The Glioblastoma Brain Cancer Patient Journey DEMYSTIFIED.
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- เผยแพร่เมื่อ 26 ส.ค. 2022
- "The Glioblastoma Brain Cancer Patient Journey DEMYSTIFIED" talk is part of the "If I Were Your Family Member" Cancer Patient Series.
It is directed toward patients with glioblastoma multiforme (GBM), and their loved ones.
This talk does not exist. It has not been done before! It will help patients with GBM ensure they get cutting-edge care.
In this talk Dr. Goueli goes through the ENTIRE GBM cancer patient journey. He discusses clinical trials, molecular testing, current therapies, etc. He very simply explains to patients what treatments they are likely to receive and the side effects associated with them. He teaches patients how to think about their cancer to optimize their chances at success.
Patients with GBM should watch the following "If I Were Your Family Member" talks in sequence:
1) Optimizing Your ability to fight cancer (Ten Cancer Survival Tips) that you can find here:
• The VERY FIRST Talk Ca...
2) This talk (The Glioblastoma Brain Cancer Patient Journey DEMYSTIFIED) of the "If I Were Your Family Member" Cancer Patient Series.
Dr. Basem Goueli MD/Ph.D/MBA has a unique background you can see here:
/ basem-gou. .
Please go to the Revolution Cancer youtube channel to see the remaining cancer survival tips:
th-cam.com/channels/tzu.html...
Please subscribe to the channel if you feel it's beneficial to do so.
Please visit revolutioncancer.com to see more cancer patient information.
***The slides in this talk should say Grade instead of Stage. We apologize for the oversight.
I’m 26 now - I had surgery last year at 25 years old. I’m still on chemo now. Wish me luck
We all wish you the best of luck!
A son (42) of a close friend was operated of GBT (grade four) few month ago. He is still investigating the best posible treatment. We think is a good idea to be open to new ways to treat this horrible disease. Thanks very much.
My girlfreind died from this i wouldnt wish it on my worst enemy im prayin for you all who are living with this my heart aches for you all
God Bless You, same boat here, had golf ball size tumor taken out last night. Also waiting for Pathology, but thankfully no pain. i've been watching soothing stories about Near Death Testimonies.
i had my brain surgery in december of 2019 followed by radiation and chemo. did at mayo clinic in Minnesota. i'm sill here! andi's about every 4-6 months. i'm still alive but im not myself. completely disabled:( i trust mayo completely and do everything they tell me. i'm still here!
My mom was diagnosed with GBP grade IV yesterday. She is very positive and we will fight. Next week she well have surgery. Hope everything goes well.Thank you for you video, I learnt a lot and will be helpfull in future treatment. Good bless you
I wish you and your mother all the best!
Awesome talk. I would have liked to have heard this when 1st diagnosed. So helpful. I was diagnosed April of 21 had surgery then chemo and radiation
All of my scans have looked good. No sign of reoccurance. I am 23 months post surgery and doing great thus far. Just having a ray of hope helps tremendously with this journey. At first I was not given much hope. I decided I couldn't navigate daily life that way. So I decided, to concentrate on the positives. #1 I'm still here. My last oncologist appointment I was finally given positive affirmation. Dr. Said, every day that you live that this doesn't come back, you are one day closer to it never coming back. Attitude makes a difference especially on this journey.
I love everything about this. At this point you could give this talk better than I could. I am completely with you and wish you so very well.
What was your first symptom and the time between first
Symptom and diagnosis
I am so happy to read your post! There are people out there pulling for better research and procedures for this battle! Awesome to hear you’re well! ❤️
Thank you for your story. My husband is going through treatments now. He is completely disabled, right side paralyzed. We look for hope . My prayers are with you that you are still alive and doing well.
Not a patient, but preparing to apply to medical school next year and have very high hopes for getting into neurosurgery. Really great presentation! Would love to work with this doctor. What a great personality and skill to explain such complex topics to all audiences.
Thank you for your wonderful comments. I wish you the best of luck in your neurosurgical career. Please take care.
My mom was diagnosed 1 month ago with glioblastoma, her right side is paralysed; speech is very limited and the neurologists said it is inoperable. She always ate healthy; didn’t smoke or drink or ever complain about headaches, she always had an active life. It is so painful and once the doctors said she might live max up to 5/years i felt the earth is going to swallow me. It is a horrible feeling /thought and awareness that my mom will depart from me. She is 57 years old and i still cannot believe this happened. But God has a great plan for everyone and through His Grace miracles can happen but God knows better why this happened and what the future brings. I just pray and hope that the remaining time will be pain free. Last time she was still joking with me #Godknowsbest #Strengthandlovetoall
In the same boat bro...Jai Mata Di...God is kind❤❤
Same thing about the healthy lifestyle for my husband! Incredible and hard to wrap my head around!
So sorry about your mom. I was blown away and couldn’t grasp this was happening to my husband. He did everything right in his life too.
Same for my sister diagnosed few mths ago too . My life is over if I lose her . I won't do it once she's gone I've nobody else
God loves our brother and sister more then we ever could.@@sunshine-bs2jx
“A good quality of life” is something that can vary from person to person… a good quality of life could me you’re still breathing for one person and for another it could mean your able to go to the bathroom, talk, and not spend 20 hours a day sleeping .
Yes, this is implied when I say "a good quality of life", but I didn't feel it was necessary to be overly pedantic.
Don't apologize for explaining in details, the people that complain about that can look elsewhere
This is the best presentation I have ever seen. I wish I had watched this eight months ago. Thank you so much. My mom is battling GBM
I am so sorry about your mom. Thank you so much for your kind feedback. It really helps. I wish you and your family, and especially your mom, all the best.
@@revolutioncancer6610 thank you so much
Thank you so much for this video. However my husband was a healthy, fit 58 year old man. Just had stress hb for 3 years. Early August 2019 my husband told me that he is struggling to consentrate when reading... He was a good reader. On Monday 19 Aug morning he had which seemed to be symptoms of a stroke... He walked into the ER, and the ICU.. Had a mri brain scan and immediately they told us that he had 2 brain tumors one as big as an egg just above his right ear, other one smaller at the back... GBM stage... Grade 4!!! They did 2 more scans to make sure that there are no other tumors anywhere else. The neurologist said that it is a very fast growing and even if they operated and gave chemo and radiation would always return. The big tumor was at difficult place to operate.. Did a biopsy on small tumor.. Gave him 3 to 6 months. We decided to not go the conventional way.. We just invested to consentrate on providing my husband with a good quality of life. Early September he had a stroke which left him semi paralised on the right side, but he worked hard and could walk again and also his a peach improved a little. However late November (after 3 months) he had another mri which showed that both the tumors had doubled in size with much swelling and it has spread. I was privileged to be able to take care of him for 5 months and 5 days when he went to rest on 23 January 2020.
Thinking of all who has the GBM struggle. ❤
❤❤
My mother (62) is in same boat. She has 5 cm brain tumor on right side and her left side of body get paralysed. It was hard decision for us to go for her brain surgery But she survived first surgery and body recovered fine and left hand and legs are working fine and there is no symptoms of paralysis, it has been 1 month for surgery.
But I am afraid of its recreation in next 8 to 12 months.
What should be the next step guys...
Love you mom ❤❤
You are a beautiful person. Such a loving spouse. God bless.
I’m so sorry for the loss of your husband..
My husband’s first symptoms were headaches. All day he was taking Tylenol. Then he saw bright red and blue colors during a dental treatment and thought he was experiencing a panic attack. It scared him. The MRI showed he had two small tumors at the bottom of his brain and one Lima bean very aggressive tumor on his occipital lobe. When I heard “aggressive” I went numb or shock. Don’t know what else Dr was saying to my husband at that point. Lost my breath. The aggressive tumor was surgically removed but biopsy said GBM stage 4.
@@TR-nv3if Thank you... not an easy road, but the Lord is leading..
My mom was overall very healthy until late December ‘23 and was suffering headaches, loss of balance, falling, and a few other motor symptoms. It got bad very fast and we ended up taking her to the ER in the beginning of January to find out that she had Grade IV GBM in her right frontal lobe. She had it surgically removed middle of January and is now completely back to normal, even better in some ways luckily. She was given a prognosis of 10 months to 3 years and is set to start chemotherapy and radiation towards the end of February. I’m hoping she can make it to the 3 year mark or hopefully surpass the 3 year mark.. She’s only 57 and I can’t imagine losing her at my age of 24..
I wish her all the best. I'm so sorry this is happening.
Just wanted to jump in and thank you for the encouragment and peace I got from watching this. I had surgery a couple weeks ago for a grade 4 monster, haven't started treatments yet, but I'm ready for the fight. Also, it was a real pleasure looking at a version of my 8th grade self when I was still smart af and ready to be a geneticist (I ended up in the arts :P). Thank you again, much love brother. You a good one.
Thank you for this wonderful comment. I wish you so very well.
What is your symptoms and what is the time between first symptom and diagnosis 😢
@@hemantsharma1858 Only ataxia and headache. Diagnosis about a week later. Zero symptoms since.
Mucho ánimo
@@monkeybot only a week between first symptom and diagnosis so fast
My husband died in 2016 with glioblatoma after 17 months. He was 64. There is absolutely no cure!! If you have Cadillac insurance, the docs will put you through a ton of treatment that simply destroys what quality of life that is left.
I am very sorry.
You are totally right.
It is a tough cancer but there are people who have went on to high quality life after treatment. My nephew is at the front end of this and I work in the medical field, so I understand what you are saying. I am so sorry for your loss and pain.
My brother is going through this right now at the age of 58 😢. I am is POA for health care, one week post-surgery he is at a decision making cross road. Do I do radiation or do I use the little time I have left of what quality I have left and forego the radiation. It’s heartbreaking. My heart goes out to all of you that have had to go through this.
Thank you for sharing. My husband has been diagnosed with it 2 months ago and UCSF has been honest and said possibly 2 years with standard treatment.
I just wanted to say thank you for all that you do. My mom was recently diagnosed with grade 3 glioma and I’m heart broken but I’m going to do everything I can
I wish you and her so incredibly well. Thank you so much for the kind message.
How is your mother, i am facing the same with my father GBM4- Non Methylated
I had a glioblastoma in November 2019. I had surgery, and the cancer was removed. I had radiation and chemo. It has been 3 yes 6 months since that surgery. Well, my last MRI in March showed a small growth. So I need to have surgery soon so it doesn't spread to other areas. It makes me nervous this time. I have afib now and an irregular heartbeat. I have had cardio aversion trying to get it back in rhythm, but 4 times hasn't done it.
atrial fibrillation can be difficult to fully resolve, but many people live with it without complication. When it comes to atrial fibrillation there are three treatment approaches:
1) Rate control
2) Rhythm control
3) Cardioversion
The underlying idea is that atrial fibrillation is where, as the term implies, the atria don't contract in an appropriate rhythmic fashion and basically fibrillate. Nonetheless, as long as the heart rate is reasonable things usually go well. Specifically, we ensure the heart rate is between 60-100. If the heart rate is above 100 we call that "atrial fibrillation with a rapid ventricular response". This can be problematic because the heart doesn't have enough time to fill with blood before it contracts, thereby resulting in a decrease in the heart's output (we call this the cardiac output). Accordingly, we often use medications to contain the heart rate below 100 if a patient has atrial fibrillation.
The second primary concern with atrial fibrillation is that it increase the risk of strokes by approximately 4-6% per year (this varies a bit from patient to patient). The reason for this is that when the atrial chambers of the heart "fibrillate" the blood running through them is a bit stagnant. This can increase the risk of the blood clotting in the atria, most often on an area we call the left atrial appendage. The resultant blood clots can then "shoot off" and cause a stroke at a risk of about 4-6% per year, as above. As such, we generally put patients with atrial fibrillation on blood thinners (e.g. eliquis, pradaxa, xarelto, coumadin, edoxaban, etc.) to prevent blood clots and strokes. In addition, many people are on aspirin (usually a baby aspirin) in this regard.
Ultimately, people with atrial fibrillation can do very well as long as they are treated appropriately. Let's revisit the three treatment approaches we take with atrial fibrillation now:
1) Rate control: As I stated above we typically want the heart rate below 100 in patients with atrial fibrillation. As such, we use drugs to accomplish this. Drugs often used include:
a) calcium channel blockers (e.g diltiazem)
b) beta blockers (e.g metoprolol)
c) digoxin
So long as your heart rate is well controlled, even if the atrial fibrillation is present, you should do well.
2) Rhythm control: This is when we use medications to try and get the heart into a sinus rhythm. Medications often used are amiodarone, flecainide, sotalol, etc. Sometimes this works, sometimes it doesn't, but it's a widely used approach.
3) Cardioversion: This is where we try to convert the heart back to a normal sinus rhythm using either electrical (shock) or medical (using a drug called ibutilide) therapies.
Some people, such as yourself, fail attempts to get the heart into a normal rhtyhm. This can happen for various reasons. Often times this is because the left atrium, one of the four chambers of the heart, is too dilated. Nonetheless, patients can still do extremely well with atrial fibrillation taking a rate control approach discussed above.
In terms of your GBM it seems that you have done extraordinarily well to date and I fully applaud you for that. You are doing tremendously and it certainly sounds like surgery is a viable approach at this time, but obviously it's impossible for me to say anything more definitive without knowing more about your case. You clearly are in good hands though.
I wish you all the best...
That a good outcome! Wow! I had a large tumour removed 3 days ago and my prognosis is poor. About 13 months. I feel like my limbs have been severed. 😢
Gamma Tiles were approved by the FDA the end of September 2023. There is hope! God bless you in Jesus name.
@@michaelb41what is gamma tiles? Had my friend hubby ask northern westchester hospital about getting gamma knife for wife GBM gr 4 cerebellum wild type. They said , no, sorrry, not for you’re type !! Why not??? Now I’m
Telling him to demand the right to try !! We joe have that right !! I’m so mad I’m twisted !!
Gamma tile is nuclear medicine. I was told in was approved by the FDA in September 2023. Cesium is placed at the time of surgery at the space left where a tumor was removed. It releases radiation to the affected area for 100 days. It has serious risk. A nuerologist would determine if this is for you. God bless you.
A close friend of mine has GPM and her son has chosen no chemo or radiation because her left side is now paralyzed and doesn’t feel her quality of life will be good. We have to support him in his decision, but I worry about how long her life will be. This was an outstanding presentation and I appreciate knowing more. Thank you!
How is your friend now?
She has a few days before her end of life😿
@@clarkbennett2312 I’m sorry to hear … sending strength
My mother died from this. Her dr who diagnosed it told her that the remains months-of her life would be better if she did not have the treatments. However she wanted the treatments. Unfortunately her Dr was right. She lived seven months. Most of those months in bed It was sad .
My neurosurgeon just flashed two MRI pictures up. I couldn’t really see. He was always in such a hurry. Even after surgery the information level was low. I am stuck trying to find more info on the internet, so don’t criticize. It got me to your reputable site.
My husband died of glioblastoma 17 years ago ... He lasted 8 months after diagnosis. He was 59 years old. His death has ruined my entire life!!!
I am so sorry
This was so informative! Thank you so much ❤
Just shared this with a family suffering - thank you for doing this again.
Thank you for this information. My dad was recently diagnosed and this is bringing some comfort and positivity.
I think your dad is on a similar timeline as my sister who is 75 and otherwise healthy and very active. Her treatments will begin in just over a week.
@@janetmyers3729 is she starting temodor?
@@tubularbrit88 yes. She started a three week course of radiation and the tremor one week ago. So far no nausea.
fantastic talk, thanks so much, I learned so much from you 😀
thank you for the kind comment. It means a lot. I wish you so very well.
I am sadly so disappointed in the health and medical industry at least in our area at the moment! My FIL was diagnosed the beginning of June and after 10 days of consistent outreach to so many hospitals and imaging centers while having at stat order from Dr we have yet to find a place to take him for his functional MRI. One place scheduled him mid July and couldn’t take the stat order at this time. With how fast these things grow it’s no wonder the survival rate is short! Waiting a mth between each tx is no way to save lives or even attempt!
I am sorry you are facing these issues
@@revolutioncancer6610 thank you
I was diagnosed with aggressive cancer (misdiagnosed thank God) and my pulmonologist didn't see me for 3 weeks ajd diagnostic surgery was 7 weeks later it's a great point and CRAZY part of medical system
Yes, we’ve had the same problem getting mri scheduled for my spouse…
My dad is currently 67 yrs old. He recently beat stage 4 lung cancer that the doctors didn't think he would. He went to chemo once a week a radiation 5 days a week that targeted both sides of his lungs. He is very sensitive to medications and is allergic to a lot of them. He had the worst allergic reaction to the first chemo that they tried giving him the nurses and the doctor said. He had every allergic symptoms there was. At this time I had never seen my daddy more afraid nor have I ever seen him in so much pain. They changed his meds I believe twice and then he seemed to be doing okay. But the radiation and chemo destroyed his heart. He has 20% heart function now. And recently he was diagnosed with stage 4 glio blasfema. What can i do to keep him safe? I am the one who takes care of him. I haven't been able to work since he had his lung cancer
I'm sorry about all of this. I would need to know so much more to make any comment. It sounds like you are an amazing caregiver though.
Very interesting
My family member is going through this battle now. Diagnosed in March, Biopsy, Craniotomy left him unable to function. He’s paralyzed on one side, can’t talk, walk, go to the restroom and has a palsy that gives him knee jerk motion that is so intense he rubs the skin off his bones. He has 3cm tumor in the parietal lobe. Zero ability to proceed with chemo radiation. We had no idea he could end up in such awful shape from the surgery! The worst thing ever!
I am truly sorry
@@revolutioncancer6610 thank you! He passed away August 7 at 5:15 am. We are devastated but glad he’s no longer suffering. I plan to get involved to see if I can help with research funding. Thank you for your comment. It means so much!
@@taribeer4985 I never have words for this. Sorry seems hollow and insufficient.
@@revolutioncancer6610 it’s difficult on the receiving end, too. I would simply say I am sorry for your loss. It says it all…🌷
@@taribeer4985 I am truly sorry for your loss.
My Wife Laurie has a 1" by 2.5" GBM grade IV but it is inoperable because located towars the center of her left brain, we only found out 2 weeks ago! she is 61 years old and has lost loved ones, late husband before me , and her dad less than a year ago!
I am terribly sorry to hear this.
So sorry
My husband was diagnosed with glioblastoma multiforme grade IV Feb. 9, 2022 and passed away May 26, 2022. He was 64. He had surgery, chemo, and radiation. I was told his tumor had many mutations. It's a terrible disease.
I am truly sorry
So very sorry! What were his symptoms when he was diagnosed? My fil has been tentatively diagnosed but we are currently waiting full pathology report to come back before final diagnosis. We have appt with neurologist June 20th. His only issue at the moment is suddenly started having problems with words and speech. No headaches or anything else. They are saying stage 4. Lemon size tumor. He is almost 73 yrs old.
So sorry. God bless.
My condolences to you. My hubby passed away in 11/22 after suffering from GBM for 2 and a half years.😢.He too,did chemo and radiation. It's a devastating,ravaging cancer.
I have a grade 3/4 astrocytoma. they removed 60%. My treatment has been playing out just how this Dr talks about. I'm 35 going into cycle 5 chemo as well as using "MMF". I'm still on the "first bullet". Hope for the best?
Monday August 28 2023 my sister has just been diagnosed with this 3 weeks ago.
I'm so sorry. I wish her and you all the best.
How is your sister doing today?
Gamma Tiles were approved by the FDA the end of September 2023.
Yes, this talk was given before that. Take care...
This is a great video
My husband just passed away 2 months ago from Glioblastoma multiform 😭. We have been battling this cancer together around 9months and a half.
I am so sorry
My deepest condolences 😪 My hubby passed in Nov of 2022 from GBM, 2 and a half years from time of diagnosis . A ravaging, devastating cancer.
Where can I contact Dr. Basem Goueli ?
It's extremely urgent
Thank you very much for all the information provided in this video. Recently my father found out that he has a GBM IV grade... Our whole family is devastated... Thanks to the information in the video I know that to expect next and what are the options to fight this horrible cancer.
Professor, are there any chances to ask for an online appointment? We are based in Poland and I would love to ask some questions about the NGS and possible clinical trials. Thank you very much for the work you are doing to help and support patients!
I am so sorry you are dealing with this. I wish you so very well on your journey. I'm happy to meet with you for FREE to talk more. My email is basemgoueli@gmail.com. I will help in any way I can.
@@revolutioncancer6610 Thank you very much! There are no right words to express how thankful I am. I sent you an email with the detailed explanation of our situation.
How did the appointment go?
@@jannieveer-kuropka3499 did you get intouch personally with them? Looking for all info I can get for my FIL as well. Just lost my dad to blood cancer MDS in February and can’t believe we could be losing my FIL now as well!
Is there a link to the fist video you mentioned? I cannot find it on your channel.
th-cam.com/video/AsaclBWksWo/w-d-xo.html
My dad just died from this terrible disease last week he was 66 and battled for 21 hard months. In the midst of all this God has been good and merciful I believe and have peace that my dad made it to heaven because of what Jesus Christ did on the cross for every human.
If you know someone who has this disease do not lose hope. God is not willing that any should perish but that all come to repentance.
shall I get the slides?
My father died last week because of GBM. It was detected October 22 and undergone surgery by Nov 2. 40 Gry radiation for 15 days and used temsol for recovery. It was MGMT type.
I am so sorry
So grateful for this video. My mom (age 68) was just diagnosed with grade 4 GBM. Looking for the best care/Doctor/Clinic near West Palm Beach, FL or San Diego, CA. If you have recommendations, could you please reply? Thanks!!!
I'm not familiar with the West Palm Beach area, but San Diego has UCSD which is tremendous.
I wish you and your mom all the best
If you can go to LA I have a VERY GOOD friend I grew up with. She's a doc. Her female very good friend is on year 5+ years of treatment with Dr Keith Black.
How is your mom doing now?
@@samaanthag She fought hard for 8 months. Most evil thing I've ever witnessed 😢
@danielaevseev7412 I'm so sorry :( I assume she did the traditional chemo and radiation? Ugh this is the worst. My mom was just diagnosed a month ago...
My daughter is taking Vorasidenib on an extended trial. Her debunking was two years ago and we chose to "wait and see" meaning no radiation or chemo -thank goodness or she would not have qualified for this medication. What are your thoughts on this medication?
It had excellent data for idh1 mutated low grade glioma. I would need more details on your daughter’s case but the nejm paper on the drug was favorable
Is there a difference with multicentric GBM and GBM? Is there a possibility that a person could have 2 different kinds of tumor?
I was diagnosed within theast week an told weeks given an that I need to take a MRI it's on the right an had swelling last scan!)Can you advise please as I have one daughter an I am scared!
Your physicians appear to be doing everything right. A MRI is very much needed.
My husband died from GBM just two days before you posted this video. 😢
I am sorry
@@revolutioncancer6610 thank you 🙏🏼
Hi Karla. I am sorry to hear about your dear husband. My dear husband has just been diagnosed with Glioblastoma high grade and gee whiz I am pretty nervous. I am pleased to find this ypu tube presentation. Take care.
@@carlabolling2277hello,my mom she has GBM, how is your husband's last 2 months progressing? What kind of treatment period did the doctors recommend?
So sorry ..
My wife lost her life to a GBM. Over a 17 month period we must have had 7-10 MRI's. A Functional MRI was never offered to determine whether my wife's cancer getting "worse" was actually pseudo-progression or actual cancer growth. Also, for a fast growing cancer like GBM, we got different information from different Oncologists as to how often an MRI should be taken. One said every month and another was sticking to the 2 month cadence. What about Gamma Knife radiation? Can that be a replacement for the standard 6 month mini-doses?
Gamma knife works. My friends FAMOUS Dr in NY said it’s not for her type of GBM BS !! It is! Look up dr Lederman he is the guru in NY that my friend chose not to go to. Sad she didn’t see it 😢
Yes look into gama knife. I heard it’s more targeted to the tumor rather than radiation spread all over the brain. I asked Memorial Sloan and they said my husband’s tumor was too spread.
@@lauren92567😮😮fg
Can treatments other then chemotherapy and radiotherapy help with Glioblastoma in children 8 years old?
I do not know of any that have been proven in a randomized control study
Question on the slide of MGMT promoter: how is hypermethylated, responsive or not? I also see lots of clinical trials just identified as either but not hyper, is there a way to identify this as well? Lastly, the molecular testing- I did genetic testing and gave the results plus the information from pathology would all of that be found in those two tests?
There are trials that will specify unmethylated MGMT versus methylated/hypermethylated. If it doesn't say unmethylated then it likely correponds to either all comers or methylated/hypermethylated. It depends on the molecular testing they did. The testing in house pathology labs do is relatively limited, but if your test was sent elsewhere (e.g. FoundationMedicine, Tempus, Caris) then you likely had full next generation sequencing, PD-L1, TMB, and MSi.
I talk about molecular testing here:
th-cam.com/video/AsaclBWksWo/w-d-xo.html
Best of luck to you
@@revolutioncancer6610thanks for the extra info. Is Dr. Goueli still treating GBM patients at this time?
Hi my mum has gilomblastoma grade 4 just had debulking surgery. Many people have told me cancer hates oxygen but listening to this it seems cancer needs oxygen in cells to grow which is bit confusioning. I have a 2 friends with brain cancer, one first diagnosis 2nd a regrowth after 3 year. They are doing oxygen chamber therapy and have had good results. Do you have any views or knowledge on this treatment and if you think it would benefit this type of cancer if cancer actually does hates oxygen?
Hyperbaric oxygen treatment really hasn't been proven to treat glioblastoma. Indeed, there are a lot of myths regarding oxygen and cancer on the internet, which is unfortunate. For four years I gave two separate lectures to medical school students on free radicals and antioxidants. However, I don't want to get too much in the weeds here. The bottom line is the notion that cancer cells "hate oxygen" is wrong and the use of hyperbaric oxygen therapy in glioblastoma simply hasn't been proven. To this end, it's probably worth knowing that there are a lot of people who feed off cancer patients and their loved ones by offering oxgen treatments, high-dose vitamin Cs, infusions of various cocktails, etc., outside of a typical medical setting. In my personal opinion, they are stealing peoples' money, but I am admittedly heavily biased towards proof of benefit, science, basic human decency, etc. In terms of your 2 friends with brain cancer I'm not entirely sure what to make of it. I would have to know a lot more about the cases, but the principle behind high oxygen therapy is to facilitate the development of free radicals that can be toxic to all sorts of cells, potentially including cancer cells. Nonetheless, I'm really happy for your friends and if your mom wanted to try hyperbaric oxygen for GBM in some capacity I don't think it would hurt her.
My sister’s doctors at a very big teaching hospital told her there are no clinical trials for her. Should we trust them on this? Why would they be so certain there or none andhow in the world could we find one if they couldn’t?
I would venture outside of the hospital. Many big teaching hospitals fail to do their duty by having appropriate clinical trials for various reasons. Indeed, in my opinion, the primary reason to go to a big name institution is for their trials. All you need do is watch the other talk I referenced and go to the clinical trial section. Go to clinicaltrials.gov, use the beta version at the top link, and put in your location and distance you are willing to travel. Search for glioblastoma and you will find what you are looking for (make sure to check on the "enrolling" status button"
What age is this most common in?
Hi Doctor, what's your opinion on Ketogenic Metabolic Therapy?
I'm just not sold on it yet. There are numerous ongoing studies exploring the potential benefit of a ketogenic diet, but until I see those results, I simply can't recommend it at this time.
I have a low grade glioma and it’s malignant and I don’t know if it’s cancer or not yet. I don’t know what my survival rate will be. I don’t know if I will be able to have children later on or not. I still am waiting on my results. So I’m waiting on answers. It’s complicated I’ve had my surgery. I intend of going through remission and chemo if I need to. I’m not going to rule it out it will give a higher life expectancy. I have not felt like myself sense I left the hospital unfortunately. I have not been myself in whole host of ways. I don’t know how long I will live I don’t know if I will be able to have a kid later on or not. I don’t know what to expect but they took a tumor out of my pre frontal cortex. Am I scared not really mainly because emotions are hard since surgery. But otherwise I don’t know how to be afraid of it to begin with. If I live I live if I die I die neither sounds great either way you slice it.
Thank you for sharing your story. I wish you so very well. Please keep me posted on your progress.
@@revolutioncancer6610 gladly right now I don’t know more than I’ve said as soon as I do I’ll let you know though
Octavia, I hope you are alive to read this... how are you doing?
@@samaanthag doing pretty good, getting through my chemo pills cycles. My head feels weird since the surgery and I’m still not fully back to myself. But on the plus side for someone with grade 2 cancer I don’t feel so much like I have cancer. Although my neurologist might be prescribing me pills for my dulled emotions and lack of drive. Otherwise still going out and doing things. Really thankful it was only grade 2 and not anything more serious. How are you doing?
@@octaviapatrova2581 So glad to hear that! It's crazy how life changes eh?
My mom went through surgery about a month ago to remove a glioblastoma from her right frontal lobe and currently going through appointments with oncologists to discuss her situation. This video and the comments have been great!
Is anyone eligible for clinical trial? The hospital that did my dads biopsy said he has to wait for a genetic testing to come back to determine eligibility
Depends on the trial eligibility criteria
Watch the other video i did for all new patients
There is a section on clinical trials
Depends on the trial
Watch the very first video i did for all new patients
There is a section on clinical trials
My brother suffering from this .Left frontal lobe measure 4.5 cm.multiple lesion seen in bilateral gangliocapsular region left thalamus, left cerebellum.the largest one in that measures 18 mm.GFAP mutation is there strongly positive.IDH1: negative tumour cells .ATRX : STRONG NUCLEAR expression. P53 : strong nuclear expression. KI-67 : 45% . CD : negative tumour cells. Is it easy to treat due to location .whether any medicines are there to treat this? What are the steps to treat this ?
The video will walk you through how this is presently treated in the US for the most part. I wish you and your brother very well.
Basically untreatable atm unfortunately...most people usually last acouple years through multiple surgeries and chemo
Hello, what treatment did you choose and how is your brother doing now?
Doctor - your thoughts on CBD oil and medicinal cannabis for Glioblastoma?
No harm in doing it, but I do no feel it has a big impact on the cancer.
@@revolutioncancer6610 Thanks, was also thinking of it for symptom management as much as affecting the actual tumour
@@clintonmaher6930 yes, that sounds very reasonable along with doing standard treatments or enrolling in a clinical trial. I wish you the best of luck.
I’m sorry, but Decadron is an evil drug. It led to my mother’s demise. They kept telling her she needed to get stronger before they would treat her with either immunotherapy or chemo, but she couldn’t get stronger because the steroid depleted all her muscle strength. She could barely walk, let alone exercise, because the steroid caused extreme weakness, which kept her bed bound, which compounded the muscle atrophy in her legs, which worsened her weakness…ensuring she’d never get better. She never did get strong enough to commence treatment and she died very quickly because of the doctors’ very poor knowledge of how to take care of patients and how to HEAL them. They have a shitty rusty toolbox filled with broken tools, and they think they’re helping patients with all their drugs. Hospitals are THE place to go if you want to die. You know, there ARE other things one can do to reduce brain swelling, but too many people put all of their eggs in the allopathic basket because they get sucked into the ‘standard of scare’.
My dad has surgery in 7 hours 🙏🙏🙏
WE wish you and him the best of luck
How is he now, My father’s surgery is over
@@_Babu_TDMy father is doing great right. How is he ?
i’m listening to this and I’m not texting. I’m speaking in slowly. I have brain cancer and the medication is worse than having the cancer. It has mentally physically got me 1000 times worse I never had radiation. I never had chemo and I’m glad I never did. I’ve had this and it was found in 2009 I had a biopsy. I was not told. Yes this is true story, I had a biopsy and 2009 and they did not take enough cells to know what kind of tumor I have I was not told and this is now 2023. I found out when I came out of state and to another state and told me I always had at the doctors that I had at my hometown basically told my family it was all psychological, but there was nothing wrong with me. I was like to I just like doctors now for this I have PTSD I have symptoms that are beyond comprehension. I can’t speak well right well walk well here well I understand and when I have seizures the pressure in my head, I pass out, mine was found by accident and a accident. I know I had it a long time but I’m suffering and I can’t breathe well because the pressure in my head right now I’m able to talk but in the morning and then my sleep is beyond comprehension what kind of pain, I can’t believe what kind of Nuro oncologist. I had that lied to me for so many years and didn’t tell me things and I didn’t even know or it was not explained is it is put my family through so much. I don’t trust the medical system anymore, I go from doct to the doctor with all kinds of symptoms and problems from falls. My face is sideways now I have a deviated septum bones, but the list goes on and on, I’m sorry anybody has this disease but to say you understand no you don’t you don’t I mean I saying this to you, Doctor there are many good doctors, but why why in biopsy and surgeries things go wrong that happens but to not be told and I found out in 2019 10 years after I had a biopsy in another state I get confused and I guess I am right now very tired. I guess I’m just saw this and I’m just venting it out. I don’t know why but I have mood swings. That’s all I can say I didn’t listen to the whole thing all I heard is something like understood no no, I wish everybody well and again, Doctor this is not against you at all. I’m going through a fight of emotions and anger for a reason besides a tumor in my head and cancer they know it’s a glioma. That’s what they’re saying. I don’t know astrocytoma, but my symptoms and my seizures are so terrifying. I just wish I was told this is what gets me why why why why not tell me
My partner died last year. He had 2 tumors at the front of his brain. Metastases from lung cancer. He was too advanced for surgery. The thing that makes me mad is that he was a transplant survivor (liver) the immune suppresants fed the cancer. Not fair. He was 57.
I'm so sorry to hear this Jane
@@revolutioncancer6610 thankyou
@@revolutioncancer6610 is it common for immune suppressants to cause cancer? He was on them for 7 years
@@janewagner1601 it is a complicated question with a complicated answer. It is relatively uncommon but certain types of immunosuppression can absolutely increase the risk of certain cancers. Lymphomas are the most common cancer we see in this regard.
@@revolutioncancer6610 thankyou. I guess he didn't have a chance of survival as the brain surgeon wouldn't operate. He kept this all to himself and didn't tell anyone. He was diagnosed in October 2021 and died 4 January 2022.
Side effects of radiation are downplayed by doctors. Edema and hydraucephalus, radiation necrosis are the really worst side effects from radiation. Edema can be treated by steroids. Hydraucephalus might be relieved by shunt if put on time. Necrosis is as bad as GBM itself.
Don't think it's too hard to tell the difference between tumor progression and effects from radiation. Not only based on images, but also based on symptoms.
The timing for radiation and chemo after surgery should be reconsidered to extend the benefits from surgery as long as possible. More people refused radiation after succesful surgery and seek other alternative treatments.
Simon Entwhistle Entièrement d'accord avec votre commentaire sur les effets II des radiations ...
Êtes-vous concerné aussi par un GB4 ?
Localisé où ?
Et dans ce cas quels traitements ou interventions avez-vous déjà subis ??
De quels traitements alternatifs (efficaces !!) parlez vous ?
Thanks a lot for your answer
Cierto
I agree the side effects from radiation were very debilitating for my mother. The radiation in her case killed brain tissue that it had to travel through to get to the tumor. Her first dr told us that . However it was the only option and she wanted to try it.
What do you think of Dr. Baskins’ gene therapy Adv-Tk therapy?
It's interesting. HSV1 based treatments have proven effective in Japan and one is already approved based on early data. I can't make a prediction here, but it would be like so many other trials and worth a shot depending on the situation and other available trials.
My dads tumor was in his frontal lobe inside his brain
Avastin can also exclude you from Clinical Trials. We found this out the hard-way. Our Oncologist immediately put us on Avastin when my wife started to experience Aphasia and after the fact learned for some clinical trials it disqualified my wife.
I am sorry to hear that
May I ask why was she given Avastin for aphasia? My husband has just recently got this from his 3rd craniotomy.
@@gabrielle5175 My wife was coming off a radiation+chemo therapy and had developed a fair bit of inflammation...she started to have trouble speaking and completing sentences. Her Oncologist after looking at the MRI had recommended Avastin. Within 2 days of the Avastin treatment, her aphasia went away. When my wife was first diagnosed, a number of NeuroOncologist ruled out surgery. We were getting opinions from various places and UCSF had stated they could remove 70% of my wife's tumor. We were seeing an integrative oncologist at this time and told he were were considering surgery. My wife did not have "clean margins" and so we also used Avastin to try to concentrate the tumor to prepare for a possible surgery.
About a year after her diagnosis after a craniotomy, radiation + chemo, my wife was on another experimental therapy that ultimately did nothing for her. At the time someone had told me about Rick Simpson Oil (Cannabis Oil), or Full Extract Cannabis Oil (FECO). I didn't look into it at that time, but later I did (after my wife passed). I wished I had because based on everything I've read about Cannabis Oil, it likely would have saved my wife's life had we started giving it to her from day one. I would strongly suggest you look into RSO or Cannabis Oil for your husband. It's not CBD oil (tincture). But a tar like substance typically stored in a syringe. You want the full extract as you want to include all the helpful cannabinoids and terpenes. Take a look at the following:
1. CannabisHealthRadio.com - Corrie Yelland -- 100's of podcasts with various people that used Cannabis Oil along with dietary changes to defeat cancer....various cancers.
Corrie can refer you to oil suppliers.
2. AuntZeldas.org -- Mara Gordon -- works with cancer patients on dosing, etc., and produces Cannabis Oil herself.
3. BuyRickSimpsonOil.com/shop - they produce RSO, ship world wide, they have a fair bit of information on their site about cannabinoids, cancer and dosing.
4. Dennis Hill -- th-cam.com/video/8GXlCRKc248/w-d-xo.html -- Dennis is a biochemist (worked at MD Anderson in Houston), cured himself of Stage 4 Prostate cancer using Cannabis Oil.
Dennis researched why it was so effective and can explain in it layman's terms.
5. Paper on how Cannabis Impacts Cancer Cells - encyclopedia.pub/entry/21365
6. Clint Werner -- journalist that cover's the Cannabis medical news (part of his presentation on how Cannabis fights brain cancer) -- th-cam.com/video/F8eNzzjhZMk/w-d-xo.html
7. If you husband starts Cannabis Oil and isn't squeamish about suppositories, this route is supposed to help absorb THC into the blood stream faster and can result in a greater %
of THC reaching the brain. THC binds to CB-1 receptors on cancer cells and results in the cancer cells producing a substance that shutdown down the cells ability to produce ATP (energy)
resulting in cancer cell death (apoptosis).
Lost my mom to this
I am truly sorry
Im very Sorry to hear this , Wish u all the love u can get and the best in Life ❤️🙏
Sir
Iam from India
27 years old
Recently diagnosed with Oligandroglioma grade 3
Alhamdulillah my surgery completed successfully
They can remove entire tumor
If there left any microscopic cells that we can’t see with eyes for that they are giving 30 days radiation with chemo pills..
Sir this can be cured or not???
For some reason I'm just seeing this now. For starters, yes, grade 3 oligodendroglioma is theoretically curable. In terms of seeing microscopic cells there is no current way to do that which is not experimental. Your physicians will do periodic MRIs to track your cancer, but you have done great already completing surgery and from what I can tell your physicians are doing wonderfully, and will be giving you chemoradiation. I wish you all the best and am obviously completely with you.
Which hospital?
no cure
can't believe anyone can be forced to have surgery against their 6will😮
i have grade 4 gb
I was told I have stage 4gbm I was made to have craniotomy against my will and then given radiation to control symptoms I never had I was given 1 week to live it's been 2years by myself and here I sit homless in my car because I got kicked out after 6weeks i had to do radiation the doc who did surgery won't see me at all says I'm a illegal liability??????what that means idk
In November 2019, I fell, and they did a CT. They found a tumor on the front right side of my brain. It was GBM. I had surgery 3 days later. The cancer was sent to the University of Nebraska for a biopsy. It took a week for results. That was a long week. I went home after a short stay in the hospital. Then I had radiation and chemo. After i finished the radiation, I stayed on the chemo. I had MRIs done every 3 months. Well, it was 1 year, 2 years, and 3 years . I have now reached 3 years 6 mo. Cancer free. I am so blessed. Because at first I. Was told I had 6 months to live. The Dr. was surprised to see me doing so well. I just told him I had just stayed positive and didn't let it stop me. I told god I needed 2 years back in 2021 because in 2023, it is my 40th wedding anniversary.its in July, 3 months to go. But now I have been told to go to KU MED CTR because they can't help me anymore. Where I am at, and I need to see another Dr. so I have an appt. In May. I will see what happens. As long as I make it till July 13. That's all i need. I'll let you know what happens after my appt. Wish me luck, and a few prayers couldn't hurt.
Wish u the best and Hope u Will win this fight ! Love u stay strong ! Much blessings ❤️🙏
@@jackierajewski3166 How are you doing today Jackie?
Close friend DX Aug 2023. Got her on fenbendazole & no sugar low carb diet. After 7 wks, the GBM DID NOT grow back !! Tried to get get her to do radio static gamma knife surgery which is less invasive and more targeted . but she opted for Rockefeller medicine treatment.. whole brain radiation and chemo (temodar)
I feel broken she didn’t listen to me 😔
Its not your place to determine her treatment.
You simply know nothing.
His was a little bigger than a gulf ball
My 32 year old brother passed away last 4 months due to this life threatening High Great Glioblastma disease😭😭
I'm truly sorry
Wrap the head in castor oil packs. Wrap all organs in castor oil packs. Every night/day. Castor oil turbo charges lymphatic system, breaks up tumors. Helps you sleep better!! I am using the wraps now for stage4 breast cancer. Tumors are shrinking. ThankYou Lord.
Please talk more slowly so we can clearly hear and understand what you are saying.
I'm sorry you had difficulty. You can slow down my speaking rate on youtube by clicking on the gear like button and putting it 0.5 speed.
Please appreciate that I am an exceedingly busy physician and made this talk for free. I receive no income, advertising, money, etc., from it. I don't want to. Having said that, I did spend countless hours preparing and giving this talk, and did the best I could. If I talked any slower it would have been several hours longer (it is already over an hour).
I'm sorry it disappointed you...
No idea why such an interesting lecture from an undoubtedly well-intentioned speaker has to curveball into stereotypical do-gooder virtue signaling regarding guns. The topic is medicine, not politics. Beats me.
I am sorry it came across that way. All i was saying is i am not a gun person. That is it. I did not make a comment on the gun control issue in the lecture.
With that said i also did not want to give the impression I am a gun fanatic.
@@revolutioncancer6610 Dear Dr. Goueli, I really appreciate that you took the time not only to answer my comment, but also countless other ones on this video.
While I did not assume ill intentions, it just gets tiresome after a while when hardly a topic can be raised without immediate display of agenda towards one side or another, it has basically become a reflex driving societal division ever further.
In this case, the mere display of bullets being grounds for assumption of extreme gun fanaticism.
It's a general issue all over social media and beyond, and I didn't really mean to snap at you personally. Indeed, I think highly of you. Thanks for all you do.
Dear Dr thank you for lecture. You certainly are a very knowledgeable dr. The lecture however loses its impact for me, I stress for this is only for me personally, due to your habit of constant unnecessary words. Kay, Like, Right, guys,we are going to talk about, OK. I understand you are very enthusiastic and that comes across and you are going to have a very successful career and will be doing a lot of public speaking. Breath. Slow down speach. See a speech coach. Sorry, I don't want to be mean.
@@catswambo9706 This is a laughable comment. I was seventh in the country in high school in forensics. The approach I used was very much intentional as I gave what is arguably the absolute best talk on the internet for gbm patients and their families FOR FREE.
To do what I did in one hour in the way I did if is unprecedented.
Go find a single talk that covered everything I did in an hour. It does not exist.
Next time feel free not to watch the video and I promise you the world can do without your preposterous and ridiculous comments.
Honestly, you need to work on yourself because only a certain type of person writes a comment like this on a talk compiled entirely FOR FREE.
@@catswambo9706 Case in point: th-cam.com/video/6Nnb6JhsSXQ/w-d-xo.html
I lost my mum from glioblastoma in march 23 x she lasred 13 months from diagnosis xx i never see any charitys for it x
I am so sorry