2011 MRI shown one 1.3 cm lesion with a 2.6 cm cystic component in rt. occipital region. Aug 2011 Neuro excision, confirmed sol. met from lung. Tested EGFR +. SRS irradiation on excision site 9/9/11, started Tarceva 9/26/11. Very difficult side effects. Tolerable after dose reduction to 100mg. Dec 2015 second brain surgery found life cancer cells in large bed of necrotic tissue. Feb-Mar 2016, 12 fractionized IMRT on right occipital lobe. Remain on Tarceva. Aug 2016 to Jun 2017 enlargement of pre-vascular lymph node from 1.4 to 2.2 cm. Mediastinotomy scheduled Sept 2017.

July 5, 2015 at 4:21 pm  #1270377    
catdander forum moderator
catdander forum moderator

Replied to here, http://cancergrace.org/topic/late-delayed-radiation-toxicity-or-side-effects-from-srs-on-excision-site#post-1270375

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