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AO III Recurrence/NIH/David

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

I started a new thread because I don't know where I posted what information. A recap on our situation: In July, after a little over 2 years on Temodar with clear MRI's, David had 2 seizures. MRI done in ER showed "disease progression." That means tumor growth. Our NO at OHSU wanted David to be a par t of his Blood Brain Barrier Disrupter clinical trial but the insurance co. denied it the day before we were scheduled to start. There apparently are no funds left for that clinical trial due to all the cutbacks. That really was a devastating blow to all of us, but especially to David. He said he felt like it was his death certificate. He's never talked like that before. Anyway, we appealed and our doctor personally called the medical director of the ins. company, we contacted a lobbyist, the governor's advocacy people, the news stations, OHSU's advocates....but it's still "NO". In the meantime, my family members did internet searches and contacted everyone they could think of, and one of them found the "National Institute of Health" in Betheseda, MD. We are in Salem, OR. David and I are flying out there tomorrow at 6 am. We have an appt on Wed. to see if he qualifies for one of their several clinical trials. We paid for this trip but if he participates in one of their clinicals, they will pay airfare and lodging for David and a support person (me) for monthly treatments at their facility. All the treatments will be totally covered by them at no cost to us. I don't know how I feel about David being a part of a purely experimental clinical, but we definitely want to check it out. We may decide to stay with OHSU and just do conventional chemo and wait until (if) David has another recurrence and then go to NIH. Or if conventional chemo doesn't work--we could go back to NIH. Of course the decision is totally David's and we will support whatever he decides to do.

In between this appt and the insurance denials etc., we went on an Alaskan cruise that we had planned a year ago. It was with my brother and sister in law, and my sister and brother in law, and some of their kids, and my husband Larry. It was for my sister and brother's two 50th wedding anniversaries. When David had this recurrence, I didn't want to go anymore. But my family all pitched in and paid for David to go too, so we packed up and spent a week in Alaska. Our NO strongly encouraged David to go ahead and go...said that a week or two's postponement of chemo would be okay. We had a really good time. It was like the life on the ship was the reality and that became my life. I was able to force myself not to freak out about David's situation. He did really well too, though we had some heart wrenching talks late at night. And it was hard to come home and face the real situation. I am very grateful for that time we all had together on the ship and in Alaska. But I am very, very anxious about the length of time that David has been off of chemo. The last time he took Temodar was the end of May. I don't think that that tumor has just been sitting there doing nothing all this time. Thank God, so far David hasn't had any symptoms aside from the seizures. We did whatever we wanted in Alaska...ziplined, whale watched, swam, hot tubbed, went to shows, hiked to glaciers....just like nothing was wrong. David is having trouble with Keppra, though. It gives him a bad headache, a stomach ache, and it makes him very, very irritable. Almost like a personality change. I can't believe the difference in him when he skips a dose. But I strongly encourage him to take it faithfully because a seizure would be worse than the side effects....

Anyway, I'm sorry that I went on so long. I will post again when I find out what NIH has to say. So far, I have been really pleased with the way NIH has helped us and with how encouraging they have been about us coming out to see them. No promises...but we are so grateful that we have another option (or more) available to us.

Love and blessings,
Cindy

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

For the update, a very good one..
Your sons blog is great too..
wish you all the best.

sadinholland
Posts: 218
Joined: Apr 2011

Cindy,

Thanks for the update. I am been checking on this site for an update from you. I am so glad you all were able to take the trip to Alaska and relax for a moment. My husband goes for his 2 month checkup in the morning so please everyone keep him in your prayers that everything is ok. He has had some weakness in his knees and legs lately. Not sure if it's from the Temodar or what. Sometimes they just give out on him lately. I try not to think negative but it is hard not to worry.

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

praying that it goes well

sadinholland
Posts: 218
Joined: Apr 2011

Ok so I posted yesterday that my husband had an appt. today. The NO said his scan was great and stable. I am so happy for that. He said the weak legs/knees have nothing to do with his cancer or treatment and we need to see his primary care doctor so we have no idea what is causing the legs and knees to give out. Anyway, I get home and read the results on the mri and am totallly confused. It says there is an area of postsurgical volume loss????Does anyone know what that means? It says there is a peripheral enhancement and moderate meningeal enhancement overlying the surgica site, decreased since last study???? Mild to moderate adjacent flair changes ?????ex vacuo dilatation mildly progressed?????? Few small areas of adnormal intensity involving subcortial and periventricular white matter?????? I am not allowed to ask questions at the doctor visits, per my husband or I will no no longer be allowed to go back with him. Any help would be greatly appreciated.

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

So glad you all got to go. Prayers are with you tomorrow. Have a safe trip and keep us updated.

HopeLoveFaith516
Posts: 9
Joined: Jul 2011

Cindy,
We live in the Virginia area and are actually treated at NIH (my husband was diagnosed with AAIII last November). I wish you all the best and can't say enough good things about the doctors/staff at NIH. You probably won't meet Dr. Fine because he is out of the clinic right now but he is AWESOME. They have many clinical trials right now so I hope that they have one for your David. We are currently in the same boat because so far, none of the typical treatments have worked for my husband. He unfortunately falls into that 40% group of patients that will not respond to Temodar, so after only one cycle, they switched him to Avastin. That seemed to be working and our MRI in June looked promising. However, the doctors begin a steroid taper and I started noticing small changes (at first) in his memory/concentration. They did another MRI last Friday and the difference in just 5 weeks was shocking. He has swelling in both frontal lobe regions and either a new area of active tumor or a major area of brain necrosis (has anyone had experience with this??). His memory seems to get worse each day and they have restarted him on higher levels of steroids, which so far have helped his energy level but not his memory. They did a PET scan today to try to further determine what exactly is going on and in the meantime have stopped all treatment (with the indication that we may be starting a clinical trial in the next 6 weeks). Sorry to "glom" onto your feed but I wanted to wish you well and tell you that we have personal experience with NIH and other than the waiting sometimes, we feel blessed to have access to Dr. Fine and his team. Good luck and God Bless!

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