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Glioblastoma Stage IV

reagen29
Posts: 1
Joined: Jul 2011

My mother (56) was diagnosed with stage IV Glioblastoma on 13 May 2011. Since then it has been a roller coaster of treatment and emotions, a literal nightmare. Due to the location of her tumor, she is not a candidate for surgery so her only treatment options at the moment are Radiation and Oral chemo with Avastin to follow. Of all the blogs that I have read, it is rare to find one that compares to her situation as far as not being able to have surgery. She is currently in a nursing home receiving Occupational and other therapy to help with her speech and memory loss. She no longer carries on conversations and has taken a blank stare approach to things. She recognizes people but her doctor say's that she will never come out of this fog. My hope is that I can bring her home with me but due to working two jobs, I need her to at least be able to carry on simple tasks by herself. Has anyone else experienced a loved one with these symptoms and if so do you have hopeful news about her regaining some sort of natural life?

lamiki
Posts: 1
Joined: Jul 2011

Unfortunately my husband is in about the same boat, he is receiving temodar and radiation, has flaccid hemiplegia on the right, poor speech pattern too. His tumor is inoperable, he is at home but can't be left alone

BabsOregon
Posts: 30
Joined: Jun 2011

My husband (46) is also in the same situation. He has no use of his right hand and his right leg drags. I also don't leave him alone for more than 20 minutes or so. His diagnosis was May 31st.

He has had two hospitalizations (one following a series of seizures and the second because his biopsy site opened up and leaked spinal fluid). His treatment was delayed for two weeks following the biopsy site episode but he has been back on radiation and Temodar this week. We found out today that he is anemic and can't restart Avastin therapy until that is resolved.

Today, his good (left) hand developed cramps that twisted it into an odd position. I massaged it and we put heat on it but I have no idea what this means - is his right side being affected now?

This disease is so brutal and unpredictable. I find the most helpful information from this website because people who are going through this share what is actually happening to their loved ones - not just what "typically" happens or is hoped for. I wish you both the best in coping with this. You are in my thoughts.

Beckymarie
Posts: 358
Joined: Aug 2009

Your posting caught my eye. My husband's biopsy site also opened up from the skull to the brain. It was frightening because everytime he had radiation it opened up more. This is a terrible disease and I am so sorry for everything you are all going through.

micgrace
Posts: 131
Joined: May 2011

I am so sorry to hear of someone else with this horrible disease, GBM 4. I am gradually recovering from the loss of my wife to this shocking disease. I wish you well in your battle with it.

sonfollower
Posts: 26
Joined: Nov 2010

I totally understand the frustration of this cancer. I was diagnosed May 1, 2011 with GBM grade IV and had surgery on May 3,2011 to remove as much of the tumor as possible. I started radiation and chemo about 3 weeks later. Three days into the radiation and chemo treatment my incision also came open which allowed bacteria to enter into the site. I developed a staph infection in the bone and bacterial spinal meningitis. This put me back into the hospital for another 10 days. I had to have an LP shunt inserted to keep the level of spinal fluid in my head even and have been on very strong antibiotics ever since then.

I have finally completed my 6 weeks of radiation and Temodar. I am now in my 1 month resting period before they will do another MRI.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im truly so sorry to hear this. There is nothing to say other than I know how you feel. I wish my sister didnt have this, I wish that we could go back to February and start over.With life the way it was before we heard the words "You have a brain tumor"

Beckymarie
Posts: 358
Joined: Aug 2009

I think about how quickly life changes. We had such a wonderful, blessed life and it all changed with one cat scan. My husband, children and I went through 15 months of hell. He is gone now and the sadness just does not seem to go away.

BabsOregon
Posts: 30
Joined: Jun 2011

Thank you for the post regarding your husband's biopsy site reopening - it was helpful to hear that my husband isn't the only one this has happened to. It was such a freakish event. Like everything, I guess, since May 31st.
I am so sorry for your losses. My husband is impaired and very different in many ways but he is still here. He was a very active man and most of what he used to do is lost to him but he still can water the garden and likes to participate in meal planning so we do a lot of that. I can't imagine this house without him.
Both you and Mic (who lost his wife recently) are in my thoughts.

madisonmuzz
Posts: 13
Joined: Apr 2011

Hi Beckymarie. I totally understand the rollercoaster feeling you and your children are facing. My husband was diagnosed with a GBM Grave IV December 27, 2010. He is doing really well right now with the Avastin Chemotherapy. Up until we started the Avastin it has been a huge rollercoaster of emotions. To make matters worse, my dad passed away in February unexpectedly of a Pulmonary Embolism. Talk about a rush of emotions!

I am so sorry to hear he is gone now. How are you doing? How about your children? I am so dreading the day when the oncologist tells us there is nothing else they can do. I know that day will come, but I am praying it is not for a while. I have an acquaintance in North Carolina whom has been my life line. He is going through a GBM Grade IV but he is 5 1/2 years out from surgery. Doing well. I continue to pray this will be my husbnad.

Please know there are many people who share your pain and roller coaster of emotions. Please know if you need to talk I am here for you. Just contact me. email address is jls2@roadrunner.com.

God bless.
Leslie

Beckymarie
Posts: 358
Joined: Aug 2009

Leslie,

Thank you for your kind words. My children and I are doing okay. We miss our Terry every day but there is no choice but to move forward. He fought bravely for 15 months. I wish the very best for you and your husband.
Becky

thebrother
Posts: 2
Joined: Sep 2011

Hi, my brother in law was just diagnosed with an inoperable GM tumor and my sister and I are preparing ourselves. I read your post and it seemed the most hopeful story of the few I have read. Where are you now with things and what can you offer a family member as they enter the beginning of this particular journey.

august2011
Posts: 1
Joined: Aug 2011

My dad is in the same boat. My dad was dinagosed with Gliobalstoma November 30 2010 and ever since then its been nothing but hell in my house. My parents fight. My dad gets mad at the most stupidest things. I understand that he is scared and everything because he is in his second round of radaition and chemo. I'm just writing to you to ask who do you do it and how do you try and stay possitive about everything?

familyfighters
Posts: 3
Joined: Mar 2011

I'm so sorry to hear about your mother. I wish that another family didn't have to go through the same thing we did. My husband (37) had the same treatment options as your mother: unoperable, radiation, and oral chemo. He actually just recently passed away. I really want to offer you hope, because I do know that each patient responds to treatment differently. Here is a little of my husband's story. My husband got back some of his energy through the radiation. He would get tired most days, but we always tried to make the most of it. He was a night person, so he was most like himself at 3 in the morning. The best advice that I can give, cherish each day and make each momment memoriable. It was hard, because I can connect with you in so many levels. The fog and blank stares were very hard for us. In a way, it felt that we had already lost our loved one somewhat. The journey was not always the easiet one, but hang in there. My husband had rough days, but you will also see GOOD ones. During the course of his treatment, we celebrated EVERYTHING. Do things that make your mother and you happy. Also, take care of yourself, sorry I know it is easier said then done. A great place to check into is Cancer Support Community in your area. It is a wonderful place to connect with others going through the same daily battles. I will keep your mother, you, and your family in my prayers. If you have any questions, don't hesitate to ask. Please if you get the chance, keep me updated in your mother's condition, because I will now always be thinking about her.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Unfortunately, I became a full-time caregiver late last year when my husband starting losing his sight, confirmed as a GBM in February, after battling AA (stage III) for more than a year. He now is struggling to recognize me, which is just devastating. I never dreamed it would come to this. I just tried to take each challenge as it came, and there were many. It now seems there are even more challenges ahead. Along the way, there were many mercies, too, and I don't want to lose sight of that.

My thoughts are with each of you as you endure the heartbreak this cancer brings to our loved ones and families.

msomawas
Posts: 22
Joined: Aug 2011

My husband was diagnosed on 7/3. His is inoperable too. His has not progressed as far as your mother's apparently. It was found after he had one headache. We went to our local ER and they did a CT scan. Anyway, I don't have anything to offer you, but I do hope your mother comes out of her fog, and send you my very best thoughts.

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Reagen,

I have the same questions as you. My father is 68 and was diagnosed 2 weeks ago with a "likely GBM" Last night they said pathology has confirmed it. He too is inoperable due to the depth of his tumor. All he has had done so far is a Biopsy last week. He is not bouncing back at all. He had leg and arm weekness 2 weeks ago and now can't get to the bathroom without assistance and isn't even scheduled to meet with oncology until next week and then they are considering starting his treatment the following week. This will be almost 4 weeks from diagnosis and without having had surgery I am very concerned that he may not regain his mobility and independence even if it is temporary. Please keep me posted as we seem to be in similar circumstance at the same time.

Regards,
Janelle

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Let me first say I am so sorry that you are on this road we are traveling too. My sister too has inoperable GMB 4. It seens like its is forever waiting to treatment to start. As far as the weakness get a hold of the doctor right away. Swelling in the brain can cause this too we started on decadron and the weakness went away the sooner its treated the better. How big is his tumor and where is it? My prayer are with you.

elliebunker
Posts: 1
Joined: Aug 2011

Hi to everyone out there who has joined this discussion - we all share a connection with someone suffering. Our godson, who is 10 years old, has just had an operation for GBM IV and is awaiting chemo and radiotherapy. His parents have been told that the prognosis is not good so we are doing everything we can to support them. Does anyone know of any current trials that are taking place or where I can find out more about trials that have already taken place? We are clinging on to every hope that somewhere out there is a cure for all these loved ones with this terrible illness. By the way if you want some stories of hope and survival try this link http://www.btbuddies.org.uk/stories-of-hope.html. It is very encouraging. Never give up hope.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Thank you for the link info I needed that today. Praying that we all get to write our stories. Praying for your godson...

petronius
Posts: 1
Joined: Aug 2011

I know that there is a medical study on GBM 4 in Swiss (I signed to be part of that research. Try to search about CILENGITIDAE

zz1960
Posts: 1
Joined: Aug 2011

just to let you all know I was diagnosed in june 2006 and after back and forth investigating a non aoperable grade 3 oligo something forgot the namr exactly found out that indeed the tumor is operable always good to get a second opinion had the operation sept 2006 biopsy came out the wors i can imagine gbm grade 4 I was 46 at the time I did the standard 6 weeks radiation with low dose temodar ( or as we call it in Canada temodal)
after that went to high dose temodar 5 days on 25 days off , I hated doing that with a passion and dreded every time it came around doing it I had side affects such as dizzyness and weakness. had a couple of siezures as well was put on different anti siezure meds lost my lisence for a year which was so hard because without driving I had a very hard time coping 15 months later I told the oncologist that I could not handle it anymore so he let me take a 3 month break which acually turned into a 1 year break and since my MRI'S were clean the break continued till today ,I do not take any chemo only the antisiezure meds which i am used to by now I still take an MRI every 3 months but still clean no sign of anything returning, so who knows? Maybe i am one of the few lucky ones , I heard that today
many more people are doing well like me. so do not dispair all of you out there with this terrible curse. Be positive and pray to god daily. By the way i have no special diet. I eat just the way I did before which for my own good I should change. but just to prove a point, has nothing to do with it , If your time is up no matter what you do will not help.

JCM2468
Posts: 4
Joined: Aug 2011

Hi,
My father was diagnosed in July this year with Glioblastoma Grade 4 Tumour, He had 100% of it removed and has had no symptoms since and seems 10 years younger, Although he is supposed to be doing Radiation and Chemo soon, He is trying to find as many stories as possible of people that havent done it, as he is not stoked on the idea and really DOES NOT want to do any treatment, He has been doing all the natural possible things, Meditation, Strict Diets etc. and Now is due to start treatment in a week or so, Would you suggest that treatment made it worse, cause thats what he seems to think. As some people say treatment can sometimes turn the cancer more aggresive and just prolong the prognosis? Do you think treatment was making it worse for you?

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Hi, Thank you so much for your reply. IT has been a couple weeks since my posting and so much has happened and unfortunately not much that is good. My dad came home yesterday after a month in the hospital. He walked in and was wheeled out. Since he is inoperable with his tumor deep in the thalamus area and well over 4cm he is no candidate for gamma. He finally starts radiation tomorrow so it will be almost 4 weeks to his admission/diagnosis. He is on decadron and has been since the first day in the hospital but it is shocking to see how quickly he has lost all awareness and most of the use of his left side. His leg and foot are cold, it drags along, he forgets where it is, his arm is flopping around and we have to tell him constantly to try and be aware of them. I would say his Karnofsky performance is about a 40?.....he cannot stand alone, and only use small assistance from a walker with guided assistance from someone else, cannot transfer on his own and has fallen twice since he has come home yesterday. He cannot be left alone and on top of all of this is in complete denial of his situation. A physicians assistant told him he would have 2 to 7 years, and I just do not believe this and haven't found any evidence of someone at his age, inoperable and with such low function of having such survival times.....

We feel we will need hospice in the near future but how do we make such a call when he doesn't even understand what he is dealing with. He thinks he will "have the radiation, shrink this tumor and I will get back to normal, ride my bike, play golf and go hunting...." I cannot imagine decadron or radiation getting him back to normal....do you have any suggestions on how to handle this and doesn't it seem inconceivable that technicians and PA's would be telling him that he has years?????

So confused and frustrated.....if there is anyway to contact me outside of this I would appreciate it....I do not seem to get an email update that there are comments here and desperately need someone in the similar situation to talk with....I am happy for families who are able to have surgery and exhaust all treatment options, but it just seems much more bleak when surgery is taken off the table....thank you and you can reach me at janelliewest@yahoo.com

J

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im so sorry, I really do know how you feel. My heart goes out to you. I am having a very hard time of it too we are 7 months into this and it has been so hard we just dont seem to be getting any break with this.I dont understand why the PA said that with GBM did he misunderstand? I know at the beginning the doctor told my sister it was treatable and people live for years. My sister said ok and we went home. She took it as we can cure it and everything was going to be ok. I was crying and telling her I cant lose my sister and she said Im going to do everthing to beat this. She didnt hear what she didnt want to hear. A week later the same doctor put out that damn 15 month time limit. My sister was shocked.
7th months later the doctor says today he wants to revisit the idea of surgery. My Dad says you think its going to cure it now. I just didnt know what to say.Dont get me wrong I do have hope I will always pray for a miracle and keep fighting this fight with my sister as long as she wants to. She is my best friend and I cant even think about life without her. Wow that is so hard to even write...
I will pray for you and your Dad. Why did he stay so long in the hospital? Why did they admit him? Once radiation and chemo starts there is a little feeling of relief. They are doing something the waiting is hard.
Take care

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

I'm curious if your sister had surgery? I thought she didn't but this site is difficult to navigate so I cannot seem to find your story and comments in one general area....after seven months how is her condition? Does she seem stable, mobile and alert?....My dad is very alert and his mind is good but physically he is so weak. The reason they kept him in the hospital so long is that he literally couldn't stand up after 8 days in there. He walked in but after the biopsy and a couple days in bed he rapidly lost the use of his left side and even just a few weeks more his left leg is very limp and he has to focus very much to move his hand and move his leg....I just do not understand how that will come back. No one has told us 15 months or really even the 8. I just know that my best friends mother had the same tumor size almost same location, inoperable and she did the same treatment my dad is and she was gone in 7 months....in addition to that she was physically better she was taking walks during her early days of radiation and getting out and staying mobile.

Last night was a bad night for him and he fell, had a terrible potty accident and is just really struggling to stand and transfer from chair to couch, chair to bed, chair to toilet. I cannot envision where he will be when radiation makes him weaker and decadron increases....how will he stand then? How will I get him to radiation?....This is just mind numbing....I will say though, that when I am with him I feel like the CEO of a new company, I'm all business, very focused, doing the work, making the calls and telling him things he needs to do even if he doesn't want to hear it.

J

connsteele
Posts: 232
Joined: May 2011

First, I am so sorry you are going through this with your dad. I know how hard it is. We are caretaking our 34 year old son for AA3/GBM, dx 4-13-11. After his surgery to debulk the biggest of the multiple tumors (rest our inoperable as they have multiple infiltrative "fingers"), he was better. Even worked for a few half days. But once we started radiation, he went downhill real fast. The radiation doc did say that during treatment, symptoms would get worse before they got better. How true. It was really hard on him. Got to where he couldn't walk or do anything on his own, including bathroom, dressing, and sometimes even feeding himself. Now, we are about 8 weeks post radiation and he is doing much better, but still not to the level he was before radiation. At one point during radiation, he was on 24 mg of decadron, which was awful. Thank goodness, he is now off that evil drug. At the time of dx he was living alone in the DC area, but after ending radiation, we had to move him back home with us in Ohio as he can't live alone. As I said, he is doing better. Now, he uses a walker/cane to get around in the house, and a wheelchair for longer outings at stores, etc. His speech has improved as well, but still some fine motor deficits and vision problems.

Upon getting his medical records for the transfer to Ohio, it was a surprise reading over his records. When he was so bad during the radiation, the docs apparently were considering taking him off treatment and bringing in hospice. They never mentioned that to us. At no time, even at the initial dx, did they ever give us a timeline as to how much time he had. Did you bring up the question or did your son's doc offer that on his/her own?

At some level, I'd like a timeframe, but on another, I don't. It is what it is, and we have to play the hand we're dealt.

Please take care of yourselves as well. I know how stressful it is as a caretaker. Caretaker fatigue is real.

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