GBM4: question about supplements during radiation therapy?

10 Posts | Page(s): 1 

GBM4: question about supplements during radiation therapy?

by keepthefaith12 on Mon Dec 11, 2017 12:30 AM

Quote | Reply

Hi everyone, 

I'm a 20-year old daughter of GBM4-diagnosed mom from Vietnam. 

- Pre-GBM4 diagnosis: Last October my mom told me through the phone that she started to develop Aphasia, I was very worried so i told her to have a check-up at the hospital but she didn't (I'm currently studying abroad, in Europe so I couldn't be there to force her to go to the hospital). Few weeks later, I heard from my family that she was in the hospital because she couldn't move the right side of her body and her aphasia got extremely serious, she couldn't express longer than four words. 

- Upon diagnosis: at the hospital, through MRI scan the doctors found a roughly 6x6cm tumour in her left frontal lobe. A surgery took place on November 15, 80% of the tumour was removed. That was also when my family received the result from the doctor: Glioblastoma Multiforme. 

- Radiation therapy: She's now going through the 30 radiation treatments ( 5 days a week) which will end in the beginning of January. She recovers from the surgery quite well, her language ability got a lot better (she could say long sentences but would forget one or two words in the middle of the sentence) and she could walk, use her right hand like before. And my dad told me that the doctors said if everything goes well she would have 5 or 10 more years but I honestly don't know if it's true or if my dad is trying to comfort me since i'm so far away (I know my parents well, they always try to make me worry less).

Even though GBM4 is the something that never have I, even in my dream, thought my mom would have but positive posts here on CancerCompass, VirtualTrials and Ben William's book have given me a lot of hope. 

Besides standard treatments from doctors, i'm reading Ben William's book, CancerCompass posts and some papers on Pubmed. I think it would be nice to let my mom use supplements but giving massive amount of different supplements all at once would not be a good idea.

As I will be home this Christmas, I'm planning to give her some supplements which are believed to help during radiation. After the radiation therapy completes and she gets to go home I wlill tell her to take all other supplements as well as new diet. So I want to ask if anyone here has tried using supplements during and after radiation for your opinons on the dosage or if there's any precaution.

The supplements I'm planning to use during her radiation are (a little background: she's quite petite, 160cm tall and weighs around 53kg):

+ Omega 3 (1000mg capsule): I don't know if i should let her take 1000mg or 2000mg a day. 

+ Selenium (200 mcg)

+ Curcumin (480mg capsule/ twice a day)

+ Alo Vera extract

The full supplements list besides the four are: 

+ Fresh green tea

+ Melatonin: 5mg

+Colorius mushroom extract: 

+ Resveratrol: 500mg

+ Boswellia extract: 800mg

+ Pomegranate extract: 500mg

+ Garlic with Allicin: 1000mg

+ Berberin: 150mg

+ Milk Thistle: 150mg

+ Gingko biloba: 150mg

+ Lycopene: 20mg

I'm a bit concerned that with this much of supplements how should i actually divide when to take what. 

Another thing is actually my mom doesn't really know that she has GBM4 yet, even my family we only knew about it after the surgery and didn't really have the opportunity to let her know since. But me and dad will for sure tell her, she has the right to know. Just that I find it extremely difficult, i'm really really scared just to imagine how she would feel after knowing this. And I also have a little sister who's only 13 so me and dad also haven't let her know. 

Anyhow, thank you very much for reading my post. I wish you all who're here for whatever reason a lot of strength and hope. I look forward to hearing from you.

Warm regards,

Binh

RE: GBM4: question about supplements during radiation therapy?

by Raquella on Mon Dec 11, 2017 03:22 AM

Quote | Reply

Well done on your research. If she takes the supplements and also goes on a ketogenic diet that is giving her the best chance of long term survival. However there are no garauntees. Diet is critical, all sugar and carbs have to go as that is what Cancer thrives on. There is also a clinic in the US that taylors treatment for each individual person. I think it is $$$ but could well be worth it. The FDA doesn't like it as they use a wholistic approach. 

RE: GBM4: question about supplements during radiation therapy?

by apenrod on Fri Jan 19, 2018 10:03 PM

Quote | Reply

Did you find out anymore on the use of supplements during radiation? I'm coming up with confliciting data back and forth. My mom was diagnosed on December 6th and started radiation and chemo one week ago. I want to give her the best chance at survival but I also don't want to hinder the radiation.

thanks,

Ashley

RE: GBM4: question about supplements during radiation therapy?

by keepthefaith12 on Sat Jan 20, 2018 11:55 AM

Quote | Reply

Hi Ashley,

Have you read "Treament options for Glioblastoma and other Gliomas" by Ben William? It's a really healpful source that summarizes many kinds of treaments as well as supplements, it's available on VirtualTrial. If you haven't, I highly recommend it and also his book "Surviving Terminal Cancer". It's like a good starting point.  

My mom had just finished 30 radiation treatments together with oral Temozolomide. The size of the tumour after the surgery was 41x49mm. After the radiation together with oral chemotherapy and supplements, the size of the tumour is now 36mmx26mm. She will continue to take Temolozomide and the supplements I bought and have monthly check up. She doesn't seem to have negative reaction to the supplements so far and because the tumor is still there, we're very cautious but at the same time have more hope as it shrinks.  

Does your mom oncologist prescribe her any nutritional supplement? My mom's oncologist gave her Lipidem Emulsion by Braun which contains mainly Omega 3 and Soy-bean oil for about 14 days during the radiation. 

Supplements she's been taking so far, daily dosage:

+ Omega 3 (3,000mg): very helpful source of fatty acid that even my mom oncologist precribed her, she takes 3,000mg a day if not taking lipidem. When on lipidem, she only took 1000mg/day.

+ Selenium: 200mcg - to maintain selenium in her blood level

+ Boswellia: 1,800mg - to support treament of brain edema 

+ Melatonin: 15mg - 1 hour before bedtime, this helps her a bit with her sleep and there many researches which show it boosts cancer patients' stamina during their treatments. 

+ Coriolus mushoom: 1,200mg - a very helpful supplement incorporated into cancer treatments in asian countries. 

+ Lycopene: 20mg - many sources show it's a good supplement to protect healthy cells during radiation

+ Berberine: 150mg - researches show this has something similar to chemicals used in chemo for Glioblastoma.

+Silibinin (Milk Thistle): 1,500mg - researches also show it inhibits tumour growth together with liver detoxifying effects. 

+ Sulforaphane: 500mg. 

+ Garlic extract: 1,000mg

Now my mom is home, taking oral Temolozomide and I added some more supplements into her daily routine:

+ Fresh green tea

+ Pomegranate extract as a source of Ellagic Acid.

+ Resveratrol 

I hope this helps even just a bit. Good luck with everything to your mom and your family. Keep us update. 

Kind regards,

Binh

RE: GBM4: question about supplements during radiation therapy?

by apenrod on Tue Jan 30, 2018 08:32 PM

Quote | Reply

On Jan 20, 2018 11:55 AM keepthefaith12 wrote:

Hi Ashley,

Have you read "Treament options for Glioblastoma and other Gliomas" by Ben William? It's a really healpful source that summarizes many kinds of treaments as well as supplements, it's available on VirtualTrial. If you haven't, I highly recommend it and also his book "Surviving Terminal Cancer". It's like a good starting point.  

My mom had just finished 30 radiation treatments together with oral Temozolomide. The size of the tumour after the surgery was 41x49mm. After the radiation together with oral chemotherapy and supplements, the size of the tumour is now 36mmx26mm. She will continue to take Temolozomide and the supplements I bought and have monthly check up. She doesn't seem to have negative reaction to the supplements so far and because the tumor is still there, we're very cautious but at the same time have more hope as it shrinks.  

Does your mom oncologist prescribe her any nutritional supplement? My mom's oncologist gave her Lipidem Emulsion by Braun which contains mainly Omega 3 and Soy-bean oil for about 14 days during the radiation. 

Supplements she's been taking so far, daily dosage:

+ Omega 3 (3,000mg): very helpful source of fatty acid that even my mom oncologist precribed her, she takes 3,000mg a day if not taking lipidem. When on lipidem, she only took 1000mg/day.

+ Selenium: 200mcg - to maintain selenium in her blood level

+ Boswellia: 1,800mg - to support treament of brain edema 

+ Melatonin: 15mg - 1 hour before bedtime, this helps her a bit with her sleep and there many researches which show it boosts cancer patients' stamina during their treatments. 

+ Coriolus mushoom: 1,200mg - a very helpful supplement incorporated into cancer treatments in asian countries. 

+ Lycopene: 20mg - many sources show it's a good supplement to protect healthy cells during radiation

+ Berberine: 150mg - researches show this has something similar to chemicals used in chemo for Glioblastoma.

+Silibinin (Milk Thistle): 1,500mg - researches also show it inhibits tumour growth together with liver detoxifying effects. 

+ Sulforaphane: 500mg. 

+ Garlic extract: 1,000mg

Now my mom is home, taking oral Temolozomide and I added some more supplements into her daily routine:

+ Fresh green tea

+ Pomegranate extract as a source of Ellagic Acid.

+ Resveratrol 

I hope this helps even just a bit. Good luck with everything to your mom and your family. Keep us update. 

Kind regards,

Binh

Hi Binh,

I have read that paper by Ben Williams and his book. Unfortunately his cancer was very receptive to treatments and is very different than my mothers tumor so i'm trying to weed out things that he now feels aren't helpful.   Our oncologist is very strict to the standard of care and doesn't advocate use of any other treatments. On supplements he just wanted us to make sure we watched antioxidants.   Our supplement list is very similar to yours.  We actually went to a cancer nutrisionist who helped us figure out the best dosages during radiation etc. i'm glad to hear she isn't having negative side effects as that is what i'm most concerned about.  Have you looked into using Chloroquine, Metformin or Disulfiram?

RE: GBM4: question about supplements during radiation therapy?

by BGreene on Sun Feb 11, 2018 05:22 PM

Quote | Reply

On Jan 20, 2018 11:55 AM keepthefaith12 wrote:

Hi Ashley,

Have you read "Treament options for Glioblastoma and other Gliomas" by Ben William? It's a really healpful source that summarizes many kinds of treaments as well as supplements, it's available on VirtualTrial. If you haven't, I highly recommend it and also his book "Surviving Terminal Cancer". It's like a good starting point.  

My mom had just finished 30 radiation treatments together with oral Temozolomide. The size of the tumour after the surgery was 41x49mm. After the radiation together with oral chemotherapy and supplements, the size of the tumour is now 36mmx26mm. She will continue to take Temolozomide and the supplements I bought and have monthly check up. She doesn't seem to have negative reaction to the supplements so far and because the tumor is still there, we're very cautious but at the same time have more hope as it shrinks.  

Does your mom oncologist prescribe her any nutritional supplement? My mom's oncologist gave her Lipidem Emulsion by Braun which contains mainly Omega 3 and Soy-bean oil for about 14 days during the radiation. 

Supplements she's been taking so far, daily dosage:

+ Omega 3 (3,000mg): very helpful source of fatty acid that even my mom oncologist precribed her, she takes 3,000mg a day if not taking lipidem. When on lipidem, she only took 1000mg/day.

+ Selenium: 200mcg - to maintain selenium in her blood level

+ Boswellia: 1,800mg - to support treament of brain edema 

+ Melatonin: 15mg - 1 hour before bedtime, this helps her a bit with her sleep and there many researches which show it boosts cancer patients' stamina during their treatments. 

+ Coriolus mushoom: 1,200mg - a very helpful supplement incorporated into cancer treatments in asian countries. 

+ Lycopene: 20mg - many sources show it's a good supplement to protect healthy cells during radiation

+ Berberine: 150mg - researches show this has something similar to chemicals used in chemo for Glioblastoma.

+Silibinin (Milk Thistle): 1,500mg - researches also show it inhibits tumour growth together with liver detoxifying effects. 

+ Sulforaphane: 500mg. 

+ Garlic extract: 1,000mg

Now my mom is home, taking oral Temolozomide and I added some more supplements into her daily routine:

+ Fresh green tea

+ Pomegranate extract as a source of Ellagic Acid.

+ Resveratrol 

I hope this helps even just a bit. Good luck with everything to your mom and your family. Keep us update. 

Kind regards,

Binh

Dear Binh,

Do you know if your Mom's tumor was methylated or non-methylated? 

My husband was diagnosed with GBM on Jan. 21st and had the tumor resected and removed on Jan. 30th. We now are persueing protocol for treatment ASAP. I already know that we believe in what Rich Gerber and Ben Williams advocate for since the alternative is not acceptable.  Thank you for sharing your encouraging journey at the moment with your Mom.

RE: GBM4: question about supplements during radiation therapy?

by keepthefaith12 on Mon Feb 12, 2018 07:42 PM

Quote | Reply

Hi Ashley,

Yes I have, however, i'm not confident that I would be knowledgeable enough to know the dosage as well as the chemical reactions well so I did not add it to the cocktail. Maybe you want to consult it with the oncologist? I did not ask my oncologist about these but I did consider the option of combining TMZ and Tamoxifen but he did not support it so we did not combine it. 

RE: GBM4: question about supplements during radiation therapy?

by keepthefaith12 on Mon Feb 12, 2018 08:29 PM

Quote | Reply

On Feb 11, 2018 5:22 PM BGreene wrote:

On Jan 20, 2018 11:55 AM keepthefaith12 wrote:

Hi Ashley,

Have you read "Treament options for Glioblastoma and other Gliomas" by Ben William? It's a really healpful source that summarizes many kinds of treaments as well as supplements, it's available on VirtualTrial. If you haven't, I highly recommend it and also his book "Surviving Terminal Cancer". It's like a good starting point.  

My mom had just finished 30 radiation treatments together with oral Temozolomide. The size of the tumour after the surgery was 41x49mm. After the radiation together with oral chemotherapy and supplements, the size of the tumour is now 36mmx26mm. She will continue to take Temolozomide and the supplements I bought and have monthly check up. She doesn't seem to have negative reaction to the supplements so far and because the tumor is still there, we're very cautious but at the same time have more hope as it shrinks.  

Does your mom oncologist prescribe her any nutritional supplement? My mom's oncologist gave her Lipidem Emulsion by Braun which contains mainly Omega 3 and Soy-bean oil for about 14 days during the radiation. 

Supplements she's been taking so far, daily dosage:

+ Omega 3 (3,000mg): very helpful source of fatty acid that even my mom oncologist precribed her, she takes 3,000mg a day if not taking lipidem. When on lipidem, she only took 1000mg/day.

+ Selenium: 200mcg - to maintain selenium in her blood level

+ Boswellia: 1,800mg - to support treament of brain edema 

+ Melatonin: 15mg - 1 hour before bedtime, this helps her a bit with her sleep and there many researches which show it boosts cancer patients' stamina during their treatments. 

+ Coriolus mushoom: 1,200mg - a very helpful supplement incorporated into cancer treatments in asian countries. 

+ Lycopene: 20mg - many sources show it's a good supplement to protect healthy cells during radiation

+ Berberine: 150mg - researches show this has something similar to chemicals used in chemo for Glioblastoma.

+Silibinin (Milk Thistle): 1,500mg - researches also show it inhibits tumour growth together with liver detoxifying effects. 

+ Sulforaphane: 500mg. 

+ Garlic extract: 1,000mg

Now my mom is home, taking oral Temolozomide and I added some more supplements into her daily routine:

+ Fresh green tea

+ Pomegranate extract as a source of Ellagic Acid.

+ Resveratrol 

I hope this helps even just a bit. Good luck with everything to your mom and your family. Keep us update. 

Kind regards,

Binh

Dear Binh,

Do you know if your Mom's tumor was methylated or non-methylated? 

My husband was diagnosed with GBM on Jan. 21st and had the tumor resected and removed on Jan. 30th. We now are persueing protocol for treatment ASAP. I already know that we believe in what Rich Gerber and Ben Williams advocate for since the alternative is not acceptable.  Thank you for sharing your encouraging journey at the moment with your Mom.

Hi BGreene,

Sadly this is what our family doesn't know, the hospital also did not mention this. I hope everything go well with the treatment of your husband. Please keep us update.

RE: GBM4: question about supplements during radiation therapy?

by Hicko on Sat Feb 17, 2018 01:45 AM

Quote | Reply

Hi Binh,

I am sorry to hear about your mothers diagnosis. I am a 46 year old male from New Zealand and I was diagnosed with GBM4 in November 2017. 

I am reading a book called Cancer 4 Me 5 by Liam Ryan. It is a story of 10 years survivial after been diagnosed with a nasty brain tumor from his eye to the base of his neck. He has survived 10 years after his initial surgery and treatments. This story is amazing and shows if you put your mind and soul into it you can beat the odds you face. 

He reset his thoughts after receiving his news and operates in a pre and post cancer mode. He doesn't waste energy on pre cancer as their is nothing he can change. I am starting to put my self in this position. Worrying about cancer is part of the diesese and can waste your precious energy.

I stronthly suggest your mother is informed about the prognosis as it is important her mind and energy is focused on the journey ahead of her.

God speed.

Dave

RE: GBM4: question about supplements during radiation therapy?

by keepthefaith12 on Thu Mar 01, 2018 09:57 PM

Quote | Reply

On Feb 17, 2018 1:45 AM Hicko wrote:

Hi Binh,

I am sorry to hear about your mothers diagnosis. I am a 46 year old male from New Zealand and I was diagnosed with GBM4 in November 2017. 

I am reading a book called Cancer 4 Me 5 by Liam Ryan. It is a story of 10 years survivial after been diagnosed with a nasty brain tumor from his eye to the base of his neck. He has survived 10 years after his initial surgery and treatments. This story is amazing and shows if you put your mind and soul into it you can beat the odds you face. 

He reset his thoughts after receiving his news and operates in a pre and post cancer mode. He doesn't waste energy on pre cancer as their is nothing he can change. I am starting to put my self in this position. Worrying about cancer is part of the diesese and can waste your precious energy.

I stronthly suggest your mother is informed about the prognosis as it is important her mind and energy is focused on the journey ahead of her.

God speed.

Dave

Hi Dave,

Thank you very much for your message. That's indeed really great mentality. I hope things are going well for you in terms of treatments and everything else. 

My mom is a very strong and independent woman, she's home at the moment after 3 months in the hospital. She recovers quite well from the surgery and radiotherapy, still does the cooking and grocery shopping by herself, eats moderately, takes TMZ and various supplements. 

I understand what you mean and truly appreciate your words. The oncologist gave us 5 years prognosis and we're trying our best to make the most out of everything. 

I wish you all the best with your journey and please keep us updated.

Kind regards,

Binh

10 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.