Getting My Life Back After Glioblastoma: Carol's Immunotherapy Story

[@karentarducci7559]

I worked on that trial at BMS. Glad it worked for her

[@RichardGerber-dy3pf]

Does anyone know how Carol is doing and if she is recurrence free? I know about this trial and others like it, combining PD-l1 inhibitors, and am very interested in the outcomes, and also in reading long-term progress reports for case histories like this.

[@55098]

I Also have GBM surgery and treatment . Been a heck of a journey right now I have a field cut in vision keep fighting my fellow fighters

[@karlanunez9865]

how are u know?, my mom was diagnosed last week

[@55098]

@Federico Bettini doing ok had a VP shunt put in back in January issue with hydrocephalus and seizures but still have a visual cut homonyms hemianopsia

[@RichardGerber-dy3pf]

Sean, when were you diagnosed? This is always important to add, because if you have survived for several years, it can give hope to those who are diagnosed now. I am a 13-year GBM survivor. For anyone interested in resources for GBM and other high-grade brain tumors, I suggest visiting virtualtrials.com/ , where you will find stories of long-term survivors and other useful information.

[@55098]

@@RichardGerber-dy3pf that's awesome I was diagnosed since March 2019. It is right occipital lobe GBM I've had 3 surgeries up to this point and have a VP shunt now as a result of hydrocephalus. Sadly this week I have been told through my chemo doc that it had returned so I'm awaiting the next treatment

[@RichardGerber-dy3pf]

@@55098 Keep fighting Sean, and look into clinical trials for recurrent disease. I also urge you to visit that site which can help you find resource to fight your tumor. Here is my story on that site: virtualtrials.com/surviverich.cfm

[@billygibson1790]

I have gioblastoma. Diagnosed 062020. We are progressing with LOCAL treatment options. ORAL CHEMO AND OPTUNE device. I may shortly try and ascertain what more permanent treatments for the disease may be available. My providers are telling me and i quote "its treatable, but not curable. I see a LOT of information in immunotherapies that can provide a more long term fix--

[@CancerResearchInstitute]

Hi Billy, to learn more about immunotherapy for brain cancer, please visit this webpage: www.cancerresearch.org/immunotherapy/cancer-types/brain-cancer

[@christopherperez2895]

Hey Billy are you still doing fine

[@billygibson1790]

@@christopherperez2895 yes. I Am very healthy and mobile to have terminal disease. I am following the current treatments. I just got health insurance after losing job based coverage and am getting disability So I can travel to get better more advanced treatments now!

[@christopherperez2895]

@@billygibson1790 I'm glad your still doing fine you got this.

[@irronman2365]

Billy, thanks for sharing,my mother has been diagnosed with GBM, what is optune device you mentioned ?

[@Ugcutebunnyhu]

I lost my aunt to glioblastoma stage 4 , she was in 80's and couldn't tolerate chemotherapy or radiotherapy and we lost her within one month of the diagnosis.

[@Optunity]

Why is this not available for all gbm patients?

[@tottart56]

Too sad. My sister was diagnosed in June 2019. I apologize to all of those who inquired about my sister. I was not notified until today that I had a message waiting. Sadly, my sister passed away after on August 19, 2020, after only 13 months :-(

[@harlembrown8987]

Im sorry to hear thst. I have been using another acct & just switched back seeing these messages

[@md.yousufali2766]

tottart how is ur sister's condition right now?

[@harlembrown8987]

Is she still with us??!! ❤

[@marymary7618]

How is your sister

[@sissysmith9156]

⁠

[@kylieroberts1128]

My fiancé has GBM. He had 1st craniotomy end of October. That removed whole tumour. Started Radiation/Chemo and now he has a 2nd tumour the size of an avocado there was no sign of in first surgery. He’s undergoing a second UV contrast assisted surgery in the next few days. But there’s no clinical trials available. No Optune. No immunotherapy. No gene therapy. I feel so powerless to help or try offer comfort…what do you do when there’s no hope

[@CancerResearchInstitute]

Hi Kylie- we are so sorry to hear about your fiancé. We have resources for patients and caregivers on our website. We wish you all the best with your treatment journey. www.cancerresearch.org/en-us/patients/free-resources-support-answers

[@salutehussain72]

Pray to one and only god ALLAH, soon he will be healthy by the blessing of Allah.

[@slharder1573]

​@@CancerResearchInstitute1:47

[@winkieblink7625]

Is Carol still a survivor? Nov 2021

[@wanetakollie3331]

You are so blessed that you are cure from your glioblastoma. My daughter has a glioblastoma too. I would love to know the doctor telephone number who help you

[@hemagusain4127]

My husband has grade 3 anaplastic astrocytoma can this therapy save his life ...

[@hemagusain4127]

Please reply me as soon as possible

[@ololubebenitah6134]

@@hemagusain4127 is he okay now

[@hemagusain4127]

@@ololubebenitah6134 he is no more death 2020

[@ololubebenitah6134]

@@hemagusain4127 I'm really sorry, what where his symptoms before he left please

[@joislobo]

Japan has anti viral drug which is under trial for glioma. I lost my mom for Glioma only 3 months after diagnosis with biopsy , chemo , radiation. After biopsy her health deteriorated

[@lindaferrari5182]

Brave woman

[@mohamedmukhtarmohamed390]

How can u help me please, I have patient with same Diagnosis, Glioblastoma

[@CancerResearchInstitute]

Hi Mohamed. Learn about immunotherapy for glioblastoma here: www.cancerresearch.org/immunotherapy/cancer-types/brain-cancer

[@brendanmanwaring9971]

My mother had glioblastoma, I guess if your younger you might be able to last a couple years, but my mom was 64 she died at 65. It was a nightmare. Back and forth to hospital wrong diagnosis, the one thing I know is your brain controls everything, my mom completely stopped talking one-day the day before she was talking. The next day she was talking normal. I know the first sign was headaches, then vision problems, then balance, then one day out of the blue she was acting so crazy, I mean people are going to kill her, there's a camera in vcr, it's nighttime not daytime. The worst is there's nothing that can be done. The doctor didn't tell me that at first. He said she needs brain surgery right away, I just was so scared that she would act crazy, the first thing I asked was will she be normal after surgery? It really messed me up because I always looked to my mom for answers, but now it seemed my mom was gone. All I can say it was a year of watching my mother suffer if I could do it over I would have had hospice right away, no suffering..

[@kimsihyung3686]

@@brendanmanwaring9971 My mom also have gbm grade 4 she remove the tumor and she is going to have a chemotherapy and radiation and I really have the hope that she will recover I do many research on this cancer and It was so bad

[@brendanmanwaring9971]

@@kimsihyung3686 I was already in your shoes, you need to get hospice, they will make sure she doesn't suffer, please do it now. They did the same to my mom it's all about money, please listen to me. You don't want to be traumatized like I was, hospice will make her not feel pain, and will save you from watching her slowly suffer. The doctors don't care and they can't save her they lied to me for insurance money. Just tell them now you want hospice care.

[@kimsihyung3686]

@@brendanmanwaring9971 she is really good right now I just want her to recover As l searched on this disease and it says the survival rate is 12 m Do you know if radiation and chemotherapy will kill the cancerous cells in her brain

[@jiakhan1306]

My brother died GBM 10-3-2022 he lives only 14months with gbm

[@mishadelacerna]

@Akshaj Khandelwal how is he?

[@nirmalaoli9404]

My husband also suffering with dis disease

[@sravanik2603]

My husband also. Since August 2022

[@jojobeanjojo5737]

Is this that one trial about using the herpie virus to attack the tumo r? My ex sister in law was diagnosed and she is deteroiting very quickly, if anyone can send me somewhere for any clinical trials, she is only 42 years old, its on her brain stem, affecting her swallowing and talking, they said inoperable, looking for hope. I love her dearly

[@CancerResearchInstitute]

Hi there, to find cancer clinical trials, please take a look at the "Clinical Trial Finder" page on our website: www.cancerresearch.org/en-us/patients/clinical-trials

[@gm3750]

Entered Brain and my condition. GBM Stage 4 and got no response- am I doing something wrong?

[@babyclothesandeverything6458]

I need help you

[@arielflores6260]

Please help my wife is 28 years old and has GBM she is on Avastin and chemotherapy she has 3 tumor i need help the tumor they took out grew back in 3 week help she can use this treatment

[@sisikelly6939]

@Priscilla Carey what is Ttemodar treatment please

[@harlembrown8987]

GBM always wants to groww back bc they usually cant get it all out. Go on yt! Look up cancer fighting foods & budwig protocol, gerson protocol. You can make the body hostile to cancer & disease

[@harlembrown8987]

@@sisikelly6939 Temazolamide is an alkylating cytotoxin. It is poison, like all chemo drugs

[@brendanmanwaring9971]

I meant your wife loves you, maybe since she's younger she might be ok, but my mom tried but God called her I guess.

[@Shaqlife]

@@brendanmanwaring9971 sorry for your loss, my Dad had GBM too he lived 18ms he passed away on his 70th bday AWFUL 😞

[@jenniferwells9032]

Good on you 👍❤️❤️❤️❤️

[@yanivbalas1]

R I P VERY SAD....

[@dhiahassen9414]

who died ? did she die ?

[@nidhibhatt2054]

My father has gliaoblastoma please help with the way forward for this immunotherapy treatment 🙏

[@irronman2365]

Hi Nidhi, My mother has been diagnosed with GBM recently.Have you decided anything on immunotherapy? Any leads will be highly appreciated.

[@nidhibhatt2054]

@@irronman2365 my father got diagnosed a month back and is on radiation and telezolomite without biopsy and surgery. I am trying to find some headway on immunotherapy but not able to find one. Request your guidance

[@irronman2365]

@@nidhibhatt2054 My Mother just completed radiation + TMZ 6 WEEKS. From last 1 month I have been searching for GBM, there are some points which we can share.

[@nidhibhatt2054]

@@irronman2365 yes sure I will do that thanks a lot !

[@CancerResearchInstitute]

Hi Nidhi, to learn more about immunotherapy for brain cancer, please visit here: www.cancerresearch.org/immunotherapy/cancer-types/brain-cancer

[@babyclothesandeverything6458]

My father diagnos with glioblastoma stage 4

[@MoonLight-vl1jt]

My first love died of GBM 😢

[@harlembrown8987]

Blessings to u. Some people never find true love. I send u light& love

[@hansen370]

Im sorry to hear that! I lost my Dad to cancer! CBD for life, from here out.

[@harlembrown8987]

@@hansen370 yes. Whatever pharma offers, do the opposite. The sea & the soil hold all cures

[@mariacostanzabrunetti6987]

Ciao Carol, mi scrivi in privato per favore?

[@CancerResearchInstitute]

Hi Maria. Unfortunately, Carol has passed, as noted in the video description. However, immunotherapy did extend her life and she was able more time with her loved ones.

[@annettewilson3291]

Please help

[@CancerResearchInstitute]

Hi Annette. You can learn about immunotherapy for brain cancer here: www.cancerresearch.org/immunotherapy/cancer-types/brain-cancer

[@souravdeepsingh0001]

How can i take part in this trial????

[@CancerResearchInstitute]

Hi Souravdeep, you can find clinical trials that match your diagnosis, stage, and treatment history with our Clinical Trial Finder tool: app.emergingmed.com/cri/home#partnerhome

[@souravdeepsingh0001]

Cancer Research Institute but how can i take part in trials?? I'm from india . Can you please tell me whole process??? .. Or just mail me details at [e-mail]

[@dipayaanroy137]

@@CancerResearchInstitute My Dad was diagnosed with Glioblastoma G4 on left side of brain last month, the only symptom we had was his difficulty in speech, and got operated on 17th Sept 2018, Currently he is undergoing radiation therapy with oral chemo just been a week it started what can we do to get the clinical trials.

[@saimshafique1730]

Dipayan Roy how is he now did he having any swollening problems

[@dipayaanroy137]

@@saimshafique1730 He is having slight swallowing problems now, we observe it while giving him medications. Please reply to us ASAP

[@andith]

Are all those cancer patients who participated still alive? If so, no more cancer for the humanity!

[@Sabouma28]

honestly? I doubt it.... GBM is one of the most aggressive types of brain tumors...