glioblastoma-new diagnosis

First off
Go to tone of the GREAT brain cancer hospitals!
6 Months?
There are 20 or more of these centers of excellence.
MD Anderson in Houston
Duke
UCLA
Cleveland Clinic...

Send all of your info to the one you choose after you do your homwork..send all the biopsy slides, MRI's everything.
They will get you in fast!
That's the first move at this point in my opinion..

I found out the hard way that these local docs won't tell you about the good places..They will tell you that their standard of care is the same or as good...And it can't be..

My hometown doc after doing emergencey surgery on my wife told us that "He cut away all the bad stuff, until he got to good stuff" and that's how technical that surgery was..
With a Starbucks coffee mug in his hand, he told us that the standard of care would be the same right there as anywhere else....
I was talked into taking my wife to one of the best and they removed the 80% of the tumor that the first guy couldn't get...

So, do a little research and go for a second opinion at one of the centers of excellence for brain tumors!!!!!!

SanDiegoPaul said:

Wen we went went to UCLA
When we went went to UCLA medical center, the doctor there told us he would have started me on steroids for two weeks before the biopsy in the hopes it would reduce swelling. My doctor here in San Diego however disagreed saying that reducing the swelling before the biopsy would "reduce the diagnostic yield". Immediately after the biopsy was done however he did put me on Decadron for two days then prednisone for five more.

I am done with those drugs now and awaiting for the staples to be removed from the biopsy incision. other than extreme anxiety periodically, I feel fine. I am very very glad that the biopsy did not introduce any more weakness or deficits on my left side.

By the way, when we went to UCLA the doctor we saw was Isaac Yang, a young doctor with an incredibly impressive resume for brain tumor surgery. Not only is he personable and knowledgeable, but he is genuinely nice to be around! After spending over an hour with us going over all of my MRIs and all the data from my hospital, he told his receptionist to refund half of our fee since he knew he could not operate and would not be seeing us again!

Even though the results/answers we got were not what we expected or wanted to hear, the experience with Dr. Yang and the whole UCLA medical center staff were terrifically positive.
I would recommend them again in a heartbeat.

extreme anxiety
Every time we saw a new doctor they all had a diffrent thought on what every it was. The decadron has its side effects,but helped so much here, the avastin also helps. We started that the second week of radiation. The doctor said that it would also help with the weakness. The weakness started one week into radiation. Dont know if it was radiation or tumor related. I talked it over with a Doctor I work with and she told me to get her on the decadron as quick as possible. Her Doctor wanted to wait , but we made a trip it the ER and that doctor started it.
How big are they saying your tumor is and where is it located ? Location has a lot to do with symtoms.

SanDiegoPaul said:

as of the last MRI, the
As of the last MRI, the tumor is 3 cm on one side of my head and about half of that across to the other side of the brain. It started deep inside of the motor strip area on the right side of my head; affecting my left arm, hand, and leg. Over the past six months, four MRIs have been taken each one showing the growth getting bigger... It now has spread to the other half (left side) of my brain, although very thankfully I have no weaknesses on the right side of my body.

mri
oH my gosh you have had 4 MRI's in 6 months and they just told you what it was.What did they think it was? I dont know what to say. I hope that you have a good support system. I only know the overwelming pain of being the sister of someone with GBM. It has been such a nightmare, I keep saying to my self wake ,come on wake up, this isnt happening...
I can say that when we started the treatment I felt a sence of relief, that we were starting to do something about this. The waiting to get started was the hardest.
Your appt next week is that with a general oncologist? Have you met with a radiation oncologist yet? We started radiation with in a few days of the oncology appt.
My sisters tumor is deep with in the white matter of the brain they said that if the tried to operate she wouldnt be able to care for her self any more and not be able to move the left side of her body. She didnt want that.

sorry for dx
Hi I hope you can defeat this beast and very sorry to hear of the dx. Of all the potential brain cancers it has to be the worst. The size these things can get to prior to detection is amazing. Radiation, at least you can't feel it, taste it but its there. My wife is scheduled in 3 weeks for a daily dose. The amount depends on her score at the time.

The standard treatment is surgery for debulking, followed with chemo using an alkylation agent (Tremador is one) or in co-junction with radiation directed at the tumor and a surrounding area to get any surrounding tumor cells than can turn up to 4 cm away. The prognosis is usually listed as terminal especially if the bulk of the mass cannot be removed. Even if successful it usually returns.

My wifes symtoms mirror yours, RHS vs LHS. She has had a shunt done as well as resectioning. The main immediate problem is the tumor causes a pressure buildup and can affect the brain functionality and by the sounds of it you are at the same stage my wife at about 2 weeks ago. Don't delay some sort of treatment.

Again, I never want to see anyone else ever go through this most dreadful disease. May you live a long time.

SanDiegoPaul said:

misdiagnosed! at frist...
Originally, my only complaint was a limp on my left side and that was when the first MRI was done. It showed a small lesion which was called a stroke at the time. I was given blood thinners and physical therapy for stroke symptoms. Very quickly however, the weakness of my left side turn into paralysis and it was very apparent how it was getting worse not better. That was why more MRIs were scheduled. But each one was different; all they knew was that this mass in my brain was growing but nobody knew what it was until last week's biopsy. This is the Kaiser Hospital system in San Diego...

kaiser
We have kaiser too...so many mistakes here. I work for a diffrent hospital I see it too...
Scary when you put your life in a Doctors hands hoping they know what they are doing. Go to the specialists, Kaiser has them you have to demand them !! Dont let them right you off. Dont settle for a general oncologist or at least have them have their
neuro oncologist be on your team...

Hi Paul - Well that's just a
Hi Paul - Well that's just a lousy diagnosis and I am so very sorry. My husband has very similar GBM diagnosed Sept 2010 - inoperable, near motor strip, on left side and effecting right side, speech, and some cognitive abilities. We were fortunate to be guided by friends to Swedish Medical Center in Seattle - to a center that specializes in deep brain tumors. Clyde had a biospy and two weeks later started radiation for 6 weeks and taking temodar (chemo) every day in pill form. The radiation started off as focused and then full brain radiation. Its so hard to tell what sysmptoms belong to what cause - tumor, radiation, chemo, anti-seizure meds, steroids? We heard the same story about steroids - first small town general oncologist said stay off until after surgery - specialist (neuro-oncologist John Henson and Neuro-surgeon Foltz) put clyde on 16 mg dexamethazone immediately. I wont talk much about the biopsy cause you've been that far - pretty wierd having a hole and staples in your head huh? Clyde has been very tired even before radiation - and the radiation and anti-seizure made it worse. Absolutely no pain to radiation. Luckily Clyde didn't mind having a full face mask that he had to wear to hold his head in the exact position. His skin tolerated the radiation very well - but it may be because I was diligent about using the alovera gel several times a day and using very gentle shampoo. He ended up getting a swollen ear and a bit of hearing loss, but it was temporary. I did need help at this stage as he was off-balanced and weak - I think that was the tumor. Clyde also tolerated the temodar very well. Almost no nausea. You hear sometimes about the cure being worse than the disease but this wasn't the case. Eventually it did effect how things tasted and caused loss of appetite - we struggle daily with getting him enough calories - he's gone from 220 to 179. Thank god he still likes milk - he drinks carnation instant breakfast with whole milk and another that is made into a shake with ice cream. The MRI after radiation and temodar still showed growth. So Clyde started on Avastin. This was like a miracle drug - all his tumor side effects improved immediately. There aren't many drug side effects. In fact, his tumor shrunk by 1/3rd. Clyde has been on it about 4 months now and its effectiveness I think is about done. Symptoms are returning - in fact he started back on steroids tonight. The dexamethozone was good for helping combate side effects from swelling, increased his appetite, and it balanaced out well with the anti-seizure pill with makes him tired and irritable (our doctor told us its called the divorse drug.} Clyde has good days and bad days - there has been no day that he has felt as good as before the diagnosis.We get our 2 month MRI next week and I expect progression. I certainly hope not but the signs aren't good. If that is the case, I'm so very thankful for the time the Avastin has given us - 4 months of memories we wouldn't have had otherwise. Celebrated his 61st birthday Friday with a huge bon fire and about 75 friends. One of the things I have found most helpful for us is the Caringbridge.com site where I continue to write about Clyde's and my mother's status (my mom has lymphoma and if the cure doesn't kill her she has a great prognosis). I've been in touch with hospice. I did this right after one night when everything went to **** and I had absolutely nothing prepared - I didn't want to get caught flatfooted again. We have amazing friends and family that have supported us in so many ways - its hard to take it all but I do, and as things progress we will continue to. Clyde wasn't eligible for clinical trials because he has some other "stuff" going on in the outter layers of his brain. We did meet one guy in our support group that was a 8 year survivor of GBM - so never give up hope!! Hope to hear more from you - Chris

SanDiegoPaul said:

no, we did not
Instead, we went to UCLA. But there was no mention of trials which I would have been very interested in! the oncologist we are seeing next week is going to be a neuro oncologist.

Thank you very much for the tip; at the beginning of next week I will research that Dr. Do you have his contact information to share?

how was the appt
Paul did you have your appt? how did it go?

MAJW said:

Any..
Any kind of herbal "stuff" is not recommended while undergoing chemo...nor are any type of supplements....or green tea....nothing to " rev" up your immune system...it can interfere with the effectiveness of the chemo drugs...

herbal 'stuff"
I do not agree with you. Some alternative therapies can help the patient for sure. Doctors from really all over the globe,gave my husband no more than a few weeks, but he is still here doing "fine". Walking, bicycling, cooking, painting, photographing, traveling and in a good humor. All this after that horrible diagnose which is over 1 year now. I give him a homeopathic treatment since the beginning. We do not know it that is what helps him, but then again, we will never be able to tell.

take care,
Hetty