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I think maybe things may be changing for the better?

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

We received GREAT news today!!! David is approved for that special treatment that we wanted him to have...the blood brain barrier disrupter protocol!!!! I spent the morning on the phone with OHSU, with our oncologist's staff, with a patient care coordinator, with social security, with David's insurance company, with the hospital admittance person....I talked to some of them more than one time. All of them said that David is cleared and he will get treated. Some of you might remember that we were going to do this procedure back in July, but the day before he was to be admitted and treated, we were denied by his insurance. That's why I called so many people today, trying to get them to swear on their life that David will get treated. I never want to go through the agony we felt when David was denied treatment the day before he was supposed to start.

David is going to be admitted on Wed at 6 am for a whole bunch of tests...MRI, EKG, bloodwork, chest X-rays, etc. and he will have a procedure done to put a port in his chest. Then on Thursday (and again on Friday), he will have a catheter put in his groin up to his aorta, as close to his brain as they can get, then they will put in the blood brain barrier disrupter (Mannitol) and then shoot in two chemos. The third chemo will go in thru his port. They will repeat this same procedure the next day, on the other side of his body. Then he should be able to go home late on Saturday. He has to wait a certain amount of time after getting chemo to get two special shots...one to boost his bone marrow production, another one to protect his hearing. Before they had discovered or invented the shot to protect his hearing, patients would lose their hearing from the chemo. It's the carboplatin given with the BBBD method that does that damage. But with the shot, no one has lost their hearing. Thank God they have that shot.....

Last month, David had this same treatment, except they did it in one day, and they did not use the disrupter. They just gave the chemo to him intra-arterial. Even without the disrupter, our NO says that intra-arterial chemo is 10x more potent than regular chemo via an IV. With the disrupter, he says it's 100x more potent. Maybe more effective might be a better description than potent? I don't remember the exact wording...I just remember the increments of ten.

After the first treatment, David was so incredibly sick. He threw up for hours, really hard. We are hoping that he will not get as sick this time, but I think it's pretty likely that he will be as sick...maybe even sicker. We will see....David's blood counts were also really low, which was not expected for the very first time he did this chemo. And his hair started falling out right away...they thought he would not lose it for a few treatments yet. And he's had some really nasty, gushing bloody noses. But....no major headaches, only moderate ones that he's been able to tolerate and treat with oxycodone. And no more seizures! He's had two weeks of relatively good days. A few days he's felt pretty lousy, but he's recovered. Compared to how he felt before chemo, he's doing amazingly better. I am hoping and praying that when they do the MRI on Wed, it will show some shrinkage in his tumors already, from the initial intra-arterial chemo treatment.

Now...there is no guarantee that this BBBD treatment will help David. And even if it does, the dr says that the tumors will eventually find a way to get around the chemo. They will not really say what to expect time-wise...one nurse did tell me that they would consider it a favorable outcome for David to be without "disease progression" for two years. Before David's recurrence in July, that comment would have made me so miserable. Right now, after what we have been through recently, I am very, very grateful. David was so sick with headaches, seizures, etc. that he was seriously losing hope, and I was terrified that he would not be with us much longer. So two years seems like an incredible gift. David is encouraged because he's feeling better, and because he's going to get this treatment. And who knows what could happen in two years...who knows what this chemo might do? Maybe David will be one of those people that you hear about, who do really well and the drs just don't know why......all I know is that today David is feeling better and I am enjoying each and every day, one day at a time.

I will post here on CSN on a daily basis while David is in the hospital. I'll just do daily updates and add it to this thread. I will stay with David while he is in the hospital and I'll have lots of quiet time while David sleeps off the effects of the anti-nausea medicine, and while he recovers from the treatments. I'll try to keep my posts brief! :)

Thanks for reading this!
Love and blessings,
Cindy in Salem, OR

Posts: 232
Joined: May 2011

Again, thank you Cindy for keeping us all updated. I feel like we have been going through this together. In fact, all of us who are on this site are, even if we haven't met. We are all on the same road.

Both you and he are so strong (of course, that's what people say to me. But they don't see me when I wake up at 3 am and am crying my eyes out!)and a real inspiration as to what love and determination can accomplish.

Hugs and prayers that all goes well.

Posts: 6
Joined: Sep 2011

I am new to the site, stumbling thru how to use it, and came across your comments. I could not bear to read evry word, because today is one of my rough days. However it did not take many words to know that you two are struggling to survice each day. We all are, so I am about to say my afternoon prayers and they will begin and end with a plea to The Lord Almighty Jesus to heal David. Please remember Cindy you must expect miracles if they are to happen...

God Bless You Both
Columbia, Maryland

palmyrafan's picture
Posts: 396
Joined: Mar 2011

that the approval has finally come through for David!!!! I know this has been a long hard battle for you and there were times it didn't seem like there was much hope.

I will continue to keep you both in my prayers. Please keep us updated as to David's progress!


alutiiqmom's picture
Posts: 256
Joined: Jun 2011

Hi Cindy:

You and David will be in my thoughts and prayers. I hope and pray everything goes well. You are an incredible Mother. Just your daily dose of love and attention is helping David in more ways than you know. I agree with you on the two years - who knows what they will come up it! God Bless you and David.


Posts: 248
Joined: Apr 2011


Thank you so much for keeping us all updated on David's progress. I believe all of us here on this nework look for your post. David is so blessed to have a mother like you. I too, continue to pray for you and David. I am looking forward to hearing the GOOD news regarding his upcoming treatments. I think about you guys every day. Thank God they finally approved everything and he can start his treatment. God is good, all the time!!!
Love and Blessings to you and your family as well!!

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Thank you all for your comments. I hate that so many of us are going through the pain and agony of dealing with cancer, but I am glad that I am not alone and that others know what David and I are going through, and that you care and show support. I check CSN all the time and I re-read a lot of the posts and I'm always comforted and encouraged by your notes.

I went and picked David up early this morning. He's totally bald. His hair was falling out so much and it looked so patchy and odd that he went ahead and shaved the rest. He's pretty philosophical about it this time around. He said that giving up his hair is worth it to be able to get this chemo treatment. I know that he hates not having hair and hates looking in the mirror and seeing David the chemo cancer patient. But he will deal with it. It will eventually grow back.....it was tough today, though, when his little niece Kaylie (my granddaughter) first saw him without hair. She acted all shy and scared. Little kids just don't know any better but I wanted to smack her. Some grandma, huh? She got over it, though, and David took it in stride. Kaylie is really a little sweetheart and she loves David. I think we should have warned her that David was going to look different.

David's buddy's mom put together a fundraiser for David. We didn't have to do a thing. She arranged a deal with a local Applebee's restaurant to let us have a special all-you-can-eat sausage and pancake fundraiser. It comes with coffee, orange juice, tea, soda...you can charge whatever you want. Applebee's just gets $2.00 per person, and we get the rest. They decided to charge $7. I thought it was kind of high but we didn't have anything to do with the fundraiser, so I didn't think I should say what they should charge. They also made up these raffle baskets with nice things in them....candles, pictures to hang on your wall, gift certificates to hotels, restaurants, etc...all kinds of stuff. Once again, our friends and family were so generous...we ended up getting $1,600. It was really nice to see all of our friends, and we walked around from table to table and visited and laughed and had a good time. It was really nice to have this fundraiser right before David goes in for treatment. It was a real morale booster.

David is staying in Salem tonight at a friend's home. They had a football party and watched the Ducks/Stanford game. They are all rabid Ducks fans and they were so happy that the Ducks won. I'm so glad that David feels well enough to get out and about. Tomorrow we will all go to church together and then have our Sunday family dinner at my house. After that, I'll drive David back up to Portland. He loves coming to Salem on the weekends but it wears him out and he's always so glad to get back to his nice peaceful apartment.

I'm planing on riding my horse all day on Monday if it doesn't rain. I ride way up in the mountains, just me, my horse, and my dog. It's beautiful. remote, rugged terrain, and right now it's so spectacular with all the fall colors. I will head out early and I'll ride until it gets dark....hopefully a 6 or 7 hour ride. When I ride, my troubles fall away for a little while....I call my horse Cairo my therapy horse. I'll add a picture of him in my expressions section.

Thank you again for all of your kind posts!
Love and blessings,

I_Promise's picture
Posts: 218
Joined: Aug 2011

Dear Cindy,

I am glad that there is a plan in motion. I am glad that David is doing better. I think you often.



Woodsymom's picture
Posts: 13
Joined: Jul 2010

Cindy- Its been a while since I have posted. My son Loren is 27 now but was diagnosed around the same time as your son , David in 5/2010. Loren and his wife continue to forge ahead. Our 'cancer-free' diagnosis in 2/2011, we discovered was not exactly true. Kaiser had just taken a non-aggressive approach, kind of wait and see. In June/2011, he had a grand mal seizure at home and was rushed to the ER where they eventually determined another tumor was present on the inside of his right hemisphere. Emory Hospital has taken over his care and are trying to be professional in the way they describe Kaiser's poor attention to an aggressive cancer. He has had another biopsy, still a Stage 3. Had a chemoport placed in his brain as well for future spinal fluid checks (cells may migrate to his spine) or if chemo will be used at that site. He has had a difficult time with coming off the steroids in preparation for Avastatin infusion therapy. They are waiting for his biopsy and port site to completely heal before they start the infusion therapy (Avastatin will attack the tumor blood cells and kill it....hopefully). He has been on daily dose of Temodar and anti-nausea medicine with no side effects. With all of that said, people who do not know what he is going through, would never know he was sick. He remains strong and 'healthy'. He is trying to work a little here and there in between treatments, drs appointments and surgery. Their outlook is positive and they are a happily married young couple. They celebrated their 1 year anniversary August 14, 2011.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hello, Woodsymom.

I am very glad to hear from you, though I am so very sorry to hear that Loren had a setback. I had been wondering how you and Loren were doing. I remembered reading a post about Loren having a seizure and finding out that there was another tumor. The very next month (7/3), David started having seizures and we also found out that David had "disease progression"---meaning more tumor growth. More than one spot, and now on both sides of his brain. I don't know if you have read all of my many and lengthy posts, but we have had a pretty rough road. Hopefully this BBBD protocol will help David feel better. His biggest issue by far is the terrible debilitating headaches that he has been having on a regular basis. If the BBBD treatments stabilize the tumors and prevent the headaches, that would be a wonderful thing!

I'm glad that Loren is in otherwise good health and that he and his bride :) are happy and are enjoying married life. I am not very successful at this, but I believe this is the best way to live: take it one day at a time and be thankful for the gift of each and every day. Don't worry about tomorrow's trouble and sorrows, because it might not be the way I think it may be, and it only ruins today.

I am still praying for you and Loren and your family, and I hope that his next treatment plan helps him to knock that tumor back!

Love and blessings to you and Loren and your family,
Cindy in Portland (for now), Oregon

Posts: 26
Joined: Jan 2011

so glad to hear things are heading in the right direction. i havent heard of that treatment, as my brother couldnt receive anything experimental because of a rare chromosome he had. Note I am talking in past tense, as I sadly tell you my brother passed away last week...peacefully in his sleep. This has been the hardest week of my life...I hope things keep moving forward in the right direction for you and your son. Fight it for all of those who have lost their battle to this horrible disease...

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Oh, Girl2010....your brother.....I hate, hate HATE hearing that he died. My heart actually had a sharp physical pain when I read your post. I am so sorry.....I can only imagine the pain and sorrow and shock. I am so sorry for what you and your family must be feeling. I hope that God can touch your hearts and bring you comfort and strength in the hard days ahead of you. I will be thinking of you and praying for you. I am so very sorry...
love and blessings and peace and grace to you in extra measure,

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

Im very sorry to hear about your brother. I losted my sister to GBM 4, Oct 19th. I know the pain and hurt. I have never felt such saddness as I do now, this is the worst.My prayers are with you...

Posts: 14
Joined: Oct 2011

Our thoughts and prayers are with you thru this challenge. Your faith, and strength will carry you thru, (also Cairo - What an incredible outlet!! I wish I could be out there with you, getting it all redirected...Good Luck..

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