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grade 4 glioma

micgrace
Posts: 131
Joined: May 2011

Hi all. I am new here and this is a club I did not want to join, but my wife is diagnosed with stage 3 glioma and is to shortly receive surgery to tame the beast a bit prior to chemo and radiation. I don't know how long she may have, but she is extremely healthy in all other ways and is a relatively young 42. If anyone has survived past 2 years and gained back use of cognitive functions and motor skills (its in the left parietal lobe and crosses into the right hemisphere) I would love to hear from you. I need a bit of cheering up.

It is estimated about 70% can be removed. Whether that is a good amount, I have no idea. I also have a BSc in chemistry and ironically was conducting research on thermal cancer treatment materials. ie fire laser or radiation at cancer cells that have have adsorbed gold coated nanoparticles. I might add the results are spectacular but its very early days and no use to my wife.

I edited the title. The dx has been "upgraded" to a IV. a glioblastoma. (downgraded would be much better) It appears the majority was removed as it was clearly defined, but pressing into the ventral. She has deterioated somewhat, but that is par for the course.

micgrace
Posts: 131
Joined: May 2011

Hi all. My wife is scheduled for a resection on the tumor tomorrow. We are all waiting for some positive news that all can be OK. So I am on tenterhooks now.

Beckymarie
Posts: 358
Joined: Aug 2009

I wish you the best of luck and hope the news is positivie. This is a very difficult disease. You and your wife are in my thoughts.

hope4GBM
Posts: 7
Joined: May 2011

My husband is 7 months out of GBM-4. My prayers and thoughts go out to you and your wife.
It's tough, I'm struggling each day. I don't know either where this will go but the love that we have will get us through whatever tomorrow will bring. Iam blessed to have found such a wonderful person to share my life with(married 35 years). We just do the best we can and learn as much as possible about all of this. Our future is in God's hands - it always has been.
Hang in there- take care of yourself!

sadinholland
Posts: 229
Joined: Apr 2011

My husband had surgery on July 16,2010 and is doing well. My prayers go out to you and your family.

micgrace
Posts: 131
Joined: May 2011

Hi all the resection has been done. She woke up and was alert and was able to move her right side rather well and could recognise things better than before the op. No further info is available at this time. It was over 6 hours long. A long time to wait.

micgrace
Posts: 131
Joined: May 2011

She had a bad time of post op recovery and had to be knocked out to stay put, ie was bashing her head against the bed, but does appear she is more alert today. Of course she needs to regain her strength for the oncoming radiation and chemo. Again I wouldn't wish this on my worst enemy.

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

Hope things are going better each day for your wife. This is the worst. Everyday I wake up and for second forget. And then the day starts again. I have never felt so sad and lost in my life. My sister is my best friend with this thinin her brain that has changed our lives forever.Holding onto the littlest thread of hope in this. Watching our father age by years in a few short months.
My sister is in the hospital from sepsis. Someone didnt clean the port well enough and causes a big time infection. Today the counts are up she is no longer neutropenic. Hoping that she will be able to go home in a day or two. And start the temador up again on time or close to it anyway. Praying that this monster in her brain has been killed off by the treatments she had. Thank you for all of you that share your lifes and stories on here, to the people that really and truely understand how we feel. People mean well but they really dont understand...

RLR
Posts: 36
Joined: Sep 2009

Good luck with the surgery. I had sergery Jan 13 of 2009 and have been doing relitivily well ever since that time. I had the usual 6 weeks radiation and have been on Temadar every since. I can drive, walk and do just about everything I could before. Fatigue and memory loss are a big problem but I can live with that.
Have Faith and don't give up Hope and stay positive
God Bless you

gapwash
Posts: 3
Joined: Apr 2011

A friend of my sister's had a glioma, he had his 2nd surgery at Duke (http://www.cancer.duke.edu/btc/modules/ClinicalTrials4/index.php?id=2) with Dr. Friedman http://www.youtube.com/watch?v=n1Z8yMxSf5E&feature=related I hope this helps. I have been doing all type of research to try to help them... there is hope! The latest thing I found was this French doctor... his name is Dr. David Servan-Schreiber, I recommend you watch the whole video, I bought the book, I am impressed... http://www.youtube.com/watch?v=XaDt3AJQ98c&feature=related

We have more control than we know!

I hope some of this information cheers you up!

micgrace
Posts: 131
Joined: May 2011

My wife is ready to be moved from icu to a normal ward. She can communicate now. Now to regain her strength for the chemo and radiation treatments. The part I hate most about this disease it seemingly comes from nowhere, it almost incurable and so fast growing. And it attacks the brain. The last thing I expected is to have to go through this nightmare. Those who haven't experienced it will never know.

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

Glad to here your wife is doing better. I know it doesnt help, but I know your nightmare I have been stuck in it since Feb 22. I just want to WAKE UP!!!

micgrace
Posts: 131
Joined: May 2011

I have been formed by a round about way the person responsible for chemo did the rounds of the ward this morning. I suspect the chemo isn't far off. That I will see about tomorrow.

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

Hope everything goes well. What kind of chemo is she going to get?

micgrace
Posts: 131
Joined: May 2011

Not sure of the chemo. However tonight she is to have a shunt placed as the pressure in her brain refuses to reduce as the ventral region was closed off by the tumor. Her condition is now listed as terminal, which I sincerely hope such is not the case. It is a real rollercoaster ride with one thing after the other.

I spoke with the oncologist and they do wish to start rad in about 2-3 weeks depending on her score which isn't great at the moment.

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

so sorry, praying for her...

micgrace
Posts: 131
Joined: May 2011

Hi all the shunt worked well. The fluid draining away is clear with little trace of protein but is fairly thick. No evidence of uncontrolled growth from the tumor, which is significant. She was suffering numerous seizures prior to the op, but none after. Hopefully have better news to report soon. I

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

So good to hear...

micgrace
Posts: 131
Joined: May 2011

Hi all, seen my wife. Talking very little but very aware. She had another MRI and everything is working. Even her rhs arm which was completely dead can move. However she is running quite a temp and that is of concern at the moment.

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

Hope they are watching her Lactic acid its a lab test to check for sepsis. Ask them if they ran one. If they have not ask them to check it. Just went through sepsis with my sister and Im a nurse. How high is the temp?

micgrace
Posts: 131
Joined: May 2011

That has been checked out by bloods and they also included an xray for congestion as the cause hasn't been established. The temp was a high 38.9 but has dropped down to 38 since and appears to be subsiding so it is suspected to be a virus of which there are many running around at the moment. Today? I will find out soon.

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

Just wondering how your wife is doing?

micgrace
Posts: 131
Joined: May 2011

Hi my wifes' cognitive functions are returning. The movement in her right side remains very restricted but there appears enough for physio to work on. She is booked in for her first appointment with the oncologist tomorrow. So I will see what they are proposing for treatment. I think it will be the standard radiation plus a margin for now plus chemo. Apparently almost the entire bulk of the tumor was removed.

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

glad to here she is recovery well. Hope your appt goes good tomorrow...

micgrace
Posts: 131
Joined: May 2011

Hi all, spent most of the day with my wife. I have heaps of problems with a very interfering mother in law who would very much like to transfer her daughter to her home town and has used every means she can devise to interfere. The home town has no treatment options at all. We have never communicated with each other so I am not about to start now.

My sister got busted calling her every name under the sun out of range by her. She is not wanted or liked. My own view is let the mother in who has a very poisonous effect on her daughter for a short period and not say anything but be deliberately abrasive and uncommunicative with her and do anything to encourage her to move on. Luckily she is to say it kindly, not very bright although my wife knows exactly what I do to get her to move on and plays along.

Apart from my intense dislike of her contact with her daughter seems to caste a very negative shadow over my wife who just agrees with them no matter what (out of sight of them that changes very fast to laughter, smiles and general frivolity). It was her coping mechanism to come to terms with this poisonous family. Just shut up and let them say whatever nonsense comes out.

Apart from that, rad will begin about 2 weeks from now along with chemo after the surgery (both lots) has healed up significantly. This has brought to the surface the poisonous relationship my wife has with her mum that everyone has been avoiding for years.

madisonmuzz
Posts: 13
Joined: Apr 2011

My husband of 23 years was diagnosed with a grade 4 GBM December 27, 2010. He had surgery to remove the tumor on Dec 28, 2010. The recovery period was slow, but he is doing better. He went through 30 radiation treatments and Temodar (oral chemo). They had to stop the Temodar due to chemotoxicity, he was very sick.....very scary to watch. We have started Avastin and Iritetucan. Both are IV chemotherapy. Scott is doing very well on these 2 chemos. He has regained his taste and his appetite. He is getting a little stronger each day.

I wish you well with your wife. The person that said this GBM is a rollercoaster of emotion, hit the nail sqaure on the head. It has been a nightmare, I would just like to wake up from. To make matters worse, 6 weeks after my husband had his surgery, my dad passed away unexpectedly from a blood clot in his leg. Devistating.....He was the one person that knew how to keep me positive!!!!

Scott and I take each day seperately and pray for the best. He continues to keep a positive attitude which helps me to keep one also.

I will be watching the progress of your wife. I will keep you all in my thoughts and prayers......It is in god's hands. Keep the faith and live each day to the fullest.

Beckymarie
Posts: 358
Joined: Aug 2009

Dealing with brain cancer is a unique experience and I don't mean that in a good sense. It is a day-to-day and sometimes a hour-to-hour roller coaster ride. Having gone through this horrible cancer with my husband, I think of you all always and keep you in my thoughts.
Becky

micgrace
Posts: 131
Joined: May 2011

This cancer feels like a nightmare that one day I will just wake up from to find out its just a dream. Its also a real roller coaster ride with 2 steps forward and one back. At least those steps appear to be going in the right direction..... >>

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