What's your Oligodendroglioma story?

200 Posts | Page(s): Prev 12...14 15 16 17 18 ...1920 Next 

RE: What's your Oligodendroglioma story?

by MrBrightside on Fri May 13, 2016 07:24 PM

Quote | Reply

Hi Amy-

I just sent you a private message.  If you click on your username and then 'messages' on the left side you should be able to get it there.  Let me know if you don't.

Chris

RE: What's your Oligodendroglioma story?

by BobM1 on Tue May 17, 2016 04:57 PM

Quote | Reply

Well... I am in the beginning stage of my story. I am a 56 year old male in very good health. I work in construction!

Back on January 23, 2016, I had an accident in our shop with construction equipment, where I was struck in the head by an unknown object. I just happen to be working alone on a saturday, so I called my wife and father to assist me.

After they arriving, both agreed I should go to the hospital to get checked out. It was there the ER doctor ordered a CT scan because of the pain I had on the left side of my head. After the scan was completed, she came back into my room and told me, I had good news and bad news. The good news was I had broke a small cheek bone below my ear.

The bad news was I had a brain tumor located on the left side and handed me a picture of a mass growing in the left frontal lobe my head. Afterwards, I was thinking about the hand tremors I had, two weeks before the accident. I had about 4-5 of these before my accident. Last one, the day of my accident. My right hand would spasm for 1-1.5 minutes.

A biopsey was scheduled on January 28, 2016, which told me I had an Oligodendroglioma Grade 2 with 1p/19q co-deletions.  Removal of the tumor was scheduled for February 2, 2016. Date of my late sisters birthday who was killed in a car accident.

February 2 arrived and the neorosurgeon came to talk with me about my brain surgery and told me I was going to be awake for most of the surgery. He told me he could not get all of the tumor out, but he also wanted to keep what was me... still to me. He got about 60-75% out.

I was in post op and I had a hand tremor, got scared, and hand tremor lasted a few minutes. So they rushed me back to MRI to check for bleeds. It was there I had a second hand tremor. Never did I get one back to back. Because of my hand tremors, the neorologist put me on a second medication. I am on Keppra (750mg) and Vimpat (200mg).

Pathology report said the size of the mass, 4.5 x 2.7 x 3.1 cm.

Next I was to meet with a cancer specialist at St Lukes Hospital in Milwaukee. For the doctors of my local hospital to follow. My daughter in law a RN, bless her heart, wanted me to get second oppinion from Mayo Clinic. But my local hospital is where I wanted be, for my family to be able to come and visit.

I started chemo/radiation on March 21 for 27 days, weekday only. Chemo was 7 days a week. After the 27 days were finished on April 26. On May 6, my platelets went down to 14,000 and I had a transfusion. Got retested on May 9 and count was 16,000 and had another transfusion. Again tested on May 12 which the count was upto 25,000.

Yesterday, May 17, platelet count was up to 46,000.

I have been working with the neuro-oncolgist about my balance being off, as I am unbalanced and wobble as I walk. He said my brain is still swollen. So he increased my decadron up to 6mg AM and 6mg PM, as I was at 4mg. It seems to be helping now.

After what I read here, I told my wife, if I live to 75, ANYTHING OLDER IS A BLESSING!

RE: What's your Oligodendroglioma story?

by gregoryfarns on Tue May 17, 2016 05:43 PM

Quote | Reply
Thanks for sharing your story. My oligo is inoperable because of its location. I did 22 months of Temador and it shrunk the tumor some. I'm also on 750 of Keppra-had the same tremors you describe. Good luck with everything!

RE: What's your Oligodendroglioma story?

by BobM1 on Tue May 17, 2016 09:55 PM

Quote | Reply

I am taking 750mg Keppra and 200mg Vimpat twice a day.

After my platelets are back up, I hope around June 13, my chemo is to resume. I am to travel back to meet with Milwaukee specialist, a second time to make plans of my next treatment.

Doctor said I am to resume chemo with next session of Temador which is 6 months long.

Followed by 8 sessions of PCV, 6 weeks on, 6 weeks to off.

Is the viscritine drug better to get a port? Doctor said a IV.

RE: What's your Oligodendroglioma story?

by shariv on Fri Jun 03, 2016 05:26 AM

Quote | Reply

On May 13, 2016 6:51 PM Amyreda wrote:

On Nov 06, 2015 6:31 PM shariv wrote:

I found out in 2008 that I had an oligo II. I've had 2 surgeries, I did chemo/radiation after the 2nd surgery in 2009. Finished chemo in June 2010. The tumor started growing again in May 2011. I went on a hard core, whole food, plant based diet and juiced vegetables etc. Instead of starting a new chemo at my next MRI appt in Aug 2011, the tumor was stable. My last MRI was 10/26/2015 and it is still stable. Nothing has changed since Aug 2011! I thank God (and His food) for this.

There is so much information out there for you to read/watch. I love the movie Forks Over Knives. Joel Fuhrman has some good books (Eat to Live; Super Immunity etc).chrisbeatcancer.com has a lot of videos with people who have healed their cancer naturally without chemo and radiation. Chris "overdosed" on raw vegetable salads and juice and got rid of his cancer.

Take care! Praying for all of you!

Hi! I came across your story after searching for answers. My husband was recently diagnosed with Oligodendroglioma (double deletion) grade 2. Doctors are recommending chemo (Temodar) and radiation. One surgeon said absolutely don't do surgery because tumor is right next to motor strip. And another surgeon at cedars Sinai said they can do surgery but there may be some risks, but he could also hold off on surgery. No one is really pushing the surgery. Chemo and radiation are the recommended protocol. As is the Keto Diet ....have you heard of it?? Anyway, my husband is still uncertain as to what to do. Chemo is scary but then again, so is not taking a medicine that has shown to prolong lives. This is so overwhelming. We have faith in God and we pray. I see you do to. My husband the other day though that God probably doesn't want him to do chemo. Anyway, I'm writing to see how you are doing?! Have you had an MRI since your last one in October? Hope you're doing great! Please let me know! Thank you so much!! -Amy

Hi Amy! I'm so sorry I didn't reply earlier. I don't go on this website much. I'm sorry your husband (and you) are going through this. I'm happy that you are both praying and asking God what to do. Listen to what God tells you to do. He will get you through this. Did your husband decide to do the Temodar and radiation? 

I get MRIs every 8 months, so my next one will be the end of June. I feel great and don't have any symptoms. I knew God was telling me not to do chemo and radiation, but I didn't listen. I knew it was really bad and it would probably cause another type of cancer. My doctor told me it probably wouldn't decrease the size of the tumor or get rid of it, but they hoped it would keep it from growing. It started growing again 11 months after I finished the treatments. I can't go back and do things over again, but if I could, I wouldn't do chemo or radiation. 

After it started growing again in May 2011, my doctor told me we would discuss taking a different chemo if the tumor was still growing (he was pretty sure it would be larger) at my next MRI in August 2011. God gave me the info about eating a whole food, plant based diet. I started it in June, and the tumor has been stable ever since. In 2009, my doctor told me my life expectancy was 4-5 years since I don't have deletions. It's been about 8 years since I was diagnosed and 7 years since he told me. Don't listen to doctors about life expectancies. Everyone is different.

I've heard of the keto diet, but don't know much about it. There's a video on chrisbeatcancer.com that talks about how it's not a good diet for cancer patients. I eat raw vegetables, fruit, seeds and nuts. I juice vegetables and drink it throughout the day. I eat oatmeal with raspberries, cinnamon, chia seeds and coconut or almond milk. Don't eat sugar, processed foods, canola oil or any animal products. When I started eating this way, I was starving so I ate whole wheat pasta with sauce. It doesn't take long for your body to get used to eating this way. And it's so much easier! Just make sure he takes a B12 vitamin each day.

Keep praying and listening to God. Research cancer survivors online and see what they did to cure their cancer naturally. Watch the Forks over Knives movie - everyone needs to watch it! It explains how diet effects your health (not just cancer, but blood pressure, cholesterol, diabetes, weight, immune system, etc). Watch videos of people who have cured their cancer and read Chris Wark's information on his website www.chrisbeatcancer.com .

Don't feel overwhelmed with having to do all of this crazy, weird stuff that you read online. I did a lot of that in the beginning and it didn't work. I changed my diet, juice fresh vegetables and take a few supplements and that worked for me. Sometimes a person has too much stress, isn't getting enough sleep or exercise, is angry/unforgiving or works with toxic material. Everyone has cancer cells in their body. Eating the wrong things, stress, etc weakens the immune system. If the immune system isn't strong enough to fight the cancer cells, they will grow out of control. Also, don't bother asking the doctors about going the natural route. They either don't believe it or can't say they believe it.

I'm praying for your husband! He can still do this if he decided to do chemo/radiation. Tell him to keep praying, stay positive & picture the tumor disappearing. God still does miracles! Take care and if you have more questions, please ask. I will get back to you sooner next time!

Shari

RE: What's your Oligodendroglioma story?

by stringsofpurls on Thu Jun 09, 2016 05:22 PM

Quote | Reply

I was diagnosed In January 2015 with Anaplastic Oligodendroglioma G3with deletions. I had resection of the tumor, 33 days of treatment (temodar and radiation and am almost done with 18 28 day cycles of 5 day temodar doses. I live in Cincinnati and have been very pleased with my medical care. My neuro oncologist answers all my questions frankly and honestly. I have done well on treatment and overall except with some short term memory loss, extreme fatigue and homonymous hemaniopsia making me unable to drive. It has impaired my knitting, the reading of charts, etc. My doctor said that he will say I'm cured after 15 years. A previous  doctor told me she had a patient who has survived 20 years. He did say the "odds" were better than 50% that it would return, but also, that he thinks I will do well. I'm optimistic.

RE: What's your Oligodendroglioma story?

by vwxyz on Tue Jul 05, 2016 02:49 PM

Quote | Reply

has anyone heard what happened to jfuchs wife?  is she doing well? 

RE: What's your Oligodendroglioma story?

by shariv on Sat Jul 23, 2016 04:52 PM

Quote | Reply

On Nov 06, 2015 6:31 PM shariv wrote:

I found out in 2008 that I had an oligo II. I've had 2 surgeries, I did chemo/radiation after the 2nd surgery in 2009. Finished chemo in June 2010. The tumor started growing again in May 2011. I went on a hard core, whole food, plant based diet and juiced vegetables etc. Instead of starting a new chemo at my next MRI appt in Aug 2011, the tumor was stable. My last MRI was 10/26/2015 and it is still stable. Nothing has changed since Aug 2011! I thank God (and His food) for this.

There is so much information out there for you to read/watch. I love the movie Forks Over Knives. Joel Fuhrman has some good books (Eat to Live; Super Immunity etc).Chrisbeatcancer.comhas a lot of videos with people who have healed their cancer naturally without chemo and radiation. Chris "overdosed" on raw vegetable salads and juice and got rid of his cancer.

Take care! Praying for all of you!

I had another MRI at the Cleveland Clinic this week. The MRI showed no change again! It hasn't changed since 2011. I'm on no meds and feel great. I'm still eating a whole food, plant based diet. Thanking God! ???? FYI - the movie Forks Over Knives is on Netflix now.

RE: What's your Oligodendroglioma story?

by beentheredoneit on Mon Jul 25, 2016 07:14 PM

Quote | Reply

I haven't been in this site for awhile so I thought I give an update on my story as of July 2016...

 My tumor story started in April 2003.  I was returning from a business trip when I had seizure that caused a minor heart attack.  Spent a few days in ER doing tests and getting a heart stent… flew back to my home in about a week.   I had brain surgery in June 2003 where they could only remove about 40% of tumor (discussion with surgeon prior to surgery--minimize chance of impairment)… worked out fine only minor problems e.g., when I climb ladders… surgery/biopsy results: Oliogo type II/III left frontal lobe about a golf ball size… 1p/19 q deletion and later IDH mutations.  I took a wait and see attitude after the operation until starting the Temador treatment.     I  was on Temador for 23 months…from mid-2005 to mid-2007)…5 days on 28 off… 450 MG daily)— fatigue was only side effect… I took pills for nausea so that wasn’t a problem. In the summer of 2014 my tumor appeared to be changing so in Oct 2014 I had a second surgery… change to a type III Oligo (a higher Ki level)… but really nothing else.    Surgery techniques and technology has changed significantly in the 10 yrs between surgeries (e.g., MRI in the operating room) so they were able to get more of the tumor… pretty much all of it.  Also rather than a week in the hospital in 2003, in 2014 I was in on Friday AM and I was told I could leave on Sunday PM (actually left Monday…I wanted to see and thank my DR again).  As I had two years of Temador already (too much Temador can be toxic),  I did 33 days of Proton radiation…slight hair loss specific to area of radiation.   I turn 65 in a month or so and feeling fine…taking generic form of Lamictal (sp?)and Keppra for seizures…a 10 sec partial seizure where I can’t talk… about 1 a month… largely due to stress and still experience some fatigue… but still working part time.   I also take a blood pressure med and medicine for Type II diabetes. 

My next check-up is in Sept 2016 just before my 65th birthday… looking forward to a good birthday present.  I try to keep up on the latest research; the most interesting I’ve recently come across concerns the IDH mutations.  I am also in involved in clinical trials.

I am blessed with a great family, friends and doctors. their prayers, support and efforts got me to where I am today.

 

Take care all my best wishes to all of you.

 Tom

PS I am always wary of study statistics they can be misleading as your tumor may be effected by factors not considered in the study e.g., diet, other health condition, exercise etc… all tumors are unique and a study cannot consider all factors/variables and all variables may not be weighted equally (nor should they be).   They are also typically based on historic data and maybe patients without the benefit of new techniques e.g., temador study results are relatively new or present unresolved issues… see

 http://www.ascopost.com/issues/july-25-2013/management-of-an

A recent one I am now going through is below,

 http://www.uptodate.com/contents/management-of-anaplastic-ol

 If you have others pass them  along

RE: What's your Oligodendroglioma story?

by Metroman on Tue Dec 06, 2016 12:11 PM

Quote | Reply
I was diagnosed back in 1995, been through two surgeries and was lowered to just annual MRIs. After the last MRI they saw a large growth show up next to the area they had already removed. Within one year a 1.5mm x 2.7mm was found and they scheduled a surgery within a month. They removed all they could and are now putting me through Radiation and then Chemo to get all out of my brain. It's at MUSC (Medical University of South Carolina) and they are showing concern that I've been around for a while, but it has the chance of becoming stronger and a higher risk. Most all stories I've seen here show that everyone's cancers has stayed the same since first diagnosed, and am wondering if anyone has had their cancer change from what it was first diagnosed (benign). Dizziness, memory and some cognitive skills are definately more affected now then it was in the past, I can think and type well, but if I try to verbally answer questions, it can sometimes be impossible. My memories of the past are still perfect until after my first surgery which upsets my wife since I forget birthdays and anniversary dates. The VA at least gave me an IPod to help keep track of important dates and keep notes of things I need to remember. As for any info I search for, the only thing I can't find is how would someone pass away from the cancer. Would it be during a seizure, slow and calm passing while losing body functions , or any other way? Without that info, it's difficult to explain to my wife and kids what to expect and prepare them if something should happen.
200 Posts | Page(s): Prev 12...14 15 16 17 18 ...1920 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.