mother has gbm, new here

nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

Hi, I'm Nell. My mother was diagnoised with gbm grade 4 three days after her surgery July 25, 2007. (she is 62). She had gross total rescestion. Her next mri is Aug 23. This MRI is supposed to help the radiation oncologist make a "plan" for her upcoming radiation and chemo.
I am really curious as to what this MRI will show, Should I expect the results to be the tumor growing back already? (Three/four weeks after surgery) Has anyone ever requested to be part of the "plan" making when it comes to radiation for their loved one? In other words : if the MRI shows no significant tumor growth, would I be out of line to request tumor bed radiation only at this point? I am concernd about whole brain radiation for my mother. My mother is concerned about recieving radiation at all. With GBM, it seems everything happens so fast. Feels like there is not much time to make decisions because of how fast the tumor grows. This is sooo sad. I am going to be my mom's primary care taker and honored to do so. This seems to be a nice site for giving and recieving support. thanks.

brainman · Posted: Sun Aug 19, 2007 7:21 am Post subject: Re: mother has gbm, new here

Nell, I am so sad about your mother's diagnosis! My mother died because of a GBM grade IV almost 9 years ago. I too have a glioma but it was a grade III recurrence back in 2005. Whereas my mother's cancer was so extensive by the time of diagnosis and she opted for no treatment, my recurrence was found during an annual MRI and was able to be resected without much damage... I have right sided weakness in my arm and hands and lack of balance.

I too was my mother's primary care provider and would not trade those months together for anything in the world other than a cure for this devastation disease.

What will the MRI show? Well, it might show any of a number of things:

1. Recurrence or cancer that was missed during surgery
2. Blood accumulation at the surgical site
3. Scarring secondary to the surgery
4. Necrotic tissue

and I am sure I have forgotten some things. However, mostly, at this point, it will help the radiologist make plans in order to minimize the damage to healthy brain cells. Are they planning to do stereo-tactic radiation (targeted radiation based on the MRI results)? If not, get your mother to a medical center that is equipped for that.

As for being involved in her medical care, definitely YES!!! She will need you as a second set of ears and eyes, as her health care advocate, and to some degree as a second voice in her decisions. Make sure she officially names you as her health-care surrogate made official either by a Living Will or a Durable Power of Attorney. Most states have standard Living Will forms that just need to be filled out and signed by your mother. Some states require witnesses while others require Living Wills to be notarised. Most state will accept either but you should read carefully what the document says. Do this now while your mother can still voice to you her wishes concerning respirator and artificial feeding plus other "extraordinary means of life support." Make a number of copies and fill the original somewhere safe. Most hospitals will want to at least see and make their own copy of the original on each admission.

It is a good idea to start a medical journal for your mother listing her doctors and their phone numbers and all of her medications, including any nutritional supplements she takes on a regular basis.

I feel like I have may be overwhelming you with information. It is just that I have been there myself and with my mother. I know how difficult a time you are facing. There is not much time so make the most of it. My prayers and thoughts are with you and your mother.
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
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brainman · Posted: Mon Aug 20, 2007 1:57 am Post subject: Re: mother has gbm, new here

Hi Nell, just to make a long reply even longer, I have not heard of radiation seeds being placed in the brain. I have heard of that form of therapy, just not for the brain.

Stereotactic radiation is guided by an MRI or sometimes a CT to send the radiation from various directions toward the defined target. This way they can uses lower dosages of radiation and only where it beams cross get the full amount of radiation. My hair did fall out in the several areas where the radiation went in. Other than that, I had no side effects. Stereotactic radiation is also used by a gamma knife and other forms of radiation therapies.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tamayles · Posted: Mon Aug 20, 2007 4:44 am Post subject: Re: mother has gbm, new here

Hi Nell

My dad (age 59) was diagnoised with GBM Grade 4 in June 2007. It happened all so suddenly, one minute he was busy working, then he fell ill one weekend which we thought was just a migraine. When he couldn't shake the headache he finally went to the dr and then he was whisked away to the city and in hospital for 2 weeks where he had surgery to remove 80% of the tumor and was given the diagnosis.

He is currently having his treatment. He is starting his 3rd out of 6 weeks of radiothery and chemotherapy tomorrow. At present he is doing very well, he isn't ill at this stage from the treatment, but they said it may come towards the end as the accumalitve effects kick in. But then he may not get ill at all.

The horrible thing about this hideous disease is all the unknowns. Everyone is different, and will react to treatments differently, and have different outcomes. He isn't due to have his next MRI until early Oct, then we should know how effective the treatment has or has not been.

It is just the biggest kick in the guts. I'm still struggling to get my head around it all, and coming here has been good.

My thoughts are with you and your mum, I know exactly what you are going through and taking everything one day at a time is the only way I have found to cope with this all. It's a big game of wait and see!!

Tam

nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

Hi Brianman,
Your info on radiation is VERY helpful to me. I am trying to grasp all the terms that are new to me. It was explained to me by my mom's doc. that she would be recieving "external beam radiation" over a 6 week period. Her doc said that there would be very little side effects. Said she would lose her hair, be fatigued and have some redness at radiation site. None of that sounded too bad to my mom or me. However, looking into long term effects of radiation didn't sound so good. If I am understanding the info correctly, sever side effects could happen within a month after radiation, especially whole brain radiation, for a patient her age. That is the scarry part.
I was very relieved to hear that you have suffered no long term effects of your radiation.

Mom's MRI is scheduled for Thursday. We are anxious to see the results.
BEing able to "bounce some ideas around" in this forum is very helpful to me. After explaining issues with you, I feel more capable of speaking with her cancer team.
Thanks again,
Nell

nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

Hi Tam

Very sorry to hear about your dad. Seems like a common thread to GBM is the "sudden" part. Our loved ones are okay one minute, then not the next. You barely have time to take in the news of the GBM when you are faced with many medical decisions. For us, on the day we found out Mom had a brain tumor, Mom wasn't sure she wanted the surgery and asked family to help her make the decision to do so. We had less than twelve hours to decide. It was awful. She seems glad she had the surgery so we got through the first part of this okay.
Your Dad and my Mom are so brave!
My prayers to you and your Dad. Oct. seems such a short time away for your Dad's MRI results and at the same time seems like a "forever" wait.
Hang in there with the wait and see game. And, your right, coming here is good.
Nell

Roxanne Sparks · Posted: Mon Aug 20, 2007 3:30 pm Post subject: Re: mother has gbm, new here

Hello Nell,

You will find the most knowledgable person on this forum to be Brainman. My Mom was diagnosed late November 2006 - Grade IV inoperable GBM - and passed away July 15th, 2007. He was so helpful in that he knows all the right questions to ask and what to expect through your journey with this beast. You're fortunate that surgery was permittable. My Mom had 6 weeks of radiation and tried chemo, but it destroyed her body. She only did 4 weeks of Temodar (chemo pill) before she was taken off it. She couldn't ever resume chemo because her blood counts got so low, they never bounced back. I will warn you, though, that the steroids are really the double edged sword in this whole ordeal. They destroyed my Mom's bones and she became wheelchair ridden by early March and bed ridden by April. I'm an only child and my Father passed away in 2003 from stomach and liver cancer (tobacco related). You will get frustrated, fatigued, overwhelmed and heartbroken, but you will always cherish being your parents caregiver.
Good luck to you and God Bless,
Roxanne

justAdad · New User Joined: 21 Aug 2007 Posts: 8

Hi nell,

It sounds like your mother will be getting IMRT (intensity modulated radiation therapy). Fairly small doses of x-Ray radiation are shot from various angles to the tumor bed location. The PLAN is made to limit dosage to important sites such as eyes, etc but to maximize dosage in the target location (tumor bed). Generally the PLAN also includes covering a distance of 20mm from the tumor bed. This is why they need CTs and MRI's to understand the 3-D shape and location of the tumor bed.

The machine can shoot from various angles, and the beam shape is completely adjustable. They will create a mask which fits her face and basically clamps her down on the table in the same fixed position each and every treatment. They will align the machine with a laser, leave the room and the table and the machine will move in a preprogramed way to line up and make each shot. Most PLANs will include something like 3-6 beam angles.

The treatment takes 15-20 minutes per day and she will loose her hair at the entry locations of each beam around week 3-4. It will grow back.

Concurrently, she will likely be taking Temodar (and Zofran to combat nausea) caused by the Temodar. The overall effect of the radiation and Temodar will be increasing fatique, but it is not overwhelming. She might not even suffer from nausea from the Temodar...many people don't.

Finally, she may require steriods to keep brain swelling to a minimum. Maybe not, but it is a possibility.

After this treatment program, she will take about 3 weeks off and then get new scans. Then another treatment plan will be created for at least a year. This will likely involve higher doses of Temodar for likely 5 days out of 28, along with whatever else may be prescribed. Temodar generally does not cause hairloss...mostly nausea and this treatment dosage will take some getting used too. She will get scanned regularly (every 8-12 weeks) for a while.

As she responds well to the treatments and there are good signs of improvement, and there will be, some kind of reduced treatments and longer intervals between scans will occur.

Help her keep her spirits up and hopefully you have someone to keep your spirits up as well. Good luck!

jenugl · Posted: Fri Aug 24, 2007 6:07 pm Post subject: Re: mother has gbm, new here

Hi Nell, Im sorry to hear your Mother was diagnosed withGBMIV. By now your Mother would have had her MRI and hopefully you would have been informed on what choice of treatments are required / available. It is as you say - so overwhelming (I had never even heard of this disease before my partner was diagnosed - so there is a lot to learn and take in as well as all the emotional things you are going through). As explained by everyones previous posts the normal intention of this MRI is to help set up marking guides (usually on a mask) so that they know where to aim the treatment. My partner had the same plan made - he also had total resection of his tumour and then radio/temodal for 6 weeks and then 4 weeks rest and then 6 mths of temodal (1 week on 3 weeks rest), his MRIs have been clear since (except for the last 2 which show a slight enhancement). They don't know what this is as yet. He is only 44. I hope you have a better understanding of treatments that will be coming and I know that people on this forum have a great understanding of treatments etc and can help you alot (they have with me). Please let us know how your Mother is going and how you are coping with it all. My thoughts are with you and your family. Love to all. Jen.

In · Posted: Fri Aug 24, 2007 6:11 pm Post subject: Re: mother has gbm, new here

I hope all is going well as can be with your mother and family.

Thoughts are with you- keep in touch

Inica
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Thinking of you Inica

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nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

Dear Justadad,
Thank you for your explaination of my mom's radiation treatment. That is exactly the type of radiation that she will be recieving.
In my mom's case, however, she will only recieve 6 weeks of radiation/ 7-8 weeks Temador. Cancer team said that she will not recieve any more than that. Also, that she will not have another surgery when tumor grows back, or for any reason (such as narcosis). Her age seems to be the factor in that decision, she is 62.
Thank you again for your response.
I read your son is attending his first year grad school. Wow, how wonderful!
Nell

justAdad · New User Joined: 21 Aug 2007 Posts: 8

Hi nell,
The 6 weeks of radiation treatment is currently normal. The maximum dosage they will give is 60 gray. This will be divided basically evenly for the number of treatments or somthing like 2 gray per day. The 7-8 weeks of Temodar is also normal during the course of radiation. After all of this I suspect they will look closely on how to continue.

Are the treatments going to be close enough that she can stay at home? Having a comfortable place to stay will be more and more important as the treatments drag on and she gets tired.

When does she start? We'll be sending all our positive enery and prayers her way and your way.

nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

Hi All and thank you for your kind, informative and encouraging replies.

Mom has "dress rehersal" radiation Thursday aug. 29th, and then first radiation dose next Tuesday.

I am staying with my mom in her condo. There are 7 steps to get to her condo and they are getting more and more difficult for her to climb. Darn steps!
She is happier here in her own home, of course. So we will stay as long as we can. It is the first property she has ever owned. She raised 4 daughters by herself and this was the first time she could save some money to buy her own place. She bought the condo only 8 months ago.
Some of her neighbors have offered to help me get her up the steps after each radiation treatment. Very kind of them! So we can stay here for a while.
Thanks again for all of your stories and replies. Please know, my heart goes out to everyone dealing with this.
I'll keep you updated.
Nell

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