my friend has GBM IV

ing · New User Joined: 20 Aug 2005 Posts: 4

i am devestated that my best friend (44) has a glioblastima multiforme stage IV brain tumour. she had surgical removal (of around 90%) 6 months ago and radiation and chemo since. though she has completed this first round of chemo and radiation, her 'symptoms' seem to be getting worse. i have heard that that radiation/chemo have some of their worst side effects in the months after treatment - is this true? She has chronic and worsening fatigue, debilitation of her left side (the original deficit which seems to be getting worse), difficulty with concentration, etc -
She went into surgery and came out of it with her left side affected.

she is in good hands and will have another MRI tomorrow. she has been given cortisone recently to reduce swelling. my understadning is that her prognosis is not good.

in my search for some sanity in all this ...

are there GBM grade IV patients who survive much beyond a year? If so, what do they face as the side effects of repeat radiation and chemo? i have read of dementia which i find really frightening. any first hand experience or information would be appreciated.

this forum is a god send - it really helps to read of other people's journeys and their hopes and pain.
ingrid

artnut

My husband has GBM IV also and is undergoing radiation and chemo. His symptoms have worsened as well and I talked to the doctor. He said this is normal with the beginning of radiation treatments. It causes the brain to swell somewhat and that makes the symptoms worse but, according to him, for a short time. (only a couple weeks) Then, the symptoms should improve. My husband is extremely fatigued and at times gets weak enough to need a walker or wheelchair and that has just started since the beginning of the radiation. But like I said, the doc says this is a normal side effect and temporary. I've heard of GBM patients living beyond 2-3 years with surgery, but I don't know how long the survival rate is for sure. My husband's tumor is inoperable, so that shortens his time. They can shrink the tumor and try to keep it at a small size in order to expand his life expectancy and quality of life. I know there are so many new treatments being tried at this time in clinical trials so don't give up on your friend. There could be a new treatment at any time to beat this cancer. So Ingrid, stay strong for your friend and give her all the support you can. You'll both be in my prayers. Very Happy

ing · New User Joined: 20 Aug 2005 Posts: 4

thank you very much for your generous and supportive reply. i hope your husband is doing well. my friend had finished chemo and radiation, very fatigued, then had another MRI recently and it seems the cells have multiplied again, so she is back on chemo, and her left side is weakening (she went into surgery with a weakening left side, this has remained and is now worsening). she manages many things so well - she celebrated her 45th birthday last week. so there is much to be thankful for, inspired and impressed by. the challenges remain though. she is less and less mobile. her daughters are just 12 and 14. this is certainly the most painful experience i have ever had, watching her deterioration with such helplessness. i know she swings between hope and despair, faith and fear ... every moment with her feels precious, so i try to stay in the moment.
you seem so brave, thank you for your kindness - i will pray for you and your husband each day too
i hope there is some joy for you between the painful moments
take care
ing

artnut · Posted: Sun Aug 28, 2005 7:54 am Post subject: this helps me sometimes

Yes I can surely relate to those swings of emotions! Whenever it's too hard to take it day by day, sometimes, I just go hour by hour and then minute by minute if necessary and maybe that will help you too. This might sound weird, but here's what's helped me the most. Instead of thinking of my husband fighting for his life, I think of it this way....I got mad at the cancer and think of it as an enemy (which it truly is!) Your friend and my husband are fighting a war and they are the owners of their bodies. This cancer is an invader who is trying to take away what is rightfully theirs. The chemo, radiation, etc is the ammunition and now this enemy is fighting for ITS life and it's a war we have to be determined IT will lose and we will win. Please do keep us posted as to how things are going for you and as always, you'll be in my prayers as will your friend and her family. God bless you for being so strong for your friend. I know it's hard, but you'll make it and remember, you aren't alone. We're all here to help you through.

ing · New User Joined: 20 Aug 2005 Posts: 4

Thank you for that focus - it is good to visualise the chemo fighting the cancer cells and winning! I do struggle watching the side effects of the chemo in my friend though. the treatment seems so toxic (I suppose it has to be to take on GBM IV!). My friend is facing further chemo, although her specialists are weaning her off the cortisone. her tumour is definitely growing back, her oncologist is preferring chemo only for now, although further surgery and radiation may be considered again later.

she is an inspiration my friend. her spirit remains and always will, even though her body is taking a beating. i cannot spend too much time focussing on the road ahead, it's far too frightening. this is the gift she is giving me - to stay in the moment - to be aware of all my own blessings - to be so thankful for each day, for my children, my partner, my friends - to know there is an angel like you out there, so generously giving comfort and strength. do let me know how your husband is doing? and how are you managing? i am so inspired by your hope. please know that i will be here for you too when you need comfort, in your darker moments. thank you for your prayers. a friend and i have started a prayer circle and we will include you and your husband. Smile

ing · New User Joined: 20 Aug 2005 Posts: 4

hello artnut. i wonder how you are and how your husband is managing his journey with GBM. i feel sorry that i haev not stayed in touch for a few months, although you remain in my prayers.

My friend is deteriorating, although still hanging in there. No further chemo, it had stopped working, she is completely bedridden, with all that brings - bed sores, etc she is on high dose cortisone, and has many chirpy days and then many that are 'vegetative' where she seems 'gone'. she has had several strokes and seizures and the last MRI showed aggressive growth. she is having acupuncture which does seem to give some relief from her aches and pains. her mental state has been up and down - very happy to talk and then completely silent for days, then talking a lot but making v little sense at all to family and friends. i don't think she has too long to go, and she has said she would rather die now ... very sad, but i am grateful for time with her ...

please let me know how you are.

with love and prayers
ingrid

artnut · Posted: Wed Dec 28, 2005 9:30 am Post subject: Stay strong ing

I'm so sorry to hear your friend isn't doing well. Unfortunately, my husband lost his battle with GBM on October 9th. Christmas was very hard because it was his favorite time of the year. I think I would have lost my sanity if it hadn't been for the love of my family and friends helping me through it. My son put it the best way. He reminded me most people imagine what it would be like to see Jesus face to face. Fred was getting to celebrate Jesus' birth with him. I kept picturing his smile and that infectious laugh he always had and it helped a lot. We want to keep them with us forever as I'm sure you'd like to do with your friend. Would you rather see her continue her suffering as she's doing now or would you rather know she's got a healthy body once more in Heaven? You see, these are things that don't cross our minds when we're going through it at the time. I guess that's what they mean when they say that hindsight is 20/20. I'll continue to pray for you and your friend. She's got the strength through you right now, and that's what will get you both through this. Please keep me posted and if you ever need or want to talk, just drop me an email at alwaysdancin@yahoo.com and put something about cancer forums in the subject line. That way, I'll know it's from you. God bless.
Artnut

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