GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

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GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Lkorioth on Wed Nov 14, 2018 06:19 AM

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I am a 43 yr old female just recently diagnosed with GBM in May 2018. The surgeon was able to completely resect the tumor and I completed radiation and 4.5 weeks of Temador (they had me stop due to thrombocytopenia).  I have my first MRI post radiation and surgery on November 19, 2018.  I am waiting for my oncologist to get a presciption of Tagrisso (off label drug used for lung cancer), as my tumor tested positive for a mutation that this drug will address.  Lately, I have been having small headaches here and there and was just wondering if anyone else experienced this in their recovery? They are not constant and usually not super uncomfortable, if you don't count what it is doing to my imagination.  I have been doing the following treatments: Temador, Radiation, PEMF, hyperbaric oxygen, sauna, tons of supplements, keto diet for a bit, and soon hoping to start on Tagrisso. Also, has anybody tried the Optune device?  

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Lesliegbm on Sat Nov 17, 2018 04:06 PM

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On Nov 14, 2018 6:19 AM Lkorioth wrote:

I am a 43 yr old female just recently diagnosed with GBM in May 2018. The surgeon was able to completely resect the tumor and I completed radiation and 4.5 weeks of Temador (they had me stop due to thrombocytopenia).  I have my first MRI post radiation and surgery on November 19, 2018.  I am waiting for my oncologist to get a presciption of Tagrisso (off label drug used for lung cancer), as my tumor tested positive for a mutation that this drug will address.  Lately, I have been having small headaches here and there and was just wondering if anyone else experienced this in their recovery? They are not constant and usually not super uncomfortable, if you don't count what it is doing to my imagination.  I have been doing the following treatments: Temador, Radiation, PEMF, hyperbaric oxygen, sauna, tons of supplements, keto diet for a bit, and soon hoping to start on Tagrisso. Also, has anybody tried the Optune device?  

as they love to say in the South Bless your heart... I am so very sorry to welcome you to our ever growing gbm community Shocked you haven’t received a multitude of replies that headaches post-Crainey and radiation are VERY normal My recommendation is //Take some Tylenol and SLEEP it away. In fact my mantra for awhile which I lifted from a novel “TheFault in our Stars” was “Sleep Cures Cancer”. I slept a LOT and didn’t feel the least bit guilty about it. in fact, I have since learned that while you sleep the brain does all kinds of wonderful house keeping. it sounds like your medical team has you in a whole lot of interesting therapies- sorry I can’t comment on the Optune device but my NO gave me info to read about it should I have a reoccurrence. Praise God~I have not. The fact that you were able to have a fairly complete resection/removal of the tumor is fantastic! The less your mind wonders and worries, the better... there are many on this site that have blown away the statistics. I personally have rested in Proverbs3:5-6 since my 2013 start date and the path has lead me to a great peace that I kNOW is from My Father. As you do what your doctors advise you to, I hope you can rest in knowing that this crisis has not taken God by surprise and He promises to never leave our side or abandon us through the journey. keep the Hope, fight for Faith and REST Xo Leslie dxgbm2013

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Macpudd on Wed Nov 28, 2018 12:11 PM

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Hi Lkorioth, 

I had the same diagnosis as you in Jan this year and the same treatment but was lucky enough to not have as much problems with chemo as yourself. I still have lots of headaches, most days, but usually paracetamol eases them. I had my surgery on left temporal lobe and am now deaf on that side, also seem to be prone to sinus infections on that side and that can cause the headaches to be severe. My last MRI was in Nov and there was no tumour regrowth but some white matter damage and necrosis. Hope you are feeling good, you certainly seem positive and are using lots of other therapies. 

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Miles22 on Wed Jan 23, 2019 03:27 PM

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49 yr old male 2 years out of stage IV gliosarcoma resection. Was told wrong gene for many opportunities for immunotherapies so found a doctor that would prescribe me the Optune Device. The device changes the freedom I loved to be able to excercise, sweat, be out in the sun anytime I felt like doing those things. I think the device works very well but I have not been as strict keeping to the prescribed 18 hours daily. There are times I can wear it longer but most days I rip it off to workout, play golf and get outside more. Try to sleep in it at least most days.

Agree completely with ketogenic diet, naturopathic supplements, regular excercise, regular sleep and positive attitude in being up for the challenge.

Headaches had been pretty regular for the 1st year after surgery and much more rare now.

I have to give credit to this situation for really opening my eyes to how beautiful life is and how happy my wife, family and friends and even work make my life.

Believe in your ability to win the battle, thoughts and prayers to you and your family.

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Lkorioth on Wed Jan 23, 2019 06:44 PM

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Thanks so much for the response!  It is ALWAYS encouraging to read that survivors are doing just that--SURVIVING! 

I, too, am now using the Optune device and there are certain aspects of my life that it has changed.  The benefits certainly out weight the negative aspects, in my opinion.  I have been using it since December and so far it is far less cumbersome than I had imagined.  I can definitely see your perspective on exercising, though, because I find that I don't do it as much as I used to due to electrode changes being such a hassle.  

I am at City of Hope right now and just had my second post treatment MRI.  Will get the results this afternoon.  Fingers crossed!

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Miles22 on Fri Jan 25, 2019 02:50 PM

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That is awesome that you are wearing and keeping the cancer at bay from growing. Agree that it is a huge benefit and not to overwhelming but I do "unplug" myself alot to be more active than prescribed. Believe the best path is excercise, diet and optune device all working in coordination.

Onto 3rd year away from diagnosis and resection and still feeling great.

Hope your MRI results were great and give you time not to worry but enjoy life much more. Best to you and your family

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Lkorioth on Fri Jan 25, 2019 06:33 PM

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MRI WAS CLEAR!! No new growth! Amen, hallelujah! Congrats on being 3 yrs out with no reoccurrence. Can’t wait to be in your shoes. Just curious: when you get a chance could you tell me exactly what meds you are taking and what you have been doing besides Optune? Just trying to compare notes. This is what I am doing: PEMF, hyperbaric chamber, and sauna three times a week. Optune device Lots of supplements—graviola, genistein, fish oil, resveratrol, quercitin, ashwaganda root (enhances Optune results), green tea, vitamin c, melatonin, THC/CBD mix, Frankincense. Prescription meds: Metformin, Mebendazole, doxycycline, atorvastatin, and Keppra.

RE: GBM--SMALL HEADACHES POST CRANIOTOMY AND RADIATION

by Miles22 on Thu Jan 31, 2019 08:53 PM

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Congrats on the clear MRI. Keep showing up every 2 or 3 months for MRI to prove you are on the right path and that excitement that you're up to win the fight. I take no meds but believe in ketogenic diet to rid sugars, regular excerise, optune device and the naturopathic supplements: omega 3, tumeric, boswella serratta (sp?), ginger, melatonin, green drink, and mushrooms with marketing names of lions mane and turkey tail.

Yours sounds much better overall as you have a longer list of things that you have either found more info on or believe in and hopefully both. Belief I believe is the most powerful and setting achievable goals and steps. 

I owe my family all I can do to relieve the stress and worries with a completely positive attitude and effort to bring happiness into their life. I drive up every three months now for MRI and oncologist meetings and always by myself to tell all to relax because I will call them immediately afterwards to give them the good news I expected.

As a husband and father of three it is my responsibility to take care of them and make their lifes better: goals that I live for and enjoy everyday.

Keep winning the battle, enjoy each and everyday with those you love. Take care

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