Tuesday, 28 February 2017
avastin
dear all, does anyone happen to have a link to the study that Avastin helps in the short term but causes satellite tumors? Thanks!
Monday, 27 February 2017
Upcoming trial of modified poliovirus for children ages 12-18 with recurrent malignant glioma
The anticipated start date is June of this year.
Phase Ib Study of Oncolytic Polio/Rhinovirus Recombinant Against Recurrent Malignant Glioma in Children
NCT03043391
Phase Ib Study of Oncolytic Polio/Rhinovirus Recombinant Against Recurrent Malignant Glioma in Children
NCT03043391
Stop chemotherapy?
Hi, firstable I would like
to thank you all for your support. I’m again sharing a new question. My niece
after two operation (she has a GBM no methilated) she was treated at the same
time with radiotherapy and chemotherapy for 6 week, and right now she is taking the
3rd cyclo of six (temodar 5x23 about 210 daily). At the end of the
sixth cyclo, the doctor had considered appropriate to stop the chemotherapy,
and there is not a forecast about to continue with new chemo treatment. I would
like to know your opinion about that. We are quite a bit worried, because the
risk of recurrence, and we don’t know if it would be convenient to talk and
insist to the doctor not to stop the chemo treatment.
I’m looking forward for
your answer.
Sincerely, Jose Mª
Dexamethasone - "Pseudo progression "
My husband commenced dexamethasone at 2mg in the 4th week of radiotherapy. He continued that for 2 weeks and then was weaned off. After 2 days off he had a partial seizure of one leg. He was re-commenced dexamethasone at 4mg. He has been on the 6mg for 4weeks. He has symptoms of being unbalanced and difficulty moving one leg so the dose has been increased to 8mg. Within hours he could walk better. How long to "too" long to be on this drug?
Thursday, 23 February 2017
chemo with dendritic vaccine
Dear all,
My son is finishing his second vaccine at IOZK. His tumor is astrocytoma III, H3K27m, low methylation ( our doctor still won't give us the percentage!), clean MRI ( only 4 months since surgery)
Van Gool is against any chemo for now. He wants to do another MRI in three weeks, and he added Accutane and Keytruda this time. Our US oncologist wants to do avastin and then temodar with CCNU. Another well-esteemed Russian NO who is very open- minded ( she was the one who recommended van gool to us) thinks we should continue with temodar while on vaccine since there is a good chance it worked till now. We are very confused - tend to just trust Van gool, but scared to give up chemo even for a month. Any thoughts? thank you!
My son is finishing his second vaccine at IOZK. His tumor is astrocytoma III, H3K27m, low methylation ( our doctor still won't give us the percentage!), clean MRI ( only 4 months since surgery)
Van Gool is against any chemo for now. He wants to do another MRI in three weeks, and he added Accutane and Keytruda this time. Our US oncologist wants to do avastin and then temodar with CCNU. Another well-esteemed Russian NO who is very open- minded ( she was the one who recommended van gool to us) thinks we should continue with temodar while on vaccine since there is a good chance it worked till now. We are very confused - tend to just trust Van gool, but scared to give up chemo even for a month. Any thoughts? thank you!
Wednesday, 22 February 2017
Gamma knife for low grade glioma
As there are so few studies for low-grade glioma, it is noteworthy whenever anything is published. A new study on Gamma knife for low-grade glioma is being prepared for publication:
Gamma Knife Radiosurgery for Low-Grade Gliomas: Clinical Results at Long-Term Follow-Up on Tumor Control and Patients' Quality of Life
Gamma Knife Radiosurgery for Low-Grade Gliomas: Clinical Results at Long-Term Follow-Up on Tumor Control and Patients' Quality of Life
I'll make a new Gamma knife subfolder in folder 1 of the Brain Tumor Libary and upload this study there.
Tuesday, 21 February 2017
Avastin & Lomustine Combo
We are considering adding Lomustine to Avastin for recurrent GBM.
Does anyone have experience with this regimen?
Thank you!
Does anyone have experience with this regimen?
Thank you!
Monday, 20 February 2017
Low Karnofsky (KPS) + Treatment GBM in Queensland
Hello everyone.
My 54 yr Mother in law was diagnosed with a tumour on 19th January and had surgery on the 24th January. They removed 80% of the tumour and confirmed it was Glioblastoma.
She did not recover well from the surgery. She was non responsive for a few days in ICU. Fast forward to now and she is yet to receive treatment. My mother in law has very little movement in her left side, is eating mash and drinking level 2 liquids which are rather thick. Bed ridden, in hospital being taken care of. She has physio every day and is slowly getting stronger and more movement on that side.
She received her diagnosis yesterday and wants to fight this. We want more time. I am searching for others who have had this same start to their battle with GBM. Thank you.
My 54 yr Mother in law was diagnosed with a tumour on 19th January and had surgery on the 24th January. They removed 80% of the tumour and confirmed it was Glioblastoma.
She did not recover well from the surgery. She was non responsive for a few days in ICU. Fast forward to now and she is yet to receive treatment. My mother in law has very little movement in her left side, is eating mash and drinking level 2 liquids which are rather thick. Bed ridden, in hospital being taken care of. She has physio every day and is slowly getting stronger and more movement on that side.
She received her diagnosis yesterday and wants to fight this. We want more time. I am searching for others who have had this same start to their battle with GBM. Thank you.
Saturday, 18 February 2017
About dosage of Maitake-D liquid version
have anyone tried the liquid version of Maitake-D? my wife is hard to swallow too many tablets and capsules, so i am trying to get liquid versions for her. the quesiton is about the dosage, similar to tablet issue, it says: standardized to contain 30% D-fraction 22mg, that is for each 6 drops, if it means each 6 drops contain 22mg D-fraction, 100mg per day means around 27 drops a day. if 22mg only contain 30% D fraction, 100mg per day means around 90 drops a day. which one is correct?
Roy
Friday, 10 February 2017
Tom Wangerin - Cocktail Profile and Questions
Hi all,
Although this is my first post, I have been reading every minute of every day. Such an amazing wealth of information on here. I would appreciate any advice on our current course of action and opinions on our cocktail.
My dad was diagnosed with a grade IV GBM. He had surgery on 11/23/16 with 95% resected.
Lab Results:
MGMT Gene Promoter Methylation – Detected.
Percent of MGMT Methylation is 36.19%
IDH1/2 Mutation – Not detected
Positive for 1p Deletion
Currently taking:
· Dexamethasone (Decadron) – He is currently taking 4mg/day but we are doing what we can to wean him off. We have been told this will dictate whether we go on Avastin.
· Eliquis – blood thinner - 5mg twice a day
· Keppra – 500mg twice a day.
· Bactrim (Antibiotic) – Original oncologist prescribed during chemo.
Supplements:
1:1 CBD/THC – Tincture drops in day, Oil at night.
Probiotics – Sibiotica (K-97)
Curcumin - Nutrivene Longvida 1000mg - 1x Morning 1x Night (1000-2000mg daily)
Fish Oil - Vital Nutrients - EPA-720mg, DHA-480mg per cap - 1x Morning
Boswellia Serrata Extract - Progena Meditrend – Currently taking (3) 333mg daily.
Melatonin - Vital Nutrients - 10mg/cap - 1x at Night (eventually will do 20mg)
Mushroom Extracts - Turkey Tail (Coriolus), Maitake D-faction, and Reishi each once a day.
Berberine - Vital Nutrients - 200mg/cap – starting with 1x day, soon 3/day.
Debating whether to add - Resveratrol and Green Tea Extract
Our NO was okay with all and suggested adding Cronaxal. I’ve struggled to find much convincing information out there, but I do trust our NO. Now the question is to use Cronaxal (expensive and high dosage) or get Sulfasalim (which Stephen ranked pretty high on his spreadsheet).
I read that this can benefit those that are NOT IDH mutated (which is us).
Genetic Testing
We are getting the tumor tested from Foundation One for more details – once we make sure there is enough tumor for them to test, and have some left for potential clinical trials. I’m keeping an eye out for EGFR, p53, VDR, HIF-1.
Any thoughts here?
Hoping for some advice in a selection of the following:
**Vitamin D3 – In some cases Vitamin D3 caused proliferation in some patients (Stephen W speaks of this: http://astrocytomaoptions.com/supplements/). Our NO was okay w/ Vitamin D3. Would checking his VDR receptor be of value for determining this, or is it safe (and potentially beneficial) to take 5,000-10,000iu daily regardless of tumor type?
I was very excited about a few of the prescription drugs below, but our NO was certain that none of them get past the blood brain barrier while taking doses safe for humans. We are still willing to give a few of them a shot, but I’m struggling to decide which combinations.
· **Chloroquine Phosphate – (if overexpressing the EGFR protein or p53 status is unmutated) & **DCA - Sodium Dichloroacetate –(if HIF-1 is expressing) http://astrocytomaoptions.com/targeting-tumour-metabolism/
· **Disulfiram – This drug looks like it has amazing potential.
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=707
· **Sildenafil & Celebrex: can work synergistically for both getting past blood brain barrier, anti-tumor qualities, and Celebrex potentially helping with a bit of edema.
http://onlinelibrary.wiley.com/doi/10.1002/jcp.24843/abstract
· VT-122 (Etodolac & Propranolol) – with low dose daily TMZ schedule. This had great results. Any reason why more people aren’t doing this themselves?
(http://meetinglibrary.asco.org/content/151704-156)
· CUSP9 – Looks like an amazing plan. I am yet to read of any results but I know many are starting to replicate this cocktail on their own.
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path[]=2408
Current Plan:
I. TMZ Schedule – Because he is MGMT methylated it was an easy decision to go forward with the monthly TMZ cycles. All of our docs have insisted on the high dose 5days/month schedule rather than a metronomic schedule, regardless of whether EGFR is over expressed. Thoughts?
https://academic.oup.com/jnci/article/107/5/djv041/891259/EGFR-Amplified-and-Overexpressing-Glioblastomas
II. Optune Machine – The UCSF board feels it’s not as beneficial as some of the studies make it out to be, and with it being such a pain to wear for the rest of your life… it’s not that easy of decision even with insurance coverage. I’m undecided here.
III. Prescriptions with TMZ/Avastin - If you had to pick one prescription duo to take with TMZ and one prescription duo to take with Avastin to make them more effective which would you pick?
Thank you all for pitching in. This journey has been life changing, but manageable with the help you all bring.
Although this is my first post, I have been reading every minute of every day. Such an amazing wealth of information on here. I would appreciate any advice on our current course of action and opinions on our cocktail.
My dad was diagnosed with a grade IV GBM. He had surgery on 11/23/16 with 95% resected.
Lab Results:
MGMT Gene Promoter Methylation – Detected.
Percent of MGMT Methylation is 36.19%
IDH1/2 Mutation – Not detected
Positive for 1p Deletion
- Completed his first round of daily chemo/radiation on 1/19/17.
- Our first image was taken on 2/3/17. We had our first consultation with the UCSF Tumor Board (Dr. Butowski) on 2/7/17.
- Tumor had not seemed to grow in size any, but did morph into a new shape/area which is scary to see. Next image in 2 months.
Currently taking:
· Dexamethasone (Decadron) – He is currently taking 4mg/day but we are doing what we can to wean him off. We have been told this will dictate whether we go on Avastin.
· Eliquis – blood thinner - 5mg twice a day
· Keppra – 500mg twice a day.
· Bactrim (Antibiotic) – Original oncologist prescribed during chemo.
Supplements:
1:1 CBD/THC – Tincture drops in day, Oil at night.
Probiotics – Sibiotica (K-97)
Curcumin - Nutrivene Longvida 1000mg - 1x Morning 1x Night (1000-2000mg daily)
Fish Oil - Vital Nutrients - EPA-720mg, DHA-480mg per cap - 1x Morning
Boswellia Serrata Extract - Progena Meditrend – Currently taking (3) 333mg daily.
Melatonin - Vital Nutrients - 10mg/cap - 1x at Night (eventually will do 20mg)
Mushroom Extracts - Turkey Tail (Coriolus), Maitake D-faction, and Reishi each once a day.
Berberine - Vital Nutrients - 200mg/cap – starting with 1x day, soon 3/day.
Debating whether to add - Resveratrol and Green Tea Extract
Our NO was okay with all and suggested adding Cronaxal. I’ve struggled to find much convincing information out there, but I do trust our NO. Now the question is to use Cronaxal (expensive and high dosage) or get Sulfasalim (which Stephen ranked pretty high on his spreadsheet).
I read that this can benefit those that are NOT IDH mutated (which is us).
Genetic Testing
We are getting the tumor tested from Foundation One for more details – once we make sure there is enough tumor for them to test, and have some left for potential clinical trials. I’m keeping an eye out for EGFR, p53, VDR, HIF-1.
Any thoughts here?
Hoping for some advice in a selection of the following:
**Vitamin D3 – In some cases Vitamin D3 caused proliferation in some patients (Stephen W speaks of this: http://astrocytomaoptions.com/supplements/). Our NO was okay w/ Vitamin D3. Would checking his VDR receptor be of value for determining this, or is it safe (and potentially beneficial) to take 5,000-10,000iu daily regardless of tumor type?
I was very excited about a few of the prescription drugs below, but our NO was certain that none of them get past the blood brain barrier while taking doses safe for humans. We are still willing to give a few of them a shot, but I’m struggling to decide which combinations.
· **Chloroquine Phosphate – (if overexpressing the EGFR protein or p53 status is unmutated) & **DCA - Sodium Dichloroacetate –(if HIF-1 is expressing) http://astrocytomaoptions.com/targeting-tumour-metabolism/
· **Disulfiram – This drug looks like it has amazing potential.
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=707
· **Sildenafil & Celebrex: can work synergistically for both getting past blood brain barrier, anti-tumor qualities, and Celebrex potentially helping with a bit of edema.
http://onlinelibrary.wiley.com/doi/10.1002/jcp.24843/abstract
· VT-122 (Etodolac & Propranolol) – with low dose daily TMZ schedule. This had great results. Any reason why more people aren’t doing this themselves?
(http://meetinglibrary.asco.org/content/151704-156)
· CUSP9 – Looks like an amazing plan. I am yet to read of any results but I know many are starting to replicate this cocktail on their own.
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path[]=2408
Current Plan:
I. TMZ Schedule – Because he is MGMT methylated it was an easy decision to go forward with the monthly TMZ cycles. All of our docs have insisted on the high dose 5days/month schedule rather than a metronomic schedule, regardless of whether EGFR is over expressed. Thoughts?
https://academic.oup.com/jnci/article/107/5/djv041/891259/EGFR-Amplified-and-Overexpressing-Glioblastomas
II. Optune Machine – The UCSF board feels it’s not as beneficial as some of the studies make it out to be, and with it being such a pain to wear for the rest of your life… it’s not that easy of decision even with insurance coverage. I’m undecided here.
III. Prescriptions with TMZ/Avastin - If you had to pick one prescription duo to take with TMZ and one prescription duo to take with Avastin to make them more effective which would you pick?
Thank you all for pitching in. This journey has been life changing, but manageable with the help you all bring.
Wednesday, 8 February 2017
Conversation with NO
Dear all,
I need some advice as to how much to share/not to share with our NO regarding my son's vaccine treatment. We just started vaccine with Van Gool ( three weeks after the end of chemoradiation)who thinks my son should definitely not do any chemo while on immunotherapy (except for, if we have PD1 , maybe Keytruda). He has low MGMT expression, which justifies the use of TMD, but his blood counts dropped really low the last few weeks of chemo and he generally tolerated it very poorly. Our NO previously was talking about either doing avastin or/and maintenance or CCNU based on the post radiation MRI ( which we will have for the first time since surgery in October).
While I tend to go with Van Gool's idea, I am not sure how much I should tell our NO. I am afraid if we put it on record that my son is doing DC vaccine, that would preclude him from further clinical trials. Conversely , if we don't follow the standard procedure, maybe we could be excluded from trials as well. Our NO is a good guy ( not a brilliant professional, though), but I am not sure how much I should/should not share with him.
Thanks!
I need some advice as to how much to share/not to share with our NO regarding my son's vaccine treatment. We just started vaccine with Van Gool ( three weeks after the end of chemoradiation)who thinks my son should definitely not do any chemo while on immunotherapy (except for, if we have PD1 , maybe Keytruda). He has low MGMT expression, which justifies the use of TMD, but his blood counts dropped really low the last few weeks of chemo and he generally tolerated it very poorly. Our NO previously was talking about either doing avastin or/and maintenance or CCNU based on the post radiation MRI ( which we will have for the first time since surgery in October).
While I tend to go with Van Gool's idea, I am not sure how much I should tell our NO. I am afraid if we put it on record that my son is doing DC vaccine, that would preclude him from further clinical trials. Conversely , if we don't follow the standard procedure, maybe we could be excluded from trials as well. Our NO is a good guy ( not a brilliant professional, though), but I am not sure how much I should/should not share with him.
Thanks!
Temozolomide vs PCV for recurrence
My husband's glioblastoma has recurred. He is having surgery for the second time (first time was August 2015). His NO is considering either a second course of TMZ or PCV. Any views on which may be better please? He is methylated and IDH1 positive.
thanks
Anne Marie
thanks
Anne Marie
Alpha lipoic acid
I find this very interesting reading
http://jeffreydachmd.com/2016/05/alpha-lipoic-acid-anticancer-agent-burt-berkson-md/
Thoughts?
http://jeffreydachmd.com/2016/05/alpha-lipoic-acid-anticancer-agent-burt-berkson-md/
Thoughts?
Friday, 3 February 2017
Hi Stephen,
Could I check if my interpretation of the G34r mutation of GBM is correct.
Does this mutation mean that only a small part of the tumour is methylated?
Stephen W added the following image from the study Hotspot Mutations in H3F3A
and IDH1 Define Distinct Epigenetic and Biological Subgroups of Glioblastoma
Could I check if my interpretation of the G34r mutation of GBM is correct.
Does this mutation mean that only a small part of the tumour is methylated?
Stephen W added the following image from the study Hotspot Mutations in H3F3A
and IDH1 Define Distinct Epigenetic and Biological Subgroups of Glioblastoma
Olaparib
Hello guys,
2 days ago a study about olaparib and IDH mutant gliomas appeared. Since olaparib is already an approved PARP inhibitor for treatment of ovarian cancer and trial for gliomas in the end of 2017 is expected, I thought someone might find it useful.
"The researchers tested several existing cancer drugs on the mutated cell lines. They found that tumor cells with the mutant genes were particularly sensitive to a drug, olaparib, recently approved for the treatment of hereditary ovarian cancer. The drug caused a 50-fold increase in brain tumor cell death."
https://www.sciencedaily.com/releases/2017/02/170202141211.htm
And link to the study:
Also I did a quick search for olaparib and glioma and there are already trials with olaparib and TMZ for recurrent GBM.
2 days ago a study about olaparib and IDH mutant gliomas appeared. Since olaparib is already an approved PARP inhibitor for treatment of ovarian cancer and trial for gliomas in the end of 2017 is expected, I thought someone might find it useful.
"The researchers tested several existing cancer drugs on the mutated cell lines. They found that tumor cells with the mutant genes were particularly sensitive to a drug, olaparib, recently approved for the treatment of hereditary ovarian cancer. The drug caused a 50-fold increase in brain tumor cell death."
https://www.sciencedaily.com/releases/2017/02/170202141211.htm
And link to the study:
2-Hydroxyglutarate produced by neomorphic
IDH mutations suppresses homologous recombination and induces PARP
inhibitor sensitivity
http://stm.sciencemag.org/content/9/375/eaal2463 Also I did a quick search for olaparib and glioma and there are already trials with olaparib and TMZ for recurrent GBM.
Thursday, 2 February 2017
Anyone have an index of cancer compass thread?
Hi all, i have gone through the 237 page wonderful thread, but it' s not able to search, i think most of the drugs and supplements already have answer there, but hard to do it again when have specific questions for some drugs. Anyone have done kind of index for that thread? really appreciate if can share with me.
Regards
Roy
Regards
Roy
About brand of supplements
Hi all,
In china, most available foreign brand is GNC and Puritan's Pride, are they ok? Any comments are appreciated. Key supplements are:
- Melatonin
- Vitamin D3
- Garlic
- Zinc
- Curcumin
- Maitake-D
- PSK
- Selenium
- EGCG
Sativex dosage
Dear all,
We just got Sativex but are not certain about the dosage. Has anyone used it? how many puffs ? Shold there be dosage escalation? Thanks!
We just got Sativex but are not certain about the dosage. Has anyone used it? how many puffs ? Shold there be dosage escalation? Thanks!
Wednesday, 1 February 2017
Celebrex control edema? also question about boswilla
Hi all,
I come from China,this blog is wonderful to help my GBM wife.I want to start with a quick question. Stephen,i saw in the library excel that celebrex can help reduce edema,but i can not find related study in the library, do you have it?
I read the study on boswilla serrata control edema pretty well, just want to confirm is that still the best way?
Regards
Roy
I come from China,this blog is wonderful to help my GBM wife.I want to start with a quick question. Stephen,i saw in the library excel that celebrex can help reduce edema,but i can not find related study in the library, do you have it?
I read the study on boswilla serrata control edema pretty well, just want to confirm is that still the best way?
Regards
Roy