If it isn't clear now, I'm really going to let this be a warts-and-all blog of my experiences, emotional and physical. Writing this out is therapy for me. I hope it's educational or helpful or entertaining or something for you. My experience with cancer and these drugs is certainly unique in some ways, and pretty universal in others, I expect.
So the nausea settled back down and the shits eventually stopped. I took another Ativan and tried to go to bed. That's when the reflux hit. I had major problems around reflux for the first year or two after I had my band removed, and that had finally resolved itself a little over a year ago. For a while now I've taken a tums or something once or twice a week if I ate something super-rich too late in the evening, but not had any other issues around it.
Last night it was back, and was the worst episode I've ever had. Tums wouldn't calm it down. Chewing gum wouldn't calm it down. It's been so long that I don't have any of the other OTC stuff any longer, and I wouldn't have taken it without express instructions from the doc in the first place - I'm on so much crap now that bad interactions are bound to happen if I'm not super careful.
So it was after midnight and I was in this weird super bleary place where I was still amped up on the steroids, trying to temper that with Ativan, physically exhausted by the shits and dry heaves, and now getting reflux. I hauled my old wedge pillow and that didn't help either. So I start to fall asleep, wave of reflux hits, I start choking and wake myself back up, and then wake Bob up of course. Lather, rinse, repeat. At some point all that coughing turned into stress incontinence. So yes, in the course of about 8 hours I puked in a cat box, pissed my pants, and got absolutely no sleep at all. I gave up and got up around 5.
Somehow my 7am meeting went way better than expected, and we were on the road back down to Stanford by 7:45 for my biopsy (So this is now three sessions of core needle biopsies for a total of 8 wide gauge cores taken, and then two needle aspirated lymph node biopsies, for those who like to keep track.) When I checked in I gave the nurse the rundown on what happened last night and she got me all checked in and then called over to Mollick's office on my behalf while I did the biopsy.
His nurse called before the biopsy was done, and he called himself 10 minutes later. So the reflux is one of those more minor side effects of taxol that is massively amplified by the LCL161. JOY. He prescribed Protonix which is a time release proton pump inhibitor, and I'll take it daily along with the other giant pile of pills until the study is done (11 weeks to go).
It seems to hit me later in the day. I was good until about 6 (and had been taking my Zofran for nausesa) and then it started in again. Bob picked up the script on his way home from football and I got my first dose about two hours ago. I think it's kicking in. Hard to tell. Haven't been eating much - eating slowly can relieve the symptoms temporarily by forcing the acid back down by peristalsis (which is why chewing gum can help too by generating saliva to swallow - pro tip), but then more food in the stomach can make it worse.
So now I'm going put on my Depends, take a Tums, a valium, sleep on a wedge, and hope for a better day tomorrow.
In other news, Bob is being as awesome with all of this as he could possibly be. I am very lucky.
So the nausea settled back down and the shits eventually stopped. I took another Ativan and tried to go to bed. That's when the reflux hit. I had major problems around reflux for the first year or two after I had my band removed, and that had finally resolved itself a little over a year ago. For a while now I've taken a tums or something once or twice a week if I ate something super-rich too late in the evening, but not had any other issues around it.
Last night it was back, and was the worst episode I've ever had. Tums wouldn't calm it down. Chewing gum wouldn't calm it down. It's been so long that I don't have any of the other OTC stuff any longer, and I wouldn't have taken it without express instructions from the doc in the first place - I'm on so much crap now that bad interactions are bound to happen if I'm not super careful.
So it was after midnight and I was in this weird super bleary place where I was still amped up on the steroids, trying to temper that with Ativan, physically exhausted by the shits and dry heaves, and now getting reflux. I hauled my old wedge pillow and that didn't help either. So I start to fall asleep, wave of reflux hits, I start choking and wake myself back up, and then wake Bob up of course. Lather, rinse, repeat. At some point all that coughing turned into stress incontinence. So yes, in the course of about 8 hours I puked in a cat box, pissed my pants, and got absolutely no sleep at all. I gave up and got up around 5.
Somehow my 7am meeting went way better than expected, and we were on the road back down to Stanford by 7:45 for my biopsy (So this is now three sessions of core needle biopsies for a total of 8 wide gauge cores taken, and then two needle aspirated lymph node biopsies, for those who like to keep track.) When I checked in I gave the nurse the rundown on what happened last night and she got me all checked in and then called over to Mollick's office on my behalf while I did the biopsy.
His nurse called before the biopsy was done, and he called himself 10 minutes later. So the reflux is one of those more minor side effects of taxol that is massively amplified by the LCL161. JOY. He prescribed Protonix which is a time release proton pump inhibitor, and I'll take it daily along with the other giant pile of pills until the study is done (11 weeks to go).
It seems to hit me later in the day. I was good until about 6 (and had been taking my Zofran for nausesa) and then it started in again. Bob picked up the script on his way home from football and I got my first dose about two hours ago. I think it's kicking in. Hard to tell. Haven't been eating much - eating slowly can relieve the symptoms temporarily by forcing the acid back down by peristalsis (which is why chewing gum can help too by generating saliva to swallow - pro tip), but then more food in the stomach can make it worse.
So now I'm going put on my Depends, take a Tums, a valium, sleep on a wedge, and hope for a better day tomorrow.
In other news, Bob is being as awesome with all of this as he could possibly be. I am very lucky.
Gah, that really sucks. Glad to see in your more recent post that the Protonix worked. Is that typical to get so many biopsies? Was there something wrong with the other ones or is it to see if the chemo is working or what? Do they hurt much? I'm assuming the core biopsies are from the breast but what about the lymph node biopsies? Also breast? Armpit?
ReplyDeleteYeah, I am having more biopsies than normal, primarily because of joining the clinical trial.
ReplyDeleteThe first time they went in they took five cores at once because the tumor is so big - that's normal, they want to get good coverage. The procedure itself isn't terribly painful - They go in from the side of the breast close to the armpit - entirely so they can shoot the needles in sideways and not accidentally stab you in the lung. They do a bunch of lidocaine at the surface which hurts about he same as the initial novacaine you'd get at the dentist, and then they do a small incision (or five) for the biopsy needle to go in, because it's a much larger gauge and would tear the skin otherwise. The only pain I've felt during the procedure is the lidocaine injections, but you do feel everything and it's really weird. Kind of fun to watch on the ultrsound screen though. The biopsy needles have a breakaway tip that leaves a metal tag in the tumor so they can see where they've been in future ultrasounds/mammograms. The real pain comes in the following 72 hours or so - it's just a massive internal bruise, and deep enough that icing doesn't really help, and you can't take NSAIDS because they'll keep it from clotting up right.
So after that first round of biopsies and my initial diagnosis, they sent me for an MRI which showed a couple of lymph nodes and I had to go back to get those looked at - same basic procedure, but much smaller needles, much less internal bruising (and lymph nodes were negative, YAY). One in my armpit, one deep in my breast.
When I decided to pursue the trial with Stanford they needed tissue samples for my genetic mapping, Alta Bates wouldn't release the full cores (that's annoying but a normal thing for a hospital to do) and just sent slides, which weren't good enough. So I went back and let Stanford do another core a couple weeks ago to get into the study. Then this week was the first one as part of the study itself - to see if after two rounds of taxol/lcl161 there had been any cell death attributable to the drug yet. From here I'll get an ultrasound every third week to see if it's shrinking, and then one more biopsy or lumpectomy at the end of the trial (10 weeks from now). Goal of the trial is to see if the lcl161 helps shrink a triple negative tumor faster than taxol alone. Mollick thinks there's about a 50% chance that the tumor will disappear entirely in the next ten weeks, in which case they go in and essentially cut a slice out of my breast to prove that there's no tumor left. Science!
And to be clear on another thing - the end of the trial in October is not the end of chemo - It's the halfway point, and the cocktail I'll be on for the next 12 weeks is the really really nasty shit. I'm expected to be nauseated but not puke much on the regimen I'm on now. On AC the rules change to "vomiting up to five times a day is normal, after that go to the hospital..." But I will be off-trial and getting treatment at Alta Bates which is only about 10 minutes from home (vs. 90 for Stanford), which will make a lot of things easier when I'm really needing help with transport and food deliveries and such.