Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by julesaxon on Fri Jul 15, 2016 08:21 PM

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On Jul 15, 2016 7:46 PMMeghanismswrote:

Hello all, my name is Meghan, my mother, Sally was diagnosed with GBM back in april. They found a total of five cancerous tumors in her brain, two of which were very small, three were bigger. She had the biggest one removed, and then underwent 6 weeks of radiation and chemo. We actually just found out yesterday that the cancer has progressed and didnt seem to want to be responding to that particular treatment, so now we are looking to dana farber in boston for research and clinical trials as well as startign her on avastin next week. I'm...I'm scared. We all are. She's made it clear shes going to keep fighting, that she has no intentions of going anywhere. Shes only 52, she's young and healthy apart from this. She eats a hell of a lot of berries and I've started to tell her to cut back ondr.pepper"" target="_blank" rel="nofollow">http://dr.pepper" target="_blank" rel="nofollow">dr.pepper because tumors need sugar to survive. I keep tryign to tell myself that just because the radiation didnt work it doesnt mean theres no hope. I'm trying to research what i can. I guess I came here to find out if anyone else knew someone who had a similar set of circumstances. They had this diagnosis, radiation didnt work but then a trial did. She has a blood clot in her leg too. I've heard something about raw cannabis juice helping combat cancer but My mom is allergic to soy, i have no idea if the juice would have any soy biproducts or anything close to that.

Hello Meghan, I had two GBM stage 4 in twelve months.  First was removed by surgery followed by Chemo and radiation.  The second, twelve moths later, was even bigger at the size of a large egg.  Second was also removed by surgery and chemo laced wafers (Gliadel wafers) were packed into the hole where the tumour was removed from.  The chemo on the wafers goes straight to work on cancerous cells that could not be removed by surgery and kills them off.  the wafers disolve over a few weeks in the brain.  Two years later I have had two clear MRI scans.  Altogether I have received 5 cancer diagnoses and I am beating them all with faith in the Lord, positive thinking, wonderful progressive surgeons and a hard nosed will to win.  Dont be frightened, Read my book about my story. "Fulfilling your dream; the battle to beat cancer" by Julian Axon.  Available onAmazon.com.  Mine is not a sob story about WHAT I went through but a success story about HOW I went through it.  I now give motivation talks to cancer groups and field questions from around the world on the issue of living with cancer.  I have been there many times and can help people with what to expect.  Feel free to E mail me 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by billnmick on Sat Jul 16, 2016 03:57 AM

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On Jul 15, 2016 7:46 PM Meghanisms wrote:

Hello all, my name is Meghan, my mother, Sally was diagnosed with GBM back in april. They found a total of five cancerous tumors in her brain, two of which were very small, three were bigger. She had the biggest one removed, and then underwent 6 weeks of radiation and chemo. We actually just found out yesterday that the cancer has progressed and didnt seem to want to be responding to that particular treatment, so now we are looking to dana farber in boston for research and clinical trials as well as startign her on avastin next week. I'm...I'm scared. We all are. She's made it clear shes going to keep fighting, that she has no intentions of going anywhere. Shes only 52, she's young and healthy apart from this. She eats a hell of a lot of berries and I've started to tell her to cut back on dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper because tumors need sugar to survive. I keep tryign to tell myself that just because the radiation didnt work it doesnt mean theres no hope. I'm trying to research what i can. I guess I came here to find out if anyone else knew someone who had a similar set of circumstances. They had this diagnosis, radiation didnt work but then a trial did. She has a blood clot in her leg too. I've heard something about raw cannabis juice helping combat cancer but My mom is allergic to soy, i have no idea if the juice would have any soy biproducts or anything close to that.
Hi Meghan I'm really sorry for the news you have been given, my brother was a very,very fit person, in fact he played semi pro table tennis, he was diagnosed with 1 tumour, he was given 12 months to live, like yourself we all researched what was good/bad for him, I also joined loads of cancer websites praying there would be some hope, he was only 54, he never gave in either, the only thing that helped him was steroids near the end, but as soon as they stopped being any use, just as his consultant said, the end came so quick, I begged the consultant for advice/help but nothing could be done, the only thing you can do is pray for her, may God protect her and her family . Bill

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by wwjdmom on Sat Jul 23, 2016 03:50 PM

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When I learn of survivors I am at once in awe and doubt.

Is it luck? Is it God? Is it bad doctors? Does it matter where is the brain it is? Left or right lobe?

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by drowen on Sat Jul 23, 2016 08:10 PM

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On Jul 15, 2016 7:46 PM Meghanisms wrote:

Hello all, my name is Meghan, my mother, Sally was diagnosed with GBM back in april. They found a total of five cancerous tumors in her brain, two of which were very small, three were bigger. She had the biggest one removed, and then underwent 6 weeks of radiation and chemo. We actually just found out yesterday that the cancer has progressed and didnt seem to want to be responding to that particular treatment, so now we are looking to dana farber in boston for research and clinical trials as well as startign her on avastin next week. I'm...I'm scared. We all are. She's made it clear shes going to keep fighting, that she has no intentions of going anywhere. Shes only 52, she's young and healthy apart from this. She eats a hell of a lot of berries and I've started to tell her to cut back on dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper because tumors need sugar to survive. I keep tryign to tell myself that just because the radiation didnt work it doesnt mean theres no hope. I'm trying to research what i can. I guess I came here to find out if anyone else knew someone who had a similar set of circumstances. They had this diagnosis, radiation didnt work but then a trial did. She has a blood clot in her leg too. I've heard something about raw cannabis juice helping combat cancer but My mom is allergic to soy, i have no idea if the juice would have any soy biproducts or anything close to that.

Dear Meghan, 

I am always saddened to see mail in my box from CancerCompass as it mean someone id looking for hope. However, I am delighted to tell my 47 year old  son's story, it demonstrates there is certainly hope.Diagno sed (2005) at Oschners in New Orleans (Surgery minimal resection) and subsequently at MD Anderson with a very large stage 4 GBM (additional surgery in Houston) followed by radiation and Temodar then immediately on to CPT-11/ Avestin (without waiting for re-occurence) experimental program for an entire year. My son has been cancer free for 11 years without any paralysis or mental issues. I think the unusual protocol of of not waiting for reoccurence may be why this use of CPT-11/ Avestin was so successful. Unfortunately, my son is the only one I know of done this has recieved this regimen in that particular sequence. All my good thoughts and prayers for you and all of you undergoing the ordeal.

Best Wishes,

Don Owen

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by amygaber on Sun Jul 24, 2016 01:16 AM

Quote | Reply

On Jul 23, 2016 8:10 PM drowen wrote:

On Jul 15, 2016 7:46 PM Meghanisms wrote:

Hello all, my name is Meghan, my mother, Sally was diagnosed with GBM back in april. They found a total of five cancerous tumors in her brain, two of which were very small, three were bigger. She had the biggest one removed, and then underwent 6 weeks of radiation and chemo. We actually just found out yesterday that the cancer has progressed and didnt seem to want to be responding to that particular treatment, so now we are looking to dana farber in boston for research and clinical trials as well as startign her on avastin next week. I'm...I'm scared. We all are. She's made it clear shes going to keep fighting, that she has no intentions of going anywhere. Shes only 52, she's young and healthy apart from this. She eats a hell of a lot of berries and I've started to tell her to cut back on dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper " target="_blank" rel="nofollow">dr.pepper because tumors need sugar to survive. I keep tryign to tell myself that just because the radiation didnt work it doesnt mean theres no hope. I'm trying to research what i can. I guess I came here to find out if anyone else knew someone who had a similar set of circumstances. They had this diagnosis, radiation didnt work but then a trial did. She has a blood clot in her leg too. I've heard something about raw cannabis juice helping combat cancer but My mom is allergic to soy, i have no idea if the juice would have any soy biproducts or anything close to that.

Dear Meghan, 

I am always saddened to see mail in my box from CancerCompass as it mean someone id looking for hope. However, I am delighted to tell my 47 year old  son's story, it demonstrates there is certainly hope.Diagno "" target="_blank" rel="nofollow">http://hope.Diagno " target="_blank" rel="nofollow">hope.Diagno sed (2005) at Oschners in New Orleans (Surgery minimal resection) and subsequently at MD Anderson with a very large stage 4 GBM (additional surgery in Houston) followed by radiation and Temodar then immediately on to CPT-11/ Avestin (without waiting for re-occurence) experimental program for an entire year. My son has been cancer free for 11 years without any paralysis or mental issues. I think the unusual protocol of of not waiting for reoccurence may be why this use of CPT-11/ Avestin was so successful. Unfortunately, my son is the only one I know of done this has recieved this regimen in that particular sequence. All my good thoughts and prayers for you and all of you undergoing the ordeal.

Best Wishes,

Don Owen

Don, My husand had/has the same protocol.  Avastin from the beginning with Temodar and radiationl.  4 years 4 months.  No one will really put you on avastin from day 1.  We got it at Rittenhouse Hemotology and Oncology in Philadelphia

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by BRC233 on Sun Jul 24, 2016 01:50 AM

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Hi Meghan, Sorry to hear about your mother. Is her tumour a tumour a Glioblastoma? What part of the brain is it in

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Harsh04 on Mon Aug 01, 2016 09:22 AM

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Hello, I am from India

My Mother, 57 yrs old was diagonised with GBM (Stage4) in May 2014 after which she underwent surgery followed by radiation and 12 cycles of Temozolomide.

In addition to the above, i have been giving her homeopathy medicines from Dr. P. Banerji (Kolkata, India)

Since last 1 week she has developed extreme muscles weakness in her legs, so much so that she cant even stand and walk. He gait had changed about a year ago, but nevertheless she could walk and take care of herself.
Also, she has severe trembling of limbs for about 1-2 minutes, atleast twice to thrice a day.

I am looking for some assistance if someone could guide me on the prognonsis of GBM.
I am told that this could also be a steroid-induced myopathy due to which Dr. is avoiding to give Dexamethasone. (Infact, he didnt prescribe anything on our last visit 3 days back after she showed these symptoms)
 She has stopped Dexamethasone 4mg 6 months ago since the MRI in Dec 2015 showed 'progressive reducing' tumor and Dr. concluded that since the tumor is responding well to treatment, no need of further Chemo.

Thanks

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by julesaxon on Mon Aug 01, 2016 01:33 PM

Quote | Reply

On Aug 01, 2016 9:22 AM Harsh04 wrote:

Hello, I am from India

My Mother, 57 yrs old was diagonised with GBM (Stage4) in May 2014 after which she underwent surgery followed by radiation and 12 cycles of Temozolomide.

In addition to the above, i have been giving her homeopathy medicines from Dr. P. Banerji (Kolkata, India)

Since last 1 week she has developed extreme muscles weakness in her legs, so much so that she cant even stand and walk. He gait had changed about a year ago, but nevertheless she could walk and take care of herself.
Also, she has severe trembling of limbs for about 1-2 minutes, atleast twice to thrice a day.

I am looking for some assistance if someone could guide me on the prognonsis of GBM.
I am told that this could also be a steroid-induced myopathy due to which Dr. is avoiding to give Dexamethasone. (Infact, he didnt prescribe anything on our last visit 3 days back after she showed these symptoms)
 She has stopped Dexamethasone 4mg 6 months ago since the MRI in Dec 2015 showed 'progressive reducing' tumor and Dr. concluded that since the tumor is responding well to treatment, no need of further Chemo.

Thanks

Hello Harsh04

At age 60 I too had a stage 4 GBM.  In fact, after surgery, radiation, Chemotherapy and heaps of cortizone the GBM recurred in the same place and even bigger than the first one within twelve months.  During surgery to remove the second GBM my neuro surgeon implanted chemo laced wafers Gliadel Wafers) into the brain where he removed the second tumour.  The chemo in these wafers goes straight to work on tumour roots left behind and sets about killing all remaining cancerous cells.  Since then I have have two clear MRI scans and I am hopeful for a third clear one in early 2017.  Altogether I have been diagnosed with 5 cancers over the past ten years.  If you would like to know how I handled these diagnoses, especially the GBM"s and their side effects / after effects, you can read my book "Fulfilling your dream; the battle to beat cancer" (Author Julian Axon).  The book is available on  Amazon as paperback or Kindle and goes right through my whole experience of the diagnosis, treatment and living with a GBM.  It is an easy read and I get very positive feedback from readers right around the world.  My story is not a sob story about what I have been through but it is a success story about how I went through it.  Good luck to your mother in her own battles but believe you can beat it.  I did!!!

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by drowen on Mon Aug 01, 2016 02:33 PM

Quote | Reply

Many of us that have taken care of GBM (diagnosed at major center via biopsy) patients who have undergone complex therapies that have deviated from the standard of care, understand the sense of bewilderment that faces decisions on long term treatment. It is obvious that for most the standard of care is (surgery, radiation,Temodar) is the starting point. Care must be taken with the attempt to mix anti-oxidants in the diets of GBM patients taking various medical therapies, as it is believed many cancers are killed because of their susceptbility to reactive oxygen species generated by the treatments. Please take the advice of your Cancer specialists. As a medical scientist whose son is a GBM survivor of over eleven years, this disease can be treated. Numerous survivors are now occuring. Hopefully we will find that common thread and a perferred treatment regimen. Do not give up hope or begin using non-traditional medicines before you exhaust what science based medicine has to offer.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Harsh04 on Tue Aug 02, 2016 05:28 PM

Quote | Reply

Hi Juleaxon,

Thanks for a peep into your survivor story. commendable indeed. I am finding it too difficult to give hopes to my mother. she just feels sad and depressed all throughout the day thinking She was allright 2 yrs ago and now is totally dependent on somebody.

I will surely ask about the 'wafer implant' to my Dr. at my next consultation. as of now, the latest MRI is almost same as it was 3 months back. However, clinical symptoms are just worsening. hence i am clueless !

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