Brain cancer(Glioblastoma grade 4)

janaselva

alexyj23 said:

I'm going through the same

Hi Missy,

My dad was diagnosed last year with this horrible disease.  He was not operable unfortunately.  One thing you have to remember is that it is his brain that is being affected.  My dad's tumor is in his temporal lobe which is the area that controls speech and memory.  so when he talks, he sometimes can't put together a thought or can't think of the word he wants to say.  Depending upon the area of your grandpa's tumor, it is most likely causing him to be confused.  I don't want to be the one to tell you this, but prepare yourself for what is to come.  The people we love about have a hard road ahead of them as do the ones who are caring for them.  let me know if you have any other questions.  Just keep praying and thinking positive.   You have to stay strong for them.

 

Ashley

Grade 4 Glioma

Hi Ashley,

I am going through a similar experience as mentioned by yours, as my mom was recently diagnosed with Grade 4 Glioma. This has impacted her Speech, Memory and her movements on the right hand and legs. Doctors have suggested that operating & treating her would not have any major difference in terms of her life expectantcy due to severity of the tumor and then due to her age. I am really worried, as i dont want her to suffer during her last days. I just don't know what to expect next. Due to the steroids given by the docs, my mom is also very aggressive and angry these days..

Can you suggest or advise me what to expect further.. Is there any hope ...

Thanks

Jana

mccindy

janaselva said:

Grade 4 Glioma

Hi Ashley,

I am going through a similar experience as mentioned by yours, as my mom was recently diagnosed with Grade 4 Glioma. This has impacted her Speech, Memory and her movements on the right hand and legs. Doctors have suggested that operating & treating her would not have any major difference in terms of her life expectantcy due to severity of the tumor and then due to her age. I am really worried, as i dont want her to suffer during her last days. I just don't know what to expect next. Due to the steroids given by the docs, my mom is also very aggressive and angry these days..

Can you suggest or advise me what to expect further.. Is there any hope ...

Thanks

Jana

some hope for no suffering

Hi Jana,

I've spoken to several people who lost loved ones to GBM.  Typically there is not a lot of suffering toward the end; as the tumor grows and increases the pressure on the brain, the person usually tends to sleep pretty much all the time.  They aren't in a lot of pain, just very sleepy . They do usually lose the ability to speak or move much.  More of the suffering is felt by the family, watching a loved one go through this disease, knowing the invevitable is coming.  Hang in there.  And tell her you love her a lot, even when she is sleeping, she'll hear and know you are there with her.

confusedtr

understanding gbm...help!!

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

confusedtr

understanding gbm...help!!

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

mccindy

confusedtr said:

understanding gbm...help!!

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

aggression

The aggression can be a fairly common side effect of the steroids.  It also depends on where the tumor is.  Did he have surgery to have it removed?  If you feel his behavior is dangerous and he is not sleeping, it's important to address this with his doctor, as they may need to adjust his medication levels in order to keep his swelling under control and also his mood swings. 

Ayline

confusedtr said:

understanding gbm...help!!

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

HOPE

Hello everyone, I am new to this site and it is interesting/comforting to read eveyone's experience with GBM. I couldn't figure out how to start a new post so I am replying to one of the last posts.

I have gone through the same rollercoster of emotions since November 2013 when my father, aged 77, was diagnosed with GBM on his left temporal lobe. He underwent surgery the first week of December 2013. Within two weeks he started Chemo which lasted 7 weeks, once a week and 33 sessions of Radiation (still few days left as there was a gap of 2 weeks between). He is on Dexa injections until the radiation is completed and Depakin tablets for life (3 per day), during radiation he also took Temomid 100mg and Temodal 20mg.

Well so far so good... what can I say, I have to be greatful that the surgery went well and most of the tumor was removed. I don't know the percentage. He experiences fatigue and sleeps a lot, though he tries to keep active in the house. His memory is a bit shaky, he doesn't remember names at all but recognizes faces and voices. His speach was also effected in that he confuses words without realizing.

Next step is to do another MRI probably ealry March 2014 to see if there is new growth.

I do have a colleague whose mother was also diagnosed with GBM, underwent surgery in April 2012 but unfortunately passed away 18 months later in November 2013. On the other hand a neighbor of hers has lived already 5 years with this desease. So, it is different case by case, age and I guess physical state. The most important is to stay positive and to fight this beast.

Thank you!

Ayline

Ayline

alexyj23 said:

I'm going through the same

Hi Missy,

My dad was diagnosed last year with this horrible disease.  He was not operable unfortunately.  One thing you have to remember is that it is his brain that is being affected.  My dad's tumor is in his temporal lobe which is the area that controls speech and memory.  so when he talks, he sometimes can't put together a thought or can't think of the word he wants to say.  Depending upon the area of your grandpa's tumor, it is most likely causing him to be confused.  I don't want to be the one to tell you this, but prepare yourself for what is to come.  The people we love about have a hard road ahead of them as do the ones who are caring for them.  let me know if you have any other questions.  Just keep praying and thinking positive.   You have to stay strong for them.

 

Ashley

Hi Ashley, how is your father

Hi Ashley, how is your father doing? How old is he? My father's tumor is also on the left temporal. His speech is the most effected too, he loses words in the sentence and sometimes can't put a whole sentence together. He has also have a problem remembering names. It's tough! Fortunately he is physically fully functional which gives him a lot of hope because he is a very active individual even at age of 77. One other thing I think keeps him optimistic is that he doesn't really know it is cancer... well we never uttered the word and he doesn't know that the tumor is that aggressive. As far as he is concerned the surgery cured him and once the therapies end he will be back to normal.

Thanks.

Ayline

pvhkv9

njecab said:

New Treatment

 

Hi,

 I am sorry to hear, Don’t give up hope.

My Uncle was diagnosed with GBM in 2011 at the age of 50, he underwent surgery, radiation and chemo. Just after 3 months he received treatment Symptoms worsened with recurrence of tumour, heaviness of the head, with loss of recent memory. Then we came across the new therapy called SPMF. This treatment is a non surgical process and is not painful. For the past 15 months there is no recurrence of the tumour. This treatment has yielded good results and a lot of improvement in him. This treatment might help in your husband's case. I hope you both find more comfort.

 

For more details check there website: http://www.sbfhealthcare.com/

Where did your uncle take SPMF

Hi,

My father has a recurrent GBM-O. Could you please provide more information on this therapy. Where did you Uncle take it? Who treated him? Possible share your contact information. I would very much appreciate that help.

 

summariac

maria isabel said:

hi there

hi there,

my mum was diagnosed on the 3rd of december, since then she has had surgery, radio and chemo, she is about to start her 5 days a month temodar. In DUKE university (USA) they are taking patients for ADN vacciantion, they are very helpfull, Also my mum has been doing very very well since taking extra suplements, like GRAVIOLA, CURCUMIN, KRILL OIL, MUltivitamins....and a bath with Salt every day, 2KG of marine salt for a full bath or 1 KG for half bath.

Also if his tumor was METHOLISED (in the biopsy) he might be better on AVASTIN? do not give up, there are survivors with GLIOBLASTOMAS and what they eat can make a difference too! my mum now hardly eats bread, flour, pasta, biscuits....and all those things that nutricionally do not give her anything, everyday we liquidised fruite and veg, she eats lots of fresh fruit, fish, organic chicken, alkaline water.....no sugar (sugar does nothing good to your body, is all processed!) and she looks better now than ever, she skin in 3 weeks of eating so healthy is brilliant, her blood test are so good that the oncologist says is like she is not having chemo....

you can email me if you wish yeyes29@hotmail.co.uk

Good luck

isabel x

Your Mom

Hi Isabel,

Today is 11/21/14.  My husband was just diagnosed with a glioblastoma grade 4, which he had removed on th 11th of this month.

We are getting everything ready for his radiation and chemo to start the first week in Dec. I am very concerned about the effects of this treatment on his overall health.

1. Is your Mom still alive and still receiving treatment?

2. Did your medical oncologist approve all of the subliminets and diet changes?  we will be on the same chemo cycle  with the Temozolomide?

3. The bath with marine salt everyday, what is that for?

4. You mentioned the tumor being Metholised?  i guess i am assuming they know that and have chosen the better of the 2 chemo medications.  is this a bad assumption?

5. You also spoke about a clinical trial out of Duke.  is that still happening and did your Mom get to participate?

 

Thankyou so much for posting

Colleen

 

 

 

 

 

 

 

 

 

 

 

 

 

 

summariac

idogi said:

GBM Grade 4 - Homeopathy

My husband was diagnozed with GBM 4 last December.  He has has 42 days of Temodal and 30 days radiation therapy.  Since then he has had another round of 5 days Temodal.  His quality of life is dreadful - he suffers from complete and utter exhaustion, poor sight, and sleeplessness at night. His prognosis is equally dreadful according to the doctors.  We have recently signed up for an Advanced Homeopathy Protocal which has not yet shown any signs of improvement.  Maybe it's too early (10 days so far).  However, the Homeopathy Clinic promises better results were he to discontinue the Chemotherapy.  This is a diffucult decision to make.  Does anyone have any experience in this field?

Homeopathy treatment on a grade 4 glioblastoma

Hello,

Myhusband just had a grade 4 glioblastoma removed on 11/11/14.  We are preparing to start the radiation and chemo treatment using Temozolomide.

After reading your post i am more concerned than ever about the effects of the treatment.  I noticed you had a response from someone named Isabel.  i was wondering if you tried any of her suggedtions , with the approval of the treating oncologist?

 We are also investigating Homeopathic remedies.  Did you try any, with any success in eradicating the cancer cells or success in helping your husband with the side effects?

Please let me know how you are both doing .

Regards,

Colleen

 

 

 

 

 

 

 

 

Newbride2014

Ayline said:

HOPE

Hello everyone, I am new to this site and it is interesting/comforting to read eveyone's experience with GBM. I couldn't figure out how to start a new post so I am replying to one of the last posts.

I have gone through the same rollercoster of emotions since November 2013 when my father, aged 77, was diagnosed with GBM on his left temporal lobe. He underwent surgery the first week of December 2013. Within two weeks he started Chemo which lasted 7 weeks, once a week and 33 sessions of Radiation (still few days left as there was a gap of 2 weeks between). He is on Dexa injections until the radiation is completed and Depakin tablets for life (3 per day), during radiation he also took Temomid 100mg and Temodal 20mg.

Well so far so good... what can I say, I have to be greatful that the surgery went well and most of the tumor was removed. I don't know the percentage. He experiences fatigue and sleeps a lot, though he tries to keep active in the house. His memory is a bit shaky, he doesn't remember names at all but recognizes faces and voices. His speach was also effected in that he confuses words without realizing.

Next step is to do another MRI probably ealry March 2014 to see if there is new growth.

I do have a colleague whose mother was also diagnosed with GBM, underwent surgery in April 2012 but unfortunately passed away 18 months later in November 2013. On the other hand a neighbor of hers has lived already 5 years with this desease. So, it is different case by case, age and I guess physical state. The most important is to stay positive and to fight this beast.

Thank you!

Ayline

I am new to this site as

I am new to this site as well. I have just been looking for some advice for how to deal with the stress and range of emotions being a caregiver. In august 2014 my husband was diagnosed with stage 3 Giloblastoma tumor. While on a family vacation my husband had a seizure which is how we found out about the tumor. They beleive they were able to remove all of the tumor. This happened 2 months before our wedding. He completed 33 sessions of radiation and is currently taking temodar Pill 5 days on 26 days off. His first MRI looked good the second one will be in January. I can relate my husband is tired all the time and sleeps a lot. His memory is not as good anymore either. He can't remembet certain events and confuses certain words. Being adjusted to married life and trying to comprehend what is happening to my husband at the age of 30 it's so hard to try to process all these emotions. I wish all the best for your father And your family. 

goodgirl13043

summariac said:

Your Mom

Hi Isabel,

Today is 11/21/14.  My husband was just diagnosed with a glioblastoma grade 4, which he had removed on th 11th of this month.

We are getting everything ready for his radiation and chemo to start the first week in Dec. I am very concerned about the effects of this treatment on his overall health.

1. Is your Mom still alive and still receiving treatment?

2. Did your medical oncologist approve all of the subliminets and diet changes?  we will be on the same chemo cycle  with the Temozolomide?

3. The bath with marine salt everyday, what is that for?

4. You mentioned the tumor being Metholised?  i guess i am assuming they know that and have chosen the better of the 2 chemo medications.  is this a bad assumption?

5. You also spoke about a clinical trial out of Duke.  is that still happening and did your Mom get to participate?

 

Thankyou so much for posting

Colleen

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hello Colleen, I have chosen your post because of similarities and our time frames. Often the posts I can relate to are older and the people are sadly no longer with us. My husband was diagnosed end of October 2014 with a tumor in right frontal lobe and underwent a 6 hour surgery on November 14. The surgeon had told us from the MRI prior to surgery that he thought a 99% chance that it was benign and had been there a long time, but somehing "woke it up, and made it angry." and it should come out asap because his ability to perform his work duties was being affected due to left side mobility and dexterity problems. When he came to the waiting room and told me it was not as he expected and was in pieces and was able to get it all working under a microscope. He spent 3 days in ICU and 2 days in a room and from there to a rehab facility to help him regain strength. A second MRI showed no new growth but a few blood clots from the surgery. The hospital's pathology could not positively diagnose it and sent the specimin to Mayo clinic where 10 days later, the report came back as a Gliosarcoma. The surgeon said it is a rare varient of GBM, primarily affecting males in 50th, 60th. and 70th. decade of life. He said it is to be treated exactly the same as Glioblastoma with the same prognosis, which is 6 months without chemo and radiation and possibly 12-15 months with, but no longer, and it WILL come back and when it does, it will be with a vengence! He is due to come home on January 6 and our journey for treatment begins.

I have contacted Vanderbuilt oncology department and will be making an appointment to drive the hour there for a consult and possibly a clinical trial if he qualifies. No way to know without another MRI, but this BEAST may already be coming back! The medications he is currently taking is Dexamethasone 3 mg. 3x a day, and an anti-seizure drug.

I would appreciate hearing from you and staying in touch. Another wife who is experiencing a similiar life altering situation is so important to me right now. We have our loving family, our pastor and church friends, but none of them can begin to relate to this horrible nightmare that life has dealt us. Additionally, we are raising a 5 year old granddaughter since she was 6 weeks old and have legal permanent custody of her. She is the sunshine in our lives, loves her Papa, and he adores her and wants to live as long as possible for her and for me.

goodgirl13043

njecab said:

New Treatment

 

Hi,

 I am sorry to hear, Don’t give up hope.

My Uncle was diagnosed with GBM in 2011 at the age of 50, he underwent surgery, radiation and chemo. Just after 3 months he received treatment Symptoms worsened with recurrence of tumour, heaviness of the head, with loss of recent memory. Then we came across the new therapy called SPMF. This treatment is a non surgical process and is not painful. For the past 15 months there is no recurrence of the tumour. This treatment has yielded good results and a lot of improvement in him. This treatment might help in your husband's case. I hope you both find more comfort.

 

For more details check there website: http://www.sbfhealthcare.com/

SPMF

This is truly exciting! Where did your Uncle receive treatment, and what are the costs?

AllieKR

Newbride2014 said:

I am new to this site as

I am new to this site as well. I have just been looking for some advice for how to deal with the stress and range of emotions being a caregiver. In august 2014 my husband was diagnosed with stage 3 Giloblastoma tumor. While on a family vacation my husband had a seizure which is how we found out about the tumor. They beleive they were able to remove all of the tumor. This happened 2 months before our wedding. He completed 33 sessions of radiation and is currently taking temodar Pill 5 days on 26 days off. His first MRI looked good the second one will be in January. I can relate my husband is tired all the time and sleeps a lot. His memory is not as good anymore either. He can't remembet certain events and confuses certain words. Being adjusted to married life and trying to comprehend what is happening to my husband at the age of 30 it's so hard to try to process all these emotions. I wish all the best for your father And your family. 

Newbride, I can so relate to

Newbride, I can so relate to you. First, off, I am sorry to hear of your husband's diagnosis but so glad his scan looked well! I am 28 years old and just lost my husband a few weeks ago to AA3. He was 29 and we had only been married for a year and 3 months. I am different though in that he has had this tumor for 6 years,  but his scans were stable until 6 months after we got engaged so I know what it's like trying to start a life together and coping with brain cancer. We were very lucky in that Adam had few deficits with his tumor, and they didn't start showing up until this past year. Just some minor left sided weakness, occasional seizures and some small memory issues. It's a lot to take in, I know, but for us we just wanted to keep things as normal as possible. My husband was tired a lot too so we did a lot of movie nights or just went out to dinner. Nothing too crazy but we both enjoyed the time together. Does your husband feel well enough to do these things? Getting out and feeling normal really helped both of us.  Before my husband passed away we had been battling this recurrence for 2 years so in a strange way, it just became a normal part of our life that we didn't really think much about. He didn't start to go downhill until August of this year. I took care of him 24/7. It was stressful and there are definitely a lot of different emotions involved when you are a caregiver, espcially being young and newly married. It just isn't fair. You have to remember to take care of yourself too, though. People told me this all the time. It's good to do things for yourself. Go get a massage, go shopping, get your hair done, go to lunch with a friend. Getting out and doing something for yourself will help you recharge and it will not only benefit you, but when you take care of yourself you are benefitting your husband as well.  Even when things got bad for my husband I just continued to make things as normal as possible, both for him and me. I miss him so much but I feel so blessed to have had the opportunity to care for him. Some days were very hard but it's the most rewarding thing I've ever done and I would do it all again if given the chance. Just remember that you are both so blessed to have each other to lean on as you go through this. I had so many people telling me after Adam passed that I made his life so much better and that he never would have done the things he did had we not been together. Even his nurse told me there was no doubt in her mind that he lived as long as he did because of his love for me. When things get hard I try to remember those words. They mean everything to me. You will feel so many different emotions, anger, fear, sadness, confusion, happiness, etc. Just know they are all normal feelings. You will have good days and bad days but you just have to hold on to the good days.  No matter what happens, try to stay positive, it can make all the difference in the world! You two are in this together and it will bring you closer. I know there aren't many young couples out there dealing with this and you guys are just beginning this journey, but even though my husband is no longer fighting the battle, I am here if you want to talk 

ankit khanna

njecab said:

New Treatment

 

Hi,

 I am sorry to hear, Don’t give up hope.

My Uncle was diagnosed with GBM in 2011 at the age of 50, he underwent surgery, radiation and chemo. Just after 3 months he received treatment Symptoms worsened with recurrence of tumour, heaviness of the head, with loss of recent memory. Then we came across the new therapy called SPMF. This treatment is a non surgical process and is not painful. For the past 15 months there is no recurrence of the tumour. This treatment has yielded good results and a lot of improvement in him. This treatment might help in your husband's case. I hope you both find more comfort.

 

For more details check there website: http://www.sbfhealthcare.com/

More Info about New treatment called SPMF

Hey friend,

 

Hope you are well

 

Please help me as my father is suffering same conditions and m really worried. Hows ur uncle and where he took treatment any info would help me lot..

 

 

Thanks

Annkit

ahmadnahaas

this remind me about something i've heard about, which is treating with "a new molecular therapy that uses targeted peptides and proteins to restore cellular function". i remember that i've read about it some where when I did a Google search for the term "Peptide treatment", and found a company by the name "Regenerative Cellular Therapy".

i would ask the members to do the same and tell me if you have more results than i had!

StevieD

TAremote said:

Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
Keep the faith, and God bless you and your family. If I can help, please let me know

Tom

GBM Grade 4

Hi Tom,

 

My friend in Berlin just had the surgery to remove about half of his tumor. He starts chemo on Thursday. He's 57. I'm told he is having trouble with motor skills, maybe stroke like symptoms a week after surgery. Anything like this happen to you?

Also, what alternative treatments are you aware of and where can he get information about them.

 

Thanks Tom and good luck!   Steve

StevieD

Newbride2014 said:

I am new to this site as

I am new to this site as well. I have just been looking for some advice for how to deal with the stress and range of emotions being a caregiver. In august 2014 my husband was diagnosed with stage 3 Giloblastoma tumor. While on a family vacation my husband had a seizure which is how we found out about the tumor. They beleive they were able to remove all of the tumor. This happened 2 months before our wedding. He completed 33 sessions of radiation and is currently taking temodar Pill 5 days on 26 days off. His first MRI looked good the second one will be in January. I can relate my husband is tired all the time and sleeps a lot. His memory is not as good anymore either. He can't remembet certain events and confuses certain words. Being adjusted to married life and trying to comprehend what is happening to my husband at the age of 30 it's so hard to try to process all these emotions. I wish all the best for your father And your family. 

GBM Grade 4

Hello newbride,

I will say some prayers for you and your husband. It's hard.

Thank you for sharing so others can learn. I have a friend who just had surgery for GBM Grade 4 and will take chemo on Thursday. But they were not able to remove all of the tumor, and he has apparently already started having big trouble with his motor skills and stroke-like symptoms. He's 57.

Did you guys have problems like this?

And are you aware of any alternative treatments we should be looking at?

 

My friend is in Berlin and I'm in Houston.

 

Thanks,  Stevie

StevieD

confusedtr said:

understanding gbm...help!!

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

GBM Grade 4

Hi there,

Sorry to hear about your husband. My friend, age 57, just had the surgery and starts chemo on Thursday. His wife told me today he is becoming partially paryized, cannot drive or even walk up and down the stairs and is having memory problems. Did this happen to your husband.

Are you guys aware of any alternative treatments available?

 

Thanks & Blessings,  Stevie

tkennedy777

Glioblastoma

My family is in the same boat as you with my mother. She has grade 4 Glioblastoma. She also had brain surgery, followed by treatment, and it is still growing. This cancer is very aggressive, and very scary. The person with the cancer is also not the same. My heart goes out to your family. I know it is a difficult journey, and the most difficult part is the wondering what will happen and when.