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Anaplastic Oligodendroglioma recurrence

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

We've had a really horrible week. David had two seizures--we suspect grand mals but they happened when he was alone (sleeping both times) so we don't know for sure how bad they were. He had one on Saturday, 7/2, and another one on Thursday, 7/7. Both times he bit a large chunk out of his tongue and it's really painful. After the second one on Thursday, our NO told David to go to the ER. He went in and they did an MRI which showed "disease progression." Translation: tumor growth. There's a significant amount of contrast showing in the original location and also a small spot on the other side of David's brain.

We are devastated. It was shocking to see the last MRI taken only 3 months ago, side by side with the new one taken on Thursday. The was a big difference. We are very, very frightened.

We met with the NO and part of his team on Friday. We are done with Temodar. Our NO said that it is no longer effective. David will go to OHSU (Oregon Health Sciences University) on Tuesday for a 2 hour scan to rule out radiation necrosis. Our NO is sure that it is not radiation necrosis, but he wants to confirm it. Also this 2 hour scan will show the exact location of the blood vessels and that will help with pinpointing the delivery method for the new chemo that David is going to start taking.

On Wed. we will go back to OHSU and have a comparison scan done, along with xrays, bloodwork, and some other tests. They will admit David into the hospital on Wednesday. On Thursday, David will go under general anesthesia and they will put a port in his chest and run a catheter into his femoral artery. I'm a little sketchy on the next part, but I believe they will put mannitol into his femoral artery, which is the agent that causes the disruption in the blood brain barrier. Then they will put 3 different chemos into his port. The dr. said that they will be in and out...I believe it takes about ten minutes to deliver the mannitol and the chemos. Then while David is still under anesthesia (the kind where you are awake and conscious but you don't remember anything) they will give him a drug that will prevent hearing loss caused by the chemo. This will save his hearing but will make him violently nauseous and vomit for 10 to 15 minutes. Then he will go back to his room for the night. The next day--Friday--it will be the same thing all over again, but on the other side of his body to target the other half of his brain. David will have a steroid shot to help close the blood brain barrier, then a shot of a human growth hormone to help with his white blood cell count. Then he may or may not have an infusion of platelets. That will depend on how he handles the chemo. Hopefully he will get to go home on Saturday. Saturday is his 28th birthday.....

This treatment is a clinical trial called the Blood Brain Barrier program. Our NO has been working on this for 25 years. He said that he thinks it will help David. He said that David is young, in good health, with no deficits, and that is all a big positive in his favor. He also said that it might not work either. There's no guarantee....but then he said that he thinks it will work. That's pretty huge to us because he's not much of an optimist. We will repeat this chemo treatment protocol every four weeks for a year. Funny how a year sounds like forever when you are talking about chemo treatments but sounds like nothing when you are talking about life expectancy...

Our NO also said that we are not talking about a cure here....I cut in and said that we know that....that our goal has always been "management and containment" with the hope that something new will be discovered that will help even more, or maybe even a cure will be found. And I said that we are praying for a miracle. He said that we all want a miracle. I didn't want to be rude so I didn't say what I was thinking....he may want miracles...but we BELIEVE in miracles. Big difference. I don't know what will happen with David, and I am scared, sick, and broken hearted...but now is not the time to stop trusting in God. So we are digging in for the battle ahead and we are praying hard, loving hard, and holding on to hope hard.

Please remember David in your prayers. He is very strong and brave and positive but this really has been devastating to him. I love him so very much and I would gladly give up my life for him to be well and healthy. But life doesn't work that way....

Love and blessings,
Cindy in Salem, OR

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

I sure am sorry to hear about this recurrence and i hope the very best for him and all the caretakers.
I actually hope that it is radiation necrosis, because that CAN be handled and it dosen't sound like he has been cognizantly affected.
So, the avastin would take care of any necrosis.
Lets hope that is what it is...
Sounds like you have a good crew working on him..

Daniela4362
Posts: 1
Joined: Jul 2011

David and your family are in my prayers Cindy. xoxo

BabsOregon
Posts: 30
Joined: Jun 2011

I am hoping that your son's condition has improved by the time you read this. I am thinking of you. Take care of yourself.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your comments and prayers and thoughts.

What a terrible week. To the surprise of our NO and to the shock of our family, we found out the day before David was to start the new clinical trial--the insurance denied it. We were stunned and devastated. We don't understand how an insurance company can refuse to cover treatment that a patient's doctor prescribed and believes it to be the very best option for the patient.

Our doctor's team appealed the decision and we will know hopefully by Wednesday if they will cover David's treatment for the clinical trial. In the meantime, we are praying and trying to contact advocacy groups etc. It's been like a nightmare for us. David is holding up well---very strong and brave, but he is scared. We all are. We are terrified that the tumor is growing while we wait on the insurance company to make a decision....

We are trusting God and hanging on to hope. Please pray for us.

Love and blessings,
Cindy

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

I am sorry this is happening to you. I know if it would happen to us, I would be ENRAGED.
Nobody should go through not only the stress of this disease, but also the stress of listening to some marginally educated insurance person, eating a twinky behind a partition someplace,telling you that you cannot have the treatment your doctor prescribes.
That is infuriating and I hope they change their decision on this.
This is the horror story that everyone who has a loved one with or has themselves a CATASTROPHIC illness fears.
I sure am sorry...I can't believe that tehy will not reverse this decision.

sadinholland
Posts: 238
Joined: Apr 2011

I am so sorry to hear what you are going through. I had a misunderstanding about clinical trials. I thought if you went on a trial it was no cost. I will CONTINUE to pray for David and your family.

Beckymarie
Posts: 358
Joined: Aug 2009

I too thought clinical trials were of no cost to those who participated. My husband was presented with several clinical trials when he was diangosed with a GBM. It was my understanding the treatment was at no cost.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Yeah, I thought clinicals were free to the "guinea pig" that they did the clinical to. But not this one. When we first made the decision to stay with this dr and OHSU, we specifically asked about clinicals and if David would be able to participate in the blood brain barrier disrupter clinical, and if our insurance would pay. I can't swear to it and of course I don't have anything in writing but I feel like I remember them saying that David would qualify and it would be free. Now they say that there are no funds left. I am dumbfounded.

I called the ins. company again today and was told that they had not made a decision yet. I spoke to several people and they all felt bad for me since I was obviously very emotional. But they said that they can't tell me anything because no decision has been made. I asked what would it take to get them to make a decision---did I need a lawyer? No, they will tell me in the next few days. In the meantime, my son has an active, growing tumor. I finally broke down and got off the phone and flung myself on the floor and cried my head off for a while. I prayed about it and I finally got up and wiped the tears off my face and went about my day. It wasn't easy but I did have peace in my heart.

It's my birthday today. I've had better ones.

Love and blessings,
Cindy

huxley2006
Posts: 25
Joined: Oct 2010

There are numerous good clinicals going on throoughout the US (at the major brain tumor centers) that he may well qualify for. Have you checked the Sloan Kettering, UCLA, MD Anderson and the Duke Websites. Most of these clinicals are free and some even provide free or discounted accommodations. Some of the airlines even offer discounted air fare for things of this nature.

Good luck to you!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im so sorry Cindy.My prayer are with you. Im having a pretty hard time keeping my self together too this days. Id give you a big hug if I could.

sadinholland
Posts: 238
Joined: Apr 2011

My heart goes out to you Cindy. I can imagine houw you feel. I am constantly scared that this thing is going to come bck for my husband. Just like David was, he seems to be doing well. It appears that it just sneaks up on them one day and boom!!!!! I pray that all works out for David. I am so sorry your birthday was not a pleasant one. Just remember, as I am sure you do, God is right there with you and he isn't going to put more on you than you can bare. Repeat the Serenity Prayer for assurance and keep the faith.

Love and blessings to you as well!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, everyone for your kind thoughts and prayers.

We heard back from the ins company. Denied. I formally appealed on the behalf of David and they had til Friday to decide and they called me today and denied it again. Now the next step is to go before a judge but I don't have much hope that it will be approved. Our NO scheduled a conference call with the ins company and two of its medical directors but it doesn't look good.

In the meantime, one of my family members who is advocating for us found a research clinic called the National Health Institute in Bethesda, MD. It'a s federally funded research clinic. It's run by Dr. Howard Fine. I don't know a thing about him or them. Do any of you know anything about this place? All they do is clinical research. They will treat David for free. Sounds too good to be true. They would determine which clinical would benefit him the most and then let us decide what we want to do. I'll write more later but I haven't gotten any sleep lately and I am barely functional.

Please let me know if you know anything about this place. Here's the link to their website:
http://home.ccr.cancer.gov/nob/staff.aspx

I am going to repost this as a new comment thread to see if more people on csn have heard of this dr and this place.

Thank you for any input you can give to me. The clock is ticking away....

Love and blessings,
Cindy

cameron321
Posts: 1
Joined: Aug 2011

My story spans 4 years. I met her online. We talked there for some time, then on the phone nearly every day until about 3 weeks ago. It while she was living in a western state that she had a seizure followed by an MRI that disclosed the mass in her head. Oligodendroglioma Grade III. Surgery, radiation and chemo followed. Throughout all of the treatment we continued to talk most days. About 5-6 months after the treatment was finished, I noticed she had a lot of trouble staying awake. Gradually, our calls became less frequent and shorter, too. I ventured several times to get her to open up about her illness, but she didn't really want to talk about it. I recall that in the 2 or so years before her illness she was quite chatty on the phone. After the treatments she became much quieter and I didn't press her on anything. I wanted to share the illness with her. She wasn't allowing that. Then, out of the blue, she stopped calling me. I didn't have her phone number so I emailed. Nothing for about 2 weeks, then she emailed me that she wanted me to be happy but she couldn't give that and I needed to find someone else. She said she loved me. That was it. No more. Except for one thing...I love her too.

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