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Another NIH/clinical trial/David update

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

So here's where we are currently at in David's battle with brain cancer.....

We flew out to the National Institues of Health in Betheseda, Maryland last week for three days and then flew home. We are here now too.

We flew out on Wed. 8/2, met with their doctors on 8/3, flew home on 8/4. They were long flights and a long three days. The drs examined David and then said that he qualified for three of their current clinical trials. Here were the options they gave us:

1) stay at OHSU and do the standard IV chemo mix with carboplatin etc. (no treatment at NIH but we could possibly come back later and do another clinical trial, depending on David's future status)
2) NIH clinical trial with avastin and an experimental chemo added. IV treatments. Would require a trip to NIH every two weeks.
3) NIH clinical trial with carboplatin and another experimental chemo. Also IV treatments. Trips to NIH every four weeks.
4) NIH clinical trial with Sunitinib (experimental oral chemo) Trips to NIH every four weeks

The doctors all stressed that the choice was totally David's and that all four choices were equally good choices and they would not recommend one choice over another one. They said that if they knew which choice would bring the best results, then they would not be doing clinicals. They would just do the one treatment that they knew would give the best result. Made sense....

We flew back home and talked and talked and read up on everything that we could think of and went over all the clinical trial info over and over and made up lists of pros and cons and researched as best we could and prayed really hard...and David decided to go with the Sunitinib trial for a variety of reasons. So we flew back to NIH yesterday (8/10) and today and tomorrow David did and will do a bunch of tests...bloodwork, PET scan, MRI, EKG, echocardiogram, etc., and he will start on the Sunitinib tomorrow. Then we will fly home on Saturday 8/13 and then fly back here in two weeks so they can check up on him, then fly back again in another two weeks, and then we will come every 4 weeks.

Except for headaches which we are pretty sure are from Keppra, which also gives him occasional stomach aches, David is physically doing good. We are feeling a lot of fear and stress and dread of the unknowns but we are dealing with it. David and I are enjoying our time together....even joking around a little, and just talking about inconsequential things, taking pics, eating at nice restaurants....we sat in the hot tub last night and talked to a tech guy who is here in MD installing a super hi tech machine at NIH. It's used for reading blood cells or something and is going to be helpful in AIDS research. He was amazed when we finally told him why we were here. David really is doing good. The drs here did the whole test routine...I'm sure you know the drill..."do the drunk walk, touch your nose, remember these three things..." etc., and they said that if David didn't tell them that he had a problem, they would never know he had a problem. So that's something to be very, very grateful for.

I had posted previously on here, asking if anyone knew anything about NIH and Dr. Fine, etc. I had serious doubts about this place. Well, I am happy to be able to say they are "totally legit"...using my kids' terminology. Everything appears top-notch, and I am amazed that a place this size, with the amount of people they are seeing and treating, can operate as smoothly and as efficiently as this place does. I have to admit....I did not expect a place run by the government to be so incredibly on top of their game. We had a thirty minute echocardiogram scheduled at 11, then an EKG and bloodwork, and a meeting with a social worker, and we were done and on our way back to our hotel by 12:30. We didn't wait for more than 3 minutes for any of the tests. The waiting rooms were all lovely with courtesy coffee, tea, and fruit juices, TVs, couches and chairs, and huge, peaceful, soothing fish aquariums. The staff is all extremely helpful and courteous and very understanding of our needs. Very professional without sacrificing the personal touch. Compassionate and encouraging. They don't point and tell you where you need to go...they personally come out from behind their desks and walk you to your destination. I had a message on my phone this am from our nurse/care coordinator/travel facilitator. It's her day off but she just wanted to make sure we were doing okay and had everything we needed. On her day off! (She knew how stressed I was about the flights and hotel and shuttle, etc.)

NIH also arranged and paid for our flight here and back. They emailed our flight confirmation numbers and I printed it off...that was all I had to do regarding our flights. It's not easy to fly from Oregon to the East Coast...we had to change planes in AZ and NYC the first time, and Chicago the second time. I was too stressed to arrange our flights the first time...my husband did it all, including booking a hotel and renting a car for me and David. (We paid for only the first trip last week--just put it all on a credit card.) For this trip, they gave us $50/night towards our hotel and $15 each, per day, for food. They have a shuttle service that is easy to use, that runs to and from the airport to NIH and from NIH to and from the hotel. (nothing from the hotel to the airport) It runs every half hour and is very easy to use and takes us right to the door of NIH and our hotel. And it's free. Since we are doing a clinical trial, all of David's treatments and tests here will be 100% covered. The Marriott here gives NIH people a break...$109 + tax/day for our hotel room. It's a really nice room, and they even give NIH patients and their support person (me) free internet...that's a big deal to us. We do a lot online...I'm always trying to research, and we like to be able to keep in touch with all the family and friends at home. They really appreciate the updates.

NIH itself--the building---is huge, beautiful and high tech and ultra modern. Very, very impressive. Just the way it looks inspires confidence. Now all we need is for the Sunitinib to work....and that's a total unknown. It's a total experiment with no real data yet. Scary...but everything about brain cancer is scary.

We decided to do a clinical trial now and not wait until we are desperate (though I've felt pretty desperate since the day David was diagnosed). We didn't want to wait until David is in poor health and may not qualify for a clinical. And if this clinical doesn't work, he can try another one, or stay at OHSU and do standard chemo. And possibly come here again down the road. We did not sever our ties with OHSU either. We will keep them apprised regarding David's status and his treatments here. All the records created by NIH are being forwarded to OHSU. I am grateful to OHSU for how much they have done for David. I am also very, very grateful that we have the option to work with NIH. I thought they sounded far, far too good to be true...but so far, they have far exceeded my expectations.

I will keep doing updates on David's treatments etc. I'm sorry this is so long...writing this out helps me process stuff. It's a form of therapy for me, I guess. Thank you for reading this...if you made it this far--haha!

Love and blessings,
Cindy
PS feeling some hope here again....July was a hellish month....

msomawas
Posts: 22
Joined: Aug 2011

Cindy, my husband was diagnosed 7/3. I know about July. He is a David, too. I will keep you and your husband in my thoughts and prayers.

huxley2006
Posts: 25
Joined: Oct 2010

Have you by any chance checked out the vaccine programs at UCLA. This is where I plan on going if things ever progress. It looks very promising with very little side effects. I believe Dr is Linda Laiu. Is the individual overseeing the clinical? She Very well respected researcher and Neurosurgeon.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Keep us informed. I have been following your son's journey through your post. Dr. Fine at the NIH as the best reputation. Your son is young and I love your attitude. My sister is 29 years old and just got diagnosed with AA grade 3. We are the beginning of this journey. She is only on keppra right now. She is about to start radiation and Temodar at Hopkins. Looking at her, you would never guess she has a brain tumor.

Julia

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

So David started the clinical trial. He's taking Sunitinib ("Sutent"} every night. So far he's just feeling fatigued, but no other side effects. The drs think because of his age (28) and his overall good condition, he won't have many of the side effects. They expect to see fatigue, a rise in his blood pressure and a drop in his platelet counts. They can treat the blood pressure and the platelet issues. They also said that we may see a skin rash.

After my previous post, the drs at NIH went over the MRI that they did the day before and they told David that there had been "disease progression" from the 7/7 MRI to the one they did on 8/10. They said "not a huge amount of tumor growth, but not an insignificant amount either." This news hit David terribly hard. I mean, it really laid him low. He rallied and is facing it, but this was extremely difficult for him (and for me) to hear. David wanted to see the MRI and they put the two MRIs up side by side, and you could see that the tumor had grown. It's also on both sides of his brain now. And it doesn't look anything like the first time he had a tumor. The first time, it looked like an encapsulated cyst. This time it looks like a paintball splatter. It looks diffuse, like there would be no way to remove it surgically. (Surgery was ruled out the day that we found out that he had a recurrence...it's not possible to operate on this new tumor.) David doesn't talk about the growth anymore but I know that it still really bothers him and scares him. We had a really bad night that night. Not much sleep .....

David is being so strong and he's facing this head-on. He has his moments like anyone would...we have cried together and been filled with despair together. But we will not stop trusting in God and we know that this life here is not forever, for any of us. But we do love this life.

I am having a really rough time. When I wake up in the morning, it's like I've forgotten for a moment, and I think, "What is the matter????" I know something is really wrong, but I don't know what it is. Then I think...."David has brain cancer..." and it's like this crushing weight on my mind and heart, and I just start crying before I'm even all the way awake. I used to jump out of bed in the morning, running off to start my day. Now I have to drag myself out of bed and I have no desire to do anything, not even the things I used to love, like riding my horse. And I think that if I feel like this, how must David feel? I HATE it for him and it breaks my heart. I wish so much that there was something that I could do to make it different for David. I hate being so helpless. I make meals for him, I buy things for him, I call and text him as often as I can without being annoying, I pray for him all the time....but it doesn't change the fact that he has brain cancer.

I think I'm having a hard time because I had a little private talk with one of the drs and I pressed him for statistics and results from the clinicals and it was not good. Just the same old same old that we have gotten from doctors since the day that David was diagnosed. I guess I shouldn't ask the questions if I don't want to hear the answers.

I have to go back to telling myself that the drs don't know for sure--they just are quoting statistics, and that every tumor is different, with different time lines and different outcomes. And that some people do beat cancer and live way longer than the doctors ever thought they would. And that I believe that God still does miracles.

Love and blessings and peace to you all,
Cindy in Salem, OR (for now--headed back to Maryland on Thursday)

PS David played in a charity golf tournament today. He's been doing things with friends and going for long walks and running errands. You would still never know that he's fighting a brain tumor. I am so thankful to God for how good David is doing today.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

My 18 year old daughter has Anaplastic Astrocytoma 3. I understand your feelings of hopelessness and fear and I also understand your faith. I believe in God with all of my heart. I know that he is among us especially with those who are suffering. I have had those momments also when you wake up and you forget that your life has been turned upside down and then you remember and you could not get any lower. Jesus says to call to him in those dark moments and I hope that you do.
I have seen many posts that say get more opinions. I have seen M.D. Anderson posted a lot. I saw an interesting post on UCLA about a vaciine therapy. I have also heard of Jimmy Fund hospital. Fuel yourself to fight for David! I will pray for you. This is a terrible journey but we are on it and we have to do our best for our family members that are suffering. My prayers go out to you and David. Wishing you the best. God Bless you.

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

Thank you, Alutiiqmom, for your note. I really appreciate it.

I feel better today. David spent the night at our home last night, and I got up early and made a nice breakfast, and then our whole family went to church and then out for lunch. It's our oldest son's 30th birthday. There were about 25 of us in our group, and then we came back to our house for cake and ice cream, and we just sat around and visited. Then David's youngest sister Christy and I drove David back home to Portland (about an hour away). David can't drive right now because he had 2 seizures in July. Christy and David and I just hung out at his apartment, looking at pictures on our laptops and just joking around. Finally at midnight, we drove around and found a Taco Bell and a Subway and we bought dinner and took it back to his apartment. It was just a great day, filled with family and laughter.

We did have one scare today. David went to the bathroom and he passed a lot of blood. Scared all of us because one of the side effects of the new chemo is perforated bowel. We called NIH and they paged our doctor. We were talking to him within two minutes of our call. He is pretty confident that since David feels fine--no fever, no weakness, no pain, the blood is probably from an internal hemorrhoid. David has had stomach issues ever since he first had surgery in May of 2009. The doctor said that if he passes more blood a second time, he needs to go to ER and get a CAT scan. But David went to the bathroom later and no blood, and he feels good, so we are breathing easier.

I think I do better when I get to spend time with David. When I am with him, I just cannot believe that he is sick and that he could possibly die. He just looks and acts so good. He said that the chemo makes him feel sick, but it's a small price to pay to be able to get well. I am proud of him for having the strength to have that attitude. I think it's the right way for him to think. I try to be that way too. After all, one thing that all the doctors agree on....is that a good, positive fighting outlook really helps.

We are still holding on to hope, and still trusting in God, no matter where this road takes us.

Blessings, peace, and love to you and your daughter and your family,
Cindy in Salem, OR

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Im glad that you had the chance to get David to a clinical trial, God is always good and works in mysterious ways so there is always hope, best wishes to you and your son, he is so strong and that is very inspirational to everyone.

sadinholland
Posts: 237
Joined: Apr 2011

Cindy,

It's good to hear you had a "good" day. I know they are seldom with all that is going on. Keep on doing what you are doing, leaning on the Lord. I pray for strength for you and your family.

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