grade 4 glioblastoma

Glenda_GBM Survivor · January 2012

deepwater55 said:
Don't give up
did he go to the Bumrungrad in Bangkok
thats where i am .its a terrific hospital
i was working offshore in ivory coast west africa.flow from rig to local hospital where ct showed the tumour. and flew here
within 24hours of arrival i had mri ,ct scan ,and surgery with near total removal of tumour
now at day 8 of chemo and radiation,with 30 more to go..
regaining my strength ,up walking ..and most important keeping my spirits high and a smile on my face
i hate to disagree but I am in charge
Gary

Wife Pregnant DX with GBM
Hi..From Philippines here.My wife ( 31 years old) was DX with GBM on December 10, 2011 and now 5 mos pregnant. She had 80% resection on 12.23. 2011 of her 7 cm tumor mass and will start 6 weeks radiation this week. What makes the situation difficult is her pregnancy. We cannot start a low dose temodar with radiation as it will cause fetal defect.Therapeutic abortion is illegal here. Our Radiation Oncologist works with her OB to minimize the effect of radiation to the baby in her womb. Radiation will buy us time so that she can deliver the baby via caesarian section by 28 weeks. Then we will start her chemo.

She regained her strength now, can walk, go the comfort room take care of herself which she cannot do prior to surgery. GBM is really a life changing experience but we are not giving up because she is still young. She is taking every supplement we can afford on top of the western treatment to boost her immune system with the hope of being a long term survivor. Above all, there is God.

ForHope · January 2012

deepwater55 said:
Don't give up
did he go to the Bumrungrad in Bangkok
thats where i am .its a terrific hospital
i was working offshore in ivory coast west africa.flow from rig to local hospital where ct showed the tumour. and flew here
within 24hours of arrival i had mri ,ct scan ,and surgery with near total removal of tumour
now at day 8 of chemo and radiation,with 30 more to go..
regaining my strength ,up walking ..and most important keeping my spirits high and a smile on my face
i hate to disagree but I am in charge
Gary

Don't give up
He went to Bangkok hospital medical center, bc the doc we wanted saw patients there only. Name is Dr Sith. He is an awesome neuro oncologist and US trained. Thailand in general was a good experience for us in light of a bad situation. Good luck in ur journey.

Together in hope

ForHope · January 2012

Glenda_GBM Survivor said:
Wife Pregnant DX with GBM
Hi..From Philippines here.My wife ( 31 years old) was DX with GBM on December 10, 2011 and now 5 mos pregnant. She had 80% resection on 12.23. 2011 of her 7 cm tumor mass and will start 6 weeks radiation this week. What makes the situation difficult is her pregnancy. We cannot start a low dose temodar with radiation as it will cause fetal defect.Therapeutic abortion is illegal here. Our Radiation Oncologist works with her OB to minimize the effect of radiation to the baby in her womb. Radiation will buy us time so that she can deliver the baby via caesarian section by 28 weeks. Then we will start her chemo.

She regained her strength now, can walk, go the comfort room take care of herself which she cannot do prior to surgery. GBM is really a life changing experience but we are not giving up because she is still young. She is taking every supplement we can afford on top of the western treatment to boost her immune system with the hope of being a long term survivor. Above all, there is God.

For Glenda-GBM survivor
Right when I think I have heard it all with how many lives are affected by this Beast, I am down to my knees asking to please stop when I read your post.
I'm sure there are no words, no thoughts of wisdom to help you cope with this as you worry about your wife and unborn child. You will forever be in my prayers. Keep fighting and take it one day at a time. That is at least how our family is holding up as we celebrate each day of my brothers life.

For hope

DellaMarie · January 2012

UNTREATABLE?
Hi Gary,
I just wanted to let you know that I've seen one too many stories with people getting the same diagnosis as you only to outlive their prognosis. I strongly suggest reading Ben Williams story on www.virturaltrials.com He also posted in November 2011 new and promising alternative treatments that may be worth your time to look into. He also wrote a book: Surviving Terminal Cancer that came out in 2007. There is so much research and information out there, I would be happy to share with you what I have found that you may find helpful. I agree completely with your statement about quality of life. I am refusing to let my husband take Avastin because I know his health history and it would be unlikely his body could withstand that type of treatment. I know that many have felt that Avastin helped or is helping but my ultimate goal is to cure my husband and not just to buy more time, another month or two with a questionable quality of life. But that said it is important to keep buying time to give yourself the time needed to find the right treatment plan for you, as each GBM is different and what works for some doesn't work for others. Some have been cured taking Tamoxifen and others receive no benefit, just as the majority of people do not respond to Temodar. My husband started with the "gold standard" which is surgery, radiation and Temodar,for treating stage 4 GBM and as soon as possible we found an alternative care doctor who could add alternative treatments, he is now taking daily low doses of Temodar and combining it with alternative treatments that have very little risk to his health/low toxicity and is still under the care of a conventional Neuro-Oncologist whose is more open-minded than most. We are only using alternative treatments that have shown in published studies to work with chemotherapy or are able to enhance the body's own immune systems, there's more of course but since I don't know if you are interested in any of this I won't waste anymore of your time if you are not interested.
I wish you the best Gary-
DellaMarie

RosaC · February 2012

DellaMarie said:
UNTREATABLE?
Hi Gary,
I just wanted to let you know that I've seen one too many stories with people getting the same diagnosis as you only to outlive their prognosis. I strongly suggest reading Ben Williams story on www.virturaltrials.com He also posted in November 2011 new and promising alternative treatments that may be worth your time to look into. He also wrote a book: Surviving Terminal Cancer that came out in 2007. There is so much research and information out there, I would be happy to share with you what I have found that you may find helpful. I agree completely with your statement about quality of life. I am refusing to let my husband take Avastin because I know his health history and it would be unlikely his body could withstand that type of treatment. I know that many have felt that Avastin helped or is helping but my ultimate goal is to cure my husband and not just to buy more time, another month or two with a questionable quality of life. But that said it is important to keep buying time to give yourself the time needed to find the right treatment plan for you, as each GBM is different and what works for some doesn't work for others. Some have been cured taking Tamoxifen and others receive no benefit, just as the majority of people do not respond to Temodar. My husband started with the "gold standard" which is surgery, radiation and Temodar,for treating stage 4 GBM and as soon as possible we found an alternative care doctor who could add alternative treatments, he is now taking daily low doses of Temodar and combining it with alternative treatments that have very little risk to his health/low toxicity and is still under the care of a conventional Neuro-Oncologist whose is more open-minded than most. We are only using alternative treatments that have shown in published studies to work with chemotherapy or are able to enhance the body's own immune systems, there's more of course but since I don't know if you are interested in any of this I won't waste anymore of your time if you are not interested.
I wish you the best Gary-
DellaMarie

We like alternative treatment suggestions
My brother was diagnised in Ap 2010, and is doing remarkaly well. Temodar did not work for him, and is under CCNU, and his tumor has reduced. I read the William book and I like his "coctel approach" We are very open to new other alternative treatments and I would appreciate you share with us. His oncologist is ortodoxm but we are open to use other agents.
Thank you,
RosaC

lboy · March 2012

RosaC said:
We like alternative treatment suggestions
My brother was diagnised in Ap 2010, and is doing remarkaly well. Temodar did not work for him, and is under CCNU, and his tumor has reduced. I read the William book and I like his "coctel approach" We are very open to new other alternative treatments and I would appreciate you share with us. His oncologist is ortodoxm but we are open to use other agents.
Thank you,
RosaC

glioblastoma diagnosed after brain haemorrhage
My wife (64) had a brain haemorrhage at the end of December, requiring emergency surgery to survive. All the CAT scan on admission showed was a massive bleed. The surgeon noticed some unusual tissue, took a sample, and ten days later we got the devastating news that it was a GBM stage 4. We can't operate again so soon, or give you more than palliative radiotherapy we were told - so go home and die, with an NHS palliative home care package managed by the local hospice (we are in the UK).

Rapid deterioration was expected, but she kept getting better, got speech back (and otherwise mentally fine) although right side remains paralysed. Another MRI did show the tumour, but the consultant oncologist thought she was strong enough for a full course of temozolomide and 30 radiotherapy sessions. She has stood up to it well, only needing steroids now with 10 days to go.

We both know the odds, which are grim, and you do wonder if it is worth it, especially as they still could not surgically resect. She is still bedridden, took her out for a walk today in the spring sunshine, it depressed her as it brough home to her how crippled she is. Still, she has defied the odds till now! Won't have an MRI for another 6 weeks or so, so fingers crossed

belladonna · March 2012

I_Promise said:
the growth rate
Unfortunately most of the time GBM will grow very quickly without radiation and chemo. Some people on this website were not able to get a surgery or start radiation and lost their love one in 30 days. The life expectancy for GBM (and the the timeline you were quoting) is usually given if you undergo rad and chemo. You already had surgery. This is great great news.

Radiation will cause some fatigue and some cognition impairment. The chemo Temodar is a pill form given during radiation at a low dose; a month off chemo and then 5 days every 28 days of a higher dose.

Avastin is also usally given for GBM. It is a IV chemo that stops the growth of the tumor.

And then most importantly: There is a generic vaccine now for GBM.

That is right a VACCINE!!!

It attacks the growth factor VIII. It is given at many locations, including Duke. If I had a GBM I would move mountains to make sure I get the vaccines. ( I put a "s" to vaccines because there are actually multiple one; the easiest to get is the one targeting the growth factor VIII; but if you are reading this and you have a GBM that has not been operated on yet, then do yourself and your family a favor: go to a center that specialized in creating a vaccine from your own tumor cells, example University of San Francisco, UCLA, University of Miami).

A GBM is not a death sentence. There is no cure now but there will be one. More than 1000 clinical trial were registered in the world regarding gene therapy and vaccine therapy.

The steroid should help you with your deficits; rehabilitation should help you further.

Come back again on this website. And tell us you decided to do.

J.

the vaccine
this guy is doinf a vaccine treatment in norway, it seems to work!!!

http://www.youtube.com/watch?feature=youtu.be&v=cGJzH7uxsJg&ytsession=9rl7ogyfgegM4bVGKfoc9famh2PjpP61TtjSufuet4_lhr65KpqEXW68cwDmVXJDj124xDfvqhX8h45-VaqoP4Hd-MIsiv-K8v3gJM1-dZ0xaus5tdIRe3I5mqjbq--XUhf4iOtnTn_7vm9oRFhTk9NMSj-4DULviOFCK7EtXRfzIPk9sURdzweiW4wXaCsK4deZYivqwDFPzPBD1SFp0EVznr1B8TBf3A795NvRvbTxU0D7AZlDWQYDQWeOb57gzICEzFF3iJXSRUg8VLL0khQHa214IdyENSFmiJ-MSSw

annielin1 · May 2012

Son with glioblastoma Grade 4
My son, Rob, age 45, was diagnosed with glioblastomo grade 4 after having seizures 3 weeks ago (right frontal lobe)
He has just begun 6 weeks of radiology/Chemo. This, after 90% of the tumor was removed with surgery.
He is feeling really positive and is in good health, with the exception of losing most of use of left arm and hand.
His outlook is so positive...I just need to feel some of the same because everything I read has his life expectancy at about one year. He has 4 kids...19, 17, 15 and 12.
I joined this blog for some words of encouragment....success stories...and something to help get rid of the sadness I feel every time I think of losing him and of what he will miss if his life is cut short in this way.
Surely there are more people out there who have some better news than what I am hearing about personal success in dealing with this monster!
Thank you,
Linda

madisonmuzz · May 2012

annielin1 said:
Son with glioblastoma Grade 4
My son, Rob, age 45, was diagnosed with glioblastomo grade 4 after having seizures 3 weeks ago (right frontal lobe)
He has just begun 6 weeks of radiology/Chemo. This, after 90% of the tumor was removed with surgery.
He is feeling really positive and is in good health, with the exception of losing most of use of left arm and hand.
His outlook is so positive...I just need to feel some of the same because everything I read has his life expectancy at about one year. He has 4 kids...19, 17, 15 and 12.
I joined this blog for some words of encouragment....success stories...and something to help get rid of the sadness I feel every time I think of losing him and of what he will miss if his life is cut short in this way.
Surely there are more people out there who have some better news than what I am hearing about personal success in dealing with this monster!
Thank you,
Linda

son with glioblastoma
Linda,

My husband was diagnosed in December 2010 with a glioblastoma grade 4. The outlook for him was also grim. I am pleased to tell you, he is still stable. He is receiving chemo, Avastin and Irinotecan every other Friday. He is not having any sickness from the chemo but is experiencing fatigue. He is still working 1-2 4 hour shifts per week. He is able to enjoy most things, but does get tired quicker.

He was very lucky, when they removed the original tumor, he didn't lose any functions at all.
You mentioned how positive your son is. That is like Scott. He is more positive at times then me. It is so difficult, which you know, to watch someone you love fight so hard this battle. We have 1 son, age 20. He is a huge help and so positive.

I am here for you any time you need to talk. It is not an easy task. jls2@roadrunner.com

Keep the faith. Only god knows when the time will come. No doctors can tell you that. In fact, I wish they would not even try to mention how long someone has here on earth. They do not know.

As for you son. Continue to stay positive. That is my only advice. Unfortunately, we can not change the cards dealt to us, we can only live in the moment. Your entire family is in my thoughts and prayers.....

I have a quote that gets me through most days, "There are two days in every week you cannot worry about, yesterday and tomorrow. You cannot change what happened yesterday and you cannot control what will happen tomorrow. So live for today!

Sincerely
Leslie

agblady · June 2012

hi
My dad has stage 4 gb and they gave hime 4-6 momths, we are in month 4, and he isn't doing so hot. How is your dad and how is he doing?

annielin1 · July 2012

madisonmuzz said:
son with glioblastoma
Linda,

My husband was diagnosed in December 2010 with a glioblastoma grade 4. The outlook for him was also grim. I am pleased to tell you, he is still stable. He is receiving chemo, Avastin and Irinotecan every other Friday. He is not having any sickness from the chemo but is experiencing fatigue. He is still working 1-2 4 hour shifts per week. He is able to enjoy most things, but does get tired quicker.

He was very lucky, when they removed the original tumor, he didn't lose any functions at all.
You mentioned how positive your son is. That is like Scott. He is more positive at times then me. It is so difficult, which you know, to watch someone you love fight so hard this battle. We have 1 son, age 20. He is a huge help and so positive.

I am here for you any time you need to talk. It is not an easy task. jls2@roadrunner.com

Keep the faith. Only god knows when the time will come. No doctors can tell you that. In fact, I wish they would not even try to mention how long someone has here on earth. They do not know.

As for you son. Continue to stay positive. That is my only advice. Unfortunately, we can not change the cards dealt to us, we can only live in the moment. Your entire family is in my thoughts and prayers.....

I have a quote that gets me through most days, "There are two days in every week you cannot worry about, yesterday and tomorrow. You cannot change what happened yesterday and you cannot control what will happen tomorrow. So live for today!

Sincerely
Leslie

Son with Glioblastoma GRD IV
Thank you for your kind words and support. Rob does now have blood clots from the Chemo treatments (one in his lung)....however, he only has 8 treatments to go and even though he has pain in his left leg and arm..he still has a real positive outlook. I believe, too, that only God KNOWS. A doctor can only make an educated guess...and prayer is most powerful.
I will also pray for your loved one, Scott, and your family.

I am traveling to Albuquerque on Sunday to remain with him for the remainder of his treatments (and then hopefully bring him and his 2 sons back to Texas to live)..I will have some spare time while I am waiting in Albuquerque and will send e-mail then.
Linda

bigdoglerm · January 2013

GBM IV

Sorry to hear about your recent health problems, but I want to encourage you to keep hope.

Last March 16th I was at work and a coworker noticed that I had a facial drop and was slurring my speech. I thought that I was having a stroke. I also suffer from diabetes and high blood pressure. I went to the hospital and they did a cat scan and found a tumor the size of a golf ball in my right frontal lobe. Due to some kidney complications I couldn't get an MRI for 2 days and eventually on the 21st had about 90% of the tumor removed. When I woke up, there were no physical complications and was able to walk and go to the bathroom on my own. I went home about 3 days later. A week after that I started radiation and chemo therapies. The radiation took about 15 minutes a day and I took the chemo capsules at home about an hour before radiation, but couldn't eat for about 2 hours after that. The chemo was taken every day for about 4 or 5 weeks with no real side effects except tiredness. once radiation was over I had to wait about a month to start the new chemo regimine. I take it for 5 straight days and then no medication for 23 days, then the cycle begins again. These next cycles are about double the strength of the first round, and I have had occasional nauseau and fatigue, but nothing I can't handle for the rest of my life. It won't be easy, I've had many a sleepless night thinking about my future. Last month I celebrated my 60th birthday and am looking forward to many more. I am now allowed to drive and have begun working again on a part time basis.

Good luck,

Gary Lerman

davidlewis71 · February 2013

My husband diagnosed 1st Dec 2012

We had no idea anything was wrong until 2 days before my husband was admitted to hospital by emergency ambulance. He kept losing his balance and mis-judging doorways walking into the door frame. The ambulance was called as he actually just fell over banging his head. Scans and MRI's were done and a very large Glioblastoma Multiforme Grade 4 was discovered in his right temporal lobe. Surgery was scheduled for the following week. They removed as much of it as they could, but not as much as they wanted. 2 weeks post surgery he is much better, but I think probably due to the steriods. He was then put on Chemo/Radiotherapy. Temodol 150mg per day taken 1 hour before radiotherapy. He is now 2 weeks into his treatment. I dont think the shock has worn off yet and I cry alot, but not in front of anyone. He is 71 yrs old and was told before treatment the prognosis is not good. But we said please just try and get rid of it best you can. Today, he is not well. He has to miss his radiotherapy today. The oncology doc said that was normal after 2 weeks of aggressive treatment and he has 'upped' my husbands steroids. He just sleeps all the time, but has tolerated the chemo/radio quite well I thought. Thank you for listening. Its very lonely out here. I am in London, England. I cant lose him, there has to be hope. Thank you.

davidlewis71 · February 2013

RLR said:
grade 4 glioblastoma
I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!

Glio grade 4 also.

Wow, how wonderful, 3 years on and feeling good. I am so happy for you. This has given myself and my poor husband some hope. He was diagnosed 1st Dec 2012, had surgery a week later for 7.2cm tumour. It was massive and on his right side temoral lobe. Because of his age 71 they said maybe he cant take both chemo and radiotherapy. I disagreed, he was, before the symptoms showed themselves, a healthy 71 yr old. I begged them to please not disregard him because of his age. So they decided to give it a try and he is now 2 weeks into his treatment. He takes temodol 150mg 1 hour before his radiotherapy, 5 days a week. He is doing quite well and has not felt ill or sick, just very very tired and sleeps for England as we say!! But they still insist on a poor prognosis for him. I need to have hope for him, I cant lose him. He is a lovely man and our children and grandchildren adore him, as I do. Reading your story has given us hope, I thank you very much for this. Even with a lovely family around me I sometimes feel very lonely. Thank you again.

cindysuetoyou · February 2013

deepwater55 said:
e DON'T GIVE UP HOPE
RLR
thats truly great news
i had my diagnoses and surgery done herein bangkok thailand and there was never a question from the doctors here that surgery would be performed
again congratulations on your health

and giving up is something s something i DONT do.
i have remained positive and upbeat and intend to remain so
thanks for your encouragment

all the best to you

Gary

Yay!

Deepwater! I am so glad to see a post from you! I've been watching and wondering how you are doing. So glad to read this GREAT report!!! Thank you for stopping by CSN and posting an update.

Love and blessings,

Cindy

in Salem, OR

maria isabel · February 2013

RLR said:
grade 4 glioblastoma
I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!

Thankyou

posts like yours make me so happy, My mum is just 60 and was really upset all the sudden because she could not do things, she was diagnosed depression and then alzeimers!! but she did a brain scan and then the doctors realised that she had a Grade IV Glioblastoma. It was such a shock as also the doctor told us that my mum will only live 3 to 12 months.

She had an operation by an amazing brain surgeon who removed all of the tumor! she was home 5 days after the op and now we are going through radiotherapy and chemeotherapy, she is doing brilliantly, we are also really looking after her diet and giving her natural food supplements.

As her carer/nurse/daughter, I am going to fight because I am not ready to lose my mum, reading suvivor stories give me strengh and cheer me up so every now and then I log into csn, from Spain where we live, and get hope.

I will try to get the vaccine for my mum if she can flight. there are not doing it here yet.

please keep me posted with all the good news and anything else helpful!

love

isabelx

maria isabel · February 2013

RLR said:
grade 4 glioblastoma
I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!

Thankyou

posts like yours make me so happy, My mum is just 60 and was really upset all the sudden because she could not do things, she was diagnosed depression and then alzeimers!! but she did a brain scan and then the doctors realised that she had a Grade IV Glioblastoma. It was such a shock as also the doctor told us that my mum will only live 3 to 12 months.

She had an operation by an amazing brain surgeon who removed all of the tumor! she was home 5 days after the op and now we are going through radiotherapy and chemeotherapy, she is doing brilliantly, we are also really looking after her diet and giving her natural food supplements.

As her carer/nurse/daughter, I am going to fight because I am not ready to lose my mum, reading suvivor stories give me strengh and cheer me up so every now and then I log into csn, from Spain where we live, and get hope.

I will try to get the vaccine for my mum if she can flight. there are not doing it here yet.

please keep me posted with all the good news and anything else helpful!

love

isabelx

maria isabel · February 2013

davidlewis71 said:
My husband diagnosed 1st Dec 2012
We had no idea anything was wrong until 2 days before my husband was admitted to hospital by emergency ambulance. He kept losing his balance and mis-judging doorways walking into the door frame. The ambulance was called as he actually just fell over banging his head. Scans and MRI's were done and a very large Glioblastoma Multiforme Grade 4 was discovered in his right temporal lobe. Surgery was scheduled for the following week. They removed as much of it as they could, but not as much as they wanted. 2 weeks post surgery he is much better, but I think probably due to the steriods. He was then put on Chemo/Radiotherapy. Temodol 150mg per day taken 1 hour before radiotherapy. He is now 2 weeks into his treatment. I dont think the shock has worn off yet and I cry alot, but not in front of anyone. He is 71 yrs old and was told before treatment the prognosis is not good. But we said please just try and get rid of it best you can. Today, he is not well. He has to miss his radiotherapy today. The oncology doc said that was normal after 2 weeks of aggressive treatment and he has 'upped' my husbands steroids. He just sleeps all the time, but has tolerated the chemo/radio quite well I thought. Thank you for listening. Its very lonely out here. I am in London, England. I cant lose him, there has to be hope. Thank you.

hello

I know how you feel, I am looking after my mum, she is coping very well with the radiotherapy and with the chemeotherapy but she has no idea of the actual diagnosis....though since the doctors told me that 3 to 12 months maximum I have realised that there are people with Glioblastoma IV still alive after 4 and 7 years and doing normal life just taking a course of temodal or avastin every month for 5 days.

I am tired and I do everyting so early I read in this website that I had to lookafter myself so I could care for my mum.

I take fragaria/vitis tablets from weleda and Kalium phosphoricum, I also used to cry myself to sleep and Emergency Essence from Jan de Vries worked on the second day that I started taking it!! It was one of my friends who made me get all this things as I was open minded to anything as the situation was so desperate.....the emergency essence on the days when i am low i just take it every 3/4 hours, then there are days when I dont need any.

My mum has her chemeo with an empty stomach and then two hours later her radio, also empty stomach and then she eats an hour after the radio...this has really help with nausea.

She eats very very healthy and she takes curcumin tablets, graviola, multivitamin and lots and lots of raw veg and fruit.

Alkaline water ph7.5 to 8 plenty and no red meat, no sugar, nothing processed... the nutrition is very important for her energy levels, sugary things will not giver her anything nutricionally and natural sugars from fruit and veg are the best.

jerrykline.com, ben williamsgbm www.virtualtrials.com also so helpfull

Buy him a baby toothbrush as their gums get very sore and they need to rinse their mouth with alcohol free mouth wash as with the oral chemo they can get mouth infections.

email me at yeyes29@hotmail.co.uk if you need anything. We are all in the same boat!

take care

isabelx

maria isabel · February 2013