One patient with glioblastoma still alive nine years later
by Peggy62 on Fri Feb 29, 2008 12:00 AM
I have a 33 year old son who was diagonsed 3 years ago with oligoastrocytoma Gr 2--3 years ago.
Following surgery and radiation he is finally feeling well again and returned to work last week.We are both very happy about that.
I am already lost 2 children. I had my first born die in a seizure at age 21.
He was born witn a birth defect( spina bifida and hydrocephalus), my second chil died shortly after with the same defect and now my third born has brain cancer.
I know the progonsis, but would like any informationyou can give me on time lines of changing from Grade 2 to Grade 3. I am trying to stay one step ahead of David in knowing what the future will bring, so that I can have my emotions in control and better able to help him.
Anybody that can help me, I would appreciate it.
David is now living on his own about 30 miles from me, but we are indaily contact.
Before the surgery, he was having seizures on a daily basis and his personality had changed so drastically that I could barely talk to him.He was very critical of everyone and everything.Presently, I am enjoying having my easy-going son back and wonder how long it will last.
Thank you for reading this.
by alsaman on Sat Mar 01, 2008 12:00 AM
First of all congratulations on making it 3 years and regaining your easy-going son! My wife and I are very early in our journey with her cancer (astrocytoma grade 3) but we have learned some valuable lessons already. One of the most helpful has been to focus on the positive aspects of this situation. We've learned to appreciate these good things much more than ever before. We don't ignore the potentially bad outcomes of the treatment or disease, but we also don't choose to dwell on them for very long.
Finding a time-line for recurrence is very difficult, especially with mixed tumors and grade 3 tumors, for which there is less data than pure stage 2 or stage 4 tumors. Based on the conversations I've had with my wife's doctors, some friends (one of whom is a neurologist) and reading that I've done of both medical and lay literature (I'm a doctor myself), I've found it disheartening to see there is no close-to-accurate estimate of recurrence. The numbers out there are AVERAGES based on data that is pooled from many different patients - different grades, types, ages, tumor residual, etc. I'm using the term recurrence because it's very hard to determine when a tumor changes from grade 2 to grade 3. Your post mentioned he had a grade 2-3 tumor. Which grade was it? If there was a question by the pathologist at time of diagnosis, you may want to get a second opinion on the pathology (although at three years out, it may not make a difference). I have found one very small study of 23 patients with either pure anaplastic (grade 3) oligodendroglioma or mixed anaplastic oligoastrocytoma were followed for 10 years and the median (meaning the exact middle - half the results are less and half the results are more. This is different than average, also known as the mean) time to tumor progression was 78 months and the progression free survival rate (PFS) at 5 years and 10 years was 57% and 47% respectively. Progression in this study was defined as changes on head CT that suggested progression of tumor (mostly evidence there was increased or new enhancement on CT). The PFS rate means of the people that were alive at year 5 and year 10, how many did not show any sign of progression.
Again, this is a very small study so conclusions based on it should be taken with a grain of salt. Also the patients started off as a grade 3 and progression was to an assumed grade 4. Assumed because a biopsy of the tumor was not required to determine progression, only changes on CT. As you can see from this one example, it is tough to draw conclusions from studies.
I think the underlying difficulty is that we - people with brain tumors and those affected by it - have to deal with the tremendous uncertainty of the future. How long will s/he live? How long will s/he remain symptom free? Etc. This is something I'm only beginning to figure out for myself. I can say this though, the little things about my wife and our relationship that may have become overlooked or taken for granted now seem so precious. We try to take as much joy in these things as we can and as I mentioned above, try to focus on the positives. You may find it helpful to join a support group, if you haven't already, for family members of cancer survivors. There is likely one at your local or regional hospital. These can be very helpful in dealing with the uncertainty.
Good luck to you and your son.
by kris11 on Sat Mar 01, 2008 12:00 AM
On 2/29/2008 Peggy62 wrote:Hi, I have a 33 year old son who was diagonsed 3 years ago with oligoastrocytoma Gr 2--3 years ago.Following surgery and radiation he is finally feeling well again and returned to work last week.We are both very happy about that.I am already lost 2 children. I had my first born die in a seizure at age 21.He was born witn a birth defect( spina bifida and hydrocephalus), my second chil died shortly after with the same defect and now my third born has brain cancer.I know the progonsis, but would like any informationyou can give me on time lines of changing from Grade 2 to Grade 3. I am trying to stay one step ahead of David in knowing what the future will bring, so that I can have my emotions in control and better able to help him.Anybody that can help me, I would appreciate it.David is now living on his own about 30 miles from me, but we are indaily contact.Before the surgery, he was having seizures on a daily basis and his personality had changed so drastically that I could barely talk to him.He was very critical of everyone and everything.Presently, I am enjoying having my easy-going son back and wonder how long it will last. Thank you for reading this.
I am a 31 year-old woman, diagnosed with a grade 3 oligoastrocytoma two and a half years ago, one month before my wedding was to take place. I had surgery and then 7 weeks of radiation, and then we had the wedding and honeymoon. When we returned from the honeymoon, I started my 12 months of Temodar (chemo). I returned to work 2 months after my surgery, while getting radiaiton every morning. I am doing very well, and my husband and I are still considering starting a family.
Your son is very lucky that his was a grade 2, as everything I've learned means that his is unlikely to recur for many years. My doctors are optimistic (or at least have me being optimistic) that mine won't come back for many years, as well, though the mecial books and Internet websites make it sound as though mine (as a grade 3) should have already recurred.
I recently met another woman now in her late thirties, diagnosed 10 years ago with a grade 2, a month after her wedding (as opposed to my diagnosis a month before the wedding), and they now have three children and she is feeling great.
Having to get an MRI every few months of course keeps this from ever leaving one's mind, but we have to do our best to go on with life as normally as possible. I certainly still have my bad, pessimistic, tear-filled days, afraid the tumor will soon come back, but my husband and my parents have taught me a lot about enjoying every day, going on with normal life, and realizing that any one of us could suddenly be hit by a bus, so there's no way to know how much time any of us have left.
I hope your son continues to do well, living life as a regular, plain old, normal 33 year-old! I will say a prayer for David and for you, that you both have many, many more happy years to enjoy.
All the best,
Thank you for your post. My wife and I are in a similar situation. We had been trying to start a family when we got my wife's diagnosis a month ago. Her doctors are also optimistic about her ability to return to work soon and her long term prognosis. That uncertainty is tough to deal with but we try to focus on the positive as you and your family do. And yes, she has her tough days too. Night time seems to be worse - when she's tired and her defenses aren't as resilient or strong as during the day - the what-if's and worst-case scenarios more easily find their way into her mind. Good luck to you and your family!
One more bit of information for you. There was a population-based study done in Switzerland that looked at 987 cases diagnosed over a 14 yr period. Out of those there were 70 cases of Grade 2 oligoastrocytomas and oligodendrogliomas. This study showed:
"The mean time from progression from low-grade astrocytoma or oligoastrocytoma WHO grade II) to anaplastic astrocytoma or anaplasticoligoastrocytoma (WHO grade III) was 5.9 + 3.0 years, from anaplastic astrocytoma or anaplastic oligoastrocytomas to glioblastoma (WHO grade IV) 1.4 + 1.0 years, and that from lowgrade astrocytoma or oligoastrocytoma to glioblastoma 5.3 + 5.1 years."
by chefnnails on Wed Mar 05, 2008 12:00 AM
Hi Peggy, Please see this blog for a "Story of inspiration" It is my story and I do hope it helps in some way.
by Peggy62 on Thu Mar 06, 2008 12:00 AM
Thank you Chris for directing me to your blog A Story of Inspiration.
It truly is a story of inspiration and gives hope. You sound very grateful and I know that gratitude helps a lot.
David is well at the moment and back to work part-time. He is in a bit of denial now as he feels so well, so I am goi going to leave him like that as long as necessary. We travel out of province on Monday to Halifax for a check-up which following radiation. I am confident that it will be good.
All the best to you, and send me a message anytime.
by kris11 on Sun Mar 09, 2008 12:00 AM
by sunflower79girl on Thu Apr 17, 2008 12:00 AM
I just want to let you all know that there is hope, I found out 10 years ago when I was 18 years old that I had a grade 2 Astrocytoma and 3 years later It doubled in size. It ended up changing to a Oligastrocytoma Grade 3. I had another surgery and I had to be awake on this one, did my radiation. And I held out for chemo because I was getting married. And when I got back from my wedding I asked the doctors if i could hold off on chemo and try to have a baby. He told me you have 3 months to try and on the first month I got pregnant. She is now 5 and I still have not had chemo. I have not had any change. The doctors do not know when it might come back, but I live like nothing is wrong with me, I have a little girl to think about.
by Nisreen on Mon Nov 02, 2009 05:25 PM
My sister was diagnosed in November 2008 with Oligoastrocytoma 2/3. She lives in Germany. She has just read that there is a breakthrough in treatment. There is a new kind of nuclear radiation available. This is no longer clinical but to be used on patients. Even the public health insurance of Germany pays for it. She still does not know much about it as it was just broadcast a few days ago. So she does not know who is eligible for it, if you have to be far advanced or what. I have a link to the article in German so if can have some translate it for you to understand it:
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