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Brain Tumor Glioblastoma Multiforme

Updated on August 23, 2014

Glioblastoma Multiforme brain tumor

To me there is no other expression more scary than "There is a brain tumor"! So - what is the treatment for brain cancer? Some can get well and some die. What are the different types of brain tumors? This lens is about GMB.

I tried to find facts and help on the internet but today I know - this is what I should have heard.

The verdict

Fear tastes of metal

The doctor used the word "astrocytoma". He said Glioblastoma multiforme grade IV, brain tumor. I did not understand anything at that time. I did not know what to do, where to go or what to expect of the future.

The absolutely worst thing was that I was alone. My Darling husband - who had the brain tumor - did not understand much! He could not take in information or add up the words the onchologist said. But I could! I still remember the fear of suddenly being forced to take all the descicions and be in charge of the situation.

Descicions about surgery, chemotherapy, radiation, advanced treatments, managing side effects. Where do you find reference that is as fast, convenient, and portable - everything you need to know, from the federal sources you trust. Since navigating the Internet to find medical information can be confusing and you are so hysterical about doing the right thing! I went online to find out what other had said. Stories and facts in a dreadful mix. The stress and fear and press was almost more than I could bear.

The reason I do this lens is, that I really wish I had this information earlier, more detailed and presented with facts imediatelly. I did not know anything at all and I was in a foreign country with foreign language too. I am going to tell the story so if anybody is in this situation - you can benefit from my experience!

Read the comments in my guestbook!

So many personal thoughts and shared pain. We are many!

I want to warn you about one thing

A GMB always continue to grow - what ever you do

That is - do not listen to all "good" advices! You will be more and more stressed about what is best to do. What shall I buy, pay or order?

Any suggestions I made to my Husband he just said: Yes! Lets do it. He did not realize that he said yes because he trusted in me. I did know that types of head tumors differ. But this one is deadly and I was so alone.

Eat this, drink that, don't go out in the sun - spend much time in the sun, buy a machine that take away the edema, buy all the homepatic medicine you can get! Buy Vitamine B12 from Mexico! Cortisone is a must! Avoid sugar and be happy. Do not drink coffee. All these suggestions and many many more I got.

In the end I found out that all were not bad but many were not necessary. Even the doctors are helpless here. But they want to do what little they can. That is first the biopsy - to go in to the tumor and take a sample to see what kind it is. Then they want to give you radiation therapy and last there is chemo therapy. Of course cortison is given to reduce the edema (the swollen area around the tumor).

Some scientists say that if you give Radiation therapy together with temozolomid (Temodal) it can affect the tumor more.

One important advice from me

There is something you CAN do. Try to stay positive and enjoy each other as much as you can - while you can!

The tumors locations are different

This is only one of many stories

So therefore the symptoms are different too. When the tumor is on the left side of the skull, the memory, talk, writing and reading are affected. Also fits and shaking movements of the hand are common.

When the speech goes away it is frustrating for the patient. He cannot ask for anything at all. I my case I knew him so well so I guessed often right what he wanted. I had to feed him because the hand was shaking so much. I read about others who did not rememeber how to swollow the food. You had to tell them.

Of course you are the one to keep track of the medication and in our case - also eye drops. The tumor was pressing on behind the eye and the vision was slowly shutting down. We had pain killers at home but he never needed them. I was so grateful that there was no pain in this case.

In the end he started to sleep more and more and the breath was wheezeling. He could not open his eyes the last day. But silently and peacefully, he just stopped breathing.

Fighting Cancer audio book

what are the different types of brain tumors

Please note that the advices here are to strenghthen the patient. The GMB will not be removed or even shrunk from these suggestions. But - I do believe that the immun system can do some good to avoid pain.

Natural Approaches to Fighting Cancer

An interview with Ralph Moss, PhD, editor of the Moss Reports, and author of Antioxidants Against Cancer, Cancer Therapy, Questioning Chemotherapy, and The Cancer Industry, as well as the award-winning PBS documentary The Cancer War.

BURZYNSKI Cancer treatment

Magnetic camera

So what are the different types of brain tumors?

The cat scan is a way to see what is going on inside the brain. Where the tumor is and how it is growing. Because - it NEVER STOPS GROWING!

Although common symptoms of the disease include seizure, nausea and vomiting, headache, and hemiparesis, the single most prevalent symptom is a progressive memory, personality, or neurological deficit due to temporal and frontal lobe involvement. The kind of symptoms produced depends highly on the location of the tumor, more so than on its pathological properties. The tumor can start producing symptoms quickly, but occasionally is asymptomatic until it reaches an enormous size.

One of the reasons for the resistance of

GBM to therapeutic intervention is the

complex character of the tumor itself. As

the name implies, glioblastoma is multiforme.

It is multiforme grossly, showing

regions of necrosis and hemorrhage. It is

multiforme microscopically, with regions

of pseudopalisading necrosis, pleomorphic

nuclei and cells, and microvascular

proliferation.

This is how a cat scan works

A magnetic camera (Computed Tomography)

Radiation Therapy

Radiation therapy is made straight on the same spot for 34 days in a row. The hair will fall off and you will lose weight rapidly.

The median survival time from the time of diagnosis without any treatment is 3 months.

If you are treated with Radiation therapy and Chemo therapy the death comes often within a year. One in twenty of glioblastoma patients survive for more than three years.

Note the expression "survive". What kind of life is that really. In our case - the tumor was on the left side of the head. That means that the memory is affected rather quickly. Sick, cannot remember, read or write or understand anyting. Fits falling on the ground outdoors and indoors. I must say that "survival" time is no quality time at all!

Radiation therapy

Some more links about this killer tumor - So, what are the different types of brain tumors?

I know from hard experience that you need to act and find things to do to help. But please remember that there is absolutely nothing you can do to stop a GMB from growing!

To keep the patient as strong as possible, to support the imune system and to keep the food healthy is good to do.

Learn about what you are up against - CD rom set

types of head tumors

This up-to-date and comprehensive set of two CD-ROM discs provides a superb collection of official Federal government documents on Glioblastoma Multiforme: signs and symptoms, diagnosis, lab tests, treatment and management options, and ongoing clinical research. Every aspect of the disease is thoroughly covered. Glioblastoma multiforme is a fast-growing type of central nervous system tumor that forms from glial (supportive) tissue of the brain and spinal cord and has cells that look very different from normal cells. Glioblastoma multiforme usually occurs in adults and affects the brain more often than the spinal cord. Also called GBM, glioblastoma, and grade IV astrocytoma.

21st Century Ultimate Medical Guide to Glioblastoma Multiforme (GBM) or Grade IV Astrocytoma - Authoritative, Practical Clinical Information for ... Patients, Treatment Options (Two CD-ROM Set)
21st Century Ultimate Medical Guide to Glioblastoma Multiforme (GBM) or Grade IV Astrocytoma - Authoritative, Practical Clinical Information for ... Patients, Treatment Options (Two CD-ROM Set)

This remarkable CD-ROM set is packed with tens of thousands of pages reproduced using Adobe Acrobat PDF software - allowing direct viewing on Windows and Macintosh systems. The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of government documents and material.

 

Read about the enemy

If you have any questions or anyting to share - do it. I want to help and tell my story if it benefit anyone at all. I did the mistake to go for anything at all that was supposed to kill cancer or make it go away. I still remember the taste of fear in my mouth. I was on the verge of hysteria for months.

Please feel free to ask me anything you want! - I will answer you

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    • profile image

      anonymous 4 years ago

      @anonymous: Val, I am sorry to hear about your husband. The turmoil and uncertainty is a struggle for all involved. I just released a book about my experience. I cared for my wife of 31 years as she battled glioblastoma for nearly four years. The book is called "Suddenly a Caregiver" and is available on Amazon, Barnes & Noble, iTunes and other retailers. I provide an overview of the book on my website, which can be found by searching for my name. I wish you the best.

      Regards,

      Darryl Pendergrass

    • giovi64 lm profile image

      giovi64 lm 4 years ago

      Good info.

      Beautiful and interesting lens!

    • profile image

      anonymous 4 years ago

      @almawad: My heart aches for all of you.I will not say there is no hope because I think there is.My Jim was given6 mo and made two more years even went into remission.We too Avastin from Duke Brain Institute in Durham NC.We enjoyed our time of amost 39 years.Yes, I understand how you feel.Prayers for all and there are survivors too that I salute you.God Bless You All

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @almawad: Cancer is one of the worst enemies for us. They just start to grow on just anybody. The doctor told your mom that it would grow back. I wonder why they want to operate then? Why the stress, the pain and worries when it is one of these deadly tumors? Talk to the doctor and ask him to be honest!

    • almawad profile image

      almawad 4 years ago

      I learned yesterday the horrible news that my lovely and intelligent niece got a seizure and had to be operated as soon as possible .:( It was a large front lobe tumor .The doctor told to her mum that it would grow back and that she needs to be supervised all her life .I am afraid that it was this deadly type . I am just devastated -she is so young -only thirty .We have been lucky so far -no cancer in our family at all ...then comes this nightmare ...

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: Truthseeker. The white areas around the tumor are edemas. Liquid that is surrounding the tumor. this edema must be treated to shrink! Cortison is one way.

    • profile image

      anonymous 4 years ago

      @anonymous: We just came back from Duke after having our first MRI after radiation, chemo and ongoing avastin. My husband is 66. There appeared to be two tumor sites now. I had to ask the doctor what the "white areas" were. The dr rushed over my question and then said she wanted to prescribe ritalin or his fatigue because she wanted him to enjoy "his time". The dr said it was a very good scan. I am doubtful. Am I crazy here?

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: VAL! I totally understand what you are talking about. That expression "I miss him so much already" I know how it feels. As far as I have come to understand and know about this killer tumor is, that it ALWAYS continue to grow. The Edema around it can be made smaller through medication and in my case electric treatment. This can also lessen the pain quite a lot. The therapy he has been through has taken away so much of his strength too. Muscles and body is smaller and fading away. If he still want to eat, feed him the favourites. the location of his tumor is where speech, understanding, memories and reading are stored. He will be more and more "gone!" Make him feel loved and important by staying with him. Cuddle a litte and masage his hands and feet. Even if he cannot talk so much to you, he will know that he is not alone. Take time to spend it with him. Everything else can wait. You are welcome to write me again if you need me.

    • profile image

      anonymous 4 years ago

      My husband was diagnosed as having glioblastoma stage 4 on Mar. 20th, 2012. 99% of his tumor was removed surgically shortly after, followed by 6 weeks of radiation and chemo. He is still taking chemo every 28 days for 5 days. His tumor was located on the left side of his head, above his ear. He feels fine physically, other than occasional minor headaches, and by all outward appearances, nothing seems different. But the hard part is the fact that his memory is constantly worsening, along with his personality. He is not the same person that he was, which was a very intelligent, vibrant person. I try my best to hold it together, but it is killing me inside to watch him fade away, and I don't know that I will ever see the real him again. I miss him so much already. I just feel like I need to talk to others that are going through the same thing, because I don't know if my friends and family truly understand what we are going through. They only see the healthy outside. I'm so glad that I found this site and have been able to read other's comments and stories. I know every person is different, but I truly can't help but worry if my husband will eventually forget everything, including speech. If anyone out there can offer me any info or share what they have experienced, I would greatly appreciate it. I truly thank you.

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: Suzanne. the reason you are numb most likely comes from this tumor. There are many possible symptoms of oligodendrogliomas. One of the side effects is headache, seizure and speech or motor changes. the preassure on brain nerves causes this. About how long you will live. I cannot tell. You must ask your doctor about this.

    • profile image

      anonymous 4 years ago

      why do I have pain and numbness in my right hand.I have Anaplastic oligastroaytomy stage 4. will I live more than 3 years?

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: I think you are doing the right thing. Stay with your Dad as much as you can. For both your sake but also for his. Cancer is an enemy to us! He has more than the brain tumors to fight!

    • profile image

      anonymous 4 years ago

      Take a few minutes and look at The Duke Brain Institute in Durham NC Dr Henry Friedman in particukar..we had AVASTIN fir husbands sTage Four Glioblastoma..gave us almost two more years,remission even,thought we had bought even more but worth it to both of us...I found by accident on www.davidbailey.com he lived about 12 yrs..had Dr F phone number there at the time so called him on Fathers Day and he returned my call.I have no miracles to offer but prayer,and your all in mine kat.walden@yahoo.com Bless You Honey read Davids story ..he lead us to Dr F always grateful Bless Him

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: Chrissy29 I know only too well how you feel when there is a lack of information! You have to wait for the result of tests. To shrink the fluid is always a good thing. I have seen and heard about tumors in the back of the head that they were able to operate on and completely remove. There are so many different kinds of tumors. Since you say your dad has two of them, I am just suggesting: Take contact with a Cancer group or union. They often have information, broschures and can answer much more of your questions than I can.One is braintumor.org. Just do not read everything you find. You will only be stressed out. Wait until you know more details about your fathers kinds of tumors.

    • profile image

      anonymous 4 years ago

      Hi don't know if you can help, my dad was took in this week to hospital after an X-ray showed clouds in his head last week, we were told he has 2 brain tumours at the back of his head when we asked questions we were just told that we have to wait on results coming back from several scans he has had all ready, ct, pet and today he is going for a lumbar puncture. They have gave him steroids to take to help with fluid which was causing pressure in his skull and he seems in no pain since they gave him that. But we feel very much in the dark with information, I asked about what size is tumours 1 is 2cm other is 1 cm I ask bout grades and stages and was told we have to wait until they speak to neurosurgeons which will be after all scans and tests and that could be 2 weeks. My dad has to stay in for at least 2 weeks and then be transferred to another hospital so the nuerologists can take over but its the not knowing that's annoying I feel like they holding back I no they not but we feel lost. :(

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: I am so sorry to hear about your son. You say grade 2 and I do not know if this is an astrocytica. So I cannot compare or say anything true about this tumor. The liquid is called edema and is often the reason that the person has pain or memory loss. The doctors usually give cortison treatment for this. You son has not got chemo therapy? That usually follows radiation. So may be this is a milder form of brain tumor than my husband had. Also you say five years. This shows that it is not as bad as GMB. I hope this will help you a little tiny bit.

    • profile image

      anonymous 4 years ago

      hi i don't know if u can help me my son has been diagnosid with left frountal cental neroctoma(WHO Grade 11) five years ago he has had MRT radiation it hasn't workd it has got bigger and now he has fuild on his brain it doesn't look like there is anything they can do no im tryng to auderstand it all

    • profile image

      katnjim 4 years ago

      @mariaamoroso: We lost 3 so far his Aunt his brother then Jim.His wason right side the last two weeks lots of changes but we knew the risks n opted for all the gusto we could have I understand diff for each family n individual my prayers for all of you.

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @katnjim: Katnjim - Thanks for your comment. I just am happy for you that this tumor did not affect your husbands memory, speech or thinking abilities. When the tumor is on the left side just above the ear, it is killing the person before he is dead. Stuck in bed with no life at all is terrible for who was a positive personality.

    • profile image

      katnjim 4 years ago

      @anonymous: Each has to decide along with family.Sensitive subject..life.Quality and pain.Husband Jim 38 good yrs with him then Stage 4 GMB we did surg,lifetime rad...still grew..then used AVASTIN from Duke Medical,he lived another 18 mo.caught 19 in rainbow trout 30 days before death,we didn't reget a moment love to you all so sry for all pain of you dear people

    • profile image

      anonymous 4 years ago

      I return visit and recommend for other lenses

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: I am so sorry for your loss. I completely agree, that the treatment makes

      life worse for the sick one. I have heard that it is in vane to operate at

      all. It just continue to grow anyway. The Edema around the tumor makes the

      pain and take away the speech and mind more than the tumor itself. This is

      a beast that kills anyone within a year!

    • profile image

      anonymous 4 years ago

      My beautiful amazingly strong mom, 48, had a seizure July 2 2012 and was rushed to emergency where they found her brain tumor. She had surgery on July 14 where they removed most of the tumor and was diagnosed with a Glioblastoma stage 4 Aug 15. Started chemo/radiation aug 22 and completed one out of six weeks of treatment when she became incredibly sick. As her caregiver I made her go to emergency, even though she didn't want to. Her tumor had doubled in size since her surgery. They told me my mom had days or weeks left to live. She was in the hospital for 3 days losing her mind. She couldn't formulate sentences correctly or get out of her bed anymore. She kept talking about deceased relatives and pets in the room. She also told me she would die on sept 11. I decided to take her home with hospice and she died two days later on Sept 11, 2012. My mom was my best friend, I'm 26 and am happy she's not suffering anymore but I miss her very much. This is an EXTREMELY aggressive disease and the treatment only made her quality of life worse in my opinion. She had a very positive attitude up to her last waking day and I am sorry for anyone who has to deal with this monster

    • mariaamoroso profile image

      irenemaria 4 years ago from Sweden

      @anonymous: I know that feeling only too well. This is absolutely the worst in your

      situation.

      IF your husband has a GMB 4, there is no cure.

      Get in contact with a cancer (braincancer) group and they will tell you the

      truth.

      I got a tiny broschure from them that explained it all and it came true.

      Maria

    • profile image

      anonymous 4 years ago

      I also am on the verge of hysteria. I hear positive things from my husbands oncologist and radiation oncologist. No one tells me the real things I read online. Am I being negative??

    • Frischy profile image

      Frischy 4 years ago from Kentucky, USA

      Thank you for sharing this very personal journey. I am sure it will help many others.

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      @anonymous: Berns wife - I know what you went through. It affect you all for the rest of your lives. That you knew what he wanted is a good way to describe how the caretaker takes care. So thank you for sharing with me.

    • profile image

      anonymous 5 years ago

      Hi my name is sandra and im in england. My hubby berni, the love of my life, was diagnosed on 26th nov last year with the bastard thing (gbm grade 4) he endured 6 wks of chemo and radio which didn't do a damn thing and he died in my arms with our 3 sons and family around him on 31st march this year. four months. I can't tell you how we all feel , my life has gone im so gladf ive got my boys to focuss on . The symptoms were exactly as you describe, bern coulnt talk in the end but i knew exactly whwt he wanted and we could have a 'conversation'. He died peacefully surrounded by love but i can't believe its true

    • profile image

      anonymous 5 years ago

      My father was "healthy, chopping wood, living life" then had tremor. We found out he has GMB stage VI and the next week he had surgery. He has now had 20 chemo/radiation treatments and doing much better physically and mentally. He is 73 and was overall good health. The tumor is on the right and his left leg still had little movement (hand has regain some). He will finish treatments about the middle of July and hopes to come home. He and mom want to sell their place and move to town (they had planned to do this before all this started). Although he is going well now, I'm afraid we will spend the last good months moving and sorting. I don't know if this is the calm before the storm? Will we knew when the last is near in advance? Should I talk them out of trying to move? If he has 1-2 yrs, then another house would likely make his daily life easier, but I don't want to waste this time if we have months.

    • Craftypicks profile image

      Lori Green 5 years ago from Las Vegas

      My favorite uncle died of a GMB. It was very quick. Thank you for the lens and spreading the word. Brain Tumors are on the rise!

    • MarianaFargasch profile image

      MarianaFargasch 5 years ago

      Prayers and positive thoughts your way.

    • profile image

      anonymous 5 years ago

      My prayers and thoughts are with you Joe but all of you. kathy w or katnjim

    • profile image

      anonymous 5 years ago

      I am katnjim now, was kathy posted some time ago. Hoping this will post.Joe and others my heart goes out to you.My Jim lived alomost 23 months but we had Avastin as treatment after surgery on front right lobe,lifetime rad,then Chemo.We lost Jim's aunt and brother first.Jim wanted hope and the family did.So we went that direction .He even went into a remmission for 3 months.But came back.He and I knew where we were headed with death but neither of us chose to spend our time talking of that.But his knowing caused us to use our time quality wise .When he was sick we hunkered down for the affects.When more himself we fished,rented small mtn cabins or just had porch time sharing thoughts of love and our 38 yrs.He did well then last 6 weeks went down fast.No emotion, but no fits. He felt much pressure and there was anger at times but I understood.Our son was aware and we all stood firm as a family.It was sad when they stopped the chemo and nothing to impede it. He was in Hospice for 7 days and was gone.Our love sudtains me now 3 1/2 yrs later.I miss him each day.Not healed but time helps. Jim knew how sick he was.I still find music and pics he downloaded.I feel for you Joe and all of you.My prayers are with you each one.Kathy

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      @anonymous: I do not know what kind of treatment the person got. Neither on what side of the brain the location is. Basically it is said, that a person gets more and more affected by this constantly growing enemy. Often death comes in about a year.

    • profile image

      anonymous 5 years ago

      After all the treatment done six months after diagonis of Glioblastoma Multiforme and the patient is feeling constant preassure and vertigo although his speech have improved...what comes next and average time of survival

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      Ann - Yes the breath was more stale. I noticed this long before we knew about the tumor!!! I thought it was because of a slight cold so I did not mention it to my husband.

    • profile image

      anonymous 5 years ago

      did you notice a very bad breath that would not go away with the gbm?

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      @TonyPayne: One of the absolutely worst things were that I could not talk to him about it. How clould I say: You will die now? He did not understand anything....

    • TonyPayne profile image

      Tony Payne 5 years ago from Southampton, UK

      Brain tumors are so horrifying, especially those that cannot be treated. So sorry for your loss and the hard times that this put you through. Having experienced my wife's ordeal with a brain tumor, I can feel some of what you went through. Excellent lens, it must have been hard to write. Blessed.

    • profile image

      anonymous 5 years ago

      I'm so sorry that people have to go through this kind of thing. Thank you for writing this lens and sharing what you have so painfully learned.

    • profile image

      anonymous 5 years ago

      @anonymous: Hi JoeS, so sorry you are going through this at this time. I have just lost my father (3rd April) to GBM IV. I will be honest and say, I am glad he had an idea because he sorted out a lot of things he had not prioritised before that. knowing and understanding a bit about the illness (we did not go into too much detail but enough to give him an idea of the severity) - and this helped us to educate ourselves. His tumor was on the left so he lost his short term memory. In the last month, he remember things that was surprising. He survived the first op - it was the second op that made it harder as the cancer has spread more than was thought. Of course no one can tell you what to do but I believe your struggle alone is telling you what you need to do. You say he is strong, I am sure he is. My dad fought his batter for 11 months. I was so proud of his battle but glad he is at peace now. He suffered fits in December and even traveled to Hong Kong as he wanted to visit the place. Don't be discouraged. Don't feel at a loss. Do what you feel is right and keep his spirits up. This is when he will want to talk to you. The illness can become so rapid especially as he is only going to do radiotherapy. My thoughts are with you and the family and pray all will be peaceful. Happy to be a sounding board should you wish it. Please ensure you go through this with your siblings. They will be hurting and confused too.

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      Joe S - what I meant is gone like when you have an eplepsy fit. This is not always the case. But when it comes, they can fall on the floor and be unconscious for a while. I am not sure what to expect in your fathers case. Here is more information to read: https://hubpages.com/community/irene-marias-story This is a story about me and in the later part are some details and facts about my husbands tumor. I hope this can help you.

    • profile image

      anonymous 5 years ago

      @mariaamoroso: you said: "What can happen too is fits when he will be gone for a longer or shorter while. He WILL understand how bad it is!"

      I didn't understand what you mean. Can you please explain? What do you mean by "when he'll be gone for a longer or shorter while?"

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      @anonymous: I got your comment with questions today - April 14th! I know how awful this situation is for you and your family. I answered asap now.

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      @anonymous: The location of the tumor makes it affect the sick one different. My husband had it on his left side, just over the ear. This means that he could not understand fully what the doctor said or how bad it was. I chose not to make him feel worse since it was absolutely leading to death. What is the point to say: You will die soon? So I did not tell hem. But your father has more analyzing brains since his tumor is on the right size. He will get weaker and weaker even without chemo. He will need hospice care and he can understand that he is sick. It is really not up to me to suggest what you should tell him that this is bad. Why you - you have siblings that can talk to him also!

      What can happen too is fits when he will be gone for a longer or shorter while. He WILL understand how bad it is!

    • profile image

      anonymous 5 years ago

      Dear Irenemaria,

      i've posted some questions that i have as a reply to your latest post (Mar 22, 2012) but it doesn't show up. If you 've received it please reply as a new comment so that i can read it. If not, let me know cause it is kind of an emergency.

      Thank you,

      JoeS

    • profile image

      anonymous 5 years ago

      @mariaamoroso: Hello Irenemaria,

      I am 24, my father was diagnosed with GBM 4 just 2 days ago when i had to persuade him to visit hospital after a 5 hours non stop, left hand and leg shaking.

      The tumour is located on the right frontal lobe extending to the area between the lobes.

      My real problem right now is that he and my mum (she was abroad for her sister's funeral) have not been informed. They 've been lied to that it is a cyst that has to be treated(doctors believe that it can't be surgicaly removed and only suggest radiotherapy). There is no body who will inform me how long from now will he rapidly deteriorate.

      He is a very clever man and is suspesting tumour and has asked more than once not to lie to him cause he has stuf to short out if it is a tumour.

      I really really want to let him and my mum know everything about it but a couple of doctors and a psycologist have told me elsewise. They believe that he will be in denial of therapy if he knows.

      I feel that i am hitting a dead end. Fortunately i 've got my 2 younger siblings who know everything and we are trying to cope all together. My dad's father is also against letting him know because he believes he will lose all hope. We, on the other hand believe that he must know in order to pass the denial phase, accept the bad news and take it on from there on focusing on spending quality time after he shorts out anything he need to short out.

      What do you think?

      Please please let me know your opinion about letting the patient know what he is about to experience.

      I will inform my mum as soon as possible but i am afraid cause se also has to go under surgery for a gall bludder removal. I have no clue how these news will affect her.

      I believe that my dad always was and is a fighter and will not give up until he knows that we his family will be fine after he passes away. On the other hand i know for a fact that he is afraid of death or not being able to look after himself.

      looking forward to your reply

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      anonymous 5 years ago

      @mariaamoroso: My husband was diagnosed on February 25th with GBM. The surgeons resected most of the primary tumor on the 27th, proton radiation and chemo are scehduled in two weeks. His mood swings from positive, telling me he wants to fight it, to asking releatives to watch over me and our daughters, when his time comes. He says he wants more time, but does not want me or the girls to suffer, watching him suffer. We're torn over quality versus quantity. He wants us to have quality time with him, as well as him having quality time. 12 years ago, I watched my dad whither away from CNS Lymphoma and the treatments that followed. Thank you for your information, it helps me understand this monster that will eventually kill my husband.

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      irenemaria 5 years ago from Sweden

      @anonymous: Since I do not know the location or size of the tumor, I just tell you the possible future. If the tumor is on the left above the ear, it is the same as my husband had. The speech, talk, reading and understanding will go away. The ability to understand what you say is fading away. There are dangers of fits and loss of concience.. The right hand will shake more and more so you need to help the sick one to eat. I heard that some families had to tell him to swollow the food. Later on, the weakness comes. Diapers, stay in bed and very difficult to communicate. When death is aproaching, he will be week, get very high fever and sleep. The difficulties to breath with phlegm in the lungs is nothing to do about. The last breath is not far away now.

      If the tumor is on the right side, the patient will be able to talk to you and is aware of the state he is in. But in the end, the procedure will be the same.

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      anonymous 5 years ago

      My father was recently diagnosed with astrocytoma grade 4, inoperable due to where the tumor is located in the brain. He is opting to not have chemo, as he believes it is not worth the side effects. His wife asked me when we will know that he is getting close to passing away. I haven't read much about this. What should we be looking for to let us know he is getting close to passing?

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      anonymous 5 years ago

      While searching info on GBM I came across your posts. I appreciate that you wrote and wrote honestly. I am going through this with my sister she just recently stopped all treatments. I am watching her deteriorate quickly ,I can't believe how fast. I am so sorry for your loss

    • vkumar05 profile image

      vkumar05 5 years ago

      A lot of detailed information. Very informative Lens.

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      Laraine Sims 5 years ago from Lake Country, B.C.

      I read this lens before but didn't have my wings. I have returned to add my blessings to this courageous account.

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      katnjim 5 years ago

      sorry tam wont let me respond

    • profile image

      katnjim 5 years ago

      @Tamara14: I can't get it to post so sorry friends

    • profile image

      katnjim 5 years ago

      Grateful for each of you

    • profile image

      katnjim 5 years ago

      @Tamara14: Thank you Tam and all of you who wrote me below as Kathy W.(firgot my password and now I am katnjim) same one though.He is gone 3 yrs now.I love him more..still.He told me he would watch over me through the birds.An Owl took up here and has stayed..funny how it comforts me,Time does not heal but helps.I am amazed at the bravery of all of you Souls while trying so hard to live to love to care.Take care your each one important.I love you all.God Bless

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      Tamara Kajari 5 years ago from Zagreb, Croatia, Europe

      I'm so sorry for your loss and I admire your decision to make a lens about it and to advice others. I have a friend who lost her husband this spring after years of fighting his brain tumor. He was the most positive person I've ever met, but at the end just like you said there was just the fact that the tumor came back and it came back being even bigger. She's alone with three young girls now and the strength she got from her loss is absolutely amazing. She is a nurse, but she's taking all the exams necessary to get her one level higher degree so she could stop working all those night shifts and take care a bit easier for her children. She's in her early 30s and so was he when he died. Nevertheless, his happiness and gratitude for each moment he had with his family is something I recall so often and try to learn from it day by day.

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      Lorelei Cohen 5 years ago from Canada

      Cancer is such a horrible illness and brain cancer just seems to be so common now. I have both an uncle and an in law who passed away from brain tumors within a couple years of each other.

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      shauna1934 5 years ago

      I have a friend who is 5 years out from the removal and chemo on her Glidoblastoma. Amazing!!! We met through brain tumor support groups locally, but mine was benign and not GB.

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      dolphinstar lm 5 years ago

      Good to read about your personal journey with brain cancer. My mother is going through treatment for her brain cancer. I wish they could find better treatments to cure and not just treat it

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      Darcie French 5 years ago from Abbotsford, BC

      A dear friend of mine's child died from a glioblastoma , it was horrible for the family as I am sure it was for you. I loved hearing that your hubby got to die in your arms though, your gratitude for that small blessing shines through. It's all how we cope and move on. Lovely story, and through it I enjoyed your husband's presence also. Many thanks.

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      APackageAtTheDoor 5 years ago

      Thanks for publishing this lens. My wife's brother was diagnosed with a brain tumor in 2008 and passed away 9 months later. It all happened so fast. There is a website called "Lots of Helping Hands" that has an online task scheduling calendar that was helpful in coordinating people to drive him to his appointments and to help watch the kids. His friends and co-workers really helped the family in that regard. Our advice to anyone with a family member going through this is to line up as much support (family, friends, coworkers) as you can because the experience is very time consuming and emotionally draining, Reach out for any help you can.

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      pawpaw911 5 years ago

      Thanks for sharing your story. A member of my wife's family is going through cancer treatment now. It is a hard road to travel.

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      Debbie 5 years ago from England

      People often overlook the family who are caring for patients. It must be hell to go through such a terrible experience with your loved one. Sending you hugs, strength and a squid Angel blessing ;)

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      Laraine Sims 5 years ago from Lake Country, B.C.

      I share your sorrow and story only mine happened to my mother and then my oldest brother. Cancer is one disease I wish there was a cure for now.

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      Showpup LM 5 years ago

      It is a wonderful thing you are doing by sharing all of this information, your story and your heart. God bless you!

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      gottaloveit2 5 years ago

      You are an amazing woman. I haven't walked in your shoes but I share your socks - I take care of my 94 year old Mom and can so relate to what you write. Thanksfully, she's just old and not really afflicted with any sickness but it's coming. Time will tell.

      You've written a beautiful tribute to your husband and I'm sure it will help others who follow in your path.

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      Sandy Mertens 5 years ago from Frozen Tundra

      Sorry for the lost of your husband. Any type of cancer is bad enough, but I think a brain tumor would be the worst. Very information information. This lens will be very helpful.

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      anonymous 5 years ago

      Thank you so much for sharing your story. My Mum had a Grade 4 GBM removed on 22nd June 2011 and then the subsequent radiotheraphy and chemo. Reading how lost you felt on diagnosis was so real for me and how you were suggesting trying this and that - I read a huge research paper on B12 and that sugar feeds cancers - you just don't know what to do. Your website has some brilliant information. Thank you so much for having the courage to put it all out there. It has helped me greatly.

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      anonymous 5 years ago

      Thank you for sharing your story. I'm so sorry you lost your husband this way. It's generous of you to share your experience to help others. One of my first patients as a nurse over 35 years ago was a young man of 26, married with small children, who was diagnosed with glioblastoma multiforme. Such a sad case. I never forgot him or his wife.

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      irenemaria 5 years ago from Sweden

      @anonymous: As far as I understood it - the preassure comes more from the Edema than the tumor. In order to shrink it, they usually give lots of cortisone. I also used that mashine (http://en.wikipedia.org/wiki/Bioresonance_therapy) on my husband twice a day. He had no pain the whole time.

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      anonymous 5 years ago

      @anonymous: thank you for your input. and i;m sorry about your husband.

      he's on pain meds 24 hrs now, fentanyl 72 hr patch and 4mg a dauladid 4mg. so the pain he is having is growth of the tumor causing pressure?

    • mariaamoroso profile image

      irenemaria 5 years ago from Sweden

      @anonymous: I am so sorry for what your family is going through. The effect of the tumor depends on where it is located. The speech, memory and reading/writing abilities is on the left side just at the temple. A stroke can also affect the speech so in your uncles case it can be this. A astrocytoma is called this name because it is "star"-shaped. Has deadly fingers growing out into the brains. There are 4 grades of GMB and number 4 is what my husband had. The last months of his life was not living. He was aware of things to a degree and I know for a fact that he was not happy. So when the doctors say: They can live for more than a year, I always think: So - what quality living is that?

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      anonymous 5 years ago

      My uncle was diagnosed with glioblastoma in the left frontal lobe april 1st. He had hus surgery on April 16th 2011. Hap a stroke after the surgery and it affect his right side, but eventuually regained use for the most part, then in May another stroke, now right side does move, he maybe can move some fingers or toes if he really tries. Oh, we (he) opted for no treatment so its the 4 month mark, since diagnoses and surgery. He started with pain in his head maybe two or three weeks ago. Does this mean the tumor is growing, brain swelling or pressure? He still is there, but if you don't know him then you won't understand what he is trying to say, also his he calls people and things different than what the are but he knows what he's trying to say just can't get it out. His older brother (my dad) died of a brain tumor also in 1994, astrosytoma (slow growing) but by the type we realized it was the size of a tennis ball, he survived about 3 1/2 years.

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      anonymous 6 years ago

      thanks you so much for sharing this. My father has just been diagnosed and seems to be doing well. they have recently found another mass - as you rightly describe - it never stops growing. I appreciate the informatino you give as it especially gives us time to spend with the family.

      So sorry about your loss and thanks for sharing once again.

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      davidber 6 years ago

      Great lens

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      Lisa Marie Gabriel 6 years ago from United Kingdom

      Such a brave lens to share this. I am so sorry for your loss, but leaving a blessing for sharing so openly to help others.

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      anonymous 6 years ago

      I'm dealing with a GBM diagnosis in the family. Your story is very relatable. The shaking, memory loss, forgetting how to eat, losing hair from radiation, getting infections from chemotherapy, losing the ability to walk or see out of both eyes... It's a nightmare. The doctors decided to stop aggressive treatment a few weeks ago. Thankfully he's not in any pain.

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      Debbie 6 years ago from England

      I am so sorry you lost your sweet husband to this terrible illness. I can only begin to imagine how things were for you both. What I do understand is some of the emotions and feelings involved with this. I met some sufferers of various tumours, some high grade, others not, at the weekend and I know just how lucky I am. Lensrolled to ''Brain Tumor''

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      RinchenChodron 6 years ago

      Honey I'm so sorry you lost your husband. You are doing a great service here to help educate people.

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      anonymous 6 years ago

      It took a lot of strength to write this. Well done.

      Thank you for this interesting lens...

      My Dad died from cancer and that was rough.

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      GabrielaFargasch 6 years ago

      God bless you Irene..... You are a strong woman.....

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      LouisaDembul 6 years ago

      So very sorry to hear, I know this disease very well.

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      anonymous 6 years ago

      @anonymous: hello, my mum also has been diagnosed with GBM since last february, we have been through treatment in india for 6 months, she had surgery with a tumor of 6cm by then she had already lost her movement on her right arm and her right leg and was losing her speech it was a tough time for her and me after surgery she had 6 weeks radiation with temoz 100mg also the doctor included an injection called biomab once every week for 6 weeks, am so grateful for my mum she was really strong and tolerated everything without side effect now we are home in seychelles and she has to follow again temoz 250mg for 5 days every month for the rest of her life i do not know how long she has but this illness is like a silent bomb so many things have happen since the tumor good and bad, so to everyone out there who is fighting this trauma remember no one can judge only god has the answer to that only say thank you every morning that you alive.

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      anonymous 6 years ago

      Hello!

      Myself is Avinash.Patankar,last i was diagnosed with GM-4 All treatment over,now temoz 12 cycle are there,now i am feeling pain in head,refuse to take food,over all body pain,Weakness,Right Side Weak.

      Really looking death for death

      When i will going to die

      Pls revert

    • RuthieDenise profile image

      RuthieDenise 6 years ago

      So sorry for your loss.

    • RuthieDenise profile image

      RuthieDenise 6 years ago

      Hi

      I am sorry you lost your husband. Thank you for sharing your story.

    • howtocurecancer profile image

      howtocurecancer 6 years ago

      I know how it is. My mom is a breast cancer survivor, not yet a thyroid cancer survivor. Good luck and best wishes to you. Pray and eat healthy, adopt a healthy lifestyle and it's going to be better.

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      anonymous 6 years ago

      Michele. Well, me too, I'm a single 50 year old. I was first misdiagnosed with Bells Palsy on 8/31. MRI. 9/21/2010 -- Brain Surgery 9/27/2010. The most difficult part thus far is that the Drs and the ple I love had more information that I did and kept me in the dark (and wide awake wondering...steroids until TH night 9/30). Doing ridiciously well, home from hospital the next day, Friday, 10/1. Of course, I know given how fast this has happened I'm probably in shock... love and luck to all, Michele

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      VarietyWriter2 6 years ago

      Thank you for sharing. Blessed by a SquidAngel :)

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      GramaBarb 6 years ago from Vancouver

      An Angel blessing for this lens of courage, sharing and love that everyone must read.

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      anonymous 7 years ago

      Darling Jim, husband 38 years, diagnosed Stage 4 Glioblastoma BT 3-24-7,four days later surgery then Temador Chemo after Lifetime radiation.Dr.H Friedman at Duke Brain Inst.made it possible to receive Avastin Chemo.Jim responded wonderfully! We began to enjoy life again. I retired and came home to be with him.He took 3 rounds of 9 sessions each time.The Dr.said he was in remission,I never let myself think that was true but yet Jim had returned to driving even.I took him to Brevard NC and we fished and ate,watched Wizard of Oz again..our two mini-schnauzers with us and the four of us happy.I wanted to believe what I was seeing.That was Nov.10th 2009.Miracle given from God i felt. Dec. he felt tired and was sick like a virus.I called our Oncologist alarmed.He ordered some medications but felt things were ok.Two weeks later he was different.I called the Dr.The tumor was back ..now on both sides of brain ,we are devastated.Began treatment immediately.Before we could do the next volly he collapsed.They stopped treatment right then.He died Jan 24th 2009. He was amazingly well for many months..I am tormented that I did not at least ask could he have another round when Remission was said for 8 months.Would they have done that especially as well as he responded? Would Ins. turn the Dr down?What.I live each day with that. I still offer Hope for all of you because we had what we had for that time.But advice..ask,do not just think they will put your persons care above all the many others they have to be cared for by a Dr.they are mixed in all the cancers.Now he is gone,I miss and love him so much. I am working ,trying to move forward but each day is so hard.But hold on to each other and try for each day...some patients have lived years....yours can to. But be proactive with the Drs. Most of all I hope you have faith and prayer in your life.It is how I get by each minute even now. Prayers for y'all and God Bless You All..Kathy

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      anonymous 7 years ago

      Thank you for saring your story. My husband had a left temporal hemmoragic stroke in July of 2009. At that time he was treated by Swedish, Dr. Newell. My husband was diagnosed with an inoperable blood clot and we were told it was inevitable he would die. The time was unknown and he was in a sedated coma. By the grace of God we were connected with Swedish hospitals Dr. Newell beforming a study to remove the blood clot in less than 24 hours. The study was financed by a grant, however only 8 receipiants could receive the procedure. My husband was the 8th. My husband recovered in a mirical amount of time and was back to work as a Police Officer by September of 2009 with only a mild deficit of speech. A follow up MRI was performed and it was clean and clear. No tumor was detected or even a thought. It was assumed the stroke was caused by high blood pressure. Just about 2 months after the MRI, October 26 2009, my husband had another brain bleed. At that time the MRI detected a brain tumor encased in a blood clot. The tumor was surgically removed. Swedish, Dr. Foltz was able to remove the entire tumor. However knowing the cancer cells showed they were dividing. My husband went through 6 weeks of radiation daily, simultaneously with Chemotherapy, Temador. Side effects were minimal. Speech again was a minor deficit. He returned to work again first week of February, full duty, no deficits. He has completed his second round of chemotherapy, however fighting two colds back to back exhausting him. We followed up with the Oncologist the listen to his lungs and chest. All clear. The doctors continue to say he is doing good. We have not noticed any changes, however we go for our second MRI April 12th. I am scared, I have also done my research and too see that there is not much hope. It has been a long haul and we have experienced so much, however i feel like I need to keep my guard up, never knowing what to expect. I have been scared to attend a support group due to my fear of what i may hear. I wish I could be told what to expect, and what signs I should look for that would show deteriation. I am writing to say Thank you for creating your page with your story. I feel like I understand a bit more of my journey and continue to remain hopeful that the technology and research may aquire a treatment that would bring hope to patients, maybe not in his time, but in the future of others. Until then, I too will tell my story, in fact i share our journey on caringbridge and we are encouraged by the guestbook. At this time my husband is working crazy fulltime hours and looking healthy. He has increase in fatigue as well as waves of tiredness. Our next round of chemotherapy begins April 17. His treatment will consist of Chemotherapy every 28 days for the next year. MRI will be performed every 2 months. Thank you for allowing me to share.

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      Bambi Watson 8 years ago

      Welcome to the Sharing Hearts Group!

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      GramaBarb 8 years ago from Vancouver

      What an excruciating situation you went through - it takes a lot of courage to do what you did. What an example you are to others.