Introducing myself and a question

Hello, my dad (73 yo) was dx'd with GBM IV this past June.
He had the surgery (supposedly, 80% of the tumor removed) and finished his initial round of radiation/chemo a month ago.

He's had all kinds of side effects of course but by far the hugest one has been that his ability to walk has gradually diminished to almost a non-existent level.

His oncologist wanted to wait until the first MRI after the treatment was completed to figure out what to do.
He doesn't think the not able to walk and the dizziness are the symptoms of the growing tumor as it's too early in the process he says but who knows.

What else could it be? The swelling in the brain after the radiation treatment? He was weaned off the steroids and both the oncologist and the radiologist are not in favor of going back on them for the fear of other major side effects.

Well, the MRI took place yesterday and i am on pins and needles today waiting to hear from the doctor.

I wanted to know if anybody had experienced this kind of effect from the treatment? We are not sure if this is even something reversible or not and the doctor can't say anything for sure.

I have just joined this board and haven't had the time to look through the posts yet or to familiarize myself with the other members of this community.

Just wanted to wish everybody and their families the best, I still feel like everything that's been happening in the past 3 months is somewhat surreal, can't believe it's my dad, trying to function and go to work but it certainly isn't easy.

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My father had a no. 3 a few years ago, had surgery,then 6 weeks of radiation and chemo. He was very weak after the radiation. My dad is doing great now but it took apx a year for him to get back to where he was not having side effects from the tx. It is so hard on the body. I am an only child and it is a horrible thing to go through for the patient and loved ones. I can only speak from our experience but dad got much much better and is doing great it just took a while.
Hope this helps

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Dear HopingforDad,

So sorry what you and your dad are going through.

Swelling after brain surgery increases and reaches a peak around 6 months after the event; sounds like your dad may be at or is approaching his max post-surgical swelling. In addition, radiation creates swelling and all that swelling will degrade physical and mental abilities. Typically, the side effects from the swelling are temporary and begin tapering off as the swelling decreases as healing from these events take over.

I wouldn't be overly invested in this first MRI. The image could be pretty cloudy and really is only intended to be a baseline.

Frankly, I would be less concerned about the effects of the normal swelling he is exhibiting now and much more concerned about the fact that 20% of the tumor remains. I would be encouraging the surgeon to go after that remaining bit, if at all possible. There are devices now for minimally invasive surgery like the Nico that can be used to not just remove the remaining tumor in "inoperable" locations, but can also remove the stem cells that caused the tumor in the first place.

All the best to you and your dad.

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Thanks very much Kiminarkansas! If you don't mind sharing, how old is your dad? Do you remember if he was on steroids right after the radiation treatment? What do you mean no. 3?

Well, I did talk to the oncologist yesterday and he said the MRI shows a lot of swelling and some necrosis but that it's typical after the treatment, they are not seeing the visible tumor but of course he says it will come back at some point. He is putting my dad on concurrent Avastin (every 2 weeks) and Temodar (5 days a month) in hopes of reducing the swelling.

He is also putting him on back on steroids but only short term and a very small does as he is very concerned with the side effects from the steroids (muscle weakness that my dad already has plenty of, diabetes complications, swelling in the legs he's had from it etc.)

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My 2 cents. My husband has had the same course. Twice the doctors weaned off the steroids and in a weeks time his walking deteriorated and he was so fatigued he couldn't get out of bed. His speech deteriorated he couldn't put together a sentence. They put him back on and in the morning he was a new man. I am going to be VERY opposed to fast weaning of steroids again. Each time they do it it seems to rob us of a week of quality time together. What are "long term" effects when you only have a year?!?

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Hi Janacoco, thank you very much for responding to my post. From what the surgeon told us, he removed everything he could without having to cause major neurological damage.

I haven't heard anything about the NICO surgery and we will definitely ask the surgeon about that option during the follow-up appointment next week. This surgeon, while highly praised for his brilliancy at what he does, seems to think that the second surgery is not a good option for someone of my dad's age and overall health condition so not sure how far we are going to get with him.

According to the oncologist, yesterday's MRI doesn't show the progression or any visible signs of the tumor but from what you are saying and from what I've read somewhere else, this first scan is not always that accurate.

Thank you again.

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HopingForDad, Ask a million questions. As anyone who has dealt with brain tumors knows, no one person responds to treatments/surgeries the same as another. My dad was diagnosed in 2009 had his first surgery then. After the surgery he went through the 6 weeks of radiation and chemo. He did not have another reoccurance until August of 2011. In January of this year he had another resection surgery followed by gamma knife surgery and chemo. In April he had a heart attack caused by a blood clot. Patients on chemo are at higher risk of blood clots from what we hear. In June he had another reoccurance. The doctor said that due to the location of the tumor we could not do antoher surgery so he started him on Avastin and Temodar. As the months have progressed his tumor has decreased due to the treatement but his symptoms have progressivly become worse. At the last doctors appointment his oncologist told us that the symptoms are caused by the treatment and that he will never get better and that the treatment could cause him to get worse. He asked us to bare with him through a few more treatments and that in October we could discuss what we would like to do next. Everything in me is screaming to stop the treatment. We have already lost so much of my dad in so little time. I can't imagine losing any more of him.

His Sypmtoms include:

Right Side Paralysis (cannot use right arm or leg, right side of face looks as if he has suffered a stroke)
Confusion
Loss of apetite
Loss of control of bowl and urination
and the list goes on and on...

In August he spent a month in a re-hab facility to help recover some of his physical and mental abilities but he only seemed to get worse while in there.

Best advice I can give is to ask questions and don't let doctors pacify you. Demand that they tell you everything about your dads care and treatment. Remind them that we are looking for QUALITY of life NOT QUANTITY! As hard as that is is to accept.

Side note, my dad is only 39 years old and his stuck in a wheel chair with 24 hour supervison.

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Lisashdd04, thank you very much for responding! Your dad is so young, I emphasize with you - so painful to watch them lose their ability to do the simplest things and there is not much we can do to help.

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My dad is 70, but other than the tumor he had removed he is as healthy as a 50 year old. A number three is in the grading of tumors. They go from one to four, four is the Glioblastoma.

Don't give up hope, there are a lot of success stories like my dad and new treatments are on the very near horizon. Everyone is different.

But even with the gbm I know of one I person who had his removed in 2006 and is doing fine with no recurrence,

We are all like snowflakes, we are all different so there is hope,
Take care and stay positive ( I know sometimes it is hard)


Take care

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Dear HopingForDad,

I strongly suggest that for anything else you think could help your dad, that you first do the research and get informed yourself, because you will be in for a fight. Doctors have gone to school for a very long time and can best favor the approach they first learned. That's normal. Any of us would do that.

The NICO, which enters the cranium using a very small portal (even could go through the nose if it provides the right access angle) and pushes aside healthy tissue to avoid the neurological damage would enable the surgeon to access portions of a tumor that have before now been considered "inoperable." If the doctor says that the rest is "inoperable" - make him finish that sentence - "by me."

For GBM patients, lopping off 80% is the same as you and me going out and removing the leaves and flowers of a dandelion. If you don't get it all and especially if you leave the root, that dandelion is likely to come back. What folks are saying on this board about hitting it with radiation/chemo and then no recurrence is true, but the cases of that for a Grade 4 are terribly few. I would go for the gusto, get informed and get a plan put together.

lillashdd04 has got it exactly right: ask a million questions. To which I add, do your own research. As hard as it is, become as informed as you possibly can become.

All the best.

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Since your surgeon told you "he removed everything he could without having to cause major neurological damage," that may well be the case. I work with computer aided navigation for brain tumors, and sometimes one can have perfect accuracy, and not be able to remove all of a tumor because a tumor has invaded a part of the brain that is controlling something vital like speech, or vision, or some other necessary function. In a case like that you could take out more of the tumor and ruin quality of life. Every major neurosurgery center in this country has options for minimally invasive brain surgery.
The Nico system from its description on their website relies on guidance by an endoscope and comparison with preoperative images. This is not always the best way to take out some tumors. Other tools can be tracked by laser camera and computer to show where the tip of the instrument is at every moment compared to the tumor and surrounding brain tissue. The newest gadget is not always the best for every surgery.

Your doctor I am sure would be glad to explain in more detail the questions raised here, as he has already thought of them I expect. It certainly helps to keep asking what is on your mind. I hope you and your dad have some good time left together, and the best of luck in treatment.

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Dlugose,

No doubt that every tumor is its own challenge and not all devices are appropriate to all tumors, but the life and wellbeing of HopingForDad's dad (and any patient reading this thread) is absolutely worth questioning if there is ANYTHING that can be used to improve the outcome and it is always useful to have concrete suggestions for what ANYTHING might be when probing alternatives with a doctor in order to stimulate ideas.

I have a couple of quotes about the Nico device that you might find interesting....

“It is rare to find a new neurosurgical device that really does all that it claims and truly advances our ability to remove tumors. The NICO Myriad appears to be one such device. Its small size makes it ideal for tumor resection in tight spaces such as during intraventricular surgery, expanded endonasal surgery or tumors of the petro-clival region. It provides me with excellent control, and the capacity to gently suction the tumor into the aperture and away from surrounding structures is unique. The opportunity to collect tissue for research is also uniquely valuable. It is incredibly easy to setup when compared to ultrasonic aspirators. I recently used the Myriad for an endonasal removal of a large craniopharyngioma that extended high into the third ventricle just behind the optic chiasm. The Myriad allowed me to reach and remove tumor that no other device or instrument could. I have had similar experiences with tentorial meningiomas and other tumors in tight working spaces. The net result has always been safer, more complete, and more rapid tumor removal. This device is a winner.”
Adam Mamelak, M.D.
Professor of Neurosurgery
Co-director, Pituitary Center, and Director of Minimally Invasive Intracranial Surgery
Cedars-Sinai Medical Center, Los Angeles, CA

"I have used the NICO Myriad device in the resection of gliomas and for my purposes it is a game-changer. It is the most versatile device to date for safe and complete resections of gliomas in any location and it is easy to use. It is also the most efficient means of consistently harvesting the largest yield of viable glioma cells for research purposes.”
David W. Andrews, M.D.
Professor and Vice Chairman
Department of Neurological Surgery
Thomas Jefferson University

Again, I agree with you about the challenge of each tumor and maybe the neurosurgeon in HopingForDad's case has indeed applied the limits of our current surgical knowledge, but you and I do not know that. I am sure you have read some cases on this board where those limits probably have not yet been achieved. If the odds-on outcome for HopingForDad's father can be changed, it is worth all our efforts to help turn over any and all rocks for answers.

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Thanks very much JanaCoco, I completely agree with you and will definitely ask the surgeon about this device. I also know that realistically speaking and based on his reputation as a brilliant surgeon, we might not hear what we'd like but knowing that we've tried everything we knew how to try is also very important.

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Hi HopingForDad,

I'm sorry to hear about your father's diagnosis. My father is 60 and was diagnosed with grade 3 in April. It came as a complete shock. The healthiest, most active man you would ever meet. So I can empathize with you. It's been a rough road. In April they did a resection and the surgeon said he got about 95 percent of the tumor. Not sure what that means or if it's even accurate. He had a seizure post op so was basically in a medically induced coma for days. He finally "woke up" and was impaired. He was in the hospital for about a week, then we took him to rehab. He wasn't my father. He was weak, barely talked, it was horrible! Finally he started to get a little better. I think most of it was the swelling. He weaned slowly from the steroids and he was getting back to himself. Back on the tennis courts (which he loved), but was still tired. He started radiation/chemo (temodar) for 6 weeks. Minimal side effects were noted. Phew! Then all of a sudden a few weeks after treatment he began to develop fevers. We admitted him to the hospital for 10 days. They did every test known to man, and nothing showed up. They did an MRI and told us that it looked fine. Then we go for a follow up with the medical oncologist and he says the disease is progressing. Now who do we believe?

That's the thing about MRI's. They are all open to interpretation. When a brain has been messed with, how can anyone tell what it is? Well a day later we get a call from the surgeon saying they want him to come in for a shunt. A shunt is a device they place into the brain and it has a catheter. The catheter drains the excess fluid from the brain into the abdominal cavity for it to be absorbed. This is all so that the fluid doesn't build up and cause any permanent brain damage. Before the shunt, he was off balance, had horrible short term memory issues, was at times unable to control his bladder, and he slept alot.

He went for his shunt surgery. Two surgeries in a matter of months. Luckily it went well. So they wanted to start him right away on his maintenance chemo (temodar). He took it. Did ok. Just had it his next cycle a few days ago and had a horrible reaction. So now he can't continue on Temodar. We have no choice but to start Avastin.

I just feel like there's so many complications. Things were going well. I never thought he'd get better after that first surgery. Now things are going down hill.

Just stay positive and have hope. I still believe this is a bump in the road and we will get over this! I agree with everyone..make sure you ask lots of questions...even if you feel like you're being a pain in the ass. It's your loved ones life!

Good luck to you! If you have any questions let me know...

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Hi HaVeHoPeAlWaYs, thank you so much for your reply! It all really feels like a roller coaster ride, doesn't it? I've noticed that I am afraid to slow down and think about everything that's been going on since my dad was dx'd because if I do, I just start crying and can't think of anything else.

I think I am also experiencing a lot of anger, not towards anyone in particular but towards life in general and how unfair it is. I guess it's normal. The facts that your dad is younger, had most of the tumor removed and it's a grade 3 and not 4 all speak in his favor. I wish him and you the best outcome possible.

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I hear you. I'm angry alot too. I wonder why this is happening to such an amazing caring person. One who was so healthy. Worked out all the time. Ate right. All so he could live a healthy and happy life. Now one complication after another? And on top of it he had a horrible wife who neglected him and now they are recently separated. It's hard. We can't leave him. I know I have to take care of him. I'm exhausted. And so is my brother. If you ever need to vent I'm here to listen. No one understands! All I can say is just stay on top of things. Don't take symptoms lightly. Better safe than sorry. U wish him the best of luck!! Will pray for him.

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