Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

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Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

by devonnajm on Thu Jan 15, 2015 09:00 PM

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My husband was first diagnosed with an egg size stage 2 oligodendroglimo in 2005, followed by surgery in early 2006.  Thankfully, all the tumor was removed and radiation/chemo was not recommended.  With 6 month MRI's, it was discovered in 2010 that he had another marble size tumor which was also surgically removed just like the first.  Fast forward to 2014.  He just had the 3rd tumor removed, but this time it's stage 3 with some webbing remaining.  His surgeon (same for all 3 tumors) recommended radiation/chemo this time.  Has anyone ever used proton radiation therapy as treatment for this type of tumor and what were your results?  We are getting conflicting information from his surgeon and the neuro oncologist. 

RE: Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

by MrBrightside on Tue Apr 26, 2016 03:24 PM

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You posted this a while back but I just saw it.  I also have an oligodendroglioma grade 3 and I just completed proton radiation treatments.

It seems like your husband and I are in similar situations but he is 5 years ahead of me on his timeline.  I was diagnosed in 2010 with an oligo grade 2 (left frontal) and had surgery to remove it and no follow up chemo or radiation immediately after.  Just routine MRI's.  No change until early 2014 when growth started to occur again in the same location.  I did 11 months of Temodar finishing in December of 2014.  The growth stabilized, possibly some minor shrinking, but overall nothing overly successful with the treatment.  My doctors decided to monitor with routine MRI's again.  In July of 2015 I started feeling very run down and not very well.  I ended up having a double gran mal seizuire which put me in the hospital for a couple days.  MRI showed nothing obvious and a follow up MRI was scheduled for 3 months.  After 2 months, my concentration and memory started to tank and we moved up my MRI which showed growth again.  I had my second surgery to remove in December 2015.

Pathology of the second surgery revealed my oligo was now a grade 3.  Radiation was recommended.  Three people I know recommended that I have a consulation at MGH in Boston on doing Proton radiation there instead of standard radiation at my hospital.  I ended up doing it and just finished 6 weeks of proton treatments a couple weeks ago and have a follow up MRI this Friday.  They are likely going to recommend that I start a PCV chemo regimen at that time as well.  The treatments went fine.  The staff there was very good.  Side effects were basically fatigue and hair loss in the area. 

When I inquired for more information on proton therapy with my current doctors at the hospital that has done my surgeries, they did not give me specifics on it and said if interested I should go meet with the staff at MGH to discuss.  While they did not give an opinion outright, reading between the lines in the way they spoke to me made me believe that if it were their own personal situation that they would also be considering it.  Just call it a vibe they gave off.  They said nothing negative including the radiation oncologist.  My neuro-oncologist did give me a referral to go to MGH and that has been helpful with exchanging medical records, MRI results, etc. 

Please feel free to send me a message directly over this website to share more information.  Your husband is probably the closest match to my situation I have found so far.

Chris

RE: Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

by hailey120 on Mon Mar 06, 2017 04:14 AM

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On Apr 26, 2016 3:24 PM MrBrightside wrote:

You posted this a while back but I just saw it.  I also have an oligodendroglioma grade 3 and I just completed proton radiation treatments.

It seems like your husband and I are in similar situations but he is 5 years ahead of me on his timeline.  I was diagnosed in 2010 with an oligo grade 2 (left frontal) and had surgery to remove it and no follow up chemo or radiation immediately after.  Just routine MRI's.  No change until early 2014 when growth started to occur again in the same location.  I did 11 months of Temodar finishing in December of 2014.  The growth stabilized, possibly some minor shrinking, but overall nothing overly successful with the treatment.  My doctors decided to monitor with routine MRI's again.  In July of 2015 I started feeling very run down and not very well.  I ended up having a double gran mal seizuire which put me in the hospital for a couple days.  MRI showed nothing obvious and a follow up MRI was scheduled for 3 months.  After 2 months, my concentration and memory started to tank and we moved up my MRI which showed growth again.  I had my second surgery to remove in December 2015.

Pathology of the second surgery revealed my oligo was now a grade 3.  Radiation was recommended.  Three people I know recommended that I have a consulation at MGH in Boston on doing Proton radiation there instead of standard radiation at my hospital.  I ended up doing it and just finished 6 weeks of proton treatments a couple weeks ago and have a follow up MRI this Friday.  They are likely going to recommend that I start a PCV chemo regimen at that time as well.  The treatments went fine.  The staff there was very good.  Side effects were basically fatigue and hair loss in the area. 

When I inquired for more information on proton therapy with my current doctors at the hospital that has done my surgeries, they did not give me specifics on it and said if interested I should go meet with the staff at MGH to discuss.  While they did not give an opinion outright, reading between the lines in the way they spoke to me made me believe that if it were their own personal situation that they would also be considering it.  Just call it a vibe they gave off.  They said nothing negative including the radiation oncologist.  My neuro-oncologist did give me a referral to go to MGH and that has been helpful with exchanging medical records, MRI results, etc. 

Please feel free to send me a message directly over this website to share more information.  Your husband is probably the closest match to my situation I have found so far.

Chris

MrBrightside,

My son was diagnosed with a grade 3 An Oligodendroglioma 3 weeks ago. A resection removed 97% of the tumor and in another 2 weeks he will start standard radiation and Temadar.

All of the research I have done on Proton radiation shows it to be a better treatment than standard radiation. There is less damage to brain tissue from Proton radiation.

Which type of radiation would you recommend and why? 

RE: Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

by MrBrightside on Sun Mar 26, 2017 12:42 AM

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Hailey120- I'm so sorry not to have responded sooner. I guess I did not have the box checked to get notified of responses. Oddly enough I have been in proton radiation treatment again for the other side of my head and will finish this week. I found out in December 2016 that although my original frontal lobe area is stable, that the tumor had 'likely spread' to my cerebellum and right frontal. They say likely because it only takes a couple cells to have already moved there even before I was treated last year originally. But they can't say for sure. So I started PCV chemo in January and then proton radiation in February. Considering the developments, I was probably lucky to be approved for proton again, but I was. My guess is your son has already started his radiation and temodar? I would be happy to discuss with you on the phone if you want to send me a private message. Overall the difference between standard radiation and proton is this... They both treat the tumor itself pretty much the same. However proton hits less collateral areas on the way in and out. The advantage in theory is less potential for other issues in following years because in essence the treatments themselves can cause additional problems or cancers. The brain and spine are two good areas to reduce these and it is ashame the technology is so expensive and in limited availability. I would always recommend anyone to get a proton consultation if possible. At the very least it is another opinion on your case. It only has advantages in some cases. Some insurances cover it, some don't, and some may take 4-8 weeks to decide if they will cover it.

RE: Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

by MrBrightside on Sun Mar 26, 2017 01:15 AM

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Tried to reply from iPad but doesn't seem to have posted.  This may result in a double reply...

Hailey120-
I'm so sorry not to have responded sooner.  I guess I did not have the box checked to get notified of responses.  Oddly enough I have been in proton radiation treatment again for the other side of my head and will finish this week.  I found out in December 2016 that although my original frontal lobe area is stable, that the tumor had 'likely spread' to my cerebellum and right frontal.  Discouraging news.  They say likely because it only takes a couple cells to have already moved there even before I was treated last year originally.  But they can't say for sure.  So I started with one cycle of PCV chemo in January 2017 and then started proton radiation in February 2017.  The proton radiation finishes this week and I will then pick up the PCV for another 6-8 months.  I did Temodar a couple years back but it didn't result in much of a change for me.  
I'm very sorry to hear about your son.  My guess is your he has already started his radiation and Temodar?  I would be happy to discuss with you on the phone if you want to send me a private message.  
Overall the difference between standard radiation and proton is this...
They both treat the tumor itself pretty much the same.  So one shouldn't expect that protons will be an advantage over standard radiation in the actual treatment results.  However proton hits less collateral areas on the way in and out.  The advantage in theory is less potential for other issues in following years because in essence the treatments themselves can cause additional problems or cancers.  The oligodendroglioma is dangerous but slower growing.  Treated properly and in good location, a patient can have many years left ahead of them with todays treatment options.  If you had to have a brain tumor, it would probably be one to hope for although I don't know them all.  I've had some setbacks with mine, but many do not.  
The brain and spine are two good areas to reduce these areas for collateral damage and it is ashame the technology is so expensive and in limited availability.  Some insurance may cover it, some may not, and some may take a month or two of paperwork from your doctors requesting that it be covered.  I would highly encourage anyone considering radiation to at least get a proton consulation if there is a facility that will see you.  At the very least, it will be another opinion on your case.  They may tell you there is no advantage to proton for you but at the same time they may give you more information on your case you never had.  Many people travel in from other parts of the country or even the world for treatment.  Some hospitals have charitable places to stay for free or reduced costs including meals.  Always be sure to ask if that is something that could make or break your decision to be able to afford the treatment.
Good luck to all.  Feel free to post additional questions here or private message me for more information.
Chris 

RE: Stage 3 Anaplastic Oligodendroglioma and Proton Radiation Therapy

by Melwat on Fri May 18, 2018 05:55 PM

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On Mar 26, 2017 1:15 AM MrBrightside wrote:

Tried to reply from iPad but doesn't seem to have posted.  This may result in a double reply...

Hailey120-
I'm so sorry not to have responded sooner.  I guess I did not have the box checked to get notified of responses.  Oddly enough I have been in proton radiation treatment again for the other side of my head and will finish this week.  I found out in December 2016 that although my original frontal lobe area is stable, that the tumor had 'likely spread' to my cerebellum and right frontal.  Discouraging news.  They say likely because it only takes a couple cells to have already moved there even before I was treated last year originally.  But they can't say for sure.  So I started with one cycle of PCV chemo in January 2017 and then started proton radiation in February 2017.  The proton radiation finishes this week and I will then pick up the PCV for another 6-8 months.  I did Temodar a couple years back but it didn't result in much of a change for me.  
I'm very sorry to hear about your son.  My guess is your he has already started his radiation and Temodar?  I would be happy to discuss with you on the phone if you want to send me a private message.  
Overall the difference between standard radiation and proton is this...
They both treat the tumor itself pretty much the same.  So one shouldn't expect that protons will be an advantage over standard radiation in the actual treatment results.  However proton hits less collateral areas on the way in and out.  The advantage in theory is less potential for other issues in following years because in essence the treatments themselves can cause additional problems or cancers.  The oligodendroglioma is dangerous but slower growing.  Treated properly and in good location, a patient can have many years left ahead of them with todays treatment options.  If you had to have a brain tumor, it would probably be one to hope for although I don't know them all.  I've had some setbacks with mine, but many do not.  
The brain and spine are two good areas to reduce these areas for collateral damage and it is ashame the technology is so expensive and in limited availability.  Some insurance may cover it, some may not, and some may take a month or two of paperwork from your doctors requesting that it be covered.  I would highly encourage anyone considering radiation to at least get a proton consulation if there is a facility that will see you.  At the very least, it will be another opinion on your case.  They may tell you there is no advantage to proton for you but at the same time they may give you more information on your case you never had.  Many people travel in from other parts of the country or even the world for treatment.  Some hospitals have charitable places to stay for free or reduced costs including meals.  Always be sure to ask if that is something that could make or break your decision to be able to afford the treatment.
Good luck to all.  Feel free to post additional questions here or private message me for more information.
Chris 

It is so interesting to hear stories that so closely resemble my own!  In 2007 I was jogging with my 15-month-old in a jogging stroller when I had a totally out of the blue, and terrifying grand mal seizure.  The mass was in my left frontal lobe.  I had a successful resection, found out it was a "mostly" grade II oligodendroglioma, and also had no follow up treatment at that time because the surgery was so successful.  Just monitoring MRIs and no symptoms for years.  Then in 2014 I started getting these infrequent focal motor seizures (just my arm shook, weird and unnerving, but I remained totally alert and able to go about my life).  I had 13 of them over 16 months and my doctors just kept increasing the dosage of anti-seizure meds I'd been on since the grand mal.  I was feeling very frustrated and discouraged.  I finally went back to my original, and awesome neurosurgeon who unfortunately doesn't work for the same organization any longer.  He agreed my MRIs looked Ok, but also agreed with me that something must be wrong.  So, he encouraged me to go back to my doctors and ask for more MRIs - a perfusion study and MRspectroscopy.  Those studies revealed what I'd feared and expected, the tumor was starting to grow again.  So, in 2015 I did 11 rounds of Temodar.  After the first 3 months there appeared to be improvement  but things just remained stable after that. 

I then had a couple of more years where things seemed OK and I went on with my life.  In January of this year, 2018, my routine MRI showed significant growth and, worryingly increased enhancement with contrast.  I was totally shocked because I'd had no symptoms and felt great.  I was told the new enhancing "node" could be safely removed surgically since it was growing into my resection cavity and not near healthy brain.  I would need to do follow  up radiation - which I vehemently refused in 2014, and more chemotherapy because it couldn't all be removed.  On February 9th I had that surgery and the surgeon proudly told my husband it was a "gross total resection" which confused us both initially, but then we decided he just meant of the "node".  I was floored and frustrated when he cancelled the totally standard post-op imaging.  He said it was because he was so confident he'd gotten, "everything he intended to".  Of course this left me with no way to see for myself, and nothing to take with me when I sought out other opinions about what to do next.  I was still hoping to get out of radiation, and confident my doctors didn't have access to whatever might be the latest and greatest treatment for oligodendrogliomas.

I learned, as you all know, that they still haven't come up with a magic bullet for this disease, or even a more targetted therapy, immunotherapy (I'd had my hopes set on that).  But, by consulting both MD Anderson and the Mayo Clinic (after getting an MRI and learning that I now had a grade III anaplastic oligo), I also came to learn that my surgeon had only removed part of the enhancing node - basically a biopsy.  And that other surgeons thought much more could be removed prior to adjuvant therapy.  It was very scary to carve more out, for sure!  But, to have less tumor in there to radiate made sense to me  and I found I had far more confidence in the surgeon at the Mayo than my doctors back home.  So, on Aprill 17th (just over a month after my first surgery - when I was just finally feeling OK again) I had another, more extensive surgery.  It went well, but it has been a very painful and slow recovery.  Now that I'm just finally starting to feel human, and able to swim, again.  I need to get on these decisions about what is next.  I'm still terrified of radiation - not the short term side effects, but the potential long-term ones.  The docs at the Mayo strongly encouraged protons over photons for ANY brain, but especially with my concerns.  My insurance company, that I'm going to get rid of as soon as I can, says no, absolutely not.  We have radiation we can give you, so that is what we'll do.  I'm very interested to hear about your experiences and how you, if any of you did, convinced your insurance companies to pay.  Mine wants a study that specifically shows protons are more effective than photons for my specific tumor type.  That isn't going to happen, certainly not in time to do me any good!  Also, I've had mixed advice about whether to to TMZ again (since it was effective) or if it is time to hit it with something new - PCV.  But, interestingly, doctors at MD Anderson, Mayo, and UCSF all agreed that the V (vincristine) adds a lot of toxicity, and unpleasantness - as it is the only IV medication in PCV - without really helping much.  So, they recommend PC only.  Just thought I'd mention it, might be worth asking your doctor about.

https://www.ncbi.nlm.nih.gov/pubmed/26408710

Melinda

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