Well the most interesting news was that it was never a different kind of tumor and eventually changed into what I have. Due to the testing they did on it they think it has been a Glioblastoma all along. Also they don’t think I have had it very long. Possibly 3-4 months?
My tumor was considered a grade IV and that is due to the number of cells dividing under the microscope.
So that is the one bad strike, if it morphed from something else then it may be susceptible to treatment for that something else.
What he did say as far as advantages go:
- It does have a MGMT hypermethylation and that makes it more susceptible to treatment.
- My age is an advantage
- The surgery went well and they got a significant portion of the tumor out. (they call that a gross total resection)
- My KPS is good – that is a functional neurologic test that basically says I am a fully functioning adult.
All of that adds up to I should Tolerate treatment well.
As for treatment it will be like this:
- 6 weeks radiation therapy: they will do another MRI to map out the exact location they will radiate. Because the tumors have little tendrils of cells they cannot cut everything out. Cells are always left behind. The radiation blasts the tissue around where the tumor was to try and kill those cells. The radiation is M-F for 6 weeks. Every day I will have to go and have my brain blasted for about 15 minutes or so.
- In addition to the radiation I get 6 weeks of chemo. It is a pill I need to take before the radiation to make the cells more susceptible to the radiation called Temodar or Temozolmide. I take this 7 days a week.
- After the 6 weeks I get a month off to recover.
- After my month off they will scan again and that becomes my new base line. I will continue to get scanned every 3 months after that.
- After my month off I do chemo again where I take a high dose of Temodar for 5 days then have 23 days off. I will continue on that cycle until they decide to take me off. I could be years.
Now for the side effects:
- All the typical ones…
- Fatigue (everything causes fatigue) counter act with exercise.
- Nausea (everything causes nausea) counter act with zofran (i.e anti nausea pills)
- My blood will need to be monitored for a decrease in white blood cells, a decrease in platelets and any allergic reactions.
- I have an increase risk of blood clots in my legs that can move to my lungs
- Increased risk of seizures from the swelling due to radiation treatment.
I have very few real restrictions while on chemo/radiation. Just have to watch out for infections.
This is the standard treatment for these types of tumors since 2005 with good results. If this does not work (and often these things do grow back) they have additional options such as more surgery or some trials. They don’t like to start anyone on trials as they want to make sure the standard treatments work before going onto something else that has not been established yet.
We are going to try the Ketogenic diet as we have read about it as being helpful but the Dr did not feel it would make much of a difference. He felt a good “healthy” diet is what we need with lots of water and exercise.
That is our plan. Jessie liked him (Dr Ambady – from the National Cancer Institute and Johns Hopkins) and she hates all my doctors. He answered our questions quickly and never really stumbled on them. So he appears to know what he is doing. He was not a cheerleader but gave us no cause for concern.
Dr Neuwalt, the head of the department, was not there so we have not met him yet. He has several trials going so we always have those to fall back on.
