Well,
it's taken me a while to get to a point where I'm comfortable posting about how
last week went. Not because it went badly, but because it's taken me a
while to get my head around everything, and to understand what was presented to
me.
Wednesday afternoon, a you know, we went to T-Gen to talk with the docs there about potential clinical trials that might be available to me. It's a new-ish building in Scottsdale, and is connected to the cancer center on this medical campus. The area for clinical trials is on the second floor. The best part of this place? The huge stuffed animals that my kids promptly took over and laid with, on, and under. This was where they stayed during the appointment. :)
My first moment of uncomfortable-ness occurred when I got a look at their "chemo room". It's very much like a typical chemo room.....(frantically searching Google Images for a good reference point...). Ah - here you go. This is what the "typical" chemo rooms that I've seen have looked like. Very crowded, no room for caregivers, etc. I was not happy at the prospect of going back into a situation like that, especially with all of the issues that I've had - I don't want/need people starting at me while I'm having a reaction.
Anyways, we (Mom, Levi and I) went into the clinic room and waited for Dr. Ramanathan. When he came in, we went over my medical history, and he did a physical exam. He found a spot on my left abdomen that's been tender for a bit, and thought it was either scar tissue and/or pain from the enlarged lymph nodes in my abdomen.
He then laid out what options I have for me. Xeloda (oral 5-FU), Erbitux (the one that causes me the rash), Regorafenib (the new one that I haven't had yet). He also went over the 6 clinical trials that they have going currently, and told me why 5 of them won't work.
See, when Dr. Kundranda (my med-onc) sent my tumor out to Foundation One for genomic testing, they were able to look at about 80 different "points" on my cancer's DNA. As clinical trials and cancer treatment move more into a personalized type of care (Michelle's colon cancer, rather than *anyone's* colon cancer), they are able to use the genomic information to determine if a new chemo/drug will work. Because of this, Dr. Ramanathan was able to rule out 5 of the 6 drugs they are currently trial-ing. Those drugs work on a particular genomic expression, and my cancer doesn't have those.
While it ruled out many of the options for me, it's pretty cool that they are able to do that.
The other drug that they have available is one that has been used with some success in Japan. There are a few downsides (in my opinion) to this. One - for the first three weeks, I have to be on-site 3-4 days a week. One of the days each week is a 12-13 hour day (not including the hour to hour-and-a-half drive, one way, there and back). The others range anywhere fro 30 minutes to 2 hours. Additionally, there hasn't been a great response rate (10-20%).
We did get all of the information about the clinical trial, and planned to take it home to try to absorb it. I've tried reading the information - seriously, you guys, it's like stereo instructions. Add to that the fact that my brain is like a sieve right now, and it's not a good combination.
Friday, Mom and I went to meet with Dr. Kundranda to talk about the clinical trials options, and to kind of work out a new gameplan. Here's the thing - I understand, logically, why me taking part in a clinical trial is a good thing. But, my gut instinct says that this isn't the one I need to do. I'm not comfortable (at all) with this, and with going to Scottsdale so often.
So, I asked Dr. K. what other options we have. He is looking outside the box (one of the things I adore about him), and talked with us about a drug called Temodar, which is an oral chemotherapy used in brain cancer patients. The reason he feels this may be a good fit for me is that, in the genomic profiling, my tumor marker has a low MGMT expression....this drug works using that. I tried to look up what exactly this means - the information on Google is all so much smarter than I am that I'm just going to accept it for face value. :)
The good news is that this drug has few side effects, and is generally tolerated well. It's a pill I take for 21 days, then I get 7 days off. I like the sounds of that. The side effects that I can expect are nausea (sigh- I just can't get away from that one), constipation, fatigue, and my blood counts (white, red,etc.) will drop. So, nothing I haven't dealt with before, but things I think I can tolerate/handle well.
We are doing a baseline CT scan today. I'm super nervous. I don't know what this tenderness in my abdomen is, and I'm petrified it's another tumor. But, it's better to find out and know, than to just ignore it. The good news is that, while my CEA count is up to the highest I've ever seen it, it's still fairly low, at 14.0. Both docs indicated to me that my cancer is slow growing, and that my tumor burden is low. I like that - I'd just like it more if the tumor burden was gone, and my CEA was under 3. But, we'll get there.
We will get there.
*******************************
I'm still struggling with eating. It's so weird. I don't know if you've ever been at a point in your life where you just aren't hungry. Nothing sounds good, you're not feeling hungry....this is all normal for me right now. Yesterday was a particularly bad day - I ate a little bit for breakfast...not much because I didn't care for the coconut milk we had. I didn't eat anything else until pm, when my stomach apparently rebelled and I started to feel super nauseous, my stomach actually hurt, and I felt like I was going to pass out. The kids brought me some nuts and dried fruit, and it took me about another hour before I finally felt okay again. Even then, I was weak and shaky. So, I ate some more, and within an hour, I was able to go grocery shopping.
So, this is just another reminder that I have to eat, even if I don't want to. It's so strange. I don't know what it's going to take to get my body back into a mode where I want to eat. Seriously, I don't have any cravings to eat. It's not like I get to lunchtime and I'm hungry. I may have a moment or two where I feel that way, and then it's gone. Right now, I'm only eating because I have to.
But, I am eating. Before y'all jump down my throat, I am eating. Dried fruit, nuts, cheeses, organic protein shakes mixed in with my iced coffee (for the nutrients and the calories), etc. I do feel better when I eat - that much is for sure. I just put reminders on my calendar (and my phone will send reminders) to eat every two hours. It seems like a lot, but if I don't, I get lethargic, etc.
And, who am I reminding? Me. I'm sure you all understand how important feeding your body properly is, right? Ha. I thought I knew - my body is telling me that the way I've been eating (not at all, or only a little bit at three meals a day) isn't right. So, I'm going to try to transition myself into a 6-7 small meals a day kind of girl. I'll let you know how that works out for me.
For now, I'm down 1-2 sizes, and am at my lowest weight in years. I want to stabilize here, and to stay steady for a while. I still have a lot that I could lose, but I need to be losing it in a healthy way. Same goes for anything I gain - it needs to be muscle mass, not fat.
*sigh* I never, ever thought I'd be wondering "What high-calorie snack should I eat next?"
**********************************
What else? I feel like there was something else I was going to blog about, but I can't remember what it was. I did go on the winery tour this weekend. It was gorgeous - Saturday morning was cool and rainy here, so we weren't sure how the day was going to pan out, but it dried up and warmed up later in the day. The drive up to Cornville (you can't make this stuff up) was gorgeous, and the views were spectacular. We had tastes of 9 different wines, and it reinforced for me that I'm still not a wine drinker. I like the sweeter wines, like their Moscato. There was also a wine/brandy dessert wine that was nice.
After the first wine tasting, we went to lunch at a little off-the-beaten-path Mexican restaurant, and had some good conversation (nothing about kids or cancer - it was wonderful!). Then, we headed to another gorgeous winery, where we walked the grounds and sampled the fruits (don't tell anyone). Then, we headed home....I was exhausted. But, in a good way.
The time away helped, and helped remind me how important it is so get away from things every once in a while. So, if you're in the area and want to get together, let me know. :)
I'll let you all know how the CT scan goes today. We should have results today or tomorrow. (Hoping I get them today...) If all goes well, I should start this new chemo tomorrow or Wednesday.
Rock on, my peeps. Have a fabulous Monday!
Wednesday afternoon, a you know, we went to T-Gen to talk with the docs there about potential clinical trials that might be available to me. It's a new-ish building in Scottsdale, and is connected to the cancer center on this medical campus. The area for clinical trials is on the second floor. The best part of this place? The huge stuffed animals that my kids promptly took over and laid with, on, and under. This was where they stayed during the appointment. :)
My first moment of uncomfortable-ness occurred when I got a look at their "chemo room". It's very much like a typical chemo room.....(frantically searching Google Images for a good reference point...). Ah - here you go. This is what the "typical" chemo rooms that I've seen have looked like. Very crowded, no room for caregivers, etc. I was not happy at the prospect of going back into a situation like that, especially with all of the issues that I've had - I don't want/need people starting at me while I'm having a reaction.
Anyways, we (Mom, Levi and I) went into the clinic room and waited for Dr. Ramanathan. When he came in, we went over my medical history, and he did a physical exam. He found a spot on my left abdomen that's been tender for a bit, and thought it was either scar tissue and/or pain from the enlarged lymph nodes in my abdomen.
He then laid out what options I have for me. Xeloda (oral 5-FU), Erbitux (the one that causes me the rash), Regorafenib (the new one that I haven't had yet). He also went over the 6 clinical trials that they have going currently, and told me why 5 of them won't work.
See, when Dr. Kundranda (my med-onc) sent my tumor out to Foundation One for genomic testing, they were able to look at about 80 different "points" on my cancer's DNA. As clinical trials and cancer treatment move more into a personalized type of care (Michelle's colon cancer, rather than *anyone's* colon cancer), they are able to use the genomic information to determine if a new chemo/drug will work. Because of this, Dr. Ramanathan was able to rule out 5 of the 6 drugs they are currently trial-ing. Those drugs work on a particular genomic expression, and my cancer doesn't have those.
While it ruled out many of the options for me, it's pretty cool that they are able to do that.
The other drug that they have available is one that has been used with some success in Japan. There are a few downsides (in my opinion) to this. One - for the first three weeks, I have to be on-site 3-4 days a week. One of the days each week is a 12-13 hour day (not including the hour to hour-and-a-half drive, one way, there and back). The others range anywhere fro 30 minutes to 2 hours. Additionally, there hasn't been a great response rate (10-20%).
We did get all of the information about the clinical trial, and planned to take it home to try to absorb it. I've tried reading the information - seriously, you guys, it's like stereo instructions. Add to that the fact that my brain is like a sieve right now, and it's not a good combination.
Friday, Mom and I went to meet with Dr. Kundranda to talk about the clinical trials options, and to kind of work out a new gameplan. Here's the thing - I understand, logically, why me taking part in a clinical trial is a good thing. But, my gut instinct says that this isn't the one I need to do. I'm not comfortable (at all) with this, and with going to Scottsdale so often.
So, I asked Dr. K. what other options we have. He is looking outside the box (one of the things I adore about him), and talked with us about a drug called Temodar, which is an oral chemotherapy used in brain cancer patients. The reason he feels this may be a good fit for me is that, in the genomic profiling, my tumor marker has a low MGMT expression....this drug works using that. I tried to look up what exactly this means - the information on Google is all so much smarter than I am that I'm just going to accept it for face value. :)
The good news is that this drug has few side effects, and is generally tolerated well. It's a pill I take for 21 days, then I get 7 days off. I like the sounds of that. The side effects that I can expect are nausea (sigh- I just can't get away from that one), constipation, fatigue, and my blood counts (white, red,etc.) will drop. So, nothing I haven't dealt with before, but things I think I can tolerate/handle well.
We are doing a baseline CT scan today. I'm super nervous. I don't know what this tenderness in my abdomen is, and I'm petrified it's another tumor. But, it's better to find out and know, than to just ignore it. The good news is that, while my CEA count is up to the highest I've ever seen it, it's still fairly low, at 14.0. Both docs indicated to me that my cancer is slow growing, and that my tumor burden is low. I like that - I'd just like it more if the tumor burden was gone, and my CEA was under 3. But, we'll get there.
We will get there.
*******************************
I'm still struggling with eating. It's so weird. I don't know if you've ever been at a point in your life where you just aren't hungry. Nothing sounds good, you're not feeling hungry....this is all normal for me right now. Yesterday was a particularly bad day - I ate a little bit for breakfast...not much because I didn't care for the coconut milk we had. I didn't eat anything else until pm, when my stomach apparently rebelled and I started to feel super nauseous, my stomach actually hurt, and I felt like I was going to pass out. The kids brought me some nuts and dried fruit, and it took me about another hour before I finally felt okay again. Even then, I was weak and shaky. So, I ate some more, and within an hour, I was able to go grocery shopping.
So, this is just another reminder that I have to eat, even if I don't want to. It's so strange. I don't know what it's going to take to get my body back into a mode where I want to eat. Seriously, I don't have any cravings to eat. It's not like I get to lunchtime and I'm hungry. I may have a moment or two where I feel that way, and then it's gone. Right now, I'm only eating because I have to.
But, I am eating. Before y'all jump down my throat, I am eating. Dried fruit, nuts, cheeses, organic protein shakes mixed in with my iced coffee (for the nutrients and the calories), etc. I do feel better when I eat - that much is for sure. I just put reminders on my calendar (and my phone will send reminders) to eat every two hours. It seems like a lot, but if I don't, I get lethargic, etc.
And, who am I reminding? Me. I'm sure you all understand how important feeding your body properly is, right? Ha. I thought I knew - my body is telling me that the way I've been eating (not at all, or only a little bit at three meals a day) isn't right. So, I'm going to try to transition myself into a 6-7 small meals a day kind of girl. I'll let you know how that works out for me.
For now, I'm down 1-2 sizes, and am at my lowest weight in years. I want to stabilize here, and to stay steady for a while. I still have a lot that I could lose, but I need to be losing it in a healthy way. Same goes for anything I gain - it needs to be muscle mass, not fat.
*sigh* I never, ever thought I'd be wondering "What high-calorie snack should I eat next?"
**********************************
What else? I feel like there was something else I was going to blog about, but I can't remember what it was. I did go on the winery tour this weekend. It was gorgeous - Saturday morning was cool and rainy here, so we weren't sure how the day was going to pan out, but it dried up and warmed up later in the day. The drive up to Cornville (you can't make this stuff up) was gorgeous, and the views were spectacular. We had tastes of 9 different wines, and it reinforced for me that I'm still not a wine drinker. I like the sweeter wines, like their Moscato. There was also a wine/brandy dessert wine that was nice.
After the first wine tasting, we went to lunch at a little off-the-beaten-path Mexican restaurant, and had some good conversation (nothing about kids or cancer - it was wonderful!). Then, we headed to another gorgeous winery, where we walked the grounds and sampled the fruits (don't tell anyone). Then, we headed home....I was exhausted. But, in a good way.
The time away helped, and helped remind me how important it is so get away from things every once in a while. So, if you're in the area and want to get together, let me know. :)
I'll let you all know how the CT scan goes today. We should have results today or tomorrow. (Hoping I get them today...) If all goes well, I should start this new chemo tomorrow or Wednesday.
Rock on, my peeps. Have a fabulous Monday!
Comments:
Kidney
Girl said...
Love
the part about the genetic testing. It's amazing how far oncology has come over
the years. There may not be a perfect fit for your tumor, but thankfully you
know your time is not being wasted with harsh drugs that have no chance of
working! I'm very excited for you and purposefully ignoring the part about the
med that causes the reaction. No more reactions for you!!!
<3
<3
August
26, 2013 at 12:24 PM
I've
been following you for a long time; I have stage three rectal cancer, almost at
the end of chemo now. I just wanted to ask you whether you have tried
marijuana? It really picks up my appetite. I don't use much, I don't like to
get stoned, but even a little bit sprinkled as a herb on food works, or if you
are really in a state where you don't want to look at food, just a puff or two
does it, almost immediately. You should be able to get it legally in your
state, no?
August
27, 2013 at 12:04 AM
Hi,
my name is Monica, my mother in law is your moms friend. I also have cancer,
stage 4 primary pulmonary choriocarcinoma. Basically placenta cancer in my
lungs, not in female organs. I checked out CTCA, but went with a research
oncologist in Scottsdale. It's a great place, I love the Drs the nurses,
everyone is amazing!! If you are looking into trials this might be a good place
for a second option, there are sooo many trials available here, I don't know if
they explained this but each research location has different trials available.
This office is about 45 min -1 hour away, but my care is so worth it! Also the
chemo room is bright n airy, and plenty of room for caregivers, and the chairs
are not right on top of each other. Just a thought!! Their number is 480-860-5000.
Tell them u know me :) there is also a website called inspire.com it's an
amazing place for people with cancer, or any health issue, I have learned so
much, and gotten so much support from the people there, I belong to the lung
cancer group. :) peace and prayers for you!!
August
29, 2013 at 1:37 PM
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