Flashback #6 - Off to a bumpy start!
Alright, picking back up after our first trip to Sloan Kettering in NYC. The initial visit had gone well enough. The oncologist felt that there were trials that David would qualify for, which made us hopeful. We were to return a week later for a follow up and more information. This would give the Sloan pathologists time to complete their own analysis of David's tissue sample, as well as give the doctors more time to review all his information.
After Halloween festivities, we headed back to the city. David was scheduled for an MRI at Sloan, then we would meet with Dr Lassman to discuss our options.
Waiting room pic...Sloan actually has several buildings other than the main hospital. David's doctor is in the East 53rd St building. It's very nice inside...the security/greeters are always super nice! The waiting room is pretty neat for a medical building.
Once we actually conferred with Dr. Lassman, he gave us our options. In his opinion, chemotherapy alone was just as effective as the radiation/chemo combo that the local doctor had recommended. However, instead of being a six week course of chemo and radiation, it would be a year of chemo. But it would not be everyday...it would be cyclical. David would take a higher dose of Temodar (than if he were doing the 6 week option) for 5 days, then nothing for 23 days. This would go on for 12 cycles.
Then he took the opportunity to tell us about a trial that he felt David would be eligible for based on his pathology, tumor grade, etc. They essentially agreed with Hartford's diagnosis...however, they felt that the grade was slightly above a 2, they called it a 2.5...but rounded it up to 3 so he could participate in the trial. Of course, David just called it 2 and change. No way was it a 3...except for on his Sloan charts. He wouldn't be able to take part in the trial with a grade 2, or slightly above 2...so that's why they rounded it up.
Anyways, the trial would be 6 months of standard Temodar treatment, with MRIs so they could monitor growth/shrinkage every 3 cycles...at least that's what we thought. It wound up actually being every 2 cycles. Depending of the response of the tumor to the chemotherapy...if they felt it was responding (and they were hopeful it would be due to the deletions in the chromosomes I talked about last Flashback), then he would proceed with the actual trial portion of treatment.
The trial consisted of a few steps. First of all, before he started any chemotherapy at all, he would need to take an immune system boosting drug called Neupogen, which would cause his white blood cells to increase. After being on it for a couple days, he would head to NYC to be hooked up to a machine which cycled his blood from one arm, through a centrifigal machine that harvested the stem cells, then back into his other arm. They said it usually took 2-3 days of being hooked to the machine to harvest enough stem cells. After this procedure, he would do the 6 months of standard Temodar. Then, a very high dose of chemotherapy would be administered for about 3 days I believe, at which point all his bone marrow would be destroyed, but hopefully also the cancer cells. After receiving the chemotherapy, he would get a rest of a couple days, then would receive back his own stem cells that they had harvested and frozen previously. This would get his immune system ramping back up faster. He would need to be in isolation at the hospital, probably for about 3 weeks. Then he would be discharged, but would need to stay in NYC for another 3-4 weeks in case of emergency. They said we should be able to stay at Hope Lodge, which offers lodging for cancer patients for no charge. After that he would be able to go home, but would still need to stay away from people for the most part, wouldn't be able to go back to work until 3 months were up. This was some hardcore stuff here. No fooling, it was dangerous!
I'll be totally honest, from the minute I heard about this trial, it scared the s@*# out of me!!! I was seriously terrified. I had no good feeling, but what were our options?
So after telling us about the trial, Dr. Lassman said he wanted to discuss something on the MRI with us...but then proceeded to keep on "selling" us on the trial for another 20 minutes. Talking about it later, David said he was waiting for the other shoe to drop, but he just kept on telling us about the trial and why he felt it would be good. Like I said earlier, it was for grade 3 Oligodendroglioma, which is why they rounded up the 2.5 grade they had told us.
Finally, Dr Lassman said, "about your MRI..." They had noticed missing bone in his forehead and were worried about "bone-eating bacteria." WOW, you really are worried about bone eating bacteria, but you took 30 minutes to sell us on the trial? lol...we were a little amazed. Anyways, they said David had bone missing and they were concerned. Of course, David didn't have any signs of infection, no fever, dumbness, etc...so he asks if they were aware that Dr Schwartz had gone into his brain through the sinus cavity and sealed it off. Dr Lassman says, "really, he told you that?" Oh my!!! Seriously, it's in the surgery notes...which apparently they don't read...even though we sent all that info over. Surgeons and oncologists really don't cross over. He had no idea about that...and to make matters worse, David suggested that he call Dr Schwartz and Lassman said, yeah, do you have his number? At this point, we are not feeling good about the collaboration at all. We've given ALL this information to his office. The doctor in fellowship jumped in though, saying that they did have it.
However, Dr Lassman was still concerned and wanted us to catch the next shuttle to the main hospital and go to the ER and get examined right away. We were thinking if it was such an emergency, why did you waste so much time talking about the trial, etc. We were a bit concerned honestly, who wouldn't be at this point. But we thought it was probably just the erosion from the tumor being in there so long, as well as the missing sinus cavity that they hadn't been aware of. So we caught the shuttle and went to the ER.
Oh boy...so we waited for 4 hours...bear in mind, even though my in-laws are watching the kids, I'm still worried about them!
boooo...some serious CYA going on here! An infectious disease doctor, and an ENT...wowzers. At this point David and I were pretty confident nothing was going on...it was just missing bone that the surgeon had already told us about...but we needed to see it through. So they admitted us, because apparently it wasn't that big of an emergency, it could wait till morning.
Then David decided to hijack my FB...lol
I wasn't the only one convinced that he was fine. And at this point, with as anxious and vigilant as he was about his health, that's saying something!
So we finally saw an infectious disease doctor (no infectious disease), an ENT doctor (everything's fine, yup, your sinus is blocked off), a neurosurgeon (yup, that's how we would have left him) and finally the green light to go home, you're good.
Sigh...mind you, this is the next afternoon!!! I missed the kids so badly at this point! Never was I so happy to be home!
Of course, we're also trying to decide what to do. The trial sounds risky, but could have a big payoff. We decided to go for it. We could always back out if we didn't want to continue.
David called the doctor and said he was in. He needed to go back up to sign paperwork the next week. I've been going to every single one of his appointments at this point. However, the girls parent-teacher conferences were that same day. I figured since it wasn't an appointment, he was just signing paperwork, it would be OK.
So off David leaves in the morning. Of course, the weather is cold and super windy that day. Since the conferences are in the afternoon, the kids get out early...and because with everything going on, I hadn't signed up for the conferences early enough to get slots right next to each other...so I wound up having walk the half mile back and forth to school in the blustery wind with the kids about three times. I'm feeling sorry for myself...and then David gets home. Turns out, he saw all kinds of doctors...meetings...information...it was a bad day to miss. Of course he was unhappy I wasn't there...but, c'est la vie...if I'd known it was all that, I would have gone...but they had just said he needed to sign the paperwork to join the trial. I didn't miss another appointment for over a year...haha
I was hoping to get a little further along...but I guess this is enough for now.
Here's David's take on the whole bone eating bacteria fiasco.
I'll be totally honest, from the minute I heard about this trial, it scared the s@*# out of me!!! I was seriously terrified. I had no good feeling, but what were our options?
So after telling us about the trial, Dr. Lassman said he wanted to discuss something on the MRI with us...but then proceeded to keep on "selling" us on the trial for another 20 minutes. Talking about it later, David said he was waiting for the other shoe to drop, but he just kept on telling us about the trial and why he felt it would be good. Like I said earlier, it was for grade 3 Oligodendroglioma, which is why they rounded up the 2.5 grade they had told us.
Finally, Dr Lassman said, "about your MRI..." They had noticed missing bone in his forehead and were worried about "bone-eating bacteria." WOW, you really are worried about bone eating bacteria, but you took 30 minutes to sell us on the trial? lol...we were a little amazed. Anyways, they said David had bone missing and they were concerned. Of course, David didn't have any signs of infection, no fever, dumbness, etc...so he asks if they were aware that Dr Schwartz had gone into his brain through the sinus cavity and sealed it off. Dr Lassman says, "really, he told you that?" Oh my!!! Seriously, it's in the surgery notes...which apparently they don't read...even though we sent all that info over. Surgeons and oncologists really don't cross over. He had no idea about that...and to make matters worse, David suggested that he call Dr Schwartz and Lassman said, yeah, do you have his number? At this point, we are not feeling good about the collaboration at all. We've given ALL this information to his office. The doctor in fellowship jumped in though, saying that they did have it.
However, Dr Lassman was still concerned and wanted us to catch the next shuttle to the main hospital and go to the ER and get examined right away. We were thinking if it was such an emergency, why did you waste so much time talking about the trial, etc. We were a bit concerned honestly, who wouldn't be at this point. But we thought it was probably just the erosion from the tumor being in there so long, as well as the missing sinus cavity that they hadn't been aware of. So we caught the shuttle and went to the ER.
Oh boy...so we waited for 4 hours...bear in mind, even though my in-laws are watching the kids, I'm still worried about them!
boooo...some serious CYA going on here! An infectious disease doctor, and an ENT...wowzers. At this point David and I were pretty confident nothing was going on...it was just missing bone that the surgeon had already told us about...but we needed to see it through. So they admitted us, because apparently it wasn't that big of an emergency, it could wait till morning.
Then David decided to hijack my FB...lol
I wasn't the only one convinced that he was fine. And at this point, with as anxious and vigilant as he was about his health, that's saying something!
So we finally saw an infectious disease doctor (no infectious disease), an ENT doctor (everything's fine, yup, your sinus is blocked off), a neurosurgeon (yup, that's how we would have left him) and finally the green light to go home, you're good.
Sigh...mind you, this is the next afternoon!!! I missed the kids so badly at this point! Never was I so happy to be home!
Of course, we're also trying to decide what to do. The trial sounds risky, but could have a big payoff. We decided to go for it. We could always back out if we didn't want to continue.
David called the doctor and said he was in. He needed to go back up to sign paperwork the next week. I've been going to every single one of his appointments at this point. However, the girls parent-teacher conferences were that same day. I figured since it wasn't an appointment, he was just signing paperwork, it would be OK.
So off David leaves in the morning. Of course, the weather is cold and super windy that day. Since the conferences are in the afternoon, the kids get out early...and because with everything going on, I hadn't signed up for the conferences early enough to get slots right next to each other...so I wound up having walk the half mile back and forth to school in the blustery wind with the kids about three times. I'm feeling sorry for myself...and then David gets home. Turns out, he saw all kinds of doctors...meetings...information...it was a bad day to miss. Of course he was unhappy I wasn't there...but, c'est la vie...if I'd known it was all that, I would have gone...but they had just said he needed to sign the paperwork to join the trial. I didn't miss another appointment for over a year...haha
I was hoping to get a little further along...but I guess this is enough for now.
Here's David's take on the whole bone eating bacteria fiasco.
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