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Today: Treatment, etc.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

We are back up at OHSU and David is being treated with the BBBD protocol. Dr. Neuwelt and his staff worked out the insurance issues for us--that's a miracle. Even Dr. N's top assistant did not think the insurance would authorize the treatments. Actually, they had us add David to Medicare, and Medicare is paying part, and the insurance is paying the remainder. I was afraid to count on David getting the treatment until they actually did the treatment. I am so relieved that Dr. Neuwelt was able to get approval for the BBBD, and that David is being treated in a timely manner...actually being treated two weeks sooner than we expected.

David had a port put in yesterday. They placed a permanent catheter in his chest, on the right side, in his jugular vein. It has a triangular shaped access port with a silicon top that is connected to the catheter. The access port is right under the skin. When he comes to the hospital, specially trained nurses put a little triangle needle thing through his skin into the silicon top of the port. They leave the lines dangling out on his chest, and whenever he needs medicine, bloodwork, chemo, etc, they can access that port through the dangling line without sticking needles in his veins. The purpose of the port is to protect his veins from being poked all the time, and from being destroyed by the chemo. It also allows the chemo and other medicines to mix faster with his blood. He actually has a "power port" which is a little bigger than a regular one, and it has a double head. It's kind of creepy to think about that thing sitting there under his skin, but it should make things easier for David. It was really bothering him and hurting him. They have been giving him pain medicine for it but they say it will just take some time to heal and not hurt him.

David was really groggy when he came back to his room after getting the BBBD and the chemo. But he was able to eat breakfast before the next thing that had to be done...and the next thing was a new, high powered drug called STS that counteracts one of the side effects of the BBBD chemo....severe hearing loss. Like...going deaf severe. STS prevents hearing damage. But it also causes severe nausea and chills. So they gave David really strong anti nausea medicines and then the STS. They put the anti nausea into his port and it was like they flipped a switch. He passed out before they even got it all into his port, and he slept the whole day. It's 10:30 pm and he's still asleep. They had a difficult time rousing him to do his neurological checks. They did the STS and anti nausea around 11:30 am and again around 4 pm. We repeat this whole process again tomorrow: the BBBD, the chemo, the two doses of STS and the anti nausea medicines.

The good part is that David does not have a headache....that's HUGE!!! And he didn't throw up at all...that's HUGE too!!! He was so violently sick last time...it was awful. The nurse said that throwing up puts pressure on his head and makes everything worse, and they want to avoid that very much. So we are very glad that he's not sick like last time.

They did an MRI before the BBBD and chemo, and said that the tumors are stable...maybe even showing a little shrinkage from the intra-arterial chemo last month. I would have liked to have heard that there was a lot of shrinkage, but that's still great news and I am thanking God for it. And if the intra-arterial chemo without the BBBD helped last month, maybe we will see even better results from this month's treatment with the BBBD added to the treatment. I'm praying for that to happen.

So this is where we are at today. I'm still trying to take it one day at a time, but I can't help but hope that this is going to really help David and buy him some more time.

Love and blessings,
Cindy in Portland, OR (for now)

Posts: 20
Joined: Oct 2011

Oh my gosh, what good news this is. When I talked to my insurance company about it, they told me what steps to take should that happen and they also told me to look to the trial location (OHSU) for help with finding the funds (apparently they can find them for you which it sounds like they did for you)! I have looked into this trial should I not fair well. I've been in contact with them (Rose Marie). I am very curious to hear how David does. Just the headache relief is a Godsend!

My prayers and good thoughts are with David. I read your story when I was first diagnosed and have thought of him often.

Blessings ~ Kelly

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hello, Kelly.

I'm so glad that my good news encouraged you! Let me tell you some more....

David woke up this morning feeling pretty good...SMILING (it's been a while since he's smiled) and ready to do the treatment again today. No headache, and his port was feeling less painful. No headache, no headache, NO HEADACHE!!! My heart is soaring and my steps are light because of how good David is feeling. I am thanking God with such a grateful heart!!!

When the date for this BBBD treatment was drawing near, I was having crying jags and I was filled with fear, dread, and loathing at the thought of what was ahead for our hospital stay. I expected it to be a nightmare because David was so sick last month from just the intra-arterial chemo....I thought that adding the BBBD and the STS would be beyond horrible. Instead, it's been a million times better. They gave him a different, very effective anti nausea medicine this time that really worked well. Just another lesson to myself---don't try to predict what is ahead, and try to discipline myself to live one day at a time.

Before we had the BBBD approved and were still in the "considering BBBD treatment" stage, we were at Dr. Neuwelt's office and he had another patient there who had done the BBBD treatment. He asked her if she would mind talking to us, and she was more than happy to do so. Dr. N's assistant ran after us and caught us as we were getting on the elevator, and we came back and talked to this woman. She has a different type of cancer--central nervous system lymphoma, I think. Another bad one...anyway, she's 61 and looks about 40. Full of life, happy, bubbly...joyful, actually. She did the BBBD protocol for 16 months and she is now another 20 months out, without any signs of cancer. She said that she would do the BBBD treatment again in a heartbeat. She wasn't able to walk before the treatment, and now she is doing a lot of walking every day and is working towards going back to running. You would never know that she had been sick a day in her life. So encouraging! I thought about her almost every day as the time to do the BBBD drew closer, and it really helped me.

I'm glad that you are in contact with Rose Marie. We know her well. She's like a doctor herself. She's been with Dr. Neuwelt since the beginning...I think about 30 years. He has excellent staff and he is so highly regarded. And OHSU is outstanding. Are you near Portland? OHSU is perched up on Marquam Hill, overlooking the Willamette River and the city of Portland, with Mt. Hood towering in the distance...a spectacular view when it's not cloudy. On a clear day, you can see what is left of Mt. St. Helens, and even Rainier. Of course, the view is not what makes OSHU so great. They are state of the art, cutting edge in their technology, procedures, and their staff. They have people flying in from all over the country to get the BBBD treatment. I could tell you a lot more about OHSU but my posts are always too long so I will try to restrain myself. :) I will put a a picture of the view of the hospital from David's room in my expressions section.

I don't know where you are at in your treatment, and you may be years away from considering coming to OHSU, but if you do come here down the road and there is anything I can do to help you, please let me know. I live one hour away in Salem, but I come up to Portland frequently. Please send a note to me via the csn email and I will send you my hotmail address and my phone number, etc. And anytime you want to talk or have any questions, please feel free to contact me.

Oh, one last thing about the BBBD. I was talking to one of the nurses here, and she said that while she was in school at Portland State University, she kept running into one of the BBBD patients in her classes. The guy was attending school and working while he was doing the BBBD treatments. Wow! And Dr. Neuwelt says that one of his patients is a lawyer, and he goes back to work the Monday after the week of his BBBD treatment. (The treatment is usually like this: admitted Wednesday afternoon and have an MRI, bloodwork etc done, get treated Thursday and Friday, go home Sat. early afternoon.) That sounds like the BBBD is pretty tolerable. Maybe David will be able to go back to college...that would be so awesome!

Love and blessings to you,
Cindy in Portland (OHSU) Oregon

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