Sorry it's taken so long again since the last update, but as we have come to learn, this is a long process and we don't always have concise information to give. David has been really tired since his last round of chemo that was given intravenously. I have heard that the second round of IV is much harder to tolerate than the first, and it appears that is true. However, after the last two days of appointments and with the help of some more medicine on board, we may have been able to remedy that a bit. So, let me back track some and continue where we left off…
After further communication via email with the doctor in Florida, we were told that the study we were hoping David could get on was closed, they were out of medicine anyway, and that he wouldn't have been eligible due to the steroids he was currently on. The doctor was very kind though and gave us his current treatment plan that we have shared with our new doctor at MDA. We have also been in contact with a doctor in Arizona who specializes in melanoma and he too gave us additional information on medicine / chemo's that he suggests. So, armed with new information and a renewed sense of "we have to do something more", we requested a change in our primary oncologist within the MD Anderson system. Luckily, the doctor that we requested agreed to take David on, and we met with him today.
Yesterday we had another appt. with our neuro-oncologist, Dr. Conrad. He looked at the MRI that David had taken that morning, and said that it appeared the lesions that were in the brain (the MRI was just of the brain) were responding to the radiation treatment that David had done in December. Dr. Conrad explained that it would probably be six months before they disappeared, but so far so good. It appeared there was nothing new. The radiologist hadn't made his report yet. We love Dr. Conrad. His nursing staff is wonderful, and he is so friendly and genuinely concerned. He gave David medicine for his lethargy and said that he would be contacting our new doctor prior to us meeting with him today. That's what we want – team work. Yesterday was a good day!
Today we met with the new melanoma oncologist, Dr. Pappa (it's short for Pappadapolis). He is also lovely. Everything that everyone had said about him was correct. He reviewed the MRI again, and said he saw a few more spots that had probably been there before, but one never knows. He also reviewed the last PET scan with us again, this time in much further detail. It's always hard looking at those. Any type of scan, MRI, etc is terrifying. So, he reviewed David's current treatment plan, mentioned EVERY drug that we were going to mention to him (from the Fla. and Arizona doctors plans) and also said that he was going to have pathology test the tumor from the craniotomy for its actual molecular make-up. Something we have been asking for since Sept. This helps to determine exactly what type of chemo to use. Certain chemo's target certain things – to put it in layman's terms. David can rattle off numbers and codes with the doctors and they all sound the same to me, but I get the gist. There's no guarantee the chemo will work, but you have to try, right? Also, we need this information to convince the insurance company to pay for certain chemos. Chemo aint cheep. Oh, and when we left, he said he wanted to talk to the radiologist and asked us to have him paged – YEA! TEAMWORK! It looks like we will have another PET scan in Feb. and after that he will comprise a new treatment plan, praying he believes that something will work. He also needs to know how David has responded to the IV chemo he has been receiving before he determines all this, and the PET scan will show the systemic stuff (again another technical term).
We then met with the radio surgeon, Dr. Woo. David is now famous in the radiology department for being the first person to go that many rounds of SRS (stereotactic radiation) in one month! They even asked him if he wanted to make a video. Why they want to make his head swell anymore, I'll never know (smile). Anyhow, Dr. Woo confirmed that there are a couple more he sees on the MRI, so his words to David were, "Are you ready to go again?" Of course, there's no question in David's mind. I told him he was a very brave man for doing this. He said, "I'm not afraid of the treatment, I'm just afraid if it doesn't work. I have to do everything". So, here we go again. Back on Monday for another round of SRS. Another halo, four more holes in the head and another very long day. The radio surgery staff and Dr. Woo are great. They also love us as I know their Starbucks orders by heart!
David has a meeting in San Antonio next week too, so our plan is to get him there on Tuesday (yes, the very next day after SRS) and he will be there through Thursday. This will be great for him to have some companionship of his coworkers and also to not have to think about this horrible disease he is fighting. Okay, so that's what he does for a living, but it will still be good for him. Pray that he feels up to it after Monday's treatment.
Oh, and the medicine that Dr. Conrad prescribed for fatigue has seemed to help today. Let's hope it continues to do so. He really needs to gain some strength back.
Kids are fine, thanks to our family, neighbors and friends. You are all wonderful for putting up with us and we continually feel blessed. Ethan has become our resident prayer at dinner time, and he never forgets to thank God for all of you. He also has a very funny term for MD Anderson (he couldn't say it properly) but I don't think I will post it on here. Ask me.
Okay, off to bed now. I'm sure when David reads this in the morning I will have left something out or had to edit it, but he can do that – right?
Keep praying, have faith, and we'll beat this thing together.
Nicola
Thanks so much for the update! I know posting a blog is the last thing on your mind!
ReplyDeleteWe will pray for his fever to reside and regain strength! Keep fighting for a cure!
Nicola and David - so glad Dr. Papa is working out!
ReplyDeleteYay!
My kids call it Empty Anderson - Hah!
I hope I see you in San Antonio - same meeting?
xo Bon
Thanks for the update Ricola, you guys are hanging tough and we admire your courage! We can't wait to see you in Feb,
ReplyDeletePerrons