Stephen, I can’t remember what RX/supplements to hold or continue during radiation and/or TMZ?
Can you help?
*Oct 2013 husband diagnosed GBM#4, left frontal lobe, total resection, no seizures.
*Total 6 wks SOC, TMZ & Radiation. Drug cocktails below.
*Dec 2013- Oct 2015 Optune Trial/TMZ. Stopped Optune due to skin issues.
*Jan 2015, NO thought recurrence so changed him to CCNU cuz TMZ “failed him”. The CCNU was brutal on him so he stopped it July 2015.
*I did not agree it was recurrence as looked like necrosis to me. I was upset off TMZ since Methylated. June 2015 took him to UCSF/Berger. He agreed didn’t think recurrence either so we decided to ”watch and wait". Since “supposed” recurrence never materialized, he stopped all treatments July 2015 except Drug Cocktails.
*Jan 2018, GBM recurrence a little forward of original tumor (not area they watched b4). Full resection. Since still methylated and was treatment free since July 2015, decided to try TMZ for 12 mos and Cyberknife radiation for 5 days.
Tumor is: IDH-1 R132H wildtype. ATRX retained, Mib 10%, MGMT Methylated
Will have the gene testing results soon.
Hubby is 76.5 yrs old, has some cognitive/motivation issues from 2013 treatment but physically adept.
Due to his age, I am light on the cocktails:
A) Chemo: TMZ, 300mg 5/23
1) Divalproex Sodium (Valproex Acid) 250 mg DR x 2 daily
2) Sulfamethox-TMP DS 800 – 160 MG TAB 3 days a wk
3) Celecoxib 200 mg x 2
4) Cimetidine, 200 mg x 2
5) Maitake D fraction Pro 4x, 100 mg x 6
6) Coriolus – PSP, 400 mg x 6
7) LEF European Milk Thistle: 240 Silymarin, 90mg Silybin, 24 mg Isosilybin A & B, phospholipids x 2
8) D3-5,000 IU 1 pill x 1
9) BroccoMax Broccoli seed extract (sulforaphane Glucosinolate), 30 mg x 1
10) pTeroPure (Pterostilbene) 50 mg x 1
11) Mega Lycopene, 15 mg x 1
12) Melatonin, 20 mg x 1
13) Longvida curcumin, 1000 mg x 1
14) Multi-vitamin (not sure if I should give him??)
15) Pro Omega, 1175 mg x 1
16) Berberine, 500 mg x 1
17) Probiotic x 1
18) Decaf Mega Green Tea Extract, 725 mg x 2
19) LEF Ultra Soy Extract, genistein not taking right now
20) Boswellia, not taking currently
Thank you and Blessings to you all!
Candy
Stephen, I can’t remember what RX/supplements to hold or continue during radiation and/or TMZ?
ReplyDeleteCan you help?
*Oct 2013 husband diagnosed GBM#4, left frontal lobe, total resection, no seizures.
*Total 6 wks SOC, TMZ & Radiation. Drug cocktails below.
*Dec 2013- Oct 2015 Optune Trial/TMZ. Stopped Optune due to skin issues.
*Jan 2015, NO thought recurrence so changed him to CCNU cuz TMZ “failed him”. The CCNU was brutal on him so he stopped it July 2015.
*I did not agree it was recurrence as looked like necrosis to me. I was upset off TMZ since Methylated. June 2015 took him to UCSF/Berger. He agreed didn’t think recurrence either so we decided to ”watch and wait". Since “supposed” recurrence never materialized, he stopped all treatments July 2015 except Drug Cocktails.
*Jan 2018, GBM recurrence a little forward of original tumor (not area they watched b4). Full resection. Since still methylated and was treatment free since July 2015, decided to try TMZ for 12 mos and Cyberknife radiation for 5 days.
Tumor is: IDH-1 R132H wildtype. ATRX retained, Mib 10%, MGMT Methylated
Will have the gene testing results soon.
Hubby is 76.5 yrs old, has some cognitive/motivation issues from 2013 treatment but physically adept.
Due to his age, I am light on the cocktails:
A) Chemo: TMZ, 300mg 5/23
1) Divalproex Sodium (Valproex Acid) 250 mg DR x 2 daily
2) Sulfamethox-TMP DS 800 – 160 MG TAB 3 days a wk
3) Celecoxib 200 mg x 2
4) Cimetidine, 200 mg x 2
5) Maitake D fraction Pro 4x, 100 mg x 6
6) Coriolus – PSP, 400 mg x 6
7) LEF European Milk Thistle: 240 Silymarin, 90mg Silybin, 24 mg Isosilybin A & B, phospholipids x 2
8) D3-5,000 IU 1 pill x 1
9) BroccoMax Broccoli seed extract (sulforaphane Glucosinolate), 30 mg x 1
10) pTeroPure (Pterostilbene) 50 mg x 1
11) Mega Lycopene, 15 mg x 1
12) Melatonin, 20 mg x 1
13) Longvida curcumin, 1000 mg x 1
14) Multi-vitamin (not sure if I should give him??)
15) Pro Omega, 1175 mg x 1
16) Berberine, 500 mg x 1
17) Probiotic x 1
18) Decaf Mega Green Tea Extract, 725 mg x 2
19) LEF Ultra Soy Extract, genistein not taking right now
20) Boswellia, not taking currently
Thank you and Blessings to you all!
Candy
Hi Candy,
DeleteThere are some ideas of things to add to radiation and temozolomide on my other site:
http://astrocytomaoptions.com/temozolomide-temodar/
http://astrocytomaoptions.com/radiation/
Also check the "Pharma and non-pharma" list in the reference documents in the Brain Tumor Library (which I've shared with you).
https://docs.google.com/spreadsheets/d/1oGo50LeemE7-tRlkxraA85waGAM6sPLdhpflH4n2tzA/edit#gid=0
In column K and L of the sheet I've marked agents that have evidence for combining with radiation and TMZ.
I hope that helps!
Thanks so much Stephen. Yes, I already checked out your site. It's the best. Thank you for helping me get back in the game! So sorry for the double post. I am getting more technically challenged!!
ReplyDeleteI have various questions here:
Radiologist sent a letter home saying to "avoid antioxidant vitamins, such as Vitamins C,A,E,D while having radiation therapy as they might interfere with radiation's ability to destroy cancer cells." Can anyone weigh in on that?
Also I saw the post about not taking DEXA while on radiation. Has anyone just taken the Boswellia ONLY for the swelling?
Thanks so much!
Hi Candy. The best person to comment is probably Stephen, but let me give my two cents. The topic of antioxidant use during radiotherapy is a very common one - I think it's actually very standard for radiologists to recommend to avoid pretty much all such supplements, because they believe that the antioxidant activity could get in the way of radiotherapy effectiveness (which relies in part on free radical generation). The same is true for chemotherapy to a degree. However, my understanding is that these concerns are mostly theoretical as there are few supporting studies, and that with a few exceptions the studies that do exist tend to favor antioxidant & general supplement use. In addition, it would probably be a big simplification to talk about each antioxidant the same way, as each is different. For example, I think Vitamin E may in fact have been shown in a couple of studies to be detrimental potentially, but this is not true for all the other antioxidants. In fact, for example Vitamin D I believe has some strong evidence going for it as supporting treatment effectiveness - almost everyone here supplements it I think.
DeleteBen Williams has actually written a paper on the topic of supplement use during treatments, which you can download at the following URL:
http://virtualtrials.com/pdf/williamssupplements2014.pdf
Regarding the DEXA topic, I can add that in my case I relied on Boswellia Serrata (peaking at just over 4g per day) and Celebrex alone, and did not require any cortisone. That's not to say obviously that this would work in every case, but for for me it worked very well in spite of relatively large radiation field.
I hope this helps. I suggest you give Ben's document a read, which I think should be very useful for you to form an opinion on the antioxidant use issue.
All the best!
John
By the way, I would add as an additional consideration the protective role of antioxidants for the healthy tissue surrounding the tumor. Radiotherapy is an aggressive treatment, and the side effects can at least in some cases be quite considerable also over the longer term. This may be a secondary concern compared to treatment effectiveness at this stage, but I still think it's worth a consideration nonetheless.
DeleteJohn
Hi Candy, you didn't double post - that was me. You left your original posting in the comments section, and I copied it to the main post area so that people wouldn't have to click on comments in order to see it.
DeleteJohn gave a nice summary that I would agree with. One has to look at the evidence for each "antioxidant" individually, because calling something an "antioxidant" is an oversimplification. Many nutraceutical supplements may have other mechanisms of action that could synergize with standard treatments, in spite of their having some degree of antioxidant activity. On the other hand I would probably avoid something like vitamin E during radiation as it could protect cells (including cancer cells) from radiation effects. It is a very complicated issue, far more complicated than "avoid all antioxidants". Indeed Ben went into great detail to give a fair discussion of this issue.
It would be ideal to not have to use dexamethasone during radiation, but for bad cases of edema I doubt Boswellia alone would be sufficient. Again that has to be decided on a case by case basis.
There was also a rodent study showing that vitamin C interfered with the efficacy of radiation. However, very high intravenous doses of vitamin C could act as a pro-oxidant leading to generation of hydrogen peroxide radicals and co-operate with radiation. One would have to get the dosing right, because lower doses could have a protective effect. This is also tricky as John mentioned, as one wants to protect healthy tissue but not tumor tissue.
Delete