Hi folks/Stephen,
My mother, a GBM patient(Methylated) has completed 3 Temozolomide cycles and starts with her next cycle being Temozolomide + Lomustine. She is on the following supplements:
Boswellia Seratta 4 g/day, Keppra 1000 mg/day, Curcumin 3 g/day, Quercetin(4 g/day), Fish Oil 4 g/day, Resveratrol (400 mg/day), Marrow Plus(6 caps/day), Echinsea(2 g/day), Bromelain, Ginger, Garlic, Ashwagandha, Melatonin, Vitamin D3, Selinium, Molydenum, Artemesia, Malatonin 1500 mg/day, Melatonin 20mg/day, EGCG extract 400 mg/day, Celebrex 600 mg/day
Plan to add: Care Oncology Protocol, Ruta 6 + Calceria Phos, Cannabis Oil, Low dose Naltrexone
I had three questions, would be great if you could answer:
1. My mom's blood counts are still not really good. Her WBC count is 1700 and her Platelet count is 120k. My oncologist is suggesting we start the chemotherapy protocol as it has already been 28 days since the last temozolomide cycle. He says that we will use fligrastim injections(WBC injections) to manage the further dip in WBC counts, if at all they happen. Wanted to know if any of you have an experience/knowledge of whether it is okay to start the temozolomide+Lomustine combination with the low counts that my mom has, or should I wait further? I ask because my oncologist is using this combination on a GBM patient for the first time, and he thinks it is a little late already to start.
I also ask this because typically the gap between two TMZ + Lomustine cycles is 36 days(6 days of chemo + 36 days for the next cycle, making it a 6 week cycle), while the gap between two Temzolomide cycles is 23 days. Wondering what should be the maximum allowable gap between a temozolomide cycle and a temozolomide+lomustine cycle to make sure the efficacy of the chemotherapy is maintained.
2. I also wanted to know if I should be cautious of any of the supplements? I've read the Ben Williams book in good detail, and all of them talk of how the above supplements increase the efficacy of temozolomide, I don't really know if there is any reaction between lomustine and the above mentioned supplements, and that I need to be careful with or should I consider dosing down on?
3. Are there any adjuvants that you would suggest that can further help increase the efficacy of this combination? I was considering methadone, which I've read works really well with temozolomide, but I'm not sure if it'll work with this combination.
PS: I'd like to mention that I complete 7 months in this extremely tough journey, and this blog is my go to place to find quality answers to my queries. Thank you Stephen for sharing your knowledge and to all the members of this blog for sharing your experiences with us :)
My mother, a GBM patient(Methylated) has completed 3 Temozolomide cycles and starts with her next cycle being Temozolomide + Lomustine. She is on the following supplements:
Boswellia Seratta 4 g/day, Keppra 1000 mg/day, Curcumin 3 g/day, Quercetin(4 g/day), Fish Oil 4 g/day, Resveratrol (400 mg/day), Marrow Plus(6 caps/day), Echinsea(2 g/day), Bromelain, Ginger, Garlic, Ashwagandha, Melatonin, Vitamin D3, Selinium, Molydenum, Artemesia, Malatonin 1500 mg/day, Melatonin 20mg/day, EGCG extract 400 mg/day, Celebrex 600 mg/day
Plan to add: Care Oncology Protocol, Ruta 6 + Calceria Phos, Cannabis Oil, Low dose Naltrexone
I had three questions, would be great if you could answer:
1. My mom's blood counts are still not really good. Her WBC count is 1700 and her Platelet count is 120k. My oncologist is suggesting we start the chemotherapy protocol as it has already been 28 days since the last temozolomide cycle. He says that we will use fligrastim injections(WBC injections) to manage the further dip in WBC counts, if at all they happen. Wanted to know if any of you have an experience/knowledge of whether it is okay to start the temozolomide+Lomustine combination with the low counts that my mom has, or should I wait further? I ask because my oncologist is using this combination on a GBM patient for the first time, and he thinks it is a little late already to start.
I also ask this because typically the gap between two TMZ + Lomustine cycles is 36 days(6 days of chemo + 36 days for the next cycle, making it a 6 week cycle), while the gap between two Temzolomide cycles is 23 days. Wondering what should be the maximum allowable gap between a temozolomide cycle and a temozolomide+lomustine cycle to make sure the efficacy of the chemotherapy is maintained.
2. I also wanted to know if I should be cautious of any of the supplements? I've read the Ben Williams book in good detail, and all of them talk of how the above supplements increase the efficacy of temozolomide, I don't really know if there is any reaction between lomustine and the above mentioned supplements, and that I need to be careful with or should I consider dosing down on?
3. Are there any adjuvants that you would suggest that can further help increase the efficacy of this combination? I was considering methadone, which I've read works really well with temozolomide, but I'm not sure if it'll work with this combination.
PS: I'd like to mention that I complete 7 months in this extremely tough journey, and this blog is my go to place to find quality answers to my queries. Thank you Stephen for sharing your knowledge and to all the members of this blog for sharing your experiences with us :)
Sahil, to get TMZ+CCNU we must wait for a new cycle until the platelets raise above 100k. To take the previous round we waited for almost 2 weeks, climbing from ~50k level. Here https://clinicaltrials.gov/ct2/show/NCT01149109 they say also on criteria
ReplyDeleteAdequate bone marrow reserve:
white blood cell (WBC) count > 3000/µl, granulocyte count >1500/µl, platelets > 100000/µl, haemoglobin ≥ 10 g/dl Adequate liver function bilirubin < 1.5 times above upper limit of normal range (ULN), ALT and AST < 3 times ULN creatinine < 1.5 times ULN
Thank you Stefan! I've taken note of your inputs. In that case, will consider waiting a little longer to start the next cycle.
DeleteI believe you need to hold the naltrexone during the chemo, as it's purpose is to slow down the cancer cells. My Naturopath's notes state: " hold from day before chemotherapy until day after because I want your cancer cells to be rapidly dividing while you are taking Temodar/CCNU".
ReplyDeleteAlso my Naturopath prescribed this: Cura Pro 750mg 30 gels 1 capsule(s) Once a day With Meals To target inflammatory and immune pathways in cancer cells.
I also take Marrow Plus. Day before to day after chemo, I increase to 3pills 3 times per day. Otherwise, I only take three per day. They have given me neupogen injection a couple of times, and that brought my WBCs up pretty quickly. The Marrow Plus seems to keep the platelets in line. I also use lots of papayas, that I do not like, in smoothies. Here is a simple 10 natural things to do for platelets: https://www.top10homeremedies.com/how-to/increase-low-platelet-count.html. Good luck to your mother and yourself. Yes, this site is awesome!!
Thank you so much for bringing this to notice 4oregonz. I wasn't aware of this information on Naltrexone, glad I didn't start.
DeleteMarrow plus seems to be helping my mom with her platelet counts, not so much with the WBC counts however.
Pay attention. Methadon and naltrexone have the opposite effect ! Methadon is in theory aimed to support the chemotherapy by better and longer penetration in the tumor cells (very simply summarized), while naltrexone is helping in re-balancing the endocrine(melatonin)-cannabinergic-system/opioid-system in the brain (psychoneuroendocrine balance).
ReplyDelete@Svg. Thanks for your inputs! You're implying that melatonin and naltrexone shouldn't be used together, correct? Even after the chemotherapy is over, is that so?
DeleteIs it okay to use methadone while on TMZ+CCNU with all the supplements that my mom currently is on?
What are her lymphocyte counts? Neutrophil counts?
ReplyDeleteWhite cells are a diverse population that includes cells that can be tumor fighting (eg lymphocytes) or tumor-promoting (eg neutrophils). I would rather want to look at the lymphocyte and neutrophil counts individually, and also calculate the neutrophil:lymphocyte ratio.
Chemotherapy cycles are generally spaced according to the average time it takes for blood counts to recover. CCNU cycles are more spaced out because it takes about 6 weeks for cell counts to recover. There is no "maximum allowable" spacing. For patients who can't tolerate the standard doses of chemotherapy, an oncologist can either delay the start of the next cycle, or continue a regular schedule with a reduced dose. The standard schedule is a reflection of what the average person can tolerate, but as we know each patient is different.
As SVG mentioned, naltrexone would cancel out the activity of methadone (naltrexone is a mu-opioid antagonist, while methadone is a mu-opioid agonist).
There is inherent uncertainty in the cocktail approach. Nobody really knows how all these things will interact. Most drug databases don't include interaction data on non-pharmaceutical herbal supplements. Methadone is thought to be a chemosensitizer, so in theory could be used with TMZ+ CCNU, but I can't say how everything including all the supplements would interact. The most we can say with these experimental cocktails is that there are no known interactions, but there is always the chance of unpredictable, unforeseen interactions.
Thanks for your response Stephen and everyone. I'm so sorry I missed replying Stephen, largely because I got a little blocked with my mom's new chemotherapy protocol. She has done completed CCNU+TMZ cycles, and her blood counts have remained stable, I'm sharing the protocol that we used for her blood count support so that it might be of help to somebody:
ReplyDeleteFor platelets:
The only product that we have been using is Marrow plus, 6 tablets a day and it has worked quite well for us.
Other products that can be used are Papaya leaf tea and Tahini.
For WBC support,
We make my mom have 1 injections of pegfligrastim and fligrastim immediately after the chemotherapy.
We also give her Astragalus tea, also called as 'Katira' here in India. And we give echinasea every alternative week. These are the products that my naturopath oncologist suggested.
For Hb support,
We give 100 mg Iron + 500 mg Vitamin C.
We give 200 mg of bromelain before food for better absorption of proteins.
Didn't do anything for the RBCs because they've stayed stable throughout.