Had my 4th round of chemo today. It went well, and I'm feeling good tonight.
They held off on the Zometa (bone strengthener) because it's supposed to be at least 4 weeks apart, and my treatments are only 3 weeks apart. So I'm going back next week to get the Zometa separately.
The rest of this week is just resting and staying on my meds schedule. Saturday I go in for my Neulasta, and Monday, back to work.
Not planning on doing a ton this week, but I do have to go to the shop tomorrow to run payroll and make sure everything is in one piece. And I'm hoping to make it to get my nails done- I haven't had them done since before the wedding in July, and they look TERRIBLE.
Well, that's about it. Feel free to bug me online if you're bored this week, I'll be here!
Monday, August 29, 2016
Saturday, August 27, 2016
Weekend
All set for Round 4 on Monday! I did my grocery shopping, and I have a cooler full of goodies to bring to treatment with me. My Aunt Carol (if you're reading this, thank you and I love you!) sent me a gift to keep my spirits up, so I'll have 3 new movies to watch next week while I'm resting. I'm spending the weekend taking it nice and easy- and completely out of the sun! Tomorrow we're going to see Ty's family. My appointments on Monday start later than usual- typically they want me there by 8am, and this time I don't have to be there until 10:45am! So I get to sleep in and cook myself a nice breakfast before I have to leave, which is awesome. Then we just hope and pray that the insurance gets sorted out in the next 3 weeks- I would really like for there not to be a Round 5, if at all possible. :-)
Love you guys!
Love you guys!
Monday, August 22, 2016
Drug Trial Updates
So today we sat down with the doctors that are running the drug trial at Memorial Sloan-Kettering Hospital. Just to give you a better idea of how amazing it is that we even got this far, this is the only trial of this drug being conducted in the United States right now. There are about a dozen other countries running studies on it, but this is the only one here in this country. So the fact that we are close enough and were able to get up to see these folks is just awesome.
The team here confirmed what our previous two pathology reports already told us, which is that my tumor is lacking a particular gene. It's a fairly rare genetic deficiency overall, but common enough that they were able to develop this medication for it. To explain it in the terms they gave us today, the missing gene basically causes other genes to go a little nutty and thus cause my cells to replicate out of control (which is really all cancer is, when you get down to it- cells that are over-replicating). So traditional chemo treatments work in various ways by stopping cells from replicating. Since cancer cells replicate faster than normal cells, the drugs and the cycles they use them in are designed to kill more cancer cells than normal cells, in order to shrink the tumor without killing the patient. But, they do still destroy a lot of good cells, which is why chemo makes you sick. This new drug that the trial is studying doesn't do that. It goes in to the gap in the DNA made by this missing gene, and basically plugs the hole. This makes the DNA look at the cell and go oh, you're not supposed to be a rapidly multiplying psycho-cell, you're just supposed to be a lung cell. And so the cells stop over-replicating, and therefore stop making cancer, and the existing cancer cells die off, and no new ones will be made.
The leading doctor, Dr Gounder, who we saw today, said that most patients see results with this drug, and that they mostly see very good results. At the very low end of "good" results would be everything freezing where it is now, and the cancer not spreading ever again. The even more likely good result would be that the existing tumors start shrinking and continue to shrink as long as the treatment lasts. This is a treatment which unlike chemo, I can continue to take for an indefinite period of time. Even more amazing, Dr Gounder told us that while there are some mild side effects listed on the drug's information, NONE of his patients are currently reporting ANY side effects from this drug. He said if he really pushes them, he'll get half-hearted reports of maybe a little fatigue here or there, but that nobody is reporting any major or debilitating side effects. That means no nausea, no hair loss, no loss of taste or appetite... there's a good chance I won't even be able to tell I'm taking anything at all. Anyone who's been treated for cancer knows just how unbelievable that is.
So to get back to our meetings today, they went very well. We signed the trial consent forms, which was a big thing. It basically puts a bookmark on one of the trial spots for us. What happens now is that both Ty and I, and also the trial doctors, both have to petition our health insurance company for permission to get testing and treatment done at this hospital. Because it's out of state, we don't get automatic approval. We have to show them that because my cancer is rare and this is the only drug trial in the country being done for this particular cancer, that there is a reason why I have to get treated at this hospital and not one that's closer to us and in their regular network. Once we get clearance from the insurance company, I have to come back to NYC so they can do their tests- they mentioned blood work, possibly a genetic test (to see if the abnormalities in my tumor are in my entire body, or just in the tumor itself), and probably a PET & CT scan, to fully document where the tumors are and how big they are before we start. Also a few basic health assessments to makes ure that I'm healthy enough to start the study, but that's not really a big concern, because we already know that except for the cancer, I'm in good overall health. After I start the treatment, I'll have to come up every 2 weeks for the first 2-3 months, and then it will go down to once a month. It sounds like the trial sponsors will actually help me pay for travel and lodging costs, which is awesome. And between them and the insurance, they'll cover all the tests and everything.
As of now, it looks like the insurance is the big obstacle we have to get over. Once that's done, they'll bring me up, do the tests, and then give me final approval to enter the study and start the drug. It's likely that I'll have to do one more round of chemo, because by the time we get the approval, and then get me up here for the scans and tests, and then actually start me on the drug, it may be too long to wait from my last chemo. I've already emailed Dr Kang at Hopkins and am waiting to hear what he has to say about that. Other good news, I can continue to receive the bone-strengthening treatments even after I start the trial drug, so I will be able to continue my riding without interruption.
Sorry for such a long entry, but I wanted to get all the information out to you guys. So now you pretty much know everything that we know. :-) Which is basically that while we're not 100% in the trial yet, it looks really really good that we will be very soon.
We're heading home tomorrow! As always, thanks for the thoughts and prayers. <3
The team here confirmed what our previous two pathology reports already told us, which is that my tumor is lacking a particular gene. It's a fairly rare genetic deficiency overall, but common enough that they were able to develop this medication for it. To explain it in the terms they gave us today, the missing gene basically causes other genes to go a little nutty and thus cause my cells to replicate out of control (which is really all cancer is, when you get down to it- cells that are over-replicating). So traditional chemo treatments work in various ways by stopping cells from replicating. Since cancer cells replicate faster than normal cells, the drugs and the cycles they use them in are designed to kill more cancer cells than normal cells, in order to shrink the tumor without killing the patient. But, they do still destroy a lot of good cells, which is why chemo makes you sick. This new drug that the trial is studying doesn't do that. It goes in to the gap in the DNA made by this missing gene, and basically plugs the hole. This makes the DNA look at the cell and go oh, you're not supposed to be a rapidly multiplying psycho-cell, you're just supposed to be a lung cell. And so the cells stop over-replicating, and therefore stop making cancer, and the existing cancer cells die off, and no new ones will be made.
The leading doctor, Dr Gounder, who we saw today, said that most patients see results with this drug, and that they mostly see very good results. At the very low end of "good" results would be everything freezing where it is now, and the cancer not spreading ever again. The even more likely good result would be that the existing tumors start shrinking and continue to shrink as long as the treatment lasts. This is a treatment which unlike chemo, I can continue to take for an indefinite period of time. Even more amazing, Dr Gounder told us that while there are some mild side effects listed on the drug's information, NONE of his patients are currently reporting ANY side effects from this drug. He said if he really pushes them, he'll get half-hearted reports of maybe a little fatigue here or there, but that nobody is reporting any major or debilitating side effects. That means no nausea, no hair loss, no loss of taste or appetite... there's a good chance I won't even be able to tell I'm taking anything at all. Anyone who's been treated for cancer knows just how unbelievable that is.
So to get back to our meetings today, they went very well. We signed the trial consent forms, which was a big thing. It basically puts a bookmark on one of the trial spots for us. What happens now is that both Ty and I, and also the trial doctors, both have to petition our health insurance company for permission to get testing and treatment done at this hospital. Because it's out of state, we don't get automatic approval. We have to show them that because my cancer is rare and this is the only drug trial in the country being done for this particular cancer, that there is a reason why I have to get treated at this hospital and not one that's closer to us and in their regular network. Once we get clearance from the insurance company, I have to come back to NYC so they can do their tests- they mentioned blood work, possibly a genetic test (to see if the abnormalities in my tumor are in my entire body, or just in the tumor itself), and probably a PET & CT scan, to fully document where the tumors are and how big they are before we start. Also a few basic health assessments to makes ure that I'm healthy enough to start the study, but that's not really a big concern, because we already know that except for the cancer, I'm in good overall health. After I start the treatment, I'll have to come up every 2 weeks for the first 2-3 months, and then it will go down to once a month. It sounds like the trial sponsors will actually help me pay for travel and lodging costs, which is awesome. And between them and the insurance, they'll cover all the tests and everything.
As of now, it looks like the insurance is the big obstacle we have to get over. Once that's done, they'll bring me up, do the tests, and then give me final approval to enter the study and start the drug. It's likely that I'll have to do one more round of chemo, because by the time we get the approval, and then get me up here for the scans and tests, and then actually start me on the drug, it may be too long to wait from my last chemo. I've already emailed Dr Kang at Hopkins and am waiting to hear what he has to say about that. Other good news, I can continue to receive the bone-strengthening treatments even after I start the trial drug, so I will be able to continue my riding without interruption.
Sorry for such a long entry, but I wanted to get all the information out to you guys. So now you pretty much know everything that we know. :-) Which is basically that while we're not 100% in the trial yet, it looks really really good that we will be very soon.
We're heading home tomorrow! As always, thanks for the thoughts and prayers. <3
Saturday, August 20, 2016
24 Hours to Go!!
Tomorrow we leave for NYC! In 48 hours we'll be sitting down the with trial coordinators and finally getting this show on the road!
Now that I'm over the hump, my recovery is progressing normally from my previous rounds of chemo. My taste is slowly returning, my appetite is great, my energy levels are rapidly returning to normal. As evidenced by the fact that today is day 6 of my work week and I'm still feeling good. :-) As I predicted, my slowly healing sunburn is now the worst thing I'm dealing with. Although even that is making progress now. I lost most of my eyelashes and eyebrows this time, hopefully those grow back soon... people look weird without eyebrows.
This will probably be my last entry until we finish up with the Sloan-Kettering people, so look for an update no later than Tuesday hopefully. When we're not at the hospital we plan to enjoy the sights of NYC a bit while we're up there, so I will probably not bother to update until we get home again. Please keep sending those prayers and positive vibes our way!! This is a huge deal for us and we really need everything to go well up there.
Love you guys!!
Now that I'm over the hump, my recovery is progressing normally from my previous rounds of chemo. My taste is slowly returning, my appetite is great, my energy levels are rapidly returning to normal. As evidenced by the fact that today is day 6 of my work week and I'm still feeling good. :-) As I predicted, my slowly healing sunburn is now the worst thing I'm dealing with. Although even that is making progress now. I lost most of my eyelashes and eyebrows this time, hopefully those grow back soon... people look weird without eyebrows.
This will probably be my last entry until we finish up with the Sloan-Kettering people, so look for an update no later than Tuesday hopefully. When we're not at the hospital we plan to enjoy the sights of NYC a bit while we're up there, so I will probably not bother to update until we get home again. Please keep sending those prayers and positive vibes our way!! This is a huge deal for us and we really need everything to go well up there.
Love you guys!!
Wednesday, August 17, 2016
Sushi = Win
Had a couple of tough days food-wise: my mouth is sore, nothing tasted right, my stomach was iffy. After trying dozens of different foods, I found something that tastes good, sits well, and even makes me hungry for more: sushi. Go figure, eh?
Meanwhile, food and a good night's sleep has me continuing to mend. My sunburn has started to heal finally, which is also nice. Work is chugging along. In just 3 short days I went from feeling like I might collapse when I got home, to feeling like I could go home and maybe do one or two things around the house, and even cook some dinner.
Not much else to report- here's hoping I can find something other than sushi to eat before I get bored of it. :-)
Meanwhile, food and a good night's sleep has me continuing to mend. My sunburn has started to heal finally, which is also nice. Work is chugging along. In just 3 short days I went from feeling like I might collapse when I got home, to feeling like I could go home and maybe do one or two things around the house, and even cook some dinner.
Not much else to report- here's hoping I can find something other than sushi to eat before I get bored of it. :-)
Monday, August 15, 2016
Monday, Monday...
Well, I made it back to work! Got a good night's sleep and woke up feeling- well, good enough to work. :-P I'm not running any marathons, but things are continuing to improve steadily. My mouth feels a little better today, and I've been steadily tapering off my support meds.
Possibly the best part of today was being able to clean up the dogs- Ruff and Sally were both getting pretty scruffy. :-P
Gonna keep myself on a modest schedule through Saturday, and then we're off to the Big Apple!
Possibly the best part of today was being able to clean up the dogs- Ruff and Sally were both getting pretty scruffy. :-P
Gonna keep myself on a modest schedule through Saturday, and then we're off to the Big Apple!
Saturday, August 13, 2016
Day... I dunno. Saturday. :-P
Definitely on the noticeable upswing now. Still tired, but it's not as insane as it was. The loss of my taste buds again kind of sucks, but I'm coping. And (knock on wood) the Claritin that nurses suggested I take before my Neulasta shot seems to be mitigating the aches and pains I dealt with last round. Plus I have no pump and I got a real shower! All in all, the last 24 hours have been quite satisfactory, all things considered.
I opted to take the weekend to continue resting, rather than try to do anything and dampen my recovery. I have a full and I'm sure crazy week of work ahead of me, plus preparing for our trip next weekend, so I'm just going to play it safe.
So I guess that's about it... oh except we have hotel reservations for NYC now! So that's good. :-) Fingers crossed for great things!
I opted to take the weekend to continue resting, rather than try to do anything and dampen my recovery. I have a full and I'm sure crazy week of work ahead of me, plus preparing for our trip next weekend, so I'm just going to play it safe.
So I guess that's about it... oh except we have hotel reservations for NYC now! So that's good. :-) Fingers crossed for great things!
Thursday, August 11, 2016
Day 3
24 hours til unhooking time. Can't wait. The pump doesn't hurt, but it gets in the way of everything, and I can't take a proper shower. Really annoying.
Feeling fractionally better than yesterday. Still beyond tired, but still eating and drinking okay. Managed to take Ruff to the vet for his follow up this afternoon, but other than that, it's pretty much been the couch again.
Oh well- we're in the midst of a rotten heat wave anyway, so at least I'm not missing much. It's too gross to do anything fun anyhow. Hopefully my convalescence will coincide with better weather!
Feeling fractionally better than yesterday. Still beyond tired, but still eating and drinking okay. Managed to take Ruff to the vet for his follow up this afternoon, but other than that, it's pretty much been the couch again.
Oh well- we're in the midst of a rotten heat wave anyway, so at least I'm not missing much. It's too gross to do anything fun anyhow. Hopefully my convalescence will coincide with better weather!
Wednesday, August 10, 2016
Day 2
Well I spent most of yesterday sleeping. Felt pretty rough- not sick, thankfully, just drained to the max.
I slept for about 12 hours last night, and today I've taken it very easy, and I'm feeling a lot better. Still exhausted, but I've been able to get around a little more, I've only napped a little bit, and my appetite is greatly improved.
Normally, my pump week just involves a lot of boredom, so I did have some plans made that I unfortunately had to cancel. I think the majority of this week will be spent on the couch. I'm not even feeling real optimistic about my CPR class on Sunday, but I'm not ruling it out entirely yet.
Not much else to update- as always, thank you for the thoughts and prayers, and if you're bored, feel free to hit me up anytime to chat. I'm just hanging out here. :-)
I slept for about 12 hours last night, and today I've taken it very easy, and I'm feeling a lot better. Still exhausted, but I've been able to get around a little more, I've only napped a little bit, and my appetite is greatly improved.
Normally, my pump week just involves a lot of boredom, so I did have some plans made that I unfortunately had to cancel. I think the majority of this week will be spent on the couch. I'm not even feeling real optimistic about my CPR class on Sunday, but I'm not ruling it out entirely yet.
Not much else to update- as always, thank you for the thoughts and prayers, and if you're bored, feel free to hit me up anytime to chat. I'm just hanging out here. :-)
Tuesday, August 9, 2016
Chemo Round 3
Hey guys. So yesterday I went back for chemo one more time (hopefully the last time for at least a while). It went good, no problems. Blood work looked good. I was able to receive the Zometa bone treatment for the first time- we will hopefully be continuing that on a 4-6 week schedule for the near future (I'm not sure how long people usually stay on it, I imagine that evaluations will be required to tell if it works or not).
Feeling okay today- pretty tired. I imagine that's a combination of things, including the fact that I spent the weekend out camping and riding horses. We had a great time, but I definitely came home exhausted and a little sunburned. And the Zometa is reported to have some mild flu-like "blah" side effects, which is pretty much what I already get from the chemo. So I'm probably going to spend some extra time on the couch this week compared to last round.
It sounds like my official screening date is the 22nd. We'll probably have to go up a week later to actually get the medication dispensed- it takes 3 weeks between the last day of chemo and the first day you can actually take the new medication.
So that's about it for now- just going to spend the week resting and relaxing, and next week it's back to work and time to start preparing for NYC!
Feeling okay today- pretty tired. I imagine that's a combination of things, including the fact that I spent the weekend out camping and riding horses. We had a great time, but I definitely came home exhausted and a little sunburned. And the Zometa is reported to have some mild flu-like "blah" side effects, which is pretty much what I already get from the chemo. So I'm probably going to spend some extra time on the couch this week compared to last round.
It sounds like my official screening date is the 22nd. We'll probably have to go up a week later to actually get the medication dispensed- it takes 3 weeks between the last day of chemo and the first day you can actually take the new medication.
So that's about it for now- just going to spend the week resting and relaxing, and next week it's back to work and time to start preparing for NYC!
Wednesday, August 3, 2016
Trial Dates & Chemo
Sorry I haven't posted much, there hasn't been anything to update until now.
After a lot of back and forth, it sounds like we won't be going up to NYC for the trial screening until Aug 18th. That means that we're going to have to squeeze a round of chemo in. So they're scheduling that for Monday. I'm going to finish out my work week, and go on the horse camping trip we had planned for this weekend. Then we'll do the chemo, and I'll have my week off. I'm talking to the doc and hoping that they can do the bone-strengthening infusion at the same time as my chemo, that would be really helpful- I'm allowed to ride, but everyone is still nervous about the integrity of my spine, so getting this treatment done would probably help everyone feel a little better.
It would have been nice to get in sooner, but, at least we have hard dates to work with now. And since Dr Kang spoke directly to the trial doctor today, we know that my extra round of chemo won't be an issue for the trial- we'll just have to wait for their 3 week "cleansing" period to be over before I can start the new drug. That's only another week after the screening date, so, no biggie.
Time to go enjoy the rest of my week! The weather is lovely and I'm going riding. :-)
After a lot of back and forth, it sounds like we won't be going up to NYC for the trial screening until Aug 18th. That means that we're going to have to squeeze a round of chemo in. So they're scheduling that for Monday. I'm going to finish out my work week, and go on the horse camping trip we had planned for this weekend. Then we'll do the chemo, and I'll have my week off. I'm talking to the doc and hoping that they can do the bone-strengthening infusion at the same time as my chemo, that would be really helpful- I'm allowed to ride, but everyone is still nervous about the integrity of my spine, so getting this treatment done would probably help everyone feel a little better.
It would have been nice to get in sooner, but, at least we have hard dates to work with now. And since Dr Kang spoke directly to the trial doctor today, we know that my extra round of chemo won't be an issue for the trial- we'll just have to wait for their 3 week "cleansing" period to be over before I can start the new drug. That's only another week after the screening date, so, no biggie.
Time to go enjoy the rest of my week! The weather is lovely and I'm going riding. :-)
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