First Time Here

[BeLoveAndHope]

Hello Dear Fellow GBMers, I was diagnosed a year ago, have done the standard protocol and am trying other things, too... Keto diet, lots of supplements, acupuncture, etc. I feel fortunate that my symptoms now are mostly low energy and digestive issues. I have an amazing team of physicians who, except LITT surgery, have done most of what they can offer. I would appreciate hearing about your experiences, what you've tried, what helps, etc. Looking forward to being a part of this group.

[LucyHardy]

Hey BeLoveAndHope, Lucy here. I am also new here and still totally finding my feet with this whole thing!!!!

Diagnosed in March,tumour removal late March and the radio and chemo for 6 weeks. Now on first round of chemo proper….

One inconclusive scan 9 days after radio which showed patch where tumour had been which they didn’t know whether was recurrence or radio effects (had already been told scan wouldn’t tell much and wouldn’t be able to distinguish between the two but still terrifying to hear that). How are you doing a year down the line? X

[BeLoveAndHope in reply to LucyHardy]

I really appreciate you reaching out. I'm doing great considering, am finally able to eat more and am gaining a bit of weight... have more energy... And...I feel like I'm at a cross roads... I need to make a plan for going forward. I believe that SOC is not enough (tho my medical team is wonderful...) and what is making a difference in my quality of life now are the alternative treatments. I'd love to hear you experiences. Sending healing energy...

[LucyHardy in reply to BeLoveAndHope]

Hey there, interesting - what alternatives are you using? I have been doing HBOT for about a week and a half now, that’s been great. Originally for my radiotherapy dermatitis but also supposed to be good for this condition. I am trying to eat more protein and fat, reduce carbs but I also struggle to maintain my weight and sometimes all I want is a white bread chicken sandwich!!!! Don’t give in of course!! Well….. not as often as I could!

I use lots of supplements, magnesium, vit D, curcumin, vit B, hair pills for regrowth. I do stacks of exercise, trying to stay fit, healthy and strong. I have tried hard to maintain my appearance as that makes me feel better and I have maintained my professional and social life. And that’s it. Other than that, just going thru the motions…..!!!!! But would love to do more! Do let me know what successes you have uncovered. Such a small community that’s it’s hard to share meaningful info! Anyway, good luck with everything and let me know what has been working for you x

[Tansi75]

Hi BeLoveAndHope,

Welcome to the group, can I suggest you download the Brain Tumour Charity's BRIAN APP, where you will find various post I have placed on the Discussion Board about my experience and advice regarding my living with a Grade 4 GBM diagnosis since May 2010.

Diet is a very important element, I know nothing about the Keto diet, maybe you could post something about your use of it on the BRIAN APP discussion board.

Stay positive, enjoy life, laugh as much as possible and believe that you can get through this with a positive future ahead of you. 🙂

[BeLoveAndHope in reply to Tansi75]

Oh my Dear Tansi, My heart is beaming .... I want to know more and will check the BRAIN APP discussion board. If you can make it this far, maybe I can, too. THANK YOU!! I'd love to stay in touch. 🙏🤗💕

[Tansi75]

If I can do it, so can you and everyone else too.

Please do keep in touch, which will be easier on the BRIAN APP as I access it on my mobile phone more often than my computer.

Be strong, remain positive, no matter what and concentrate on getting on with living your life.

One suggestion, when going for scans or treatment, consider turning the hospital trips into mini breaks where you can do some retail therapy or stay over in a hotel for a couple of nights, see a gig or do something else. It's what we did and helps to break the cycle of just traveling to and from hospital.🙂