Peace, comfort and healing to you Missi, and the rest of your family. I can not imagine your pain, I can only hope that you find some comfort in the amazing memory of your brother. Peace and comfort! D
Posted Date: 25 March 2009
Missed far more than you can imagine. Still feel more off balance than I am comfortable with....but focusing on channeling the positive - that'll just have to do for now.
Two of your pals showed their face today. Cant help but blame you for that bit of kindness Dave :)
Stay on my shoulder Dave - still need for a while yet.
Posted Date: 19 March 2009
First off, I'm truly sorry for the loss of David. The tribute video I'm sure is only the tip of the iceberg on the person he was.
My husband was dx with Oligodendroglioma grade III anaplastic on 3/11/03. He was 34 1/2 years old. The statements here about Temodar surprised me. I believe he is alive today because of the Temodar and Radiation. We have seen other's being dx with Grade II and not having aggressive tx and they have passed. The recurrance came about 2 yrs after the dx.
Today he no longer works, he worked up until 11/07, he does have neurological symptoms of memory loss, word finding difficulty and word substitution. That's partly related to the resection and the radiation. We have learned how to adapt, that's all you can do.
I trust that we will one day find a cure.
Posted Date: 19 March 2009
I want to express my heartfelt sympathies on the loss of David. I just lost my husband to a GBM on Tuesday, March 10, 2009.
He was diagnosed on Jan 20, 2009. The dr told us we could expect years: She would keep him going from year to year. We had 8 weeks.
They removed 80-85% during surgery and he was doing Temodar and radiation. They say he was having a bad reaction to the Dilantin he was on for seizures and I ended up taking him to the ER that morning where his heart stopped in the ER and they were unable to bring him back.
I am so sorry for your loss.
Barb
Posted Date: 16 March 2009
The full text article being discussed about the stem cells is here:
PTEN/PI3K/Akt Pathway Regulates the Side Population Phenotype and ABCG2 Activity in Glioma Tumor Stem-like Cells
http://cell.com/cell-stem-cell/fulltext/S1934-5909(09)00010-1
Then there's this article from last July:
Temozolomide Preferentially Depletes Cancer Stem Cells in Glioblastoma
http://cancerres.aacrjournals.org/cgi/content/abstract/68/14/5706
It's complicated, the Cell Stem Cell article is just one more piece of the puzzle.
My 3-year old niece was dying of her brainstem tumor in 1995, radiation knocked the tumor back but then it started growing again, they tried one chemotherapy drug after another but nothing was working. Until she entered a phase I trial of temozolomide. It bought her 9 good months AND it was oral, not IV AND it didn't make her neutropenic.
Nothing would have saved her in the long run. This study is NOT a cause for alarm, just another piece.
I came here to express how much I miss David and I'm kind of sorry to see his messages have turned into some sort of debate.
Miss you, David, dearly. My son still soldiers on.
Godspeed...
Posted Date: 16 March 2009
Hello again.Let me start off by saying I fully respect everyone's opinion on the temodor issue.I believe that if you have a GBM tumor which are HIGHLY lethal tumors,then by all means throw every thing you have at your disposal at it.What I and others are really concerned about is it's use on the lower grade gliomas,for example David Welch started out with a low grade astrocytoma and was given temodor as a treatment.I have personal experiance with this issue as my huband was diagnosed in 2000 with a grade 2 oligodendroglioma and right after surgery they started pushing the temodor.I mean they really tried to scare us.We were told "It was a matter of life or death"That is an exact quote.Well we went to the pharmacy scared to death,and picked up the temodor,but all the while feeling that it did not feel right.So that night instead of taking it my husband flushed it down the toilet.After reading this new report out on temodor We now know for sure we made the right choice!Now in 2009 ,9years later ,two craniotomies,and progression to anaplastic oligodendroglioma and absolutely No chemo,No radiation,My husband is still here for me our children and his grandchildren.I firmly believe that if he had taken that drug,it would have made his low grade glioma advance more quickly towards a GBM and he would no longer be here.Everyone's brain tumor journey is different of course,but I believe that rather than blindly following doctors advice, you should ask questions and lots of them ,after all it's YOUR OR A LOVED ONE'S LIFE on the line here,so be smart and be educated before making these very important medical choices.
Posted Date: 16 March 2009
There is absolute truth in some of what you say, but bottom line is this.....do nothing and see how far that will get you with a brain tumor or any malignancy for that matter. There are plenty of people who do nothing and most often they do succumb very quickly. Usually within a few weeks to months after treatment is stopped. I know that for a fact.
Posted Date: 15 March 2009
Bill and Sue:
Thank you for taking the time to post that important information on Temodar. It is absolutely true that the pharmaceutical industry keeps putting out drugs that appear to "help" a very small number of patients. Unfortunately, they keep using RELATIVE statistics instead of ABSOLUTE statistics, because that allows the drug being sold to appear many times more efficient than it actually is. Case in point: Tamoxifen for breast cancer patients: this drug is a carcinogen that reduces prevents recurrence for exactly 1 percent of the patients (in ABSOLUTE statistics), but it is always presented as providing a benefit of at least 43 percent. Noone tells the patient that this figure is in RELATIVE statistics. And noone ever tells the women involved that they are taking their chances with uterine cancer when taking Tamoxifen......to "prevent" breast cancer recurrence:
http://www.annieappleseedproject.org/relrisverabr.html
Not the shadow of a doubt, Bill, that Shering-Ploug is making billions and billions of dollars with a drug that provides very limited "survival" benefits if any, because this drug clearly accelerates recurrences, actually.
Same scenario with chemotherapy (as you know, the benefit from chemotherapy is dreadfully low in ABSOLUTE statistics); and it increases lifetime leukemia risk by 3%.
And by the way: AstraZeneca, the maker of chemotherapy agents, has also been found to CREATE cancer due to their parallel pesticide-making activities (no kidding), thus making billions on both ends of the ever-growing cancer problem this society is facing:
http://bcaction.org/uploads/PDF/NCIMFlyer.pdf
Food for thought, I think.
Posted Date: 14 March 2009
You can say whatever you want about Temodar, but it does buy time. A neurosurgeon from Houston Texas took many doses of Temodar during his battle with a gbm. If Temodar was not of value, a neurosurgeon would be privy to that information. Unfortunately, at this time there is no cure for gbm.
Posted Date: 14 March 2009
Whatever else Temodar may do, I think it bought David more time with family and friends, more time to push awareness, and more time to support those so tirelessly pursuing better treatments and ultimately a cure. Best wishes, strength and perseverance to everyone - patients and their medical teams - fighting brain cancer.
Posted Date: 14 March 2009
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