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glioblastoma-new diagnosis

SanDiegoPaul
Posts: 25
Joined: May 2011

I was just diagnosed with level IV glioblastoma this week. It has taken the hospital six months to get this diagnosis; it scares me that the whole time they were testing me this thing has been growing in my head. It is too deep down within the motor strip to be operated on and we have been searching for alternate treatments for months now.

It is now the tail end of May, 2011, and they have been doing tests on me since December! Finally last week they did a biopsy and the dismal results are certainly not were hoping for.

I'm drinking herbal tea concoction prescribed for me by a Grand Master in ancient Chinese medicine. It tastes and smells very foul, but I'm assured it is designed to break up the mass in my brain and flush it through the bloodstream by using an increased blood flow to the brain. I had been drinking this tea for two weeks, and no new symptoms have occurred- nor have any of my old symptoms gotten worse.

Of course nobody knows where this will take us. For right now, I can still walk although I need to use a quad cane. My left hand is paralyzed and my left arm will barely move. I wish I had started drinking this Chinese tea months ago, when they were still trying to figure out what was wrong with me.

My first appointment with oncology is next week. Can somebody please tell me what to expect from radiation and chemo? I am sure every case is different but nobody in my family has ever had this type of treatment and I would like to know what I can expect.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

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
Posts: 25
Joined: May 2011

thank you for the feedback! we did in fact go to UCLA and met some very nice people there. The end result however, was that they agreed with my insurance provider that the cancer is inoperable.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im so sorry that you too are on this road...I started on this ride with my sister in Feb 2011. She went to the Doctor with some strange dizziness in Dec 2010. She just blew it off as nothing. Until she passed out in Feb and I made her go to the ER. She wanted to wait to the next day and see her Doctor, thank God she listened to me.
I know the shock. Once you get the diagnosis and the biopsy it feels like forever to get started. The best thing I think is to get someone that is a neuro oncologist, they will try to set you up with a general oncologist. We needed to get someone that knew about all the latest greatest. We saw one once they still keep putting us back with a general guy. We fired a couple of doctors...Talk to three radiation oncologist before getting the right one.
With your weakness Im surprised that they didnt start you on decadron to decrease the swelling to decrease the symtoms. My sister started having left hand weakness and the left side of her mouth wasnt working and with the decadron in about 2 weeks she got it back. The swelling causes the weakness.
Radiation was fine for us, temador and avastin is the way we when. Couldnt do surgery. Anyway we ran into our first problem with the port, some person didnt clean it well and she went septic...Well we are working on that now and have not had the first after treatment MRI.
You didnt say how big or where your GBM is. I wish you the very best. Try to remain positive they are going to start talking about some not fun stuff in the days ahead. There are miracles out there...Believe...and those numbers they give you are just numbers everyone is diffrent.

SanDiegoPaul
Posts: 25
Joined: May 2011

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.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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
Posts: 25
Joined: May 2011

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.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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.

SanDiegoPaul
Posts: 25
Joined: May 2011

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...

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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...

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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.

micgrace
Posts: 131
Joined: May 2011

Hi My wifes' GBM was very deep as well. Except she had already lost the movement on the RHS and some loss of speech as well. In her case surgery to remove the bulk was the best option as she wasn't going to lose the functionality as it was already lost.

She is stable now and each physio session develops the limited range of movement she has left a bit more. It was very definitely touch and go, but with 99% + removed the chemo and radiation should work well and even achieve a cure (dare I hope for that??). Whatever way one looks at it a diagnosis of GBM is perhaps the nastiest dx one could get. Its a real nightmare I hope I can wake up from it. Not forgetting what it must be like for my wife and others who actually have this dreadful disease.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

do you mind me asking where was the GMB ? How big was it ?

micgrace
Posts: 131
Joined: May 2011

Hi The GBM was pressing into the left ventricle from the left parietal lobe, approximately tennis ball size. I would have thought the symptoms would have showed well before that size but they didn't.

micgrace
Posts: 131
Joined: May 2011

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.

johngiustino
Posts: 26
Joined: Apr 2011

Based on your login, I assume you live in San Diego - have you gotten a consultation at UCSD? I recently saw Dr. Kesari - there may be some trials that you are eligible for considering your newly diagnosed status. It is something I learned too late because I was with a general oncologist, but you may have a very limited amount of time to enroll in a clinical trial. Once you are not newly diagnosed and enter into standard therapy, you may lose eligibility. UCSD has a trial with the Novocure device which has shown some great promise in shrinking tumors in a phase I clinical trial. Also, Dr. Kesari is very into genetic testing of your tumor to place you in the correct clinical trial.

Good luck,
JG

SanDiegoPaul
Posts: 25
Joined: May 2011

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?

johngiustino
Posts: 26
Joined: Apr 2011

Here is the link to the brain tumor unit at UCSD:

http://cancer.ucsd.edu/care-centers/brain-tumor/

and Dr. Kesari

http://cancer.ucsd.edu/research-training/people/Pages/summary-database.aspx?name=skesari

I just met him but UCSD is the most local brain tumor clinical research centers. He advocates a more personalized approach to treating brain tumors.

Good luck,
JG

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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

SanDiegoPaul
Posts: 25
Joined: May 2011

the neuro-oncologist has prescribed six weeks chemo and radiation... With no prognosis for a cure, just that they may extend life for a few weeks to months. My goal is to accept both Eastern medicine practices and the Western medicine at the same time. this one of those situations that you can never practice or rehearse for.. Wife and I are kind of numb right now understandably.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im very sorry...We are in the same boat. Those numbers are just numbers. They have no way of knowing how your tumor is going to react to the radiation and chemo. What about avastin ? Did they offer you that? When will you start? I know its scary, but when the radiation and chemo start it was a good feeling for me anyway. I felt like we were doing something about it.

micgrace
Posts: 131
Joined: May 2011

Same here prognosis terminal, 6 - 12 months. But I don't believe that. I feel much the same way, that much better something is being done when radiation and chemo start. We have a meeting planned tomorrow for them to discuss what they plan on doing. Without the in-laws to cause all sorts of issues. Just myself, my wife and my son. My daughter is at boarding school and only comes home weekends. She doesn't like her mother there but is kept busy which is a good thing I suppose. It is her final year of school prior to university.

A fellow GBM patient who has cognitive function put it this way, its like being made of crystal and suddenly running into a brick wall. All plans and aspirations have been smashed to pieces. Rather too apt. Well we are a tough breed in OZ and have a sardonic sense of humor in the face of the worst possible dx one can get.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Hoping your meeting goes well. I dont want to believe the prognosis either. How can it be out of all the cancers out there why did we have to end up with this one...When we got the news of what we were really dealing with I told my sister. Well we knew that we were fighting a battle but now we are fighting a war...I will be there every step of the way. Not the plan I had in mind.I always though I became a nurse to help others, now Im wondering if God had it in mind for my sister...Its so hard to know what I know and do this, sometimes is a blessing and others times I wish I was in the dark.
Our first round of 5 day temador is now delayed a week. Im so scared, there have been so many delays in this thing. Do they even care that its growing...They are waiting for better numbers first. This is just a process for them. Its a hour glass with the sand running way to fast for me...I want my sister that I had before this back. This GMB4 slipped in in the middle of the night and ripped our hearts out...Turned our lifes upside down. God please bless us all with miracles...Help please...

micgrace
Posts: 131
Joined: May 2011

I really do think they tend to treat us in hospital as just a diagnosis in a bed. The chief doctor said its a real pity, what a shame your wife has a GBM. The sands of time are definitely running but as usual here too they are waiting for scores to improve. If I don't go in and it is quite a task for me to get there, no-one really seems to do much other than making sure she is comfortable. The worst part is knowing that all treatments for this disease are taken as being pallative in nature with the disease itself being listed as incurable. There must be a reason to this nightmare. Perhaps it is spur me to develop something to overcome it for others. Yes, I do have that type of ability and the location to perform it. Surely some good has to come out of this rather than yet another life cut short for no point.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Paul.

I read your post and my heart breaks for you and for your wife and family. I know what the doctor's predictions do to you. We went through this with our son David. I found this website that really encouraged me. I hope it helps you regain some measure of hope. Please check it out:

http://livingwithbraincancer.com/default.aspx

I believe that when doctors give a prognosis, they are basing it on statistics but they are really making what I consider a guess, going by what they have seen statistically. The statistics do not take into consideration the individual. The doctors do not know anything for an absolute fact. And there are people who beat GBM.

I think you are making a wise choice to utilize both Eastern and Western medicines. Most of all, please keep a fighting attitude and do everything in your power to hang on to hope. I know that it is almost impossibly hard to do so, but it's so important to have some hope. We have been told that David's mental attitude affects his physical health, and I believe it. It angers me that the doctors say that, but then they strip away hope with their predictions. They just do not know...they are men trying their hardest...but they do not know....

It's hard to find things in some of these posts, but I have read in previous threads about people who had a similar prognosis as yours and they are doing good and living beyond their doctors' expectations. I went back to page two on these posts and found a thread titled "glioblastoma multiforme grade IV" by mgreggsmith. He said that was told he had 1 to 18 months, with 12 months likely. He was at 53 months on March 14th, 2011, and still having clear MRIs and doing fine. I've read more reports like his too. Here's another link to check out:

http://www.virtualtrials.com/survive.cfm

My motto that I try to live by is "pray hard, fight hard, and hang on to hope." I will be praying for you and for your wife.

Peace and blessings to you,
Cindy in Salem, OR

mtcurator
Posts: 2
Joined: Nov 2010

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

itsme1
Posts: 5
Joined: Mar 2011

May I ask, what is the name of the herbal tea? Or where do you get it from?

I know you are going through a lot right now, but our family is too and we would appreciate anything that may help.

MAJW
Posts: 2515
Joined: May 2009

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...

panormitis
Posts: 16
Joined: May 2011

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I don't really know about herbal teas and homeopathic type treatments...but I do know that our oncologist's team strongly cautioned us about David taking anything that would promote cell growth or cellular repair. If I remember right, they told us to avoid the B complex vitamins especially. They expressed a concern that it would promote the healing and growth of cancer cells...the ones we are trying to kill with chemo.

Just my two cents' worth, from our personal experience. Something to think about and maybe ask your oncologist?

SanDiegoPaul
Posts: 25
Joined: May 2011

Grand Master Fu is certified level four in emei Qi Gong healing. The prescription has about 100 Herbs, and it was filled by a Chinese medicine market right here in town. Look to find a Qi Gong healer in your area... Mine also does acupuncture, which helps me a lot

BabsOregon
Posts: 30
Joined: Jun 2011

Paul,

My husband was just diagnosed with GBM last week and, like you, we are in shock. His is also in the motor strip and inoperable. We have tons of support but it is really hard to find real information about what other people have experienced and are hearing from their doctors. My husband (Pat)is starting radiation and chemo next week. He will also start the Avastin, which the ongologist thought would reduce his motor weakness.

Thank you for your posts. Best wishes.

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