14 months after Brain Mets and Whole Brain Radiation

4khansen
4khansen Member Posts: 2
edited August 2017 in Ovarian Cancer #1

My wife has now survived 14 months since diagnosis/treatment of brain mets from ovarian cancer.  Last MRI still showed two small mets visible (down from an original 5 mets that were large enough to measure, she had numerous microscopic brain tumors also).  Her CA-125 at original OVCA diagnosis was 369, then retreated to 4 after chemotherapy then bounced to 26 when brain mets were discovered 16 months after beginning this journey.  Today her CA-125 is still 5, 14 months after WBRT (whole brain radiation).  Some current issues as expected with WBRT, lack of stamina, short-term memory issues, some taste issues with food, sight is still not quite back to normal and dizziness/balance issues.  Fingers crossed it doesn't get worse. 

Is there anyone out there with long-term issues from WBRT??? If so, how are you doing?  what is going on? 

So few people with ovarian cancer have their first recurrence be brain mets, ugh!!  She is still NED elsewhere in her body and has been since the 3rd round of chemo and debulking that was completed 1/2015.  She is BRCA 2 positive and has had a preventative mastectomy.

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    4khansen~Wife's CA-125# seem stable~that's a good thing

    Dear husband:

    Not being familiar with anyone posting right now w/OC and metastasis to the brain, I’m probably not the best person to talk to.  However, when starting to look on the web, one of the first links I came across was from a gentleman who obviously writes on this CSN site regularly.  It appears that his wife passed from OC w/mets to the brain.  I see that quite a few women entered into a discussion with him on this one link although it was years ago: https://csn.cancer.org/node/228961.  Most of those who post on this site indicate they wish to be able to receive private messages, so you might want to click on Mr. Pawel’s picture.  From there you will access his “about me” page.  From there you can send him a private message if you so desire. 

    WBRT is not something I personally know anything about.  I’ve had a couple of headaches, and so my next scan will include a CT of the brain.  Sure hope I don’t have mets there, but till I see the scan, I’m “not going there.” 

    I have conversed with people on the Esophageal Cancer link who said they would never have encouraged their relative to go ahead with whole brain radiation treatments, had they known of the many cognitive changes.  But then again, each person has to weigh their options and make their own conclusions.   It’s a delicate decision.  I’m encouraged that your wife’s numbers have been this stable.  I think that’s a good indication that she must be enjoying (dare I use that word) a good period of stability.  Would that we could all enjoy some “progression free survival” for a long, long time without our CA-125 numbers increasing.  With WBRT, I’m not surprised that she would be exhibiting the side effects that you have mentioned, but they seem mild in comparison to others I have read about on the EC site. 

    So forgive me for not being able to give you any “first-hand” knowledge re primary OC w/mets to the brain.  Perhaps there are others here who have been posting longer than I who can give you some insight into WBRT.  I have been “surfing the web” (the only exercise I like) and find that there are many articles regarding brain mets.  So I have listed some of them below my name.

    Hopefully, your wife’s numbers will stay this low for a long time and no further side effects will emerge. 

    Prayerfully,

    Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV since Nov. 2012 but NOT NED!

    ______________________________________________________

    1.       https://www.cancer.gov/types/metastatic-cancer

    “Metastatic Cancer

    In metastasis, cancer cells break away from where they first formed (primary cancer), travel through the blood or lymph system, and form new tumors (metastatic tumors) in other parts of the body. The metastatic tumor is the same type of cancer as the primary tumor.

    What Is Metastatic Cancer?

    The main reason that cancer is so serious is its ability to spread in the body. Cancer cells can spread locally by moving into nearby normal tissue. Cancer can also spread regionally, to nearby lymph nodes, tissues, or organs. And it can spread to distant parts of the body. When this happens, it is called metastatic cancer. For many types of cancer, it is also called stage IV (four) cancer. The process by which cancer cells spread to other parts of the body is called metastasis.

    When observed under a microscope and tested in other ways, metastatic cancer cells have features like that of the primary cancer and not like the cells in the place where the cancer is found. This is how doctors can tell that it is cancer that has spread from another part of the body.

    Metastatic cancer has the same name as the primary cancer. For example, breast cancer that spreads to the lung is called metastatic breast cancer, not lung cancer. It is treated as stage IV breast cancer, not as lung cancer…”

    ______________________________________________________ 

    [My note:  I don’t want to throw cold water on what I think is your relatively good report, all things considered, but I will put some references here for your information.  Some are not too encouraging, but for the sake of research, I will list several here.  Some will be videos.]

    2.      http://www.curetoday.com/articles/for-small-brain-metastases-side-effects-of-whole-brain-radiation-outweigh-benefits

    “For Small Brain Metastases, Side Effects of Whole Brain Radiation Outweigh Benefits

    When cancers that originate elsewhere cause small metastases in the brain, initial treatment should not routinely be followed by whole brain radiation therapy, because that strategy dramatically increases the chances of cognitive decline without improving survival outcomes…”

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    3.       http://theoncologist.alphamedpress.org/content/11/3/252.full

    “Brain Metastases from Epithelial Ovarian Cancer: A Review of the Literature

    _Abstract

    Background. Brain metastases from epithelial ovarian cancer (EOC) are rare. This report is based on a review of the literature

     Methods and Results. This review summarizes the incidence, clinical features, pathophysiology, and diagnostic evaluation of EOC. The section on current treatment includes a thorough evaluation of the literature, highlights controversies over treatment options, and provides insight into novel approaches. Current treatment options include surgical resection, whole-brain radiation therapy (WBRT), stereotactic radiosurgery, and chemotherapy. Corticosteroids and anticonvulsant medications are commonly used for the palliation of mass effects and seizures, respectively. In the reviewed series, a better outcome was seen following surgical resection and WBRT with or without chemotherapy for solitary and resectable brain metastases.

    Conclusion. The prognosis for patients with brain metastases from EOC is poor. A better outcome might be obtained using multimodality therapy. Because of the small number of patients included in the reported studies, multicenter clinical trials are needed for further investigation in order to critically evaluate the clear benefit of these treatment options in selected patients…”

    ____________________________________________________    

    4.        https://www.ncbi.nlm.nih.gov/pubmed/26909613

    Effective use of PI3K inhibitor BKM120 and PARP inhibitor Olaparib to treat PIK3CA mutant ovarian cancer.

    _______________________________________  

    5.      https://www.bing.com/videos/search?q=videos+whole+brain+radiation+therapy+from+ovarian+cancer+mets&view=detail&mid=84886B736C78A994EDF584886B736C78A994EDF5&FORM=VIRE

    “Whole Brain Radiation and Radiosurgery in Patients with Brain Metastases”

    _______________________________________________________ 

    6.      http://www.onclive.com/publications/obtn/2011/december-2011/brain-metastasis-common-in-ovarian-cancer

    “Brain Metastasis Common in Ovarian Cancer…”

     “Alice Goodman | January 20, 2012

     Half of all women with advanced ovarian cancer who develop brain cancer have a single metastasis to the brain. Compared with those who have multiple metastatic sites, women who have a single metastasis in the brain have improved survival, according to a retrospective study reported at the 2011 annual meeting of the American Society for Radiation Oncology.

    Ovarian cancer patients with multiple metastases to the brain are also more likely to have leptomeningeal disease, in which cancer cells spread throughout the spinal fluid…”

    ___________________________________________ 

     7.      https://www.bing.com/videos/search?q=videos+whole+brain+radiation+therapy+from+ovarian+cancer+mets&view=detail&mid=5B9FA23AAD348C6963C75B9FA23AAD348C6963C7&FORM=VIRE

    Dr. Jyoti Patel on Delaying Whole Brain Radiation for Brain Metastases – YouTube 6/26/2015

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    8.      https://www.youtube.com/watch?v=S64_HPB2DCs

    “When cancer spreads to the brain

    MD Anderson Cancer Center Published on Oct 7, 2013

     Download from iTunes: https://itunes.apple.com/us/itunes-u/... 

     Several cancer types can spread to the brain including lung, breast, melanoma, renal cell carcinoma and gastrointestinal tract cancers such as colon and rectal. Secondary brain cancer (cancer that has metastasized to the brain) is more prevalent than cancer beginning in the brain (primary cancer). Ivo Tremont, M.D., assistant professor in Neuro-Oncology at MD Anderson Cancer Center, discusses how cancer migrates to the brain, how it differs from primary brain cancer, as well as secondary brain cancer treatment and research.”

    ___________________________________________________________________ 

     9.      https://www.youtube.com/watch?v=rjjrV1NLwKk

    Understanding Brain Metastases An Overview of Treatment Options and Care Guideline

     BrainTumourFdn - Published on May 29, 2013

     Presented on Wednesday, May 29, 2013, 12:00pm - 1:00pm (EST) by: Hellen Jung, Clinical Nurse Specialist, Fast Track Lung and Brain Mets Clinic, Tom Baker Cancer Centre this webinar offers the following learning objectives:
    Learning Objectives
    - The epidemiology of brain metastases
    - The common management of brain metastases
    - Increase understanding of complexities surrounding treatment decisions

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