New GBM, AKA Glioblastoma multiforme patient what should we expect and what Questions should we be asking?

My 69 yr. old mother has just been diagnosed with this and had surgery on Oct. 28, 2008 with Dr. Lim at Johns Hopkins. She has her first oncology appointment Nov. 17, 2008. What should we be asking and expecting? Her surgeon wanted her to start treatment this week but apparently the DR. he wanted her to see is been too busy to see her and waited 8 business days to tell us, so we have another Dr. who has agreed to see her next week. Dr. Grossman.  

Does waiting a week or two even matter or are we worrying for nothing? It seemed from the surgeon that it mattered? My mother and I are so frustrating at all the waiting and not knowing what is ahead for her. 

My mom is very healthy and they got what "appeared" to be all the tumor, though we know there is no such thing with this type of cancer. So can anyone tell me what seems to work and what doesn't and what questions we should ask?  Any help would be so wonderful!

Sincerely,
Tami

hi my dad got diagnosed in late june and the did not have surgery till the middle of july .. i guess the dr. was on vacation... whatever! but where his tumor is located they could not get the whole thing only part for observation.. once again we had to wait for the results which took 3 weeks because they had to send it away to hopkins .. once we found out that is was an anaplastic astrocytoma we were shocked and very scared.. we really didn't know what to do.. we were very unhappy with the service we got at our local hospital (all the wasted time) so we decided to go to the james cancer center which was only about an hour away.. the neuro oncologist was very helpful .. he said that the amount of time we waited wasn't such a big deal because we caught it early and that they couldn't do radiation till the head healed about 2-3 weeks after surgery.. he went through radiation and the chemo pill .. and then had a follow up mri and had no change ... which their goal it so shrink it.. :( now he will be starting avastin which is through and iv everyother week and temodar 5 days every 28 days for a yr.. we are very hopeful this will work.. during the radiation he was very tired and with the steriod(for swelling) made his sugar really high so if she is on that you may have to check it.. also he had to get blood work every week..also a he developed a blood clot in his leg.. so if she gets any leg pain be cautious i guess it is common...the dr gave us tons of hand outs on all the topics and it covered alot.. just ask him/her what to expect and if they have any things you can read... hope i helped if you have anymore questions or just wish to talk just send me a message..

Hi to the dgt.of the GBM pt. we also were very panicky when our 54 yr. old sister seemed to be in a holding pattern to start chemo/radiation. i assume that since ou have an app. with the dr. the 17th that is the neuroncologist and dr. grossman would be the radiologist. soo at that app. they should be making the mask as they cal it that your mom will wear during radiatio to ensure  they direct the beams correctly and keep her head srtill. it took over a week  in our case to make and we were by that time making lots of calls. they do use a certain type of scientist to ensure accuracy but that time to make i believe is longer than usual. so make sure they will be nmaking the mold at that first app. DO NOT WORRY your timing will be ok ,you seem to be on track.it is a little scary being meas. for this mask that looks like hannibal lecter in silence of the lambs but it is imp. if she follows the same protocol as my sister she will start the temodar and the radiation on the same day. probably 6wks. of both radiation ( about 15min) mon-fri and the chemo every noc. my sister took the anti-nausea pill with the chemo(Zofran in her case)  you can also take a pill in the morning just to ward off the nausea. BUT it was very constipating for her so we added senekot and something called lactulose and it helped. we find it very useful to use a medication box for am/pm as with the decadron she might still be on chemo, maybe antiseizure meds etc. it is easy for me to fill every few days or week. though she could now do it we have fallen in to that pattern. though she never has had a blood clot it is a big thing for all to lookfor as noted in the last note. nay swelling redness even a little pain in her leg esp. calf should be reported.. her tumor will be studied for different enzymes etc. i don't understand it all but they will talk about propeties of it is she a candidate for a vzccine etc. it is overwhelming but make sure you ask if you don;t understand. that all said. my sister has had 3 CLEAR mri's since her inital surgery march 17th 08!!!! we are nervous evey day but try to focus on thepositive. she is now on maintenance chemo not sure how long probably a year at least. she has also started avastin  which is suppose to do something to starve the blood vessels to the tumor  site to prevent regrowth. though in the past i believe it was only used in regrowth of the tumor it is now being used more and more esp. if  someone has an unmethylated enzyme in their tumor as my sister does. you can ask her oncologist  about this at some point after the tissue has been analyzed.but that is nit an imm. concern as getting started is. AGAIN your timing is good. Your mom is in god health and rhe surgery went well. sorry for rambling and not always using cap. letters , my family hates that. good luck to you and everyone else. sister to the glue of our family!!

As others have already told you, standard time between surgery and start of radiation is about 3 weeks. The temodar that she'll take daily during rads has to be ordered (not carried by normal pharmacies) so make sure doc's office is on that. Zofran, also--the anti-nausea pill. They'll instruct her to take a zofran about a half hour before taking the temodar--and best to take both just before going to bed.

Rads are painless, but can be exhausting, particularly in combo with the temodar, but it is the best treatment available for gbm. Avastin is second line treatment when temodar either doesn't work or isn't well tolerated.

She'll be okay. Tell her to try not to get discouraged when she feels horrible toward the end of radiation treatments.  It's normal and it will get better. Be sure to talk to them about decadron (steroid) dosages during the treatment. I think many docs try to wean from the steroids too early, causing more pressure on the brain and the patient. Most importantly, stay positive and stay proactive. There are many of us doing well and living our lives with this beast.

Husband Jack, age 66, is now out 54 months after being told by his surgeon that he had six months.  Jack took the reins after surgery by remaining active and partnering with his docs and has "fired" and walked away from negative docs because ultimately the patient makes the choice so Jack continues to prevail because he takes responsibility and is aggressive in his continuing battle post-surgery for a GBM IV.  We all have different personalities/styles; but giving up one's power is not an option.  Jack continues to work as a consultant out of our home which is also a source of comfort along with our pets and I continue to be Jack's foremost support so support is invaluable and it should be very positive.  Rid yourself of negative "friends" and family because your team must be behind you 100%.  Good luck in your battle; trust your feelings and align yourself with the positive as the battle is a life-long one.

dear loyce and all, how long did your husband take the chemo? was it the temodar. and over the years has he added any other meds and have his mri;s been always good since surgery? thx for the input. good luck to all of us.

Jack endured Temador for 33 months, was active during this period as he is now.  He has nerve damage from the radiation and takes Neurontin for the nerve pain and endures the side effects from the drug which does provide some relief along with the vicodin. 

Jack has had his regularly scheduled MRIs over 54 months and all have been clear.

The radiation and temodar are the "standard of treatment" for GBM.  But, it is not a cure. It is important to be aggressive right now and get accepted into a Clinical Trial with vaccine or Avastin/CPT-11 or something else that you may find promising.  Great results at Duke University. The radiation and temodar only extend your life.  You need to seek a cure and do it NOW! Go on the Internet and find Clinical Trials, or contact the Brain Tumor Center at Duke. Don't wait for the tumor to grow back. Check with your insurance company to see if they cover Avastin.  It is not a chemo, but stops blood vessels from forming, thus stopping the growth of the cancer cells.  It is expensive, well- tolerated by most patients, and best used along with a chemo. It can cause blood clots or nose-bleeds.  My husband bled easily if he cut himself, but that was his only side effect. The chemos are much harder to take. My husband just finished the 6 months of Avastin/Cpt-11 and Temodar and he is now in remission. Good luck to you.  Use these days wisely.  My husband started radiation 28 days after surgery because he was on the Avastin program and the wound had to be completely healed. Get all dental work done now, too. It is a tough journey ahead. Stay positive!

My mom, 71, in great health, never on any meds, had a glioblastoma tumor removed from her right frontal lobe on Dec 12th. Doing very good for now. It was close to the front, about 4 1/2 cm with a lot of swelling, and they said they at least got the whole tumor. We are waiting to start chemo and radiation after the first of the year at Pittsburgh Presbysterian Hospital. I am glad to read that waiting for 3-4 weeks will not make too much of a difference because this time of year everybody has vacations. I do have a question about the Avastin. Did your husband start taking it before he started chemo and radiation? They have not spoke about her taking it but I am going to push about it as every survivor I have read about so far online has taken it. Any additional info you can give would be appreciated. Like did your husband have a complete resection at the beginning and do you think that makes a difference? I am so happy to hear about your husbands continued good health. Debbie