Glioblastoma

My husband 59 was diagnosised with a stage 4 glioblastoma. It was removed on 6/27 and the surgeon said it was near the surface and he got all he could see, he will start chemo and proton radiation on Monday. I've read a lot about these horrible intruders and I'm not ready to be without the love of my life. So far he has a very positive attitude and is doing well after the surgery but I expect that will change once the chemo starts. Any advice is appreciated.

Hi Kmarie. Sorry to hear about your husband's diagnosis. Welcome to the place where we speak glioblastoma fluently. The chemo probably won't be the disaster that one pictures when one hears the word "chemotherapy". Most people tolerate Temodar very well; complications can occur but are rare. The radiation will probably lead to hair loss around the area of the tumor. I hope that your husband is being treated by a neuro-oncologist rather than an ordinary oncologist. If not, you should probably see about getting one. They know more about this disease than ordinary oncologists do.

My husband was diagnosed with this monster 22 months ago.  I feel very blessed to still have him since his prognosis was one year to a year and 6 months.  I will say that this has been the hardest thing I have ever done in my life a thousand times over.  I have days that I just cry and can't seem to hold it together.  He is doing very well mentally, but has pretty much lost the use of his legs.  I am now learning how to transfer him from wheel chair to his favorite chair with a "hoyer lift".  It's very intimidating to say the least.  He has not had any chemo since march 2010, due to low platelet counts.  He did have chemo and radiation at the Brain Tumor Clinic at Johns Hopkins for 7 weeks.  Now we are on an Avastin infusion every other week.  I guess it's supposed to keep the tumor from growing.  That's another blessing in our life.... his tumor has so far shown no growth since the initial diagnosis in 2010.  Thank you God!!! Every time we have to have another MRI, I get so anxious and upset it's pretty pathetic. This man has been the love of my life and my rock for 38 years.  Yes, this is a terrible monster of a disease, and I have to ask for my Lord's help each and every day.

No recurrence in 22 months? That's great! Thank Avastin.

Thank you. His oncologist is not Neuro specific,. I will definitely look for one in our area. I hope he tolorates the temodar well. So far he is doing so good for which we are grateful. Thanks for the advice.

Wonderful. That is good news

I'm sorry to hear about your husband. So far caring for my husband has not been an issue, his only physical issue is the vision in his right eye. We feel very fortunate and blessed his was at the surface of his brain. All the best to you and your husband

Sorry to hear of your husbands diagnosis, I had my surgery for Glioblastoma on 7/17/2011. Once the incision was healed enough i had 30 radiation treatments while taking one 180mg pill of temodar each day.

 I then started taking two temodar pills(each 180mg) for 5 consecutive days followed by 23 days off. Avastin was started an given through an IV every two weeks. I think this is referred to as Stupp protocal. I am not sure of the dosage of Temodar that others take, i am curious though.

 I've never had a seizure, but they started me on dilantin after my surgery. I still take this dailey. I take a multivitamin and calcium once a day, otherwise i eat normally. I am very careful to not eat anything 4 or 5 hours prior to taking temodar, as this works best for me. The tumor that was left an visible on my MRIs did shrink and disappear with this routine. I've had six months of MRI's that look good.

 I hope the cancer cells that can't be seen are being killed by continuing on with my routine. I have a doctor's appt every two months at Duke and i always show up with the CD of my MRI that is less than one week old. my next appt is on aug 7. Hopefully i will get good news again. 

Hope your husband can keep up the positive attitude, i know it has helped me. I haven't been able to work or drive since the surgery, my vision is off just enough to make things complicated. I am able to see my large monitor, as i found it important to constantly strive to learn new things, it just makes me feel better.

Stay strong and remember others are wishing the both of you the very best.

Kmarie:

Welcome; there is a lot of information on this board that is particular to GBM.  I would repeat the advice that was already given re:get a neuro onc.When my husband was finished with the standard 6 months of Temodar, his medical oncologist said there was nothing more she could do.  So when he had his recurrence in 2006, we went to a neuro oncologist. The difference in care is like night and day.  My husband has had several different treatments since then, apparently none of them would have been available to him if he stayed with the first oncologist. He is still in pretty good health, very fatigued but gets around pretty well.  

FYI: the Temodar was very manageable for my husband. The only issue was constipation and that was easily treated with Sencot (otc). 

Good luck

Laurie V

www.caringbridge.org /visit/johnv

 

rickglio: I am not sure of the dosage of Temodar that others take, i am curious though.

The recommended dosage is the same for everyone and is based upon body surface area calculated by height and weight.  Comparing your prescription against someone else's is meaningless.  If you are prescribed 180mg and someone else is prescribed 360mg it simply means you are shorter/lighter than that other person.

Recommended dosage is 75mg/m2 during radiation treatment, 150mg/m2 for the first adjuvant treatment, and 200mg/m2 for all subsequent treatments.  Some people do have a problem tolerating the 200mg/m2 dosage and in those cases their doctor will usually drop them back to 150mg/m2.

There's nothing to stop a doctor from prescribing a different dosage but doing so is rare because it does not maintain "standard" care and best practices for GBM.