Oligo II: What to expect w/ chemo & radiation?

This is my first post, here.  It looks like there are no recent oligodendroglioma postings, or else I am in the wrong place. In any case, I've read the comments from 2012 - 2014 and hope that the patients and their caregivers are thriving or in improved states.

In December 2018, a brain tumor was spotted on my husband Mark's MRI which had been ordered for an unrelated reason.  In other words, Make had no symptoms such as seizure; the mass was an incidental finding.  Astrocytoma was suspected.

In January 2019, the first surgery found that the mass was an oligodendroglioma II (apparently, there is no such thing as an oligo I) and it was determined that a second resection should be done to remove the remaining oligo before starting chemo and radiation.

So here we are:  we will see the neurosurgeon for a follow up, then make a plan for chemo and radiation.

QUESTION:  Can anyone tell me what Mark should expect as to dosage and side affects for chemo and radiation, the more specific the better?

Thanks and best wishes to all who are reading this.

I am very sorry to hear about your husband. I have a different diagnosis but I believe the initial treatment is the same and if so below is my experience on the Stupp protocol(42 days of Chemo during which there are 30 days with RT). 

You asked about dosing - this is based on your husbands weight and I dont recall the formula but you should be able to find it online searching Stupp protocal and temodar(the chemo).

The biggest decision,IMO, is the type of radiation(photon vs Proton). I have a neighbor with your husbands exact diagnosis and he opted for proton given his life expectancy. ie, he wanted to limit the amount of his brain to radiation as he expected to live a long time. He is 13 years removed from initial diagnosis and continues to work and is very active. If you arent familiar with the difference i am including a link just below. Dr Rockhill was my Dr for RT.

https://www.sccaprotontherapy.com/gallery/videos/dr.-jason-r

My experience on Stupp protocol with Proton treatment was pretty easy honestly. The daily chemo didnt affect me at all. The radiation is cumultive and continues "to work" long after the 30 treatments. It wasnt untill the last 3-5 days or me to start feeling some fatigue. I had a 30 day recovery period and then I started the 5/23 with Chemo. 5 days on and 23 off before they check bloodwork and start the cycle again. There is a big increase in the dose and its again driven by weight. I opted to dose escalate with my second 5/23 cycle and stayed at that "max" dose for 4 more rounds. Chemo is also cumalitive. The 1st cycle wasnt that hard. We actually traveled during th 5 days. The next several cycles were much harder for me. Day 1&2 were usually pretty easy with days 3-5 and several after with very low energy and appetite. I had pretty strong nausea. I tried the precription route and I got extreme contipation. I ended up using cannabis and within mins nausea went away and I havent used prescription nausea meds since.

As mentioned above RT impact will be felt long after it stops. My RT therapy stopped 14 months ago and I continue to deal with fatigue. They say brain surgery, chemo, and RT ages your brain 20-40 years. The best description of this van be found by searching Cheryl Broyles brain fatigue.

I hope this is helpful.

Erik

Thanks, Erik, for your very detailed explanation.

My husband is 69 y.o., is a physician and Medical Director and has no intention of slowing down yet!  He's lost some weight due to the surgeries; down to 168 lbs.  Maybe we should fatten him up a bit in anticipation of the chemo/radiation.

Do you understand how targeted radiation is?  Mark has already lost some eyesight due to glaucoma, and the tumor site was near the optical nerve.  So we're concerned that radiation might injure the optical nerve and, hence, his vision.

We do not yet have an oncologist identified for the treatment.  If there are any questions we can help you with, pls don't hesitate to ask.

Thanks for your insights.

Well since your husband is a Director,, i assume he is set up the exact Cancer Center he will use. I would assume it is the group under his employer. I bring this up because from my experiences, many or most Centers use the standard protocol for cancer treatment and i can tell you that most are far from best. Please be open about second opinions, hospitals that are outside of the standard umbrella in most cities. I can not stress enough, the level of care in regards to treatment Options in 90% of the largest Cancer centers and the options at many specialty Cancer centers who are less influenced by powerful FDA and Pharma backed Corporations. Examples being Cancer Centers of America, Chipsa, care Oncology, even Duke who are open to test phase treatments along with Naturopathic Doctors and naturopathic medicines that are integrated into the current treatments like Chemo and immunotherapy.... The standard care of treatment produces the standard level of survivorship! When i had my resection and then met with my Oncologist in Charlotte at the Large Cancer Center whoch was under the large Hospital enterprise, i asked my Oncologist for a real treatment plan and a real life prognosis for my age, health with a GBM. Before a treatment plan was even laid out, she told me that patients with a GBM going tbrough the care which i would go through were doing well if they live to see one year. This really floored me ad i felt this was an expiration date and i felt like this was surrendering before we ever even laid out a treatment plan. I personally did a ton of research, speaking with others and i was fortunate enough to talk to someone who went through a similar outcome, given a couple of months for a cervical cancer at 18 years old. She refused to accept that and went to Cancer treatment Centers of America where an e piration date was never mentioned, a plan which included traditional and holistic treatments and an experience like no other and here 8 years later to tell us about it and convinced me to make tbe same move. I can personally tell you that i have never seen any place like CTCA in my life, how they work, how they build a treatment plan with the patient, not for the patient. The openness and transparency when the patient brings up Holistic, naturopathic options to I tegratr into the oncologists laid out plan. And the best part is, getting to see and talk to all the patients outsode of the center and hearing their stories and showing their 5 year button after they were given 4 months for a terminal brain or Pancreatic cancer....

So please keep your options open and be open to all options, especially with this type of cancer as its the difference between these people life and Death stories.

God Bless a d Good Luck!

Mike

Thanks Mike.  We are exploring various opprtunities in NYC and will keep in mind your advice.  

So sorry to hear that some medical institutions have not been communicative in supportive ways.

I do believe that environment and diet can affect one's well being.  

Best to you.

Isabel

As of January 7, 2019 I became a 5 year survivor of Oligodendroglioma grade 3 brain cancer.  After my resection which removed 98+% of my 5 cm tumor I was on Temodar for approximately one year.  No radiation as my neuro oncologist said he wanted to reserve radiation for when my oligo returns.  No recurrence so far.  I have had no seizures since my surgery and I am completely off seizure medication.  I have MRI's every four months.  I am sorry you have to deal with this and I am sure you are still in shock as I was when I was first diagnosed.  Best wishes.

Franke,

Thanks for your post.  I'm so glad to hear of your results.

We will know more after the chemo/radiaiton plan after tomorrow's follow up visit with the neurosurgeon.

Do you recall if you experienced significant fatigue and low stamina after your tumor surgery?

Stay strong.

I was taking seizure medication (Keppra) for a few months after my surgery until I slowly weaned myself off.  Only then did I start to feel my normal energy come back - even though I was on Temodar for the first year.  I would only be tired at the end of the Temodar week but would bounce back for the remainder of the month.  I am a worrier so the entire first year was a tough one.  I kept thinking I was going to die.  Slowly, over the years I have become more "accepting" of what could/will happen.  I tend to get a little down just before each MRI but overall I am happy to be here and right now I feel terrific.  Starting this year, I am going to be getting my MRI's here in Reno instead of making the trek to UCSF in San Francisco so that should help lessen the pre-MRI anxiety.  Best wishes.

hello nyc212, 

hope you know you are dealing with the ' best ' brain tumor if anyone has the chance to choose. You can way the options after discussing with a specialized neuro- oncologist. 

I was 25 yrs younger when i got the diagnosis of Oligo- astrocytoma 10 yrs ago. I got a partial resection of the huge tumor in my rt. temporal lobe followed by only temodar ( at highest dose, at the time state of the art) without radiation as i was very worried about my cognitiv abilities. 

I lived quite well, completely able to deal with a high tension job with several minor regrowths along the years, without opting for further therapy at the time as i was doing well. 

After the new classification of braintumors in 2016 and cos of the asymptomatic growths my NO urged me to go ahead for further treatment as my BT was reclassified as an Oligo II with all the positive deletions. 

According to the following promising study mostly Oligos would benefit from a combined Radiation + PCV ; 

https://www.nejm.org/doi/full/10.1056/nejmoa1500925

I just stopped working for the duration of radiation , but started work ( part time) with the PC ( no Vincristin for me) and managed to complete 4 out of 6 cycles. 

Today i am 10 yrs from first diagnosis and 5 months from last treatment , 53 yrs old and work full time. 

During the treatments i learned to take care of myself, work less and find new hobbies. I am glad of that today. As a director your husband has certainly told colleagues to slow down, to be able to tolerate the treatments and adjust to the new ' normal' even if he needs professional help ( as I did ). It might then be time to follow his own advice ;-) 

Hope your appoinment went well? 

Kit

Kit,

Thanks for sharing.  I hope you remain on your current course, which seems good.

So far, we have two different NO opinions:  (1)  Do chemo and proton radiation, and (2) maintain a "wait and see" vigil.  We are trying to sort out these obviously very different approaches.  

Today, my husband mentioned he is starting to get headaches.  Not sure what this means.