Can't believe it--now insurance approved clinical. Now what?

cindysuetoyou

Such an incredible roller coaster. But at least it's good news this time.

When David first had a recurrence back in July, his insurance denied the treatment that his NO wanted to do, because the way the chemo was delivered---bypassing the blood brain barrier--is considered experimental. David's NO, Dr. Neuwelt, personally called the director of the insurance company but it didn't do any good. That denial is what led us to look for other options and ultimately led us to NIH and their clinical, which did not work. So when I contacted OHSU last week, they went back to their efforts with the insurance company.Now the insurance company approved that treatment. I CANNOT BELIEVE IT---after all of our tears and agony. But.....now we don't want it any more. NIH told us that it wasn't being done much any more and that there are some serious side effects, like brain swelling. I told OHSU that NIH had said that, and OHSU said that is not true. Can you believe it? The lack of agreement between experts regarding treatments etc is so hard. I keep telling myself that it's because they just do not know what the answers are.

OSHU looked at David's MRI and they don't think it looks that bad. They said that David is not "in crisis" and they want to wait a week to let the symptoms from the clinical trial treatment abate, and then do some more tests....a special MRI using iron, to see what the blood flow looks like....seeing what is tumor, what is scar tissue, what are blood vessels. They said that they are seeing many pictures in the MRI and it's really hard to see what is what and to really tell what is going on. They do feel that David's tumor did not grow maybe as much as NIH thought. So that's all good news. It just really messed us up about the clinical being approved after the HELL we went through when we were first denied. We had called the newspapers, the radio stations, the governor's office, national and state lobbyists, national and local advocates, the insurance company, and after all that, they still denied us. Now they reversed their decision. I just cannot figure it out.

I feel bad that Dr. N and his staff went to all that work to get approval, and now David doesn't want to do it. He would rather start with carboplatin with maybe etoposide, or Avastin. I sure do not want to do a treatment because we feel bad that the dr worked hard to get it....sheesh!!!

It's been an emotional few days. Dr. N is going out of town and we will try to get the special MRI done before he gets back. The earliest we can see him will be Wed.--a week from tomorrow. I hate procrastinating on treatments but Dr N assures me that it will be okay. In the meantime, David is feeling pretty good. He shot 18 holes of golf yesterday and plans on golfing tomorrow too. (We have out of state family visiting and they are avid golfers.) David is still in really good shape. He hasn't been having headaches. Just mild stomach aches and he's a little tired. His cognitive abilities all remain intact and his scores are all 100%. You would still never know that he's sick, except that he's pretty thin. I thank God that David is still doing so well. I hope and pray that he can stay that way for a long time. I'm afraid to plan anything like a camping trip etc for more than a week ahead of time. I am trying to take it one day at a time but I am so churned up emotionally. I know that it's all good news but I am just really feeling a lot of anxiety.

Sometimes I wonder if it really matters what treatment we do. I sometimes think---either it's going to come back, or it's not going to come back--regardless of what we do or don't do. But I'm afraid to base decisions on that theory. So hard to decide!!!!

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

palmyrafan

Rollercoaster
Cindy,

I am so sorry to hear about all the "crap" you 2 have been through with insurance companies, etc. It is never easy when dealing with them and all they seem to care about sometimes is their bottom line. Sometimes though, you get lucky and get a good benefits manager who understands and is willing to go the extra mile.

I've had both. My husband has been with his current employer 9 years. They've changed their insurance companies twice. We have been with the current insurance company for 7 years and they know my medical history. But every 3 months they wanted new paperwork filled out on me. They wanted all the basics plus all the docs information. Redundant and ridiculous. Until the head of H.R. at his employer called them up and said, "hey, isn't there something you can do so she doesn't have to keep proving herself every 3 months?" While I had to constantly prove myself, they kept denying my claims.......gggrrrr.....snarl....hiss.

Well, lo and behold, I was appointed a Patient Claims Representative, Robin. We have Robin's private desk # and her cell phone # so that we can reach her if we need to about my claims. Now, if someone at the insurance company denies the claims, we have them booted upstairs to Robin where she swiftly approves them and makes sure the docs get paid. It has made things so much easier.

As for treatment? That is purely a personal decision. I can understand your husband wanting to put things on hold for a couple of weeks. Let things calm down enough so the scans can be read properly. None of us wants unnecessary treatment if we can avoid it, especially if the risks may outweigh the benefits. Remember too, that what the caregivers or others see as beneficial may not seem that way to the patient. We get tired of being poked, prodded, tested, scanned, procedured to death that sometimes we just want to scream "stop....at least for a couple of weeks/months, etc. while I catch my breath". Take the time and the opportunity you have been given to thoroughly research the treatment options, not only in your area where you live, but in different cities and/or states as well. Sometimes what one doctor knows in one area is all he/she knows period. And it may be completely different and out-of-date than another doctor or team of specialists is doing in another area.

You're in my thoughts and prayers.

Teresa

I_Promise

How is your son doing?
Dear Cindy,

How is your son?

I have been thinking about you two.
Also I know that you have studied a lot of clinical trials. Did you ever consider gene therapy via oncolytic viruses? Let me know.
Thanks.

God bless,

Julia

sadinholland

I_Promise said:

How is your son doing?
Dear Cindy,

How is your son?

I have been thinking about you two.
Also I know that you have studied a lot of clinical trials. Did you ever consider gene therapy via oncolytic viruses? Let me know.
Thanks.

God bless,

Julia

Your Son
Hello Cindy,

Just wanted to check in on your son and you. I hope and pray everything is getting better.I will continue to send up the prayers!

cindysuetoyou

sadinholland said:

Your Son
Hello Cindy,

Just wanted to check in on your son and you. I hope and pray everything is getting better.I will continue to send up the prayers!

Hello, Julia and Sadinholland
Thank you both for asking about my son David. I don't even know where to start. It's been such a crazy roller coaster ride. David has had a total of four seizures now, and we were back at the ER yesterday with a massive headache. Today David is doing great. Our neuro-oncologist is shaking his head...he can't figure out how David can be doing so good today when he was so sick and miserable yesterday. I don't know why either...but I am very glad that he is better today.

Here's where we are at today.....it looks like David is headed for another brain surgery. I am feeling good about it. They did a special MRI, using a contrasting agent that bonds with iron. They wanted to see the blood supply to the tumor. To their surprise, the blood flow was very low. They don't know what that means. Maybe the white area that "lights up" is radiation aftereffects, maybe what they see on the MRI is not all tumor, maybe it's a lower grade tumor (I've been terrified that it might be a higher grade since recurrent tumors tend to be higher grades.) The doctor says he just can't tell without surgery. He does see a large cyst again, and he thinks the cyst is causing pressure on David's brain and is causing the headaches and possibly the seizures.The main goal of the surgery would be to remove the cyst and to remove as much tumor as possible. They will biopsy the tissue that they remove. After the surgery, they may treat any tumor that remains with more chemo.

I look at it like this: right now, today, David has a cyst and a tumor. He could have surgery and then have no cyst and a debulked tumor the next day. Or he could do several months of chemo and maybe it would reduce the chemo. It wouldn't affect the cyst. I'd rather he did the surgery. His doctor said that he believes a little surgery could help David a lot. So we are meeting with the surgeon on Friday and hope to have the surgery done next week. David starts back at Portland State University next week too, and he really has his heart set on attending college this term. I don't know how he can do it, but he is determined and he's already completed one year while on chemo, and he did really well...even made the dean's list. So if he wants to go to school, I say go for it! Dr. Neuwelt says the recovery time will be really fast. David should be up and out of the hospital in two days. It took longer the first time he had surgery, so I don't know about two days. We will see what the surgeon says on Friday.

The headaches have been a major problem. Yesterday's headache was really bad. I had to take him to ER and he was throwing up over and over. They gave him Dilaudid via IV and it helped but didn't make the headache go all the way away. But this morning David said he felt a lot better. I am concerned that the headache may come back in the next few days or over the weekend, but Dr. Neuwelt said if it did come back, that David should go straight to ER and they would help him manage the pain.

So that's where we are at. Interesting that in July, surgery was not an option, and now it's back on the table. I think that may be because of the cyst that formed. I'm just glad that our NO thinks that the surgery will be a big help.

Julia, i correspond with a great guy and his wife. He contacted me through this site. He was diagnosed a few days after David at the same hospital. Our doctor told him about David and he saw my posts on CSN and figured out that I was David's mom, so he wrote to me and we have stayed in contact. He was diagnosed with AA3 in May of 2009 and had surgery and then did radiation and Temodar. He is doing really well. He has also been in contact with Dr. Friedman at Duke. I think Dr. Friedman may be overseeing his treatment since he moved to New Orleans recently. I wrote to his wife, Amanda, and asked if they would be willing to communicate with you and your sister Kat. They just wondered if that is something that you and/or Kat would want to do. His name is Michael. Amanda is in medical school at Tulane, and I think Michael may have started there too. They have done a lot of research on AA3 and different treatment options. If nothing else, it might really be an encouragement for Kat to talk to someone further down the road and to know what she might expect, and also to know that someone is battling AA3 and is doing well, over two years later. Please let me know if you and/or Kat would like to talk to them. No problem if you don't feel like that is something you two want to pursue. I totally understand.

Also, I don't know if I mentioned to you, Julia and to you, Sadinholland, that David has a Facebook community page that his family created, where we post updates on his treatments and his status. It's called "Trusting in God for David." David also posts his own feelings and perspectives on his personal blogspot. The address to his blog is http://web.me.com/davidwebb21/Trusting_in_God/Blog/Blog.html.

Thank you again for asking about David. I am always checking on this site and I think about your sister, Julia, and your husband, Sadinholland, all the time. I pray that they will continue to fight hard and hold on to hope. It's a hard, rotten battle, but there are people who do beat brain cancer.

Love and blessings,
Cindy

I_Promise

cindysuetoyou said:

Hello, Julia and Sadinholland
Thank you both for asking about my son David. I don't even know where to start. It's been such a crazy roller coaster ride. David has had a total of four seizures now, and we were back at the ER yesterday with a massive headache. Today David is doing great. Our neuro-oncologist is shaking his head...he can't figure out how David can be doing so good today when he was so sick and miserable yesterday. I don't know why either...but I am very glad that he is better today.

Here's where we are at today.....it looks like David is headed for another brain surgery. I am feeling good about it. They did a special MRI, using a contrasting agent that bonds with iron. They wanted to see the blood supply to the tumor. To their surprise, the blood flow was very low. They don't know what that means. Maybe the white area that "lights up" is radiation aftereffects, maybe what they see on the MRI is not all tumor, maybe it's a lower grade tumor (I've been terrified that it might be a higher grade since recurrent tumors tend to be higher grades.) The doctor says he just can't tell without surgery. He does see a large cyst again, and he thinks the cyst is causing pressure on David's brain and is causing the headaches and possibly the seizures.The main goal of the surgery would be to remove the cyst and to remove as much tumor as possible. They will biopsy the tissue that they remove. After the surgery, they may treat any tumor that remains with more chemo.

I look at it like this: right now, today, David has a cyst and a tumor. He could have surgery and then have no cyst and a debulked tumor the next day. Or he could do several months of chemo and maybe it would reduce the chemo. It wouldn't affect the cyst. I'd rather he did the surgery. His doctor said that he believes a little surgery could help David a lot. So we are meeting with the surgeon on Friday and hope to have the surgery done next week. David starts back at Portland State University next week too, and he really has his heart set on attending college this term. I don't know how he can do it, but he is determined and he's already completed one year while on chemo, and he did really well...even made the dean's list. So if he wants to go to school, I say go for it! Dr. Neuwelt says the recovery time will be really fast. David should be up and out of the hospital in two days. It took longer the first time he had surgery, so I don't know about two days. We will see what the surgeon says on Friday.

The headaches have been a major problem. Yesterday's headache was really bad. I had to take him to ER and he was throwing up over and over. They gave him Dilaudid via IV and it helped but didn't make the headache go all the way away. But this morning David said he felt a lot better. I am concerned that the headache may come back in the next few days or over the weekend, but Dr. Neuwelt said if it did come back, that David should go straight to ER and they would help him manage the pain.

So that's where we are at. Interesting that in July, surgery was not an option, and now it's back on the table. I think that may be because of the cyst that formed. I'm just glad that our NO thinks that the surgery will be a big help.

Julia, i correspond with a great guy and his wife. He contacted me through this site. He was diagnosed a few days after David at the same hospital. Our doctor told him about David and he saw my posts on CSN and figured out that I was David's mom, so he wrote to me and we have stayed in contact. He was diagnosed with AA3 in May of 2009 and had surgery and then did radiation and Temodar. He is doing really well. He has also been in contact with Dr. Friedman at Duke. I think Dr. Friedman may be overseeing his treatment since he moved to New Orleans recently. I wrote to his wife, Amanda, and asked if they would be willing to communicate with you and your sister Kat. They just wondered if that is something that you and/or Kat would want to do. His name is Michael. Amanda is in medical school at Tulane, and I think Michael may have started there too. They have done a lot of research on AA3 and different treatment options. If nothing else, it might really be an encouragement for Kat to talk to someone further down the road and to know what she might expect, and also to know that someone is battling AA3 and is doing well, over two years later. Please let me know if you and/or Kat would like to talk to them. No problem if you don't feel like that is something you two want to pursue. I totally understand.

Also, I don't know if I mentioned to you, Julia and to you, Sadinholland, that David has a Facebook community page that his family created, where we post updates on his treatments and his status. It's called "Trusting in God for David." David also posts his own feelings and perspectives on his personal blogspot. The address to his blog is http://web.me.com/davidwebb21/Trusting_in_God/Blog/Blog.html.

Thank you again for asking about David. I am always checking on this site and I think about your sister, Julia, and your husband, Sadinholland, all the time. I pray that they will continue to fight hard and hold on to hope. It's a hard, rotten battle, but there are people who do beat brain cancer.

Love and blessings,
Cindy

Dear Cindy
Yes! I would love to hear from Amanda and her husband! Kat has mentioned many times that she needed people her own age who are diagnosed with the same cancer. Don't get me wrong: brain cancer at any age is horrendous. But young, you really feel cheated by life.

I want David to not only survive but be cured of this horrible monster. I always look forward to your emails and updates. I have a good feeling about his up coming surgery. Any chance the tumor is going to be send for genetic analysis or for a targeted vaccine? (I know that the research is still in infancy and not yet proven but... promising).

Kat had a good week end in DC (getting radiation during the week); her boyfriend and her went for a bicycle tour of DC and then went out to a secret Speakeasy in the evening.

Tons of Love,

J.

CatherineSch.

Treatments, and trust
Cindy,
I know what you mean with the indecision, the options, the back and forth, should we, shouldn't we... its all so disconcerting, and mind boggling. You don't know if what course you choose is going to do the trick, and buy many years. Our faith and trust in these medical folks, who mostly I feel sit at the side of God with their abilities and skil
l, I hope and pray, in part are directed by a Divine Hand....

Keep the faith, and hang on to that positive attitude of strength, that I'm sure so many, sharing this blog, have been turned around by, on a otherwise dark day. You both rock! Continued good health.
Catherine