dennis0612

Hi Tami,I was diagnosed March 2011 with brain tumor Glioblastomagrae IV.  My wife researched anfound Duke University for treatment. They have the RObert Tische BrainTumor CLinic. I had surfery in Denver first.  THen radiation and temedar.  The radiation and temadar did not take the tumor away.  Duke revieed our med file and treatments,thier suggestion last year was to start IV CHemo Avasin and CPT11. We started the CHemoin about May 2011.  By DEC 20 2011 The tumor schrunk by 70%.  We went back in June and they coulnd not find any more tumor.  They did see   traces of cancer cells in the tumor socket.  They thought it best o keep Avastin going along with temadar and drop the cpt 11.  We will go back and see them in January to see how we are doing by then.  I'm hoping to be rid of all Chemo by then.  I realise Duke University is along ways awat from Southern Cal.  But they did give us hope and great treatment results.

I wass diagnosed with GBM last march.  SInce then have had surery but not all of tumor could be removed because of it's location.  We asked our surgeon where the best place to go for followup was, he said Duke University Tische Brain Tumor Clinic.  We contacted Duke, they took us nearly right away.  They have been working with our local cancer treatment center since then for the Chemo Protocal.  Idid have radiation a month after urgery but it didn't help, did Temadar with Radiation, still no luck.  Duke set us up with Ovastin and CPT 11  chemo and within a couple of months the remaining tumor shrunk by 60%.  My last visit to Duke was in December 2011, at that time they couldn't see any more cancer or tumor on the MRI.  THey had me stay on treatment until June this year whn I go back.  At that time they will do pet scan and MRI and hopefully cut back to just maintenanceon Chemo.  I would really recomend Duke Uniersity Tische Brain Tumor CLinic.  They do have a website.  THey do answer phone and do call back.

Very best of luck and God be wihth you

Dennis P in COlorado

I read your post.  I found out I had a Glio Tumor March 2011.  Had surgery, redationj for 35 days and temodar for a month.  That didn't shrink the tumor.  My wife contacted Duke Univrsity Tische Brain Tumor clinic.  They after a consult reviewd the scans and suggested Avastin and CPT 11.  I'm in Colorado so Duke contacted our local cancer center and proidedd them the imformation for the treatment.  I go every two weeks for the Avastin and CPT 11 IV tretment.  SInce starting the CPT 11 and Avastin last June the I have had great success.  As of December 2011 MRI the tumor shrank to gone and the Oncologist said he didn't see anything in the way of cancer or re-growth.  Just ahd another MRI last week.  News from Oncologist is same, The Doc at DUke wants me to stay on treatmennt until June 2012 at which time they want an MRI and Pt scan.  to be assured the tumor is gone and no other canccers are growing.  Hopefully I can get away from CHEMO at that time. I would strongly recomend Duke University Cancer Center to anyone with a BRain Tumor.  Current CHemo regimend seems to be doing best for me. I also still hav to take Temodar five days a month in conjuction with IV treatments as shown.  Let me know if you have questons.

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.  I've been ale to work part time along with treatments.  I get kinda sick for about a week after IV treatment, but it's not real bad.  I can walk fine, I can talk, I used to have tremors in my lef leg and left hand.  The tremors went away when the tumor shrunk.  My tumor was oin the rifht frontal lobe so the left side of my body showedall the symtoms, 

Best of Luck

Dennis P

Is it gone now? Wasit Oligo or Glio? Glio is short for GLioblastoma.  If it has grown bback or not gone away I would talkTO Duke.  MD Anderson is a wonderful place and I've head lots of great things about them but I've very good luck at Duke and would reomend them to anyone with a brain tumor.

Went to Duke last month with MRI scans in hand.  Doc at Duke looked aat the scans, couldn't find the old tumor nor any new tumors.  Very positive visit.  He said lets look at doing another MRI in March then dependig on wha it shows we will do pet scan and MRI in June.  If things show good a the March or June visit we will look at eliminating one of the Chemos, On Avastin and CPT 11 now. Keep the Faith.  Duke Folks are great.  I would take of send thm ahead of tiem, a much treatment an diagnosis inormaiton as you can.  I'm sure your current Doc's will help with that.

MY prayers go with you, Kep your faith strong,tough and frightening road ahead.

Dennis

Haven't had any come back yet but Doc said if it does we would do re-section and re-start of Chemo.  Keeping my finges crossed and pray it dosen't come back.

Best of luck, I will be sending prayers your way.

Dennis

I've beenon avastin and cpt 11 since june 2011.  My last mri showed no more tumor nor any more tumor growth.  We have been onig to Duke university for cosnultation.  THey recomended the avastin with cpt 11.  Side effects arent tarrible.  Mostly just tired.  DUke does alot with GBM brin tumors.  I've heard alot of good things about MD Anderson and would have gone there if not for DUke University.  I did hae a surgery in March of 2011.  I feel good about the treatments and th results of them.  Just hoping nothing grows back.  They are keeping me on same treatments unitl June.  In june they plan on new MRI and depending on results plan to reduce the Chemo at that time.  Best of luck and prayers are with you.  Keep your faith strong.  Seems to work better than anything else.

On Dec 08, 2011 2:01 PMsandrafiskewrote:

that is how the doctors and everyone else i talked with made me feel.   the tumor came back in a month they gave him avastin the first month it shrunk  alot   the third month its growing again surgery is scheduled for dec 30th  folloed by gamma knife in jan       thanks for ur reply that makes me feel alot better     have you had many tumors come back and what was ur treatment 

Just had mri yesterday, first in two months. Wont know results for a couple of days but so far i haven't had any tumors come back, the one i have has been either reudcing in sixze or remaining stable since june. Keep the faith. I have people tellme all the time they are praying for my reovery. I'm cponvinced the faith helps. My treatment has been avastin and cpt11 sincew april. Before that was just radition and oral chemo (temodar). Still taking the temodarfive days a month.

Prayers are with you. Try to enjoy the holliday.

Dennis

you have to figure out what he likes to do.  I enjoy working on my old cars.  I find the energy, even after chemo to go get sothing done on them because I enjoy it and would like to get a couple of them done before summer.  He might be fighting a form of clinical dperession, It might be worth asking his doc or check into a phsychyatrist to get some meds that might help.

Best of luck

My wife found the best place for us to get consultation and treatment advice after we found out I hade Glio Brain TUmor.  Duke University has been a god send for us.  I've also heard that MD Anderson does alot wiwith brain tumors.  Hope this helps.  Best wished and God Bless.