GBM Grade 4 - Need advice on diet, supplements & Novocure??

Britnilynn15
Britnilynn15 Member Posts: 1
in Brain Cancer #1

My 56 year old, picture of health, Step-Dad was just diagnosed with Grade 4 GBM. He had a seizure on Feb 19, 2013 and the MRI found a grape sized spot in his brain, he went in to surgery on Feb 22, 2013 and got all or most of it out. He is going to start Chemo and Radiation this week. I was wondering if anyone had a list of foods to eat and not to eat and also what supplements are good to take while on the chemo & radiation? Also, has anyone heard or tried the Novocure device? If so which hospital did you go to. We live in Anchorage, Alaska but we are hoping to go to Tennesee(where my step dad's family is from) to find a specialist or a clinical trial hospital. My whole family has been absolutely shocked and devasted by this diagnosis and we are doing everything we can to stay positive and hopeful. I am trying to stay strong for my mom and my 2 young sisters. I want to beat this thing!!!!!! Thank you and God Bless all of you brave fighters! - Britni

Comments

  • maria isabel
    maria isabel Member Posts: 19
    #2
    foods and suplements

    hi britni,

    my mum had surgery on the 12th of december, she is now nearly finishing radiotherapy and chemeotherapy, since before the operation she has been on diferent supplements and she is doing brilliantly and also her blood test even now at the end of the quimeo are great, her quimeotherapy is temodal, (temoizida) here in spain they are not using Avastin yet.

    her supplements are: Graviola (annona muricata) she takes about 4000mg a day, (make sure you buy a good one, pure, not mix with other things), Immunovite 1-3, 1-6 Beta Glucan, one a day, Lifeline Formula  4 a day (food state multivitamin and mineral) from health creation, i buy them through www.healthcreation.co.uk or www.cytoplan.co.uk and plant power (phyto-antioxidant, with curcumin extract) 4 a day. FOOD Wise no sugar, no process food, lots and lots of fresh fruit juices that we make with a fruit liquidizer, lots and lots of fresh veg, we even liquidised brocoli, beetroot, carrots, lots of fruit.

    if with the chemotherapy she gets constipated we give her aloe vera juice or capsules, tons of water, 

    no meat, only some times chicken , and of course all organic and with no pesticides etc.

    she walks to keep her blood oxygenated, but now she is tired, we still make her! cancer hates oxygen and to keep your body oxigenated is very importan.

    water......good luck

    this is a very tough time but you are not alone.

    isabelx

  • ekh325
    ekh325 Member Posts: 1
    #3
    So Sorry

    The intial days of this diagnosis are so overwhelming.  My best advice is to get to a major cancer center that is involved in research.  There are many trials out there that my benefit your step-dad.  My husband was diagnosed in June and just finished his treatments and a trial program.  He is doing great.  

    Another side of the suppliment arguement is that some research shows that by upping suppliments you not only make the healthy cells of your body stronger you also make the cancer cells stronger.  Do your research to determine the path you feel most comfortable on.  There is no one answer for everyone.

  • nikist100
    nikist100 Member Posts: 3
    #4
    Diet insight-what we've done

    Hi, Britni.  My husband was diagnosed with stage 4 GBM in June and had similar background to your step-dad.  The difference is, my husband's only 33.  He had the surgery, did 6 weeks of radiation, is taking chemo pills (Temador), seizure meds, and steroids, and so far, he's doing really well.  His was the size of an orange, and it's "stable" as of this week.  My husband was given a 12 month life expectancy, and I have to say, he's not going down easily. ;)  We did a lot of research too, and we discovered that taking Fish Oil pills, Ginger Root, and Flaxseed Oil seems to be a constant component when doing internet searches.  I'm not sure if it works, but he's been taking them everyday since June, and he's regained his ability to do basic problem-solving, retain his memory as long as possible, and fish oil supposedly also helps with brain clarity and keeping cholesterol and blood pressure normal.  We generally have a healthy diet-eating red meat only like once every 2 weeks or so, lots of chicken, and keeping close tabs on the "junk food."  We try to make juice everyday or every other day from fresh fruits and veggies, try to only eat out once or twice a week, and go for walks everyday-even if it's just to the end of the block some days (he gets fatigued easily-and CRANKY from the steroids-be careful of that one too).  I will tell you that my husband has "ballooned up" so to speak from the steroids-that's normal (he even had to get those diabetic socks to help his feet from pooling liquid, BUT considering how much worse things could be, this wasn't bad.)  Your step-dad WILL BE fatigued (the chemo isn't bad, though-not like what I expected), but just from his body fighting the cancer.  The biggest thing we try to remember is we need to preserve QUALITY OF LIFE.  Just because your step-dad will gain weight, doesn't mean he's unhealthy.  My husband has perfect blood pressure and cholesterol, but weighs over 300 lbs now-that doesn't mean we can only feed him tofu like his sister suggests.  The weight will have almost nothing to do with diet-and that's the hardest part to remember sometimes.  I think the biggest thing for me is to make sure he's happy and living his life to the fullest.  I joked-if my husband wanted to eat steak and live on gin until he dies, that'd be ok with me, but I'd prefer he try to live as long as possible b/c I'm really going to miss my soul mate. :(  Like I said, so far so good, though.  It's coming up on a year and he's arguing with me that he wants to go back to teaching college! ;)  Best of luck, and I'll try to check this discussion board again soon to see if you had any other questions.  I know it's kind of hard (I mean this in the best possible way!!!) to find a younger person that can relate and to know what they're trying and what's working.  The diagnosis' seem to be VERY different depending on the age of onset with GBM.  Best of luck and lots of prayers. :)

  • Cooking
    Cooking Member Posts: 4
    #5
    General Info
    I am a 55 year old, two-year survivor of GBM. Here's what I tell all GBM folks who find their way to me through family and friends:

    GBM is not automatically a death sentence. Don't read the statistics. I'm a two year survivor and feel great thanks to the remarkable care from my doctors and the great support from my team of amazing family and friends. Not one of my doctors ever mentioned statistics. If they had, I'd have moved on to another.

    Long-term success depends upon a number of factors, not only age. I'm 55 and in otherwise excellent health. My doctors don't do anything different to me then they would a 39 year old. There's no magic potion. It's about using their standard tools and finding the combination that works. When those tools don't work, the have other artillery (not trials) like Avastin.

    Diet: eat sensibly, drink lots of water. Consult your neuro oncologist and general practitioner on ALL supplements/dosages. Period.

    Where to go: if you are not being treated by a major brain center, or one with a large, respected neurology department and neuro surgeon... find one. The operating suite should have a state-of-the-art setup, including an interoperative MRI machine and the surgeon should be impeccably credentialed.

    For folks like your step dad who've already had surgery, you can get a 'second opinion' on the outcome of his surgery by simply calling the head of neuro surgery at the brain center of your choice (Memorial Sloan Kettering, Dana Farber, Cleveland Clinic, Md Anderson, Duke, etc.,) and they'll instruct you on what to send them so they can render an opinion. It is always wise to do this to make sure you're getting the best of care.

    By 'you' I mean the patient.

    For instance, a GBM friend who found her way to me via a friend did not have FULL resection of her tumor because of its location. She was concerned that no one at the big hospitals would be approachable for an opinion on whether the remaining tumor could be removed safely. I made the initial contact to see what info she needed to send (pathology and post-surgery mri reports) within 48 hiurs she receved an opinion from the department co-chair who agreed with the extent of surgery performed. Peace of mind.

    Treatment: After surgery, the standard of care is typically radiation and chemo (Temodar), followed by whatever is appropriate for that particular patient.

    For many, the initial treatment, radiation plus temodar) is followed by Temodar 5/23 (5 days at high doses, then 23 days of no Temodar..for 12-18 months. Alternatively, the neuro onc might suggest low-dose Temodar for 12-18 months. This is what I ended up with after the 5/23 protocol didn't work for me. I finished 12-months of low-dose Temodar in July 2012 and have had clear MRIs to date.

    Regarding Trials: typically Trials are saved for "down the road'. Your doctor can advise you of trial participation or you can search for them on www.Clinicaltrials.gov. Each trial has eligibility requirements. Some are obvious (ie. newly diagnosed vs recurrent) and some rely on the results of the tumor's analysis (pathology) which is obtained from the tumor tissue that is preserved.

    Beware though, early participation in some trials might make you ineligible for other trials down the road.
  • Cooking
    Cooking Member Posts: 4
    #6
    Couple more thoughts
    Britnilynn:

    The American Brain Tumor Association has information on treatments and resources as do the major US brain centers.

    Be sure to obtain information from known and reputable resources.
  • jcwinnie
    jcwinnie Member Posts: 9
    #7
    Cooking said:

    General Info
    I am a 55 year old, two-year survivor of GBM. Here's what I tell all GBM folks who find their way to me through family and friends:

    GBM is not automatically a death sentence. Don't read the statistics. I'm a two year survivor and feel great thanks to the remarkable care from my doctors and the great support from my team of amazing family and friends. Not one of my doctors ever mentioned statistics. If they had, I'd have moved on to another.

    Long-term success depends upon a number of factors, not only age. I'm 55 and in otherwise excellent health. My doctors don't do anything different to me then they would a 39 year old. There's no magic potion. It's about using their standard tools and finding the combination that works. When those tools don't work, the have other artillery (not trials) like Avastin.

    Diet: eat sensibly, drink lots of water. Consult your neuro oncologist and general practitioner on ALL supplements/dosages. Period.

    Where to go: if you are not being treated by a major brain center, or one with a large, respected neurology department and neuro surgeon... find one. The operating suite should have a state-of-the-art setup, including an interoperative MRI machine and the surgeon should be impeccably credentialed.

    For folks like your step dad who've already had surgery, you can get a 'second opinion' on the outcome of his surgery by simply calling the head of neuro surgery at the brain center of your choice (Memorial Sloan Kettering, Dana Farber, Cleveland Clinic, Md Anderson, Duke, etc.,) and they'll instruct you on what to send them so they can render an opinion. It is always wise to do this to make sure you're getting the best of care.

    By 'you' I mean the patient.

    For instance, a GBM friend who found her way to me via a friend did not have FULL resection of her tumor because of its location. She was concerned that no one at the big hospitals would be approachable for an opinion on whether the remaining tumor could be removed safely. I made the initial contact to see what info she needed to send (pathology and post-surgery mri reports) within 48 hiurs she receved an opinion from the department co-chair who agreed with the extent of surgery performed. Peace of mind.

    Treatment: After surgery, the standard of care is typically radiation and chemo (Temodar), followed by whatever is appropriate for that particular patient.

    For many, the initial treatment, radiation plus temodar) is followed by Temodar 5/23 (5 days at high doses, then 23 days of no Temodar..for 12-18 months. Alternatively, the neuro onc might suggest low-dose Temodar for 12-18 months. This is what I ended up with after the 5/23 protocol didn't work for me. I finished 12-months of low-dose Temodar in July 2012 and have had clear MRIs to date.

    Regarding Trials: typically Trials are saved for "down the road'. Your doctor can advise you of trial participation or you can search for them on www.Clinicaltrials.gov. Each trial has eligibility requirements. Some are obvious (ie. newly diagnosed vs recurrent) and some rely on the results of the tumor's analysis (pathology) which is obtained from the tumor tissue that is preserved.

    Beware though, early participation in some trials might make you ineligible for other trials down the road.

    Compliment

    Excellent post

  • Mrs. B.
    Mrs. B. Member Posts: 7
    #8
    GBM

    You might find this article interesting"Ketogenic Diet May Be Key to Brain Cancer Recovery" at mercola.com

  • debski13
    debski13 Member Posts: 2
    #9
    weight loss

    My mom (age 70 - picture of health before the GBM) had a sucessful sugery and is being treated with the 5 days on/23 days off chemo plan (following 6 weeks of chemo/radiation in January/February 2015).  Her big problem is not being able to eat.  She can't handle sweet or salty foods and most smells of food make her ill. She can't drink boost or Ensure, and is losing weight - too much weight. Many days her "diet" will consist of toast, and if she's lucky, an egg.

    Has anyone dealt with weight loss with not being able to eat, and if so, what worked for you or your loved one?

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