Anyone dealth with Oligodendroglioma III

cdavis07 said:

Thank you
Hi Stacey, Thank you for sharing your experience with me. I know little about the oligo so far but I will tell you what I know. It is a good prognosis vs other tumors out there. Originally my husband was diagnosed with an Astrocytoma II so an Oligo III was good news. The oligo's, esp a II are slower growing and don't spread the same way other tumors spread. They are more generalized and react very well to chemo. I didn't notice a chemo treatment that you are on. Kinds suprised they had you do radiation since deletions were present. Today we actually found out that my husband has deletions as well so his treatment for now is only the chemo, Temodar. If you are not on chemo please talk to you doctor about it. The problem with brain tumors is that there is very little research on them, esp Oligodendrogliomas. All I can say is keep researching. I go on the web everyday to get more info and even joined this website to locate others like my husband. It is very scary and it is good you have family and friends around you. I would love to keep in contact with you. We live in NJ. I am going to my first support group meeting Oct 2nd and I was told there is a women there also with an Oligo and has been doing quiet well over the years. If she has any info I will send it your way. Whatever you do, think positive. Positive energy will get you through this. I'm sure it's easier for me to say since it is my husband with the tumor but I worry everyday as to what time I have with him. And I say I will have him Forever! And if I don't well I know that I will make every moment count and be wonderful. I plan to make his love amazing no matter what the lenght is. My husband was only diagnosed 3 yrs ago and until recently I didn't really know much. I know even less now since it is a different tumor all together. But I am determind to learn all there is to. I hope this finds you doing well. Catherine

Catherine,
My husband also
Catherine,

My husband also has Oligo, Stage 2. Was diagnosed 6 months ago after we had only been married 3 months. My husband had two crainotomies in June and went from 4.8cm to 5mm. We have an MRI on Oct 4th. Then they will replace his bone flap (out because of infection). Then we will either start Stereotactic Radiation or Temodar. He does have the deletions also.

I also try to make every moment count. My husband has a great, positive attitude. It is me who has/is consumed by this. Put on a good show for kids and friends however. We live in GA.

Started a Caringbridge website for my husband (and me) as it keeps all family and friends up to date.

You said your husband has had this 3 years? Has he had Temodar or surgeries? Has it shrunk? My husbands is on the left frontal lobe.

Think support group idea is great!

cindysuetoyou said:

Oligodendroglioma III
My 26 year old son was diagnosed with an Oligodendroglioma III on May 15, 2009. He had a total resection of the tumor...also on his left frontal lobe. We were initially told that it looked like a benign tumor and no further treatment was necessary. They called us back to the dr office a week later when they got the pathology report and told us that David had 3 to 5 years. We were all beyond devastated. He did not have the gene deletion. So...David did the standard 6 weeks of chemo/radiation, and now he does chemo (Temodar) 5 days, then has 21 days off. He feels pretty sick when he is doing the chemo, but overall, he's doing great. Working, going back to college, working out at his gym, doing things with friends and family, just going on with his life.

David has MRIs and oncology checkups every 3 months. His next one is on 10/30--a week from today. The appts are tough, but we are getting through them. The dr says that his MRIs keep looking better and better because the surgery area (scar tissue in his brain) keeps healing and getting smaller. At this point in time, there is absolutely no sign of any tumor. Thank God.

I totally believe that God has had His hand on David and that is what is making the difference for David. I pray every night for God to continue to heal David and I thank Him that David is doing so well. David has an amazing attitude and he's very strong. He said that he just does not believe that he is going to die anytime soon, and that he does not want cancer to run his life and define who he is. I think his strong, positive, fighting mental outlook has helped him to stay healthy.

I hope that my note has helped you a little, at least. You might want to read the other posts on my question about the life span for people with Olig III. There were some amazing, extremely encouraging posts there.

Stay strong, fight hard! Love, blessings, and peace to you,
Cindy in Salem, OR

David's MRI
Just wanted to update you all...David's MRI was totally clear. No tumor, no changes. We are thanking God with all of our hearts!

If this can happen for us, it can happen for you all too. If you would have heard the original diagnosis, you'd know why we feel like this is a miracle. Just proves to me that the doctors are men, not God, and no one knows the span of a man's life...except God.

Love and peace and strength and blessings to you all,
Cindy in Salem, OR

cdavis07 said:

So awesome to hear!
Cindy I am so happy for you and your family. I believe too that God watches over us and miracles do happen. Hearing great news like this reassures me that they is always hope. My husband just finished his first 5 days of Temodar. Did pretty well. Never got sick but felt sick at times. We were told he would be on the Temodar for at least 1 yr. Is David still doing the Temodar for a little while?

Catherine

Hi, Catherine.

Thank you for your message. I really appreciate your being happy for us. It's funny....I just walk on air after a good report and nothing bothers me....not my car breaking down, not losing my keys, not dogs having nasty messes in the house, not having things go wrong at work....I'm just so happy that nothing else matters. We go three months between MRIs and it feels like we have a year before we have to face it again.

About Temodar...when we first talked about treatment options, the dr told us that Temodar was something that was taken for a maximum of two years, and David would take Temodar until he died or the tumor grew back, whichever happened first. Our dr doesn't waste time sparing our feelings, I guess. Now I don't know if I misunderstood him or what.....

While doing research, I started getting more and more concerned about the side effects of long-term chemo treatments, and I called the dr and asked how long David would be on Temodar. He then said that he had patients whom he kept on Temodar for as long as four years. So I don't know if I misunderstood something...it was a stressful time when we were discussing treatment options. But I think that they didn't expect David to live long enough to bother thinking about when he'd be done with Temodar. But since he's doing well, now they are saying 4 years.

I'm conflicted about four years. David says that when he's taking Temodar, he can feel a difference in how he thinks, etc. He can't remember stuff. He works for Apple, and he will be telling a customer about a certain type of software, or about a computer, and he will totally lose his train of thought and won't even remember what they were talking about. And he's taking college classes, and when his work is hard and he's not sure what the question is even asking, he gets very anxious to the point of nausea. This is totally out of character for David.

However, he is still our family's computer expert, and he's totally articulate, and he's beating me all the time at Scrabble, and I'm darned good at Scrabble, if I do say so myself! So it's not that bad...

We decided that we wanted to fight really, really hard, with every weapon at our disposal, and if it means some memory loss, some nausea, etc. it is worth it to totally annihilate any lingering little microscopic cancer cells that our oncologist assures us are still there. (Encouragement is not his forte'.) So we are in it for the long haul...as long as David can stand it, and as long as his bloodwork etc. stay good like they've been so far.

While David is on chemo, he is sick to his stomach, bloated, has significant headaches, memory issues, he's really constipated and bloated, and he has really bad insomnia to the point where he's almost not able to work or think clearly. He takes Oxycotin for the headaches, a bunch of different things for the constipation, Adderall for the memory and focus issues, Ambien for insomnia, Lorazipan for something...I think insomnia too....all this for a man who never would take even an aspirin.

We noticed that it seems like Temodar is a little easier to take if David gets some exercise and also if he keeps really busy and he's distracted. He just moved up to Portland (Oregon) to go back to college. He'd finished at his community college right before he was diagnosed, and he put off going to the university for a year while we were in the midst of all of this. So now he's at Portland State University. He started classes and moved and had the MRI and dr appt all during his chemo cycle. I thought it would overwhelm him but he had one of his easiest cycles this time. He thinks it really helps to be mentally distracted. We have noticed that not all the cycles are the same. Some are not so bad, some are a little harder. But overall, we feel extremely blessed that Temodar is the chemo of choice. There's other chemos that make Temodar seem like a walk in the park. I'm especially grateful that we do not have to deal with ports, IVs and hospital stays, though who knows...that could be in our future yet. But I'm praying that it won't be. But if it is, we will continue to fight. I've read that 90% of survivors go thru two or more recurrences but they battle and fight thru it. No one wants a recurrence, but if it happens, it means we fight with a different weapon, from a different angle. We won't give up.

Sorry I am so long-winded. It's just so much on my mind......I hope I've helped you even a little. I will be praying for you and your husband....grace, peace, strength, HEALING, and hope to you and your husband!
Cindy in Salem, OR

PS Our dr. (mr. negativity) told us that in all the years he's prescribed Temodar for his patients (and he has a huge amount of patients), that he's never, not one time, seen a secondary cancer, like leukemia, from using Temodar. That's so good to know!

Woodsymom said:

MRI review 10/27/2010
My son Loren, his new wife, father-in-law and I are going to the radiation oncologist office tomorrow to review his recent MRI. I am praying for NO TUMOR. The radiation oncologist said he was going to obliterate it....so we will see if that happened. Stay tuned... Loren and Leigh have been enjoying their new married life even though somethings have been put on hold. Little to no symptoms from radiation. Some minor aches and pains and headaches. God has kept us all quite calm and happy through this process. I pray the consultation tomorrow will be AMAZING!

My husband has oligodendroglioma/astrocytoma grade II/III
In June of 2006, my husband was diagnosed with a grade II oligodendroglioma/astrocytoma with borderline 1p 19q deletion. There was evidence that some cells were of a more aggressive nature. He had his resection in July and the surgeon felt very positive about the surgery saying that he was able to remove what he could see of the tumor. His turmor was in the right parietal lobe. Mike, my husband, recovered well from the surgery but it took a good year before he felt like he was back to "normal." He does suffer from mild headaches throughout his day and needs to take a "brain rest" when he gets home from work. The doctors did not prescribe chemo and radiation because they consider this to be a slow growing type of tumor. They continue to monitor a small area in the margins of the surgical site. A year and a half ago, his neuro oncologist noticed some changes in the scans and sent us to talk to the radiation oncologist. The radiation oncologist was not convinced that it was tumor growth but thought it could be scar tissue. The consensus was to wait as they still believed this to be slow growing. We saw another radiation oncolgist in the city where we live and he was very encouraging. He spent over an hour talking to us about diet and exercise and how important these were to my husbands survival. Mike changed his entire diet and is exercising regularly. He is doing great. He feels better, lost 20 lbs and is able to handle more of the work day than when he started. His neuro oncologist has not been encouraging about any of this but we are going on 5 years of stable reports on the tumor. I believe that with much prayer and with Mike's diligence with his healthy regiman he is a survivor. The neuro oncologist said that the survival rate for this type of tumor is 5 years.

Brenday said:

My husband has oligodendroglioma/astrocytoma grade II/III
In June of 2006, my husband was diagnosed with a grade II oligodendroglioma/astrocytoma with borderline 1p 19q deletion. There was evidence that some cells were of a more aggressive nature. He had his resection in July and the surgeon felt very positive about the surgery saying that he was able to remove what he could see of the tumor. His turmor was in the right parietal lobe. Mike, my husband, recovered well from the surgery but it took a good year before he felt like he was back to "normal." He does suffer from mild headaches throughout his day and needs to take a "brain rest" when he gets home from work. The doctors did not prescribe chemo and radiation because they consider this to be a slow growing type of tumor. They continue to monitor a small area in the margins of the surgical site. A year and a half ago, his neuro oncologist noticed some changes in the scans and sent us to talk to the radiation oncologist. The radiation oncologist was not convinced that it was tumor growth but thought it could be scar tissue. The consensus was to wait as they still believed this to be slow growing. We saw another radiation oncolgist in the city where we live and he was very encouraging. He spent over an hour talking to us about diet and exercise and how important these were to my husbands survival. Mike changed his entire diet and is exercising regularly. He is doing great. He feels better, lost 20 lbs and is able to handle more of the work day than when he started. His neuro oncologist has not been encouraging about any of this but we are going on 5 years of stable reports on the tumor. I believe that with much prayer and with Mike's diligence with his healthy regiman he is a survivor. The neuro oncologist said that the survival rate for this type of tumor is 5 years.

Brenday--
Glad your husband
Brenday--

Glad your husband is feeling great!

My husband was diagnosed about 10 months ago. Oligodendroglioma II, after resection surgeon thought maybe 5mm was left behind as too dangerous to remove. However, past two MRI's aren't showing tumor. MRI is in a week (3 month one) and we "may" start Stereotatic Radiation regardless.

I am going to inquire why we don't do Temodar instead as my husband has the deletions too.

My question is regarding this phrase
-- The neuro oncologist said that the survival rate for this type of tumor is 5 years.

What do they mean??? Is this after the surgery??

No one will give us any "numbers".

Thank you,

Carrie

cindysuetoyou said:

Hello
Hi, Carrie.

I am the mother of David, a 27 year old man (my son whom I love so dearly) who had a grade III (anaplastic) oligodendroglioma resected in May of 2009. I think we have posted to each other on other topics.

Our oncologist told us what I believe is the standard protocol for oligodendrogliomas: we could pick Temodar OR radiation. He said that there were pros and cons to both. He went over all of them with us and I knew it was going to be a tough decision. However, we did not have to make that decision because when we got the FISH report back, it showed that David's tumor did not have the gene deletions, and therefore would be less sensitive to chemo. Our doctor then said that he STRONGLY recommended that we do BOTH chemo and radiation.

So...we went to get a second opinion from Fred Hutchinson in Seattle. Their dr said to pick one treatment or the other, not to do both, because later when there was a recurrence (not "if"--thanks a lot!), we would have already used up both of the best weapons. We were totally at a loss about what to do. We went back to the original dr and he said that there were other options after Temodar and radiation, and that he REALLY felt that we should do both. He said that they were synergistic...they each amplified the effects of the other. So...we got a third opinion from UCSF (University of California San Francisco). They agreed with doing both. So we that's what we did.

I had the impression that the only reason it was recommended that we do both was due to the lack of the gene deletion. I don't think they would have pushed for both treatments if David had the gene deletions.

About the five years thing...that was the first thing that they told us too. 3 to 5 years. I begged the dr to tell me if anyone had gone longer than 5 years...7 years? 10 years? He said it could be two years. I felt that he was pretty brutal. But maybe he wanted to get the worst over and thought any news after that would sound good? I don't know. But it took me over a year to recover. I cried every day for a year. But....my son is doing really good. He just had his regular 3 month checkup and MRI yesterday, and it was all clear, with no sign of any tumor---old or new! We are thanking God!

I believe this: the doctors look at statistics and they make estimates but they do not KNOW the outcome or the date. God has His own plan, and I'm trusting in Him.

I've read survivor stories and I've heard from people who were given worse prognoses than David's, and they have beaten the odds and are still here and thriving. I refuse to accept any time frames from the doctors because, truthfully, they just do not know. In the meantime, every day, every week, every month is in our favor. We make sure that we say positive things and don't hash over and continually discuss the bad stuff. My son has been very firm that cancer will not be his identity and it will not take over his life. My motto is to fight hard, pray hard, and hold on to hope hard!

Blessings and peace to you,
Cindy in Salem, OR

Cindy,
So beautifully said.
Cindy,

So beautifully said. I love that our Duke doctors don't talk statistics. No one knows about that.

I love your son's spirit and determination. Sounds like he's got a champion of a mom on his team!

Kim in GA