I just saw that expression from the dirtgirlworld page on Facebook and I LOVE it! I'm so using it all the time now! It's especially fitting today, though, because my CAT scan this morning came back showing no new disease. Woohoo!! Now this doesn't mean no disease at all, but that the disease is stable. There are a few areas to watch for, namely some nodules in my lungs that most likely are from inflammation (from something like allergies or a cold), but could be the beginnings of tumors. So we watch them. The lesion on my spine has resolved, the inguinal nodes in my left groin have resolved, and, my favorite, my gallbladder, spleen, pancreas, adrenal glands, bladder, uterus, and remaining fallopian tube are all unremarkable (I love that word). There has been a mild decrease in fluid in my left lung, and a mild increase in my right, but my doc doesn't think that means much of anything right now. The fluid is still minor and not an immediate cause for concern.
Ok, so we continued today on the same treatment of epirubicin and 5-FU(!). I was convinced the cancer on my skin was spreading, but my doc said the lesions she originally saw (which I did not) are gone, and the remaining rash looks like it may be from inflammation rather than cancer. So same treatment today with the understanding that we will reassess the skin at my next appointment and, if it seems to be spreading, she will change my treatment then. We'll assess using, as she says, our "external CAT scan," or my skin. She also let me know we still have other treatments to consider before moving to clinical trials, and since I'm unknown primary, after the standard gastric treatments, she can essentially just make stuff up as she sees fit, which I thought was funny. Like a mad scientist, she can throw treatments in a glass beaker filled with green, smoking fluid, and inject me with it at will. Mmmmwwwahahahahaaaaaa.
So as for the clinical trials, I was rejected for the first one she applied me for, as it was for gastric cancer and I am unknown primary. She has submitted my info for an immunotherapy-based trial which I am STOKED about, since that's the treatment I want, being that the cancer is in my lymphatic system and the lymphatic system is the body's major immune system. However, very few people are selected for this trial as they have to be positive for a certain protein expression, and very few people have it. In addition, they may say no solely based on my diagnosis, which is not gastric cancer. So I expressed concern over this, but Dr. Dotan assured me that I would be accepted at least for Phase I trials even with my diagnosis, and there are plenty of phase I immunotherapy trials in the works. Phase I trials are done to determine toxicity in humans, as the drugs have not been tested on humans before. Whatevs. Like I'm not a human guinea pig already. If it works, who cares that it went straight from a rat to me??
Ok, so that's the news today. As I will most likely be sleeping all weekend (this treatment does that to me), I'd like you all to pop on your happy goggles and go enjoy the weather, wherever you are!
xo,
Lisa
PS - As I mentioned last time, there is a lot of bad juju going on in my immediate cancer world, so if you would, please send those good vibes to all survivors, caregivers, and those whose fight is ending. Let's do a universal spirit lift this weekend, shall we?!
Friday, April 25, 2014
Wednesday, April 16, 2014
Spring anew, opinions abound
I realize it has been a while, but I don't have much new to say. Well, that's not entirely true. There is enough to tell, but I'm tired of talking about it.
I had my appointment at Penn and saw Dr. Titlebaum, who specializes in GI cancers and unknown primary. They seem to go hand in hand within the world of oncology. Anyway, nothing surprising from her except that she thinks my case is interesting. She kept repeating it. Interesting. This is not new to me. If anyone knows anything about the Cochran family medical history, we are nothing if not interesting. Anyway, Dr. Titlebaum told me I have a rare opportunity to see how my treatment is working without needing a scan, due to the cancer rash on my skin. You might think, "Oh yeah, that's awesome, you can see it getting better!" You'd be wrong. It seemed to get better before my last treatment, prompting a joyous response and a "Let's DO this!" attitude, but since then, the rash has gotten worse. Every morning I look in the mirror to see it has spread across my torso, and every night I go to bed in pain from the swelling in my chest and shoulders, a result of the day. By morning the swelling is down, but that rash is always a reminder that things have not gotten better. I was due for treatment this Friday but, with the Easter holiday, we pushed it back a week. Now part of me is regretting that decision, but I have the day off with Kat and I want to keep that mommy/daughter day for just the two of us, so I'm not calling to change it.
Oddly, my worry is not that this is the end and nothing else will work, although, understandably, that does occasionally overtake any strengthening thoughts I have. No, my real worry is that I'm giving the cancer a chance to spread before trying a new treatment, and that one extra week, I fear, is going to be the difference. I'm not sure that's the case, but it's in the back of my mind. Well, the front of my mind, really. And my entire goal is to keep it in my lymph system. Just keep it there and I've got a chance. Don't let it spread to the organs. So I do yoga and reduce my sugar intake in the hopes of controlling the swelling and starving out the cancer until the next treatment. Just keep it where it is.
Anyway, the one interesting thing Dr. Titlebaum said was I present like a breast cancer patient, except for the cancer being found in the groin, but I'm reacting to treatment as a gastric cancer patient. As such, I am more likely to be approved for breast cancer style treatments (which are abundant), so I have slightly more options than most gastric cancer patients. Doesn't mean they'll work, but I have them available.
I've been "accepted" for an appointment at Memorial Sloan Kettering, which is scheduled for May. No lie, accepted. I called there to make an appointment at my doctor's recommendation and was told, after much back and forth and talks about needing more options for clinical trials, that they had nothing there for me. Well duh - there are no treatments for unknown primary. It might be nice to look at my case though, before you tell me you have nothing for me. So I got a number for my doc to call and discuss my case and I finally got a call back after a week. I was told, "Dr. Varghese has looked at your file and has decided to accept you for further review. She'd like to make an appointment to discuss things further. I have you scheduled for April 25th, does that work for you?" Uh, no. So I scheduled the appointment for the first week in May. Dr. Varghese is also a GI oncologist with experience with unknown primary. I keep hoping one of these docs won't be GI and will think outside the box a bit, but I know GI is the logical place to put me.
And finally, a plea. Please take care of yourselves. We've had a string of bad luck in the cancer world recently, especially the world close to home. Cancer is a horrible, horrible disease that needs to be eradicated, once and for all. Until that time comes, please take care of yourselves, both mentally and physically. Spring is the perfect time to start. Reduce your intake of processed foods, eat more fruits and veggies (should be easy now with the change of seasons!), go out and enjoy the weather with friends and family. Take frequent walks, have long talks, give good hugs. Remember how short life can be and don't abuse the time you have here. You don't want to ever be in a situation where you say, "I wish I would have...."
Happy Passover and Easter all.
xo,
Lisa
I had my appointment at Penn and saw Dr. Titlebaum, who specializes in GI cancers and unknown primary. They seem to go hand in hand within the world of oncology. Anyway, nothing surprising from her except that she thinks my case is interesting. She kept repeating it. Interesting. This is not new to me. If anyone knows anything about the Cochran family medical history, we are nothing if not interesting. Anyway, Dr. Titlebaum told me I have a rare opportunity to see how my treatment is working without needing a scan, due to the cancer rash on my skin. You might think, "Oh yeah, that's awesome, you can see it getting better!" You'd be wrong. It seemed to get better before my last treatment, prompting a joyous response and a "Let's DO this!" attitude, but since then, the rash has gotten worse. Every morning I look in the mirror to see it has spread across my torso, and every night I go to bed in pain from the swelling in my chest and shoulders, a result of the day. By morning the swelling is down, but that rash is always a reminder that things have not gotten better. I was due for treatment this Friday but, with the Easter holiday, we pushed it back a week. Now part of me is regretting that decision, but I have the day off with Kat and I want to keep that mommy/daughter day for just the two of us, so I'm not calling to change it.
Oddly, my worry is not that this is the end and nothing else will work, although, understandably, that does occasionally overtake any strengthening thoughts I have. No, my real worry is that I'm giving the cancer a chance to spread before trying a new treatment, and that one extra week, I fear, is going to be the difference. I'm not sure that's the case, but it's in the back of my mind. Well, the front of my mind, really. And my entire goal is to keep it in my lymph system. Just keep it there and I've got a chance. Don't let it spread to the organs. So I do yoga and reduce my sugar intake in the hopes of controlling the swelling and starving out the cancer until the next treatment. Just keep it where it is.
Anyway, the one interesting thing Dr. Titlebaum said was I present like a breast cancer patient, except for the cancer being found in the groin, but I'm reacting to treatment as a gastric cancer patient. As such, I am more likely to be approved for breast cancer style treatments (which are abundant), so I have slightly more options than most gastric cancer patients. Doesn't mean they'll work, but I have them available.
I've been "accepted" for an appointment at Memorial Sloan Kettering, which is scheduled for May. No lie, accepted. I called there to make an appointment at my doctor's recommendation and was told, after much back and forth and talks about needing more options for clinical trials, that they had nothing there for me. Well duh - there are no treatments for unknown primary. It might be nice to look at my case though, before you tell me you have nothing for me. So I got a number for my doc to call and discuss my case and I finally got a call back after a week. I was told, "Dr. Varghese has looked at your file and has decided to accept you for further review. She'd like to make an appointment to discuss things further. I have you scheduled for April 25th, does that work for you?" Uh, no. So I scheduled the appointment for the first week in May. Dr. Varghese is also a GI oncologist with experience with unknown primary. I keep hoping one of these docs won't be GI and will think outside the box a bit, but I know GI is the logical place to put me.
And finally, a plea. Please take care of yourselves. We've had a string of bad luck in the cancer world recently, especially the world close to home. Cancer is a horrible, horrible disease that needs to be eradicated, once and for all. Until that time comes, please take care of yourselves, both mentally and physically. Spring is the perfect time to start. Reduce your intake of processed foods, eat more fruits and veggies (should be easy now with the change of seasons!), go out and enjoy the weather with friends and family. Take frequent walks, have long talks, give good hugs. Remember how short life can be and don't abuse the time you have here. You don't want to ever be in a situation where you say, "I wish I would have...."
Happy Passover and Easter all.
xo,
Lisa
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