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Thread: Brain Cancer

  1. #1
    Newbie New User
    Join Date
    Jun 2019

    Brain Cancer

    Hi, I am new to this site. In April of 2018 I started experiencing seizures that only involved rapid movement of my eyes and head followed by blurred vision. I went to the ER where they told me I was having “focal seizures”. I had a CT scan and an MRI. That’s when I was told I had a large tumor on the right side of my brain. On April 16, 2018 I had surgery and they removed most of the tumor. They said they couldn’t get all of it because they would’ve damaged important parts of my brain and I’d likely be left paralyzed. The biopsy results showed that it is a grade 2 glioma. When my neurooncologist went over the biopsy results with me she said it is graded a 2 but it has some grade 3 behaviors as well. I went through 28 days of radiation and chemo ( temozolomide). My neurooncologist wanted to treat my tumor aggressively because she feared it was under graded so after radiation and chemo for 28 days straight, she then had me doing 5 days of chemo every 28 days for 12 months. My most recent MRI scan (June 6, 2019) shows that the tumor is progressing. All of my MRIs the past year they have been telling me I’m ok. And initially they said my most recent MRI was ok and showed no signs of progression. But my doctor reviewed the scan and compared it to one I had in November and saw a major difference. I feel like this is something that should’ve been noticed sooner. I decided to go for a second opinion and my new doc is going to keep me on the same treatment regimen for now considering I’m past due for my treatment and she is going to have me do another MRI in 4 weeks instead of the usual 3 months. On my next visit with her she is going to let me know if it is possible to have the tumor reresucted and or more radiation. But she told me it’s a possibility that I won’t be able to do either of those. She is also looking into possible clinical trials.

    Is there anyone on here that can offer any advice for my situation? I’m looking to specific diets that might help but every time I’m excited about the thought of a special diet I end up reading other things that make it sound not so promising and like it would be a waste of time.

  2. #2
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014

    I'm sorry to hear of your current situation with brain cancer, and I can understand your desire to try as many things as you can to alleviate your symptoms. That said, we take a more scientific approach on this forum, and we don't advocate for "treatments" that aren't scientifically and statistically proven to actually treat cancer.

    When it comes to nutrition, your diet is very important, especially as a cancer patient. Good nutrition is essential for helping your body heal, and providing it with energy to get through the physical pain that sometimes comes with treatment. That said, for many cancer patients, it's difficult to take in calories. You're either nauseated from chemo or medicine, too tired to have an appetite, or it's difficult to eat regular foods due to side effects like oral mucositis. Sometimes, any calories you can tolerate consuming are all you can manage.

    That said if a diet can provide you with the proper nutrients, and if you can manage to eat food and hold it down, by all means eat what you like. I would avoid the "extreme" diets consisting of juices or vinegar that attempt to change your body's chemistry to ultimately kill the cancer. I would also advise discussing whatever diet you're looking at with your oncologist, as some chemo can be affected by dietary selections.

    I'm sure others will also share their thoughts on this subject.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  3. #3
    Newbie New User
    Join Date
    Jun 2019
    Thank you. The main thing I’m trying to really cut out of my diet is sugar. I really just wish there were more promising options for me. My 7 year old son is what keeps me trying to stay positive and strong through all of this.

  4. #4
    I’m so sorry. I’m going through my first recurrence right now that they believe is still grade 2. How often are your scans? My most recent one in May looked okay, but my doctor always compares my scans to prior years and this time there was a difference from one of my scans from a few years ago. It’s kind of like watching a blade of grass grow, if that analogy makes sense.

    Do you go to a major brain tumor center?
    Had surgery 10/21/14 to remove Grade II Astrocytoma in right temporal lobe. 95% or more resection. Undergoing Clinical trial through UCSF taking Temodar and Everolimus for two years total.

    1500mg Keppra, 600 mg Gabapentin daily


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