Oligodendroglioma Grade II Temodar and Radiation

dmercer1

Just diagnosed Nov 2010 with Oligodendroglioma II. Had immediate surgery. Now I am getting ready to start 6 weeks of radiation and 12 months Temodar. However, I'm not finding anyone who is doing both of these concurrently as a first treatment for oligo II. Not sure about the 1p, 19q as the sample they sent was inconclusive. Anyone have any advice on this? It appears that radiation isn't the standard for my case at this time. From one of the articles I read radiation and chemo at the same time is something they are currently studying. I wonder if doing radiation earlier is going to become the standard with the advancements in focused radiation. I'll be getting the IMRT/IGRT. I was supposed to start yesterday but it has been put on hold pending insurance approval. I wonder if if they are just taking their time or if they are questioning the protocol. Anyone else have or know of someone in my situation (37 years, Grade II Oligo) who had upfront radiation? I am having trouble finding anyone. Thanks.

DistancerunnerXC

My advice
Coming from a man who came within 160 days of retirement only to see his entire retirement dreams come crashing down because of GBM and it's treatment.

When you get your every 8 weeks scan. Make sure that you don't gloss over little phrases in the radiology report like "enhancement is seen which is most likely due to treatment" or T2 Flair can be seen proabbaly due to treatment and then think to yourself "Whew!!! It's not a recurrence!"

Wrong. It could be something serious that you need to consult your oncologist with immediately! He'll probably point this out anyway.
Eventually my wifes was biopsied.
It came back (3 samples) edema/swelling and inactive cancer cells..(in one of the three samples)
The opinion was that this was good and stable.
It may not mean that.
Press your doctor as to what the possibilities of any enhancement areas are and what can result from these non-recurrent blobs of white on the scan.
I didn't ask aenough questions and by the time that I knew what my wife was suffering from (radiation necrosis) she was nearly completely aphasic.
Luckily the great docs where I go recognized the problem in time to at least get her mobile...she is still only 50% there cognizantly...
Ask questions about each scan. Don't be intimidated, they are GLAD to answer all your questions...
I just didn't know to ask.

KMPonder

DistancerunnerXC said:

My advice
Coming from a man who came within 160 days of retirement only to see his entire retirement dreams come crashing down because of GBM and it's treatment.

When you get your every 8 weeks scan. Make sure that you don't gloss over little phrases in the radiology report like "enhancement is seen which is most likely due to treatment" or T2 Flair can be seen proabbaly due to treatment and then think to yourself "Whew!!! It's not a recurrence!"

Wrong. It could be something serious that you need to consult your oncologist with immediately! He'll probably point this out anyway.
Eventually my wifes was biopsied.
It came back (3 samples) edema/swelling and inactive cancer cells..(in one of the three samples)
The opinion was that this was good and stable.
It may not mean that.
Press your doctor as to what the possibilities of any enhancement areas are and what can result from these non-recurrent blobs of white on the scan.
I didn't ask aenough questions and by the time that I knew what my wife was suffering from (radiation necrosis) she was nearly completely aphasic.
Luckily the great docs where I go recognized the problem in time to at least get her mobile...she is still only 50% there cognizantly...
Ask questions about each scan. Don't be intimidated, they are GLAD to answer all your questions...
I just didn't know to ask.

A "new enhancement on the
A "new enhancement on the optic chiasm" in my husband's Oct '10 MRI ended up being a GBM and not the radiation necrosis they had suspected. That was after two PET scans revealed no evidence of tumor. You cannot totally rely on a PET 100%.

Hubby successful treated the mixed germ cell germinoma of 1986/87, only to have Anaplastic Astrocytomas diagnosed in 2009 (induced by whole brain radiation), and now is fighting a GBM in the optic chiasm, which has rendered him blind at age 45.

You are right that you have got to ask questions and do all you can. We also have to remember that even the most excellent of doctors (as we are being treated at Duke) are doing the best they can in this difficult battle.

What I think is so challenging in all this is that no two brain tumor patients are alike. There are more than 120 types of tumors (benign and malignant), compounded with location of tumors, previous tumor history, etc, it's just remarkable they know what they know. It's my prayer more research can be done to find out the cause of all these tumors, so we can make them a thing of the past.

All the best to both of you.

Carrie King

Oligo II/
My husband is also 37 yrs old. Has Grade II Oligo, left frontal lobes. Had resection not sure if there is any tumor that is not being detected on MRI or CT. Haven't started radiation yet, however may be a possibility. He does have the 1p, 19q deletions. Have you started radiation yet?

dmercer1

Carrie King said:

Oligo II/
My husband is also 37 yrs old. Has Grade II Oligo, left frontal lobes. Had resection not sure if there is any tumor that is not being detected on MRI or CT. Haven't started radiation yet, however may be a possibility. He does have the 1p, 19q deletions. Have you started radiation yet?

Started this week
I started this Monday. So far so good. I would be curious to follow your husband's doctors' recommendations. I am having a hard time finding anyone with a grade 2 who started out on radiation. Wishing you the best.

cushla69

hey Dmercer1, I was
hey Dmercer1, I was diagnosed Nov 2010 with oli and astrocytoma grade 3. had open brain biopsy nov 9, 2010. they started me on chemo (temodar) and radiation Dec 21, 2010 and i did both until Mar. i restartted chemo on march 3, 2010. I have to do the temodar for 6 months now for 5 days every 28 day cycle. I am doing pretty good. contact me through e mail if u like, i cant ever seem to find it when someone sends me a note through this. (loveheart952000@yahoo.com)

gdpawel

Oligodendrogliomas
Surgical excision is the gold standard of treatment for surgically accessible lesions. Many studies in medical literature clearly demonstrate the efficacy and superiority of surgical resection. Surgical excision of all intracranial disease has been shown to provide the long survival with good quality of life. However, you mostly find this expertise at NCI-designated cancer centers or Tertiary Medical Centers affiliated with a medical school, and not at your local community hospital

Surgery allows treatment to be directed at the tumor itself. Computer-assisted surgery has made brain surgery faster, safer and more precise. Magnetic resonance imaging allows neurosurgeons to see beneath the skull before the incision is made and locate the tumor exactly. Ultrasound provides real-time imaging of the brain as the surgery is being performed. Because of this precision, surgeons can make smaller bone openings, approach the tumor more precisely and more completely resect it. As a result, they've perfected brain surgery to be relatively safe, even for many lesions that previously were considered unresectable.

Primary lesions generally involve "invasion" into adjacent brain tissue (they become part of the brain) and at one time, it made sense to have postoperative whole brain radiation in an attempt to destroy any residual cancer cells. But, like with metastatic lesions, this has been abandoned at leading cancer centers because of the substantial neurological deficits that resulted, sometimes appearing a considerable time after treatment. Metastatic lesions have relative "lack of invasion" into adjacent brain tissue (they are not part of the brain), making them ideal for radiosurgery or postoperative "focal" radiation.

Traditionally, chemotherapy had not been used for primary brain tumors. They've been having some dramatic results with using some latest forms of chemotherapy, like Temodar. I think it would be worth looking into. From what I could quickly gather, Anaplastic oligodendrogliomas and mixed oligoastrocytomas are more "sensitive" to chemotherapy than astrocytomas. A high rate of response to the use of PCV (procarbazine, CCNU, vincristine) chemotherapy has made the use of chemotherapy prior to radiation therapy the standard of care for these tumors (I don't like it when they say "standard of care." There is NO standard). The actual effectiveness of this treatment regimen is currently being investigated. Additionally, low grade oligodendrogliomas are also sensitive to chemotherapy, and PCV can be used when low grade tumors begin to grow despite prior radiation therapy.

Anaplastic oligodendrogliomas generally have a more favorable prognosis and remain the only subtype of glioma that commonly responds to chemotherapy. Most primary oligodendrogliomas and oligoastrocytoma respond to treatment with Procarbazine, Lomustine and Vincristine, with response rates of approximately 80%. However, limited data on second-line treatments are available in patients with recurrent tumors. A novel second-generation alkylating agent, Temodar, has recently demonstrated efficacy and safety in patients with recurrent glioblastoma multiforme and anaplastic astrocytoma.

The treatment of these tumors is controversial. Some believe that these tumors are biologically less aggressive and can be observed with serial imaging until tumor growth is either clinically or radiographically apparent. Others believe that all oligodendrogliomas should be treated with radiation after histological confirmation. There is evidence that radiotherapy may not benefit patients with oligodendrogliomas. Oligodendroglioma is a chemosensitive brain tumor. Chemotherapy is playing an increasing role in the treatment of low-grade and anaplastic oligodendrogliomas. Some have advocated using chemotherapy rather than radiation for patients with low-grade oligodendroglioma when treatment is indicated and to defer radiation for malignant transformation or tumor progression despite chemotherapy.

If these tumors are supposed to be "sensitive" to chemotherapy, it would make sense to "test the tumor" to see which chemotherapeutic agent is most "synergistic" and not "resistant" to the tumor.