What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by MrBrightside on Wed Dec 07, 2016 04:48 AM

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Metroman,

Sorry to hear you are dealing with this.  I think we all have slight variations of our own stories we have dealt with which makes it really hard to compare from person to person.  My own personal story is oligodendroglioma grade 2 diagnosis after seizure and surgery to remove in 2010.  Temodar chemo in 2014.  Surgery again in 12/2015 and then proton radiation for 6 weeks in Boston this spring.  You mention the possibility of your cancer changing and this is true.  Mine changed from grade 2 after surgery in 2010 to grade 3 after surgery this past year.  Other changes are possible and don't forget that our treatments aren't exactly good for us long term either.  I don't hear my doctors using the terms benign or malignant much with oligos although they may have said benign after my first surgery.  However, they also didn't tell me it was very likely, if not guaranteed, to come back (which it did).  Looking at studies, I do see that the survival timelines for grade 3's are slightly lower than 2's although I'm told the same treatments are used for both.  After my last surgery and then radiation which was at a different hospital and team, I decided to stop beating around the bush with my doctors and ask them straight out what my outlook was.  I did this with my wife in the room because I wanted us all to be on the same page and not live in a fantasy world.  They all told us similar things such as there was no way to know for sure, however with current treatments there was not currently a cure but rather ways of prolonging life with surgery, chemo and radiation (all things I am very grateful to have had access to!).  In my case they said 15 years from original diagnosis would be considered lucky but certainly possible.  Again, we are all different in where our tumors are, at what stage we were diagnosed and treated and how, etc.  I was happy my wife and I were on the same page.  We told our daughters without making it sound like I was going to die tomorrow, because I wasn't.  It was quick and we didn't dwell on it, but at least we all knew what the big picture was.  

Regarding your symptoms now - I think these are different for all of us based on where are tumors are,etc.  I've had two major seizures and likewise surgeries after each for the most part.  I've dealt with tremendous loss of concentration and short term memory for several months after both.  To the point of feeling I was going mad.  It can be really scary.  Luckily things have come back for the most part, although less so after the second time.  I know I am not what I used to be and need extra rest to even be what I am.  I use the alarm on my phone constantly to remind me of things I would have never forgotten before.  

Regarding how people die from brain tumors - I don't know much about those with oligos.  However, I sadly lost my 83 year old mother in law just this year to a glioblastoma brain tumor (GBM).  She was diagnosed in January and passed away about 7 months later.  She was mostly chair and then bed ridden the entire time.  During the last 6 weeks she slowly began to sleep more and more.  Eventually she was only up maybe an hour or two a day and in the final week would only open her eyes occasionally and was unable to speak.  She would not recognize her own family at times but other times be fine.  Luckily she did not have seizures like many patients do.  She was heavily medicated on morphine.  She passed peacefully and likely not in pain.  The hospice staff was able to tell us within about 6 hours of when she would likely pass away and she did.

All I can say after witnessing the process with my mother in law is that I am now much more interested in the 'right to die' option that more and more states are adopting.  People deserve this option.  If and when I get to that point, I would like to go out on my terms and not put my family through the burden of care for those final months.  It was very hard on my wife's family.

Good luck and I wish you the best. 

RE: What's your Oligodendroglioma story?

by Metroman on Wed Dec 07, 2016 11:56 AM

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Thank you for the information you shared. It can be difficult to get clear answers from my doctors to fully answer my questions about life expectancy. I can understand they don't want to let people to over stress on information that is not simply black and white. Sometimes it can be more helpful from another persons personal experience instead of compiled data. I suppose the one good thing is that I know sometimes things can't change so I maintain a decent sense of humor and understanding in what's happening. I guess I could just say I should still be happy to enjoy each day since a person can pass from a simple car accident at anytime. I've had my questions around for years and your response is the most detailed explaination then I could get from any of my doctors. But I can understand they can't get a 100% answer that would apply to everyone, but they did sugar coat my questions more then I wanted. Again thank you, and I wish the best for you as well. Keeping positive is the only way to stay around longer then expected. Even if my doctors hate my sense of humor.

RE: What's your Oligodendroglioma story?

by MrBrightside on Sun Jan 08, 2017 03:24 PM

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The situation with my Oligodendroglioma has changed again so I thought I should give an update here which may be of value to others in the future.  Unfortunately mine has now spread to other areas of the brain which I will detail below as well as the new treatment regimen I will be on during 2017.

First a summary of what I have experienced and been treated with to date:

2010 Oligo discovery in left frontal after seizure and surgery to remove

2014 Progression discovered on routine MRI and treated with 11 months of Temodar (little to no improvement)

2015 Had another double gran mal seizure and surgery again to remove new growth.  Pathology showed my oligo was now a grade 3 instead of grade 2.

2016 Did 6 weeks of proton radiation at MGH in Boston

In December of 2016 I had my 3rd follow up MRI after the radiation which unfortunately discovered that while my original treatment area in my left frontal appeared unchanged, new growth has started in two areas.  First, I have minor growth in my right frontal lobe.  Second and more importantly I now have a tumor starting in my cerebellum also on the right side.  The cerebellum is responsible for your balance and I had actually started experiencing minor issues with my balance in the weeks before my MRI showing it.  I was going to report it to my doctor during our appointment after my MRI, but he actually brought it up first and then I told him.  He wasn't surprised at what I was experiencing based on my MRI results and my symptoms with that have since gotten a little worse (dizziness, minor nausea when moving around much, spinning sensation when closing eyes after lying down).

I got two opinions on my latest MRI results and both were similar.  While there is no way to know 100%, both doctors were quite confident these two new areas were not 'new' cancers but just very likely that cells from my original tumor had travelled through normal paths within the brain and then developed into new tumors.  Both doctors agreed that I needed to start treatment ASAP and that it should be both PCV chemo and radiation.  Since everything is now on the right side of the brain instead of the left, I can actually do radiation again.  The plan is for me to do one 6 week cycle of the PCV chemo (Lomustine, Procarbazine, Vincristine) starting this week and then switch to 6 weeks of proton radiation, and then 4 or 5 more cycles of PCV immediately following the radiation (depending how my body is handling it).

So that is where I am at now.  My long term outlook is not great.  The area in my cerebellum cannot be operated on so it is very important that these treatments work the best they can.  If I get the best possible results from them, I'm told that I have probably 6-8 years.  Poor results would mean less.  I continue with high spirits around my family and friends though.  I think that is important.  

RE: What's your Oligodendroglioma story?

by Metroman on Sun Jan 08, 2017 04:11 PM

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On Jan 08, 2017 3:24 PM MrBrightside wrote:

The situation with my Oligodendroglioma has changed again so I thought I should give an update here which may be of value to others in the future.  Unfortunately mine has now spread to other areas of the brain which I will detail below as well as the new treatment regimen I will be on during 2017.

First a summary of what I have experienced and been treated with to date:

2010 Oligo discovery in left frontal after seizure and surgery to remove

2014 Progression discovered on routine MRI and treated with 11 months of Temodar (little to no improvement)

2015 Had another double gran mal seizure and surgery again to remove new growth.  Pathology showed my oligo was now a grade 3 instead of grade 2.

2016 Did 6 weeks of proton radiation at MGH in Boston

In December of 2016 I had my 3rd follow up MRI after the radiation which unfortunately discovered that while my original treatment area in my left frontal appeared unchanged, new growth has started in two areas.  First, I have minor growth in my right frontal lobe.  Second and more importantly I now have a tumor starting in my cerebellum also on the right side.  The cerebellum is responsible for your balance and I had actually started experiencing minor issues with my balance in the weeks before my MRI showing it.  I was going to report it to my doctor during our appointment after my MRI, but he actually brought it up first and then I told him.  He wasn't surprised at what I was experiencing based on my MRI results and my symptoms with that have since gotten a little worse (dizziness, minor nausea when moving around much, spinning sensation when closing eyes after lying down).

I got two opinions on my latest MRI results and both were similar.  While there is no way to know 100%, both doctors were quite confident these two new areas were not 'new' cancers but just very likely that cells from my original tumor had travelled through normal paths within the brain and then developed into new tumors.  Both doctors agreed that I needed to start treatment ASAP and that it should be both PCV chemo and radiation.  Since everything is now on the right side of the brain instead of the left, I can actually do radiation again.  The plan is for me to do one 6 week cycle of the PCV chemo (Lomustine, Procarbazine, Vincristine) starting this week and then switch to 6 weeks of proton radiation, and then 4 or 5 more cycles of PCV immediately following the radiation (depending how my body is handling it).

So that is where I am at now.  My long term outlook is not great.  The area in my cerebellum cannot be operated on so it is very important that these treatments work the best they can.  If I get the best possible results from them, I'm told that I have probably 6-8 years.  Poor results would mean less.  I continue with high spirits around my family and friends though.  I think that is important.  

Seems as if mine is about the same. The first seizure though started back in 1995. They did the initial biopsy, and the siezures continued once a month or so. After being released from the military I continued treatments through the VA. Basically every 6 months I went through MRIs and then MUSC (Medical University South Carolina) decided to simply try to remove as much of it as possible in 2008, of course being forced to leave some still there since it was showing as it being Level 2 (forget the real title). After the surgery it was mostly removed and seizures slowed down. Been like that with the expected issues like memory, speech, and the ability to say what I intend on saying. Emotion has also been affected with anger taking over faster then it used to. Had that huge growth happen within one year and went through surgery within one month of the find. Just finished radiation and going through chemo in 3 weeks. And MRIs are going to run every 2 months now to watch how things go. I can totally understand what you can be going through, and I hope you are taking it as I do. It's not a thing we can fix, so I personally take all things as a joke as best as I can to retain my mentality of surviving, no matter what they say. They are even understand that mentality, even if I ask them if they graduated with a "C" grade average. The also did my request if sending the photos from the surgery so could see what they did. I was lucky though, I didn't realize I said I was pissed that I was naked on the table, but the nurses were dressed. So glad I don't remembering saying that, kept me out of trouble. Well, I hope things get better for you and everything stops where it is, or simply disappears. But remember, we can never change whatever happens to the human body. Survive, laugh, and love while you are here. And always think you can do all to prove the Drs wrong!

RE: What's your Oligodendroglioma story?

by Lingg95 on Wed Jul 26, 2017 10:21 AM

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Hi, I know this is an old thread but my partner was diagnosed with garde 3 oligodendroglioma last year. He had numerous MRI scan last year then surgery 25/04/16 to remove as much as possible if the tumour which was in the right side of the brain. We were then given the diagnosis and he started a course of radiotherapy (once a day for 5 days a week for 6 weeks). He tolerated this well only having lost his hair in places tired and mood swings. Almost instantly after started PCV Chemotherapy again he tolerated this really well his hair started growing back he wasn't sick just tired . Which he had 5 rounds of. All MRI scans showed massive reduction in tumour size and everything was looking great, until march 27th 3017 when he had a seizure. He was started in levitiracitem and had an MRI, the MRI apprently showed no sign of growth but 3 months later another MRI showed massive re growth towards the left side of the brain. He has now been started on Palliative Temozolomide which makes him very sick. Doctors say we should be worried about the speed of the tumour growing back t they will know more after the next MRI in 3 months time. Has anyone else got any experiences or comments they have regarding this?

RE: What's your Oligodendroglioma story?

by Metroman on Thu Jul 27, 2017 04:55 PM

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On Jul 26, 2017 10:21 AM Lingg95 wrote:

Hi, I know this is an old thread but my partner was diagnosed with garde 3 oligodendroglioma last year. He had numerous MRI scan last year then surgery 25/04/16 to remove as much as possible if the tumour which was in the right side of the brain. We were then given the diagnosis and he started a course of radiotherapy (once a day for 5 days a week for 6 weeks). He tolerated this well only having lost his hair in places tired and mood swings. Almost instantly after started PCV Chemotherapy again he tolerated this really well his hair started growing back he wasn't sick just tired . Which he had 5 rounds of. All MRI scans showed massive reduction in tumour size and everything was looking great, until march 27th 3017 when he had a seizure. He was started in levitiracitem and had an MRI, the MRI apprently showed no sign of growth but 3 months later another MRI showed massive re growth towards the left side of the brain. He has now been started on Palliative Temozolomide which makes him very sick. Doctors say we should be worried about the speed of the tumour growing back t they will know more after the next MRI in 3 months time. Has anyone else got any experiences or comments they have regarding this?
Mine was originally diagnosed in 1995 and I've been through 3 surgeries ( first a biopsy, then a "take what we can out" surgery, and finally this last September when a growth the size of a quarter grew within a year. Did radiation and now in Chemo (pills only, couldn't handle the IV). They watch me every two months through MRIs and haven't seen a change yet. They are watching for a location that there is some there, but it was too dangerous to move. I asked my Neurologist simply how long will I live, and he gave me the median of 13 years, but didn't clarify if it was after the last growth or applied when it was first discovered. I see them every 2 weeks, so I'll ask that when I get there. And with the chemo, I hate those weekly blood tests. But I guess I'm lucky since the VA pays me $20 for each trip to the hospital for treatments. I hope your partner gets good and successfully proves the Drs statistics are wrong!

RE: What's your Oligodendroglioma story?

by Lingg95 on Thu Jul 27, 2017 10:24 PM

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Wow 95 was the year I was born so that amazing that you're still here to tell the tale 21 years on. I hope it stays that way for you. Your story sounds so positive. My partner phil only had 1 surgery and we've been told it's too dangerous to do another surgery. We've also been told that the chemo he is on is his last option so fingers crossed that it keeps the growth at bay. Do you know much about why they refer to his plan as 'palliative temozolomide' Does this mean he is on end of life care or is there another meaning to this? Phil hates the blood tests too, he never used to be bothered by needles but after a bad experience of a student nurse pulling his cannula out too slow and blood gushing out he has became more and more intolerant of them. I'm not sure what you mean by VA I think we're lucky that we have the NHS who do everything for free and he has a medical exemption card so he doesn't have to pay for prescription.

RE: What's your Oligodendroglioma story?

by shariv on Fri Jul 28, 2017 04:45 PM

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On Jul 27, 2017 10:24 PM Lingg95 wrote:

Wow 95 was the year I was born so that amazing that you're still here to tell the tale 21 years on. I hope it stays that way for you. Your story sounds so positive. My partner phil only had 1 surgery and we've been told it's too dangerous to do another surgery. We've also been told that the chemo he is on is his last option so fingers crossed that it keeps the growth at bay. Do you know much about why they refer to his plan as 'palliative temozolomide' Does this mean he is on end of life care or is there another meaning to this? Phil hates the blood tests too, he never used to be bothered by needles but after a bad experience of a student nurse pulling his cannula out too slow and blood gushing out he has became more and more intolerant of them. I'm not sure what you mean by VA I think we're lucky that we have the NHS who do everything for free and he has a medical exemption card so he doesn't have to pay for prescription.
I'm sorry Phil is dealing with this. I know how hard it is. I was diagnosed in 2008 with a grade 2 oligodendroglioma the size of a softball. I had surgery then & again in 2009. In 2009, it was a grade 3 so they told me to do 6.5 weeks of radiation & 6 months of chemo (temodar). I didn't have deletions so they gave me 4-5 years to live. It started growing again in May 2010. My doctor told me I would need to start a new chemo if the tumor was larger at the next MRI. God gave me multiple signs to eat a whole food, plant based diet. He and the diet kept my tumor from growing. It hasn't changed since May 2010. I just had an MRI at the end of June. Watch the movie Forks Over Knives and check out chrisbeatcancer.com . Read Eat to Live by Joel Fuerman (sp?). Search online for people who have cured their cancer naturally. There is a lot of information. Don't lose hope. The doctor said it's his last hope or chance. It's not! If you have questions, please ask. Take care & I'll pray for Phil. Shari

RE: What's your Oligodendroglioma story?

by Metroman on Sat Jul 29, 2017 05:16 AM

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Shariv, The VA is for Veterans Administation. Despite all the stories, they are awesome. And for some of your questions I'll ask my Dr. since I see them this Monday and are interrelated what the phrase stands for.

RE: What's your Oligodendroglioma story?

by Metroman on Sat Jul 29, 2017 05:30 AM

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Sorry, addressed to the wrong person. ??
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