topic Re: GBM Brain Tumors in Living with cancer

GBM Brain Tumors

CatBye — Tue, 22 May 2012 00:12:33 GMT

Hi, Its been a while since i have been online. Let me re introduce myself. My name is Cathy I am 29 and 12 months ago i was diagnosed with a Glioblastoma Multiforme grade 4. Since than i have had 2 brain surgerys, 6 weeks of radiation and 6 months of chemo. I am very intrested in speaking with anyone going or gone through something similar.

Re: GBM Brain Tumors

exhausted — Tue, 22 May 2012 13:19:53 GMT

Hi Cathy My name is Terese and 20 months ago my husband was dx with a 3/4 astrocytoma. The tumour is inoperable and the biopsy showed it to be a grade 2 but the imaging indicated it was a grade 3 so it was treated as a 3 but as he declined they decided it was a 4. He is doing very well at the moment. His treatment was biopsy,radiation with concurrent chemo followed by 6 months of 5/23 chemo. During his first 5/23 chemo he declined rapidly and it looked like the fight was lost so they tried him on Avastin and he responded very well. He did 13 months of Avastin and has been off any treatment for the last 14 weeks and all seems very stable at the moment. He will have his next mri in early July. He is 52, it is tough for you being so young. Happy to chat any time, send me a private message if you like. Hugs Terese.

Re: GBM Brain Tumors

Hammy — Tue, 22 May 2012 14:48:01 GMT

Hi Cathy My hubby was only diagnosed in Feb with a GBM grade 4, he finished his chemo/radiation last month and is due to start his first round of 5/23 chemo next week. We are having our post radiation MRI tomorrow see the oncologist etc later in the week, so very nervous at the moment. I agree with Terese you are very young and it must be tough for you, I think my hubby is too young to have this and he is 48. However, I have met another woman on here who has a 28yr old son with GBM. I also found a very good site on facebook of a young woman who is a 12 yr survivor which is so inspirational. Feel free to write anytime Take care Hammy

Re: GBM Brain Tumors

CatBye — Tue, 22 May 2012 22:38:11 GMT

Hi Guys, so sorry to hear about both of your husbands. I know in my experince its sometimes alot harder for the carer than the patient. My husband looks after me and does it well, but i know it affects him greatly. I have 2 young boys, 3 and 1. So life is quite busy and hectic. I love it that way although my energy levels are not so good, so i get tired easily. Terese, may i ask where your husbands tumor is? The reason i do ask, is because in my case i had my first operation done and they did not take out all of my tumor. They said it was to close to my speech and to dangerous. After my 6 weeks of radiation, i decided to go see Dr Charlie Teo, for a second opion. Within 2 days i was having another operation, in which Dr Teo removed all of my tumor without affecting me at all. I struggle somedays with having this diease, i try and remain positve for my family and just pray they find something (CURE EVEN) In the time i have left. 🙂

Re: GBM Brain Tumors

exhausted — Wed, 23 May 2012 13:01:29 GMT

Hi again, his tumour is in the motorband and he was told surgery would leave him paralysed on his right side, he is already affected on this side similiar to having had a stroke, it has been like this since he had the tonic clonic seizure that made us aware of the tumour in the first place. He was treated at St Vincents in Melbourne and then received a second opinion from Dr Kate Drummond at The Royal Melbourne, she is an expert in these tumours and she told us exactly the same thing. She said that any tumour can be removed but not all should be as the damaged caused was not worth it and in Stuarts case his quality of life would be severly affected. So not fair but what can you do but keep on keeping on. :)

Re: GBM Brain Tumors

Katya_von_Iori — Thu, 24 May 2012 09:57:08 GMT

Hi Cathy, I'm sorry to hear your story. My husband has a GBM Grade 4 as well. He was diagnosed March 2011. He's 34. We have 3 kids, Sergio,5; Charlotte,3; & Hugo,18mnths. He's had 3 surgeries (last one on Friday). He's had chemo and radio at The San Hospital. Its up and down, and is very tough on the family. But we're willing to fight it. Its hard for him to remain positive. And I find myself crying at the drop of the hat. Best wishes for your journey. Kate

Re: GBM Brain Tumors

femme — Sat, 26 May 2012 00:08:44 GMT

Good morning all, My name is Femme Hensen and the mother of Nicole who was diagnosed with a GBM grade 4 in Jan.2006.(age 34 then) Our world did fall apart, cut a long story short, after her initial diagnosis, surgery, rad. & chemo and a prognosis of survival 3/9 months,which we never accepted,she is doing great. For sure the road has been long. At present she is back at work fulltime and looking after her husband & son. SHe always said from day dot she is going to beat this......my girl is a massive inspiration to me and many others. Never give up hope. Cheers

Re: GBM Brain Tumors

peanutz — Sat, 26 May 2012 06:58:40 GMT

Hi Cathy, Sorry to see you in this situation. You are young so you have a better chance to fight this. I'm surprised you had 2 surgeries in the past 12 months. How many months after the 1st surgery when you had the 2nd one? My partner has GBM. After 7 months and 4 cycles of TMZ, we discovered that it grew back in early March. We were told that 2nd surgery is not recommended within this short period (7 mths after surgery). Anyway, it's a bit better at this stage, thanks to the trial drug that he's on. Still there are some concerns. I guess we just have to be strong and never give up. Cheers!

Re: GBM Brain Tumors

CatBye — Sun, 27 May 2012 03:58:14 GMT

Kate, Im so sorry to hear you are going through this as well. Is your husband doing ok. What has made him have 3 surgerys? regrowth? I hope you are ok. Dont be affraid to seek help if you need it. Counciling has really helped my husband, whom is great support for me. Peanutz, I had my first surgery on the 24th of june and my second 3 months latter on the 1st of september. I have been told it doesnt matter how many are done, so long as the patient is well enough? not sure on that though. How is he doing?

Re: GBM Brain Tumors

Rain_76 — Sun, 03 Jun 2012 02:26:41 GMT

HI there, I am new to this site, my husband has a GMB 4 also, after his operation on july 12 last year, his was the size of a closed fist, we were told treatment wouldn't help, but we had the 6 weeks chemo/radiation, then triple dose chemo tablets for 5 months, first scan in dec was good, scan in feb showed 4 tumors, they have sent us home, no more treatment, he is 57, but i suppose that the size of the first one was the problem. he is doing well, minus one set back a couple of weeks ago, minor stroke which caused a mayor seizure, but in true form has bounced back just great, go figure, take care everyone, hope you all make it.

Re: GBM Brain Tumors

Groenevelt68 — Fri, 08 Jun 2012 22:47:26 GMT

Hello, It has been awhile since I have been on the forum site. My husband Pieter passed away on the 6th June, almost 12 months to the day we were informed that he had GBM stage 4. I will continue to connect with the site, if any one wishes to chat.......... Carolien

Re: GBM Brain Tumors

peanutz — Fri, 08 Jun 2012 23:51:30 GMT

Hi Carolien, I'm so sorry for your loss, you have my deepest sympathy. How are you holding up? I just can't believe how it could happen so quick like this. We were talking about treatment options only a couple of months ago. Now I'm getting nervous about my partner :-S Take care

Re: GBM Brain Tumors

Groenevelt68 — Sat, 09 Jun 2012 00:48:44 GMT

Hello Peanutz, In March we had the MRI which show the small spot growing on the left temporal lobe was indeed a tumor (having tripled in size since the Jan MRI). The surgeons indicated that surgery was not an option, but we could do radiation. The specialist indicated that Pieter could lose abilities in area of communication. Within weeks Pieter lost the ability to read, write and verbally communicate. We were informed to put up the Dex (which was working, as we could see the improvements), but eventually the improvements stabilized then we noticed a decline (thinking it was the tumor). I watched Pieter slowly lose the ability to sit, stand and walk, called an ambulance to assist us to get to appointments. Once at the hospital (1st May), Pieter was placed in palliative care and we were giving three days. The doctors were only going to give Dex and morphine, all other meds removed. Then Pieter started to respond, it was found that there was an error in the meds and accidentally Pieter had no Dex for a few days (Dex was mixed up), which allowed for the swelling and tumor to have fun. Once Pieter was out of danger, we were transferred to local hospital for a week before being allowed to go home. At home Pieter had the ability to use the commode, and sit up, watch tv and occasionally chatted (not always making sense). Then Pieter started to decline, difficulty in standing up, then difficulty in sitting up, followed by difficulty in rolling/moving in bed (so every four hours I would move Pieter). This was then followed by difficulty in swallowing foods (meds were crushed and placed in thicken fluids), in the end even puréed fruit was to thick and had to be thinned down so Pieter could swallow. Pieter' breathing over the past two weeks had become erratic (normal, deep, shallow, mix of all three). On the night of the 5th, Pieter was going between shallow breathing and deep breathing, but just before 5am on the 6th June I woke (not that I got much sleep, listening to the breathing) due to a change in the breathing. Pieter was awake, have turned on his back so he could breath, so I got my youngest daughter up and we made Pieter comfortable (with the use of hospital bed we obtained through DVA) by placing him in a sitting position, which allowed the lungs more room to expand. My daughter and I sat with Pieter, talking to him, giving him cuddles, telling him it is okay. There was no pain, fear or panic in his eyes, his took his last breath at 6am. Pieter is finally at peace, the tumor can now do no more damage. For me:- I have been trying to keep myself busy (helps dull the pain and loss), when it is quiet then more often than not the tears flow. The tears come and go through out the day and night. Sleep is not easy to come by, the emptiness in both my heart and the house is felt keenly. I talk to him every day and have continued to write in the diary I started last year about our journey. Tidying up the kitchen (putting away all the meds and equipment), washing the bedding, all reminders. The funeral is on Wednesday 13th June. All the things that have to be done is amazing. For me personally, I have thought about what I will do, it changes a lot, I will have a short time where I can reflect over what my future holds, then I will have to find work and get back on the wheel of life (not sure whether I can do it in one go, or whether it will take many goes, to get back into the swing). My middle daughter is getting married in July (a point to aim for at this point in time). It is a huge head spinner, heart wrencher, life changing experience. I miss touching him, kissing him and listening to his voice. I know the pain will slowly go away but for now........ Thank you for your support.

Re: GBM Brain Tumors

femme — Sat, 09 Jun 2012 01:12:10 GMT

Our sincere condolences, may time give you and your family the strength you all need now and in the future. (in gedachten)if you are Dutch then that comment will make sense.

Re: GBM Brain Tumors

Hammy — Sat, 09 Jun 2012 02:42:27 GMT

Hi Carolien Sincere condolences to you and your family, my heart goes out to you all and will be sending you extra prayers on the 13th. The only good thing to hold on to is your hubby is no longer in any pain... May he rest in peace xoxo Hi Rain Hope your hubby is keeping well and you have had no more set backs,you are at present living through my fear and I pray when the time comes I will have the same strength as you.. To everyone else I hope you and your loved ones are all keeping well and you get moments to smell the roses!! My hubby is at this stage doing really well he starts on his next round of 5/23 the week after next. I am dreading our next MRI as his last one showed a little nodule (which may be the after effects of the radiation) I read a good quote on another site for GBM which was "Don't go there... till you have to!!" so I am trying to live my life with that mantra!! I ask for love and healing to be sent to each and everyone of us who are facing this and that we receive the strength to cope with what comes our way... Take care xoxox

Re: GBM Brain Tumors

Groenevelt68 — Sat, 09 Jun 2012 02:57:27 GMT

Hello Hammy, The mantra is correct. It is what followed throughout the process. Deal with today, because when you look to far ahead, it can be painful. My thoughts are with you all, even though I have lost my best friend, soul mate, husband to this cancer, I know that there is no more suffering for him, though now I deal with mine, with support from family and friends. I know and understand how many of you are feeling and will be here for you when you need someone to vent, chat, cry. Carolien

Re: GBM Brain Tumors

Rain_76 — Sun, 10 Jun 2012 16:12:27 GMT

Hi, Hope things are going well, we are doing fine at the moment, he is getting annoyed at little things, he doesn't say so but his leg jumps up and down when he is upset about something, and when you ask him he will say no he isn't, he has gotten a bit more confused with words, I asked him if he is ok, knowing that the 4 tumors are growing, and he said I think I had a tumor day the other day, whatever that means, I have noticed the front of his head is a little swollen, the Dex can only work so long, as the body gets ammune to it and then it doesn't do it's job, so my local doctor told me, he is good, he comes to the house every week and gave me his mobile number to ring if anything happens, I suppose that is the benefit of living in a small country town, Gary only asked me to promise one thing at the beginning of this and that is not to let him die in a hospital, and that will be a promise I keep, lucky I have our doctor on our side. I was told by our nerosugeon that you will never stop this, they were so brutal the whole time with me, my daughter was so shocked, I suppose that is why I am dealing with this alright, they gave me no hope from when he came out of the operation, arseholes, but Gary & I have known from day dot, doesn't make it any easier, to lose your soul mate, but the kids are older and the grandkids are 6 to 14 years old, so they will always remember him, but I hate this thing the GMB, never heard of the thing before this, but the oncologist said he has people who has survived more than 2 years so don't give up hope, stay strong, Lorraine.

Re: GBM Brain Tumors

CatBye — Mon, 11 Jun 2012 04:00:05 GMT

How is everyone going guys? I am feeling pretty good latley. I have another MRI in 2 weeks!! I have them every 3 months, it feels like thats how i live my life. In spans of 3 months... It gets hard sometimes, i try and stay positive.

Re: GBM Brain Tumors

peanutz — Mon, 11 Jun 2012 09:29:02 GMT

Hi Carolien, Thanks for this. I know not everyone is the same but this does give me an idea of what to expect. It must be incredibly hard to deal with all this. I don't want to imagine what my life will be like without my partner even though I try to be prepared for the worst that could be coming. BIG HUG for you!

Re: GBM Brain Tumors

rarsie — Mon, 30 Jul 2012 05:42:19 GMT

Hi Hammy, Just checking to see how hubby and you are doing, we go for my sons MRI on Friday coming rarsie