I'd almost forgotten how this all works; the outpouring of love and support began days ago, and I just now remembered my mechanism of delivering thanks! Here, in italics before my posts, I will write brief notes of thanks to people who have shared their generosity and time with my family. I don't use first names, just the first letter of your name (or other anonymous identifiers like "dad") and maybe a little indication of how I know you if I'm concerned about ambiguity. If you sent something and never see a thank you here, do reach out to me because it's possible that we missed it and I don't want to miss a thing! I acknowledge that this is not as good of etiquette as an actual thank-you note, but this is what I can manage in my life right now, and it seemed to work before. <3
Dad and B: Thank you so much for the delicious pies and for the nice visit, pops (you may have beat me in cribbage this time, but next time you're going down!!). I love you so, so much. BTW, Dr. O asked about you, dad. She said she's looking forward to seeing you SOON (surely she has an agenda; I don't know what it is, but she specifically asked for YOU). I'll see her next Friday at 4:30; would love to have you along if you have time.
M: Thank you so much for the key lime pie! It's the best I've ever had, even better than the drunken ones my friends and I would bake in college at 1 am (yes, we did that. Love you, college friends!).
A: Thank you so much for the coloring book and Legos and beverages. You are so thoughtful to think of my daughters. I treasure my time with them, and with you, and it was even better that you stopped by to share the joy with us.
N from college: Thank you so much for the YOU GOT THIS socks! And the box they came in has family photos printed in it! Did you know that? Both the socks and the box are so unbelievably awesome. I am saving the socks to wear to my SRS treatment on Monday, because I need to be reminded that I've got this. Thank you, friend!
N from work: Thank you so much for the banana bread! It was gone within 24 hrs. It has been most enjoyable to watch your cooking and baking skills grow, and I am now grateful to reap the benefits!
C from my work, and some of my spouse's co-workers: It was so very thoughtful of you to send flowers! They are all so beautiful. The girls each asked to take a bouquet upstairs to their bedrooms, so our whole house is fragrant and vibrant, which is just what we need right now. Thank you for your generosity!
MIL: Thank you for taking care of my girls when the spouse and I go to appointments. And for feeding them, and us, with your nourishing food. I love you when I'm not dealing with this shit, but when I am dealing with this shit the love transcends to such a depth of gratitude that I can't hardly handle it. You are invaluable to the peaceful survival of my family, and knowing that they will survive is an essential element of my hope and recovery!!!! I hate bringing this turmoil upon them!!!
Alright, guys. Shit got real yesterday. I met with Dr. Oncologist, my primary oncologist who has been with me since my original inflammatory breast cancer (IBC) diagnosis over 7 years ago. This was my first time seeing her since I received the results of my brain MRI because she was out of the office that day. She answered all of my questions and gave me some additional answers, one of which I'd prefer if I still didn't know.
I don't think I'll be able to write anything else unless I dispense with the bad news, because it's just knawing on me. Please note that my choice to blog about it is for me, not for you; I'd prefer not to share this with you, but it's gotta come out. I hate knowing my official prognosis, because it's never been good (IBC only has a 50% 5-year survival rate--I've BEAT THAT!! Huzzah huzzah huzzah!!! This is so important to remember and celebrate!!!), so if I avoid the hard data it's easier for me to live without watching my clock of time tick away. I have no intention of changing that attitude, but to do so the following information needs to be deleted from my brain: Dr. O said that usually patients in "this situation" live another "12-24 months". She did not elaborate on what precisely is meant by "this situation" (that is, is it the size or location of my particular tumor, or just the tumor itself? Not that it matters), but clearly what is meant by "this situation" is some form of metastatic breast cancer in the brain. I voiced my confusion, because Dr. Radiation Oncologist had played up the optimism of the efficacy of SRS treatment (90-95% effective). She said yes but there will likely be other tumors and eventually many patients decide that they are tired of the treatments and then choose palliative care. Okay, I'm reaaaaaalllllly far from that, guys, so hopefully my outward health will help me to live somewhat normally for quite some time. Long story short, though, is that this is the beginning of a tumor-in-the-brain journey. Hopefully it's nice and long!!!!
My spouse asked a question about why we're in this situation? Why was Lloyd not on the PET scans, etc.? She brushed it away with a disappointing but psychologically helpful answer: "This had to happen". Apparently this is just what happens with people like me who had metastatic HER2 positive cancer and have been on anti-HER2 treatment. The anti-HER2 treatments (the Herceptin and Perjeta that I've been taking every 3 weeks for 4 years) don't cross the blood-brain barrier, so the brain is the only unprotected place in the body. So, tumors in the brain are precisely what happens. Am I glad I didn't know that before? AbsoF&*^inglutely, because I would have been fearing it, and fear is the greatest enemy to life. (I have several musings about fear, and these are some potentially good ones here and here and here.) But, the scientist in me wishes I had been aware, because I would have been paying far more attention to my brain function and possibly could have called for a brain MRI months ago, before Lloyd got so big and painful! [The ignorance is my own fault, but I don't like to too deeply research my condition because the stats are so depressing. I rely on others [my siblings, anyone else] to do the research and decide what needs to be disclosed to me.] Doesn't matter. Point is, this is exactly where I'm expected to be, given my medical history. All there is to do is deal with it, and that's where I excel! Give me a hoop, and I will jump through it!! I'm a finisher, so I'm gonna finish Lloyd on Monday, and then the next cancer task, and the next one, for as long as I can.
Now that I've brought you down, please allow me to try and lift you up again. My HER2 cancer expert at the prestigious University hospital down the road told me that the key to surviving this crap is to survive long enough until the next drug is available. There's still no cure, but new treatments are quickly becoming available. Good news: CARNATION NATION, we DID JUST THAT!!! We survived until the next treatment is available!! The new drug is called neratinib and it just completed clinical trials. It has only been available for about 6 months! It is approved for extended adjuvant therapy (that's me--"extended adjuvant therapy" means "years of anti-HER2 [or other specific cancer] treatment"), it targets HER2, and it CROSSES THE BLOOD BRAIN BARRIER. Also--it is ORAL! So, not only do I get to be one of the first patients using a new drug specifically designed to fight HER2 cancers in the brain, I get to take it by pill form instead of my tri-weekly chemo infusions! How amazing is that?!?!
That's right, I get to stop using the Herceptin and Perjeta. They have done a fantastic job of controlling the metastatic cancer in my lungs (it's completely gone!), and I remain infinitely grateful to their existence, my access to them, and my insurance coverage. The reason I can stop taking them is because the neratinib will do the job that they aren't doing; the neratinib will actually do the WHOLE body, including my brain that has been elusive to the Herceptin and Perjeta. So, if like me you are nervous about stopping the Herceptin and Perjeta that have worked so well, we must remind ourselves that the game has changed and our new perspective is that yes they worked well for the previous problem, but they do not work at ALL for the current problem. We must focus on the current problem, for obvious reasons.
The two most important dots to connect in this post are "12-24 months" and "neratinib". The existence of neratinib, and my access to it, will hopefully revise the "12-24 months" prognosis in ways that cannot be predicted. Please join me on my crusade to delete "12-24 months" from my mind and remind me of the hope afforded by neratinib. In addition, I was previously diagnosed with those dreaded lung metastases, which many of us feared would have killed me long ago, but I started the then-new Perjeta and look where it got me. Hope and faith, people. Hope and faith.
I think my last piece of news is that I'm now playing side-effect roulette again. This won't be as bad as chemo, but might prove to be interesting. I told Dr. O that I still have a headache even after being on the dexamethasone steroid for a week, and my high-res MRI showed that I still have brain swelling, so Dr. O is upping my dose of the 'roids. Instead of 8 mgs per day, I'm now to take 24 mgs per day. Whelp. Sleeping was nice, lol. The 'roids are important because the brain swelling needs to go DOWN. Brain swelling puts me at risk for seizures, and she said I probably shouldn't be driving (but I've been driving for weeks! doh). Also, the SRS treatment will injure my brain and cause more swelling, so it's important to get it under control before the treatment on Monday. Okay, so more 'roids, which has caused an influx of prescription medicine into my house to counter the side-effects of the 'roids. High-level roids such as these often cause fungal infections in the mouth and vagina, so I have an anti-fungal mouthwash to do 4 times per day to prevent an itchy mouth infection, and a pill to pop should a yeast infection arise. High-level 'roids also tear up your guts, so I'm on some stomach acid-controlling pill. Finally, 'roids reduce your immune response, so I'm on an antiviral to prevent cold sores that tend to flare up when one's immune system goes down. (No visitors who are or could be sick, please.) The side effects of most of these new drugs say, "headache and dizziness". My poor brain! What a hot mess it's gonna start to be. But it's important to remember that I remain grateful for these medical resources to keep my body in action while it is dealing with the important job of eliminating a brain tumor.
I almost forgot the most important thing I learned yesterday: the SRS treatment will take place at 4pm on Monday, huzzah! Thank you in advance for your powerful anti-Lloyd and brain-safety vibes that you might send my way at that time!! I'll probably work in the morning, not because I'll feel like it but because I should save my paid time off. I would work from home, but the new leadership in my job has put a cap on the number of hours that employees can work from home. What new inane inconveniences will they think up next?
I've been letting the kids play video games while I blog, but I probably should switch into dinner-making mode. As always, thank you for your support!
Showing posts with label Pertuzumab. Show all posts
Showing posts with label Pertuzumab. Show all posts
Saturday, January 6, 2018
Saturday, December 30, 2017
A tumor, tentatively named Lloyd
Hello, Carnation Nation! I love you all so much. I hope that for the past year you have been assuming that no news is good news, because you would have been correct. I have wanted many times to share some of my highlights of Living with you, but I have not had a strong inclination to sit down and blog, which causes me to not make the time to blog. (I've been doing a great job of exercising in my free time, including practicing yoga regularly at home in addition to attending a weekly yoga class. If I'm not blogging, then I'm sure you'd like for me to be taking care of myself in this manner, yes?) In the coming weeks I will try to recount some of the highlights from the past year to break up the stress that I am about to start sharing with you.
If no news was good news, then you might be thinking that the reason for this blog post can't be exactly good, can it? You're right, it's not, but I'm going to try to overwhelm you with the positive aspects while discussing the bad news. I assure you, the positive aspects are plentiful.
The brief backstory: I have been having headaches for a few months now. The headaches seem to me to set in on the same days that I receive chemotherapy treatment (which is still Herceptin and pertuzumab (Perjeta), every three weeks, indefinitely) and then slowly go away over the course of a week or two. They aren't awful headaches; only once did I take something to make them go away, and it worked. I thought I was having some new treatment side effect, or perhaps even sinus inflammation from a cold I fought in early winter, and so I wasn't terribly concerned.
In addition, the treatment-headaches come with a treatment-fever, so that's been a bummer and weird. No one as yet has an explanation for the fevers.
After 2 cycles of treatment that came with fever and headaches, Dr. Oncologist (Dr. O) said that it was time for some "pictures", meaning body scans. She was far more worried about the headaches than I was. I was worried about the fevers, thinking that my port was contaminated with a bacterial infection or something! (We tested it; it's not.) I saw her the Friday before Christmas for my normal infusion, and she scheduled the scans for the following week, which has been this week. I had a PET scan and a heart echo on Wednesday, both of which showed Glorious results: my heart is perfect, and the PET showed no evidence of abnormalities. So I marched into my brain MRI this morning with all sorts of confidence, indeed with a bit of confusion as to why I had to proceed with the MRI despite a clean PET scan! But I'm a good patient and humored Dr. O with the brain MRI. It's a good thing I did because the brain MRI revealed a 3 cm tumor way down in the center of my brain! Dammit, PET scans, you've been failing me!!!!
So now we've gotten to the bad news--I have a brain tumor in a location that is REALLY hard to biopsy, so we have to guess what it is and make our treatment plan based on that guess. Here starts the good news, Carnation Nation: 1) we have a lot of data based upon which we can make a good guess and therefore come up with a terrific treatment plan; 2) you won't even BELIEVE how easy the treatment is going to be, and the side effect outlook is quite promising; 3) the tumor appears to have CLEAR MARGINS; 4) The only problem I'm having so far is headaches!
Let's march through the information in numerical order, shall we?
1) My grape-sized tumor, which I'm calling Lloyd because it makes me laugh, is located near my basal ganglia and thalamus. If a brain cancer were to initiate on its own in that location, it would be a glioblastoma, and that would be very rare. Considering my history of metastatic breast cancer (that is, breast cancer cells have previously been found to have spread to my lymph nodes and lungs, both of which are currently cancer-free), the doctors have concluded that it is far more likely that this tumor came from a breast cancer cell that ran away from the breast cancer tumor long ago and set up shop in this cozy little thalamus cafe in my brain (no, you may not have a cup of coffee, Lloyd!!). It is impossible to know which kind of cancer it is without taking a little piece of it, a biopsy, to analyze its contents. A biopsy is possible at certain institutions, but it would be very invasive and dangerous, so given my history we are proceeding to treat it as metastatic breast cancer tumor. In this case, the treatment is RADIATION ONLY!!! No chemo, no surgery! Huzzah!!! Louder! HUZZAH!!!!
2) I encourage you to be excited with me about this treatment option! Radiation will have its hardships, but this girl can handle it. Chemo is the absolute worst, and brain surgery certainly sounds like it could be right up there with chemo. But radiation? I'll have a little fatigue, a little hair loss, and hopefully that'll be it! And check out this radiation technology guys: I will not be having whole brain radiation, I will be having Stereotactic RadioSurgery, or SRS. This is not actual surgery; they use the word "surgery" because the radiation is SO precise that it acts like a scalpel, blasting only the tumor and not my valuable brain tissue. Not only do the data show that this treatment is much more effective than whole brain radiation, but we have nothing to lose by starting with SRS. We can always do whole brain therapy later. Go ahead, ask me how many SRS treatments I'll be having. Have any guesses? Well, I bet you guessed incorrectly, because I'll only be having one SRS treatment. Unbelievable! This is a major score for the H-bomb (that's me, in case you've forgotten) who would really rather save her Paid Time Off for family adventures than use it on pesky cancer treatments. ;) BEST NEWS OF ALL: The SRS treatment is 90-95% effective at killing this kind of brain tumor! Huzzah huzzah huzzah!!!
3) I have had clear margins before, when Dr. Surgical Oncologist (now retired) removed my inflammatory breast cancer. Clear margins is what you want when you have a tumor, because that means that when the doctors draw a line around it, whether it's with a scalpel or radiation or whatever, that line will encompass all of the tumor cells and not leave any wisps of cancer behind. Since I'm not actually having surgery I don't understand how they will actually KNOW that the margins are clear (that is, they won't be able to conduct a pathology analysis), but I'm taking it as good news that the margins APPEAR to be clear. I'll continue to imagine that they are clear. :)
4) So why on earth have I been getting headaches with treatment and at no other times? No one has an answer for that, as of yet. The MRI did show that my brain is inflamed in a rather substantial area surrounding the tumor, so this inflammation is likely causing the headaches. It's probably a lot of pressure to have a grape-sized tumor and a bunch of immune cells in my air-tight skull. Perhaps it's not that the chemo causes the headaches but that the chemo causes me to NOTICE the headaches because I'm generally not very busy or active on chemo days. When I do have a headache, it feels like a dehydration headache, and a little like a sinus headache, and I mostly just ignore it. Then when I get treatment my head feels like a watermelon being hit by a hammer, or perhaps a ripe watermelon wishing it were getting hit by a hammer to relieve the pressure. This last chemo treatment, I took Claritin D for 5 days and got through the worst of the headache, pain-free. I stopped the Claritin D and now have a small niggly headache, and honestly a niggly headache could have been going on for months and I haven't really noticed it. Pain level 1 on a 0-10 scale, 10 being the worst. In hindsight, now that I know that I have a condition that should have been causing headaches, I think that I probably have been having a persistent small headache for a few weeks now. But hindsight is cheating. :) Okay, but I still haven't said what I set out to say in point number 4, which is how grateful I am that headaches are my only problem. Problems associated with issues in this brain location include difficulties swallowing, talking, and with small-motor skills (it's the same part of the brain in which patients with Parkinsons are aflicted). To the best of my knowledge, I have not been having any of those issues. Again, a major huzzah goes here!
Side effects of SRS, Short term: These side effects are ridiculously mild, as I mentioned previously. Fatigue for a few weeks, and possible hair loss around a band of my head where the radiation will enter my skull. My top hair should cover it up sufficiently. These side effects will be manageable thanks to my awesome family, friends, and colleagues who will no doubt help me get plenty of rest (provided I can get out of the Zone for a few hours a day).
Side effects of Lloyd or SRS, Long term: Alright, these are a bit more bummer-y, but they are rare-ish (I didn't write down percentages in my notes, but as I recall they were each very good numbers, in the neighborhood of 10%) so I'll take it. The two main potential long-term side effects are as follows: A) radiation necrosis at the boundary of the tumor. This means that the radiation could cause tissue damage to the brain cells very near to the edge of the tumor. Nerve cells are hardy, so this doesn't happen terribly often. But when it does happen it's bad because your immune cells go in to clean up the dead brain cells and cause an even bigger problem. They start a chain reaction of damaging further nearby cells, extending the brain killing-spree out farther and farther into healthy brain tissue. The only way to stop it is to surgically remove the necrotic brain tissue--boo. B) The tumor could be invading the basal ganglia. I'm not sure how this relates to my so-called clear margins, because it seems to me that if I have clear margins then this would not happen, but Dr. Radiation Oncologist (Dr. RO) listed it for me, so I'm listing it for you. He also said that the basal ganglia is "durable". I have no idea what on earth that could possibly mean, but it's a terrific word and I'm going to hang onto it. Its durability is perhaps why the invasion of it by the tumor is rare? But I would think that this issue would be dependent on the cancer itself? I have no idea on this one, guys. I'll try to find out more.
Either A or B would be a bummer in terms of the potential side effects. Dr. RO said that weird neurological things could develop over the next year if either A or B play out, such as loss of small motor skills and other functions of the basal ganglia. Obviously that would suck a whole, whole lot, mostly because I still haven't finished the afghan I'm crocheting for my brother's wedding (he married an intelligent, kind, and fun-loving soul [a catch!] in September 2017; I'm just a tad late) so I need small motor skills at the very least until I get that done. I have my priorities!!! So we'll keep an eye on possible side effects A and B over the next year, and I'll use my magical healing powers to focus healing thoughts to my durable yet precious basal ganglia and thymus.
Other item: Today I had to start taking a steroid to reduce the inflammation in my brain, because the inflammation could cause damage, seizures, etc. I'm taking my old pal, dexamethasone. Ugh I HATE dexamethasone. I have to take this twice a day, starting today, until well after the procedure (because the SRS treatment could cause further inflammation). Indeed, this blog post was brought to you by The Zone, the dexamethaZone, plus the discomfort caused by the fact that my daughters wanted to have a slumber party with me and I was squished in between their bony knees and their new body pillows, ha. ;) My heart was pounding to a Shakira song that Lloyd was spinning for me to the beat of my heart literally on steroids, so I had to get out of bed and release some nervous energy. Hopefully after blogging I can overpower The Zone, and Shakira/Lloyd, and get some much-needed rest.
Other item: What happens to the tumor after it's killed? They clearly have no intention to surgically remove it, so what will my body do with it? Typically this treatment will shrink the tumor by half, and then my body will try its best to break down what's left, calcify it, or turn it into scar tissue. These are three separate processes that will be going on simultaneously, so Lloyd will be a minimized, calcified scar. I'm cool with that.
Other item: One additional question I have for Dr. O, when I next see her, is why this tumor didn't and hasn't shown up on my quarterly PET scans? I've seen the pictures--it's not there. And I want to know why. Related to this point, I will now be having quarterly brain MRIs; that's according to Dr. RO. The purpose of this is to keep our eye on Lloyd for changes, and to make sure Lloyd doesn't invite any friends to the cafe.
I am to the end of my list, and I still can't imagine sleeping, but at least now that I've got these words out of my system perhaps I should try to read myself to sleep. I'm starting a new book, which although exciting, doesn't do a good job of beckoning me to bed. When I'm engaged in a good book I can't WAIT to go to bed. So I gotta get this book started so that it can help me counter the Zone. Goodnight, everyone! Thank you for being a part of my team! My health and my family greatly benefit from your support, even if it's exclusively virtual. xoxoxo
Apologies for any typos or errors; this post got rather long, and every time I read through it I find a small edit or correction, so I'm sure that there are more in there. I think I checked all of the links, but please let me know in the comments if you find one that doesn't work. (>")>
If no news was good news, then you might be thinking that the reason for this blog post can't be exactly good, can it? You're right, it's not, but I'm going to try to overwhelm you with the positive aspects while discussing the bad news. I assure you, the positive aspects are plentiful.
The brief backstory: I have been having headaches for a few months now. The headaches seem to me to set in on the same days that I receive chemotherapy treatment (which is still Herceptin and pertuzumab (Perjeta), every three weeks, indefinitely) and then slowly go away over the course of a week or two. They aren't awful headaches; only once did I take something to make them go away, and it worked. I thought I was having some new treatment side effect, or perhaps even sinus inflammation from a cold I fought in early winter, and so I wasn't terribly concerned.
In addition, the treatment-headaches come with a treatment-fever, so that's been a bummer and weird. No one as yet has an explanation for the fevers.
After 2 cycles of treatment that came with fever and headaches, Dr. Oncologist (Dr. O) said that it was time for some "pictures", meaning body scans. She was far more worried about the headaches than I was. I was worried about the fevers, thinking that my port was contaminated with a bacterial infection or something! (We tested it; it's not.) I saw her the Friday before Christmas for my normal infusion, and she scheduled the scans for the following week, which has been this week. I had a PET scan and a heart echo on Wednesday, both of which showed Glorious results: my heart is perfect, and the PET showed no evidence of abnormalities. So I marched into my brain MRI this morning with all sorts of confidence, indeed with a bit of confusion as to why I had to proceed with the MRI despite a clean PET scan! But I'm a good patient and humored Dr. O with the brain MRI. It's a good thing I did because the brain MRI revealed a 3 cm tumor way down in the center of my brain! Dammit, PET scans, you've been failing me!!!!
So now we've gotten to the bad news--I have a brain tumor in a location that is REALLY hard to biopsy, so we have to guess what it is and make our treatment plan based on that guess. Here starts the good news, Carnation Nation: 1) we have a lot of data based upon which we can make a good guess and therefore come up with a terrific treatment plan; 2) you won't even BELIEVE how easy the treatment is going to be, and the side effect outlook is quite promising; 3) the tumor appears to have CLEAR MARGINS; 4) The only problem I'm having so far is headaches!
Let's march through the information in numerical order, shall we?
1) My grape-sized tumor, which I'm calling Lloyd because it makes me laugh, is located near my basal ganglia and thalamus. If a brain cancer were to initiate on its own in that location, it would be a glioblastoma, and that would be very rare. Considering my history of metastatic breast cancer (that is, breast cancer cells have previously been found to have spread to my lymph nodes and lungs, both of which are currently cancer-free), the doctors have concluded that it is far more likely that this tumor came from a breast cancer cell that ran away from the breast cancer tumor long ago and set up shop in this cozy little thalamus cafe in my brain (no, you may not have a cup of coffee, Lloyd!!). It is impossible to know which kind of cancer it is without taking a little piece of it, a biopsy, to analyze its contents. A biopsy is possible at certain institutions, but it would be very invasive and dangerous, so given my history we are proceeding to treat it as metastatic breast cancer tumor. In this case, the treatment is RADIATION ONLY!!! No chemo, no surgery! Huzzah!!! Louder! HUZZAH!!!!
2) I encourage you to be excited with me about this treatment option! Radiation will have its hardships, but this girl can handle it. Chemo is the absolute worst, and brain surgery certainly sounds like it could be right up there with chemo. But radiation? I'll have a little fatigue, a little hair loss, and hopefully that'll be it! And check out this radiation technology guys: I will not be having whole brain radiation, I will be having Stereotactic RadioSurgery, or SRS. This is not actual surgery; they use the word "surgery" because the radiation is SO precise that it acts like a scalpel, blasting only the tumor and not my valuable brain tissue. Not only do the data show that this treatment is much more effective than whole brain radiation, but we have nothing to lose by starting with SRS. We can always do whole brain therapy later. Go ahead, ask me how many SRS treatments I'll be having. Have any guesses? Well, I bet you guessed incorrectly, because I'll only be having one SRS treatment. Unbelievable! This is a major score for the H-bomb (that's me, in case you've forgotten) who would really rather save her Paid Time Off for family adventures than use it on pesky cancer treatments. ;) BEST NEWS OF ALL: The SRS treatment is 90-95% effective at killing this kind of brain tumor! Huzzah huzzah huzzah!!!
3) I have had clear margins before, when Dr. Surgical Oncologist (now retired) removed my inflammatory breast cancer. Clear margins is what you want when you have a tumor, because that means that when the doctors draw a line around it, whether it's with a scalpel or radiation or whatever, that line will encompass all of the tumor cells and not leave any wisps of cancer behind. Since I'm not actually having surgery I don't understand how they will actually KNOW that the margins are clear (that is, they won't be able to conduct a pathology analysis), but I'm taking it as good news that the margins APPEAR to be clear. I'll continue to imagine that they are clear. :)
4) So why on earth have I been getting headaches with treatment and at no other times? No one has an answer for that, as of yet. The MRI did show that my brain is inflamed in a rather substantial area surrounding the tumor, so this inflammation is likely causing the headaches. It's probably a lot of pressure to have a grape-sized tumor and a bunch of immune cells in my air-tight skull. Perhaps it's not that the chemo causes the headaches but that the chemo causes me to NOTICE the headaches because I'm generally not very busy or active on chemo days. When I do have a headache, it feels like a dehydration headache, and a little like a sinus headache, and I mostly just ignore it. Then when I get treatment my head feels like a watermelon being hit by a hammer, or perhaps a ripe watermelon wishing it were getting hit by a hammer to relieve the pressure. This last chemo treatment, I took Claritin D for 5 days and got through the worst of the headache, pain-free. I stopped the Claritin D and now have a small niggly headache, and honestly a niggly headache could have been going on for months and I haven't really noticed it. Pain level 1 on a 0-10 scale, 10 being the worst. In hindsight, now that I know that I have a condition that should have been causing headaches, I think that I probably have been having a persistent small headache for a few weeks now. But hindsight is cheating. :) Okay, but I still haven't said what I set out to say in point number 4, which is how grateful I am that headaches are my only problem. Problems associated with issues in this brain location include difficulties swallowing, talking, and with small-motor skills (it's the same part of the brain in which patients with Parkinsons are aflicted). To the best of my knowledge, I have not been having any of those issues. Again, a major huzzah goes here!
Side effects of SRS, Short term: These side effects are ridiculously mild, as I mentioned previously. Fatigue for a few weeks, and possible hair loss around a band of my head where the radiation will enter my skull. My top hair should cover it up sufficiently. These side effects will be manageable thanks to my awesome family, friends, and colleagues who will no doubt help me get plenty of rest (provided I can get out of the Zone for a few hours a day).
Side effects of Lloyd or SRS, Long term: Alright, these are a bit more bummer-y, but they are rare-ish (I didn't write down percentages in my notes, but as I recall they were each very good numbers, in the neighborhood of 10%) so I'll take it. The two main potential long-term side effects are as follows: A) radiation necrosis at the boundary of the tumor. This means that the radiation could cause tissue damage to the brain cells very near to the edge of the tumor. Nerve cells are hardy, so this doesn't happen terribly often. But when it does happen it's bad because your immune cells go in to clean up the dead brain cells and cause an even bigger problem. They start a chain reaction of damaging further nearby cells, extending the brain killing-spree out farther and farther into healthy brain tissue. The only way to stop it is to surgically remove the necrotic brain tissue--boo. B) The tumor could be invading the basal ganglia. I'm not sure how this relates to my so-called clear margins, because it seems to me that if I have clear margins then this would not happen, but Dr. Radiation Oncologist (Dr. RO) listed it for me, so I'm listing it for you. He also said that the basal ganglia is "durable". I have no idea what on earth that could possibly mean, but it's a terrific word and I'm going to hang onto it. Its durability is perhaps why the invasion of it by the tumor is rare? But I would think that this issue would be dependent on the cancer itself? I have no idea on this one, guys. I'll try to find out more.
Either A or B would be a bummer in terms of the potential side effects. Dr. RO said that weird neurological things could develop over the next year if either A or B play out, such as loss of small motor skills and other functions of the basal ganglia. Obviously that would suck a whole, whole lot, mostly because I still haven't finished the afghan I'm crocheting for my brother's wedding (he married an intelligent, kind, and fun-loving soul [a catch!] in September 2017; I'm just a tad late) so I need small motor skills at the very least until I get that done. I have my priorities!!! So we'll keep an eye on possible side effects A and B over the next year, and I'll use my magical healing powers to focus healing thoughts to my durable yet precious basal ganglia and thymus.
Other item: Today I had to start taking a steroid to reduce the inflammation in my brain, because the inflammation could cause damage, seizures, etc. I'm taking my old pal, dexamethasone. Ugh I HATE dexamethasone. I have to take this twice a day, starting today, until well after the procedure (because the SRS treatment could cause further inflammation). Indeed, this blog post was brought to you by The Zone, the dexamethaZone, plus the discomfort caused by the fact that my daughters wanted to have a slumber party with me and I was squished in between their bony knees and their new body pillows, ha. ;) My heart was pounding to a Shakira song that Lloyd was spinning for me to the beat of my heart literally on steroids, so I had to get out of bed and release some nervous energy. Hopefully after blogging I can overpower The Zone, and Shakira/Lloyd, and get some much-needed rest.
Other item: What happens to the tumor after it's killed? They clearly have no intention to surgically remove it, so what will my body do with it? Typically this treatment will shrink the tumor by half, and then my body will try its best to break down what's left, calcify it, or turn it into scar tissue. These are three separate processes that will be going on simultaneously, so Lloyd will be a minimized, calcified scar. I'm cool with that.
Other item: One additional question I have for Dr. O, when I next see her, is why this tumor didn't and hasn't shown up on my quarterly PET scans? I've seen the pictures--it's not there. And I want to know why. Related to this point, I will now be having quarterly brain MRIs; that's according to Dr. RO. The purpose of this is to keep our eye on Lloyd for changes, and to make sure Lloyd doesn't invite any friends to the cafe.
I am to the end of my list, and I still can't imagine sleeping, but at least now that I've got these words out of my system perhaps I should try to read myself to sleep. I'm starting a new book, which although exciting, doesn't do a good job of beckoning me to bed. When I'm engaged in a good book I can't WAIT to go to bed. So I gotta get this book started so that it can help me counter the Zone. Goodnight, everyone! Thank you for being a part of my team! My health and my family greatly benefit from your support, even if it's exclusively virtual. xoxoxo
Apologies for any typos or errors; this post got rather long, and every time I read through it I find a small edit or correction, so I'm sure that there are more in there. I think I checked all of the links, but please let me know in the comments if you find one that doesn't work. (>")>
Monday, February 9, 2015
Optimistic
Today my dad and I made another trip to the other town to visit my other oncologists. The driving conditions were perfect: clear roads and overcast sky. The highlight of the road trip entertainment was the electronic over-the-road sign that broadcasts traffic updates. Today it read, "Hey bobblehead stop looking at your phone." We crossed the state and passed under at least three of these electronic signs, all of which said the same thing. That guy or gal has too much fun.
The purpose of this trip was to deliver disks of my recent PET scan and to get their opinions on my continued treatment plan. We first saw Dr. Medical Oncologist. She was thrilled with the clean PET scan result and agreed that it couldn't have been better. She thinks that I should continue to have PET scans every 3-4 months for now, and that I should see her again in 6 months. She also maintains that I should continue the Herceptin+Pertuzumab treatments indefinitely. I asked her about side effects on my heart, or what we should do if my body decides to reject this treatment, and she said that it would have to be pretty bad to get her to quit the treatment. Her2+ cancers (that's mine!) are nasty, so it's better to suffer a bit of heart damage than to risk the potential consequences of ceasing the treatment.
That led me to a question about prognosis. A few people at work have asked me about it, and I haven't known what to tell them. My prognosis is technically "poor" because the best evidence suggests that I had (have?) stage 4 cancer. That's cancer that has spread past its original source into an incurable location. My question for her, then, is whether I should tell people that my prognosis is poor even though I am clearly doing so well and have unproven metastatic lung cancer that has nearly gone away? (I'll discuss the "nearly" part next.) She then looked me in the eye and asked if I wanted her answer based on the previous data, or if I would settle for the word "optimistic". The reason for this cryptic response is because I am on a therapy that has only existed for a year, and I have been on this therapy for its entire existence. There are no previous data points on which to draw that would answer my prognosis question. The previous data points didn't have the awesome treatment that I'm on. Therefore, her expectation and her hope is that I will do better than what the available data would suggest for me. I am the new data point. I therefore opted to decline the technical answer to my prognosis question and accepted the word optimistic. It suits me better, anyway.
Then dad and I took an intermission to inhale our lunch at our favorite falafel joint in the universe. Oh man was it good, but we ate way too fast.
We scurried back to the clinic to meet with Dr. Pulmonary Oncologist. This ended up being every minute worth the drive and the wait! He pulled up images of my chest CT from last February and from the recent scan. The chest CT is always taken at the same time as the PET scan. The difference between the two types of images is that the PET is colored based on the radioactivity that my cells take up, but the chest CT is more like a standard x-ray. So although the PET scan showed completely normal cellular activity, Dr. Pulmonary Oncologist scrutinized the CT images for abnormalities, which he found and showed to me. He put my pre-chemo chest CT on the left, then my January 2015 chest CT on the right. He had used the glowing data from the PET scan to find the suspected cancer nodules on the old chest CT. Then he found the matching image on the recent chest CT. What he pointed out to me is that when you look at the two CTs side by side, you can still see a trace of each nodule. He said that they are less than 90% of what they were and that the extent of their diminution is better than expected. He said that without a biopsy it is still impossible to concluded whether or not they were or are cancer--they could be cancer that has responded to treatment, or they could be my body healing a lung infection or scar tissue from an infection. No matter what, the news remains excellent. He said he doesn't need to see me again unless the pendulum swings back in the other direction; that is, unless the nodules show activity on the PET scan or start to grow again.
I also gave him my email address, because his son is an undergraduate interested in veterinary medicine and gut bacterial communities. I study gut bacterial communities, I have a veterinary pathologist postdoctoral fellow starting in my lab in March, and I have a job opening for a summer student. Small world.
It was another great trip with a whole pile of good news. I hope I can stay on this trajectory for a long while.
The purpose of this trip was to deliver disks of my recent PET scan and to get their opinions on my continued treatment plan. We first saw Dr. Medical Oncologist. She was thrilled with the clean PET scan result and agreed that it couldn't have been better. She thinks that I should continue to have PET scans every 3-4 months for now, and that I should see her again in 6 months. She also maintains that I should continue the Herceptin+Pertuzumab treatments indefinitely. I asked her about side effects on my heart, or what we should do if my body decides to reject this treatment, and she said that it would have to be pretty bad to get her to quit the treatment. Her2+ cancers (that's mine!) are nasty, so it's better to suffer a bit of heart damage than to risk the potential consequences of ceasing the treatment.
That led me to a question about prognosis. A few people at work have asked me about it, and I haven't known what to tell them. My prognosis is technically "poor" because the best evidence suggests that I had (have?) stage 4 cancer. That's cancer that has spread past its original source into an incurable location. My question for her, then, is whether I should tell people that my prognosis is poor even though I am clearly doing so well and have unproven metastatic lung cancer that has nearly gone away? (I'll discuss the "nearly" part next.) She then looked me in the eye and asked if I wanted her answer based on the previous data, or if I would settle for the word "optimistic". The reason for this cryptic response is because I am on a therapy that has only existed for a year, and I have been on this therapy for its entire existence. There are no previous data points on which to draw that would answer my prognosis question. The previous data points didn't have the awesome treatment that I'm on. Therefore, her expectation and her hope is that I will do better than what the available data would suggest for me. I am the new data point. I therefore opted to decline the technical answer to my prognosis question and accepted the word optimistic. It suits me better, anyway.
Then dad and I took an intermission to inhale our lunch at our favorite falafel joint in the universe. Oh man was it good, but we ate way too fast.
We scurried back to the clinic to meet with Dr. Pulmonary Oncologist. This ended up being every minute worth the drive and the wait! He pulled up images of my chest CT from last February and from the recent scan. The chest CT is always taken at the same time as the PET scan. The difference between the two types of images is that the PET is colored based on the radioactivity that my cells take up, but the chest CT is more like a standard x-ray. So although the PET scan showed completely normal cellular activity, Dr. Pulmonary Oncologist scrutinized the CT images for abnormalities, which he found and showed to me. He put my pre-chemo chest CT on the left, then my January 2015 chest CT on the right. He had used the glowing data from the PET scan to find the suspected cancer nodules on the old chest CT. Then he found the matching image on the recent chest CT. What he pointed out to me is that when you look at the two CTs side by side, you can still see a trace of each nodule. He said that they are less than 90% of what they were and that the extent of their diminution is better than expected. He said that without a biopsy it is still impossible to concluded whether or not they were or are cancer--they could be cancer that has responded to treatment, or they could be my body healing a lung infection or scar tissue from an infection. No matter what, the news remains excellent. He said he doesn't need to see me again unless the pendulum swings back in the other direction; that is, unless the nodules show activity on the PET scan or start to grow again.
I also gave him my email address, because his son is an undergraduate interested in veterinary medicine and gut bacterial communities. I study gut bacterial communities, I have a veterinary pathologist postdoctoral fellow starting in my lab in March, and I have a job opening for a summer student. Small world.
It was another great trip with a whole pile of good news. I hope I can stay on this trajectory for a long while.
Friday, March 7, 2014
The Zone
It's done. The first batch of hard chemotherapy drugs have now entered my system. Operation kick cancer's a$$ (as you all have so aptly named it) has officially begun. I am relieved to know that cancer's hall pass was officially revoked today.
And now I am in what I previously called The Zone. The dexamethaSONE. I had forgotten all about this particular side effect. Dexamethasone is a steroid that they administer intravenously before giving me the hard chemo drugs. It helps to keep the nausea at bay. Today it has had a bonus effect of clearing my congestion. It also makes my heart race and my cheeks flush. This blog post would not be happening without The Zone, because I was dozing in my chair a few hours ago, but now I'm getting more and more amped by the minute. Dance party, anyone?
This brings up something that I've been mulling over. Should I re-read my old blog posts or shouldn't I? I know that there are some gems in there, but perhaps some things are best left to be rediscovered. Like childbirth. The mind copes by forgetting the worst of the pain (labor) and remembering the best of the process (baby). Perhaps chemotherapy is similar. I've forgotten the worst of the pain (secondary infections? fatigue? hot flashes? etc. etc. etc.) and only remember the best parts (that I'm alive and won't have to shave my legs for five months).
Today I learned the chemotherapy plan and can at long last tell you about it. I have 18 weeks of hard chemotherapies ahead of me. We'll repeat what we did today again three weeks from today, and so on until we've done it 6 times (huzzah for being done with one!). Here's what we did today:
1) Pertuzumab. It is a brand new drug (clinical trial results published in 2013) against the Her2 and Her3 receptors. I am the first person in my clinic to use this drug. They ordered it special, just for me. It took 1.5 hours to administer. It has essentially no side effects. Interestingly, it is unclear if my insurance will cover this drug since it has not been approved in the metastatic setting (stupid innumerable pulmonary nodules!). However, one of the drug companies who makes it is offering pertuzumab for FREE to patients who qualify (based on income). The clinic filed my paperwork last night, and at 8 am this morning called to tell me that I qualify! Huzzah for all of these people who worked their tails off so that I could receive this drug today and not have to worry about potential insurance issues. It brings me to tears. I am grateful.
2) Emend and Dexamethasone. I already told you about dexamethasone. Emend is another potent anti-nausea drug. Together these drugs took one hour to drip into my system. These drugs are administered after the pertuzumab because they need to be given before the hard drugs (numbers 4 and 5), but the pertuzumab and the herceptin (number 3) need to be administered an hour apart. I've got a complicated program.
3) Herceptin. Herceptin is another Her2 inhibitor. It has essentially no side effects except possibly on my heart. With both herceptin and pertuzumab we have to keep an eye on my heart because these drugs can weaken it. I'll just have to override that and stay strong.
4) Taxotere. Sigh. This is a general mitotic inhibitor, meaning that it inhibits rapidly dividing cells like cancer cells. It is not specific to cancer cells, however, so other cells that rapidly divide are also inhibited. This includes hair follicles, nail beds, and bone marrow. This drug took an hour to administer.
5) Carboplatin. Double sigh. This is another general mitotic inhibitor. I was just told today that sometimes the body remembers carboplatin and doesn't like it, so I'm supposed to be on the look-out for unusual side effects, like perhaps extra tingling in my extremities or something. It's going to be hard to notice extra side effects on top of the side effects, but I'll try. This drug only took 30 minutes to administer.
That's the scary part of my program, to be repeated at three week intervals for a total of 6 times.
The second aspect of my program will be Friday dosings of numbers 1 and 3 above. This will happen every Friday throughout the scary program.
Additionally, somewhere in the middle of chemotherapy I will have to do another round of tests and scans to check on the "lung metastases". If they are gone, we will proceed with chemotherapy as planned. If they are still there, it's possible that we'll have to come up with a new strategy. Chemotherapy, surgery, and radiation are all dependent on what those lung spots do. But they're going to be gone, right everyone? They're probably gone already. ;)
I have one thing for which I need your help. On Monday I have to give another blood sample for a different test (but they can now use my PICC line, huzzah!). It will be a test to see if there are cancer cells in my blood. We really do not want there to be cancer cells in my blood. Could you please help me with this idea? I've been using my mind powers to keep the cancer cells quarantined, but it seems that I could use a bit of help in this arena. Thank you for your energy.
Thank you for the support we had today, both physically and mentally. When we got to my appointment and were told it would be 6 hours, we realized that it will be impossible for us to do this day without some help. Thank you so much, dad and aunt J, for spending your day with us. Thank you, MIL, for spending your evening with us.
It is coming. With every passing moment I feel myself getting farther and farther away.
And now I am in what I previously called The Zone. The dexamethaSONE. I had forgotten all about this particular side effect. Dexamethasone is a steroid that they administer intravenously before giving me the hard chemo drugs. It helps to keep the nausea at bay. Today it has had a bonus effect of clearing my congestion. It also makes my heart race and my cheeks flush. This blog post would not be happening without The Zone, because I was dozing in my chair a few hours ago, but now I'm getting more and more amped by the minute. Dance party, anyone?
This brings up something that I've been mulling over. Should I re-read my old blog posts or shouldn't I? I know that there are some gems in there, but perhaps some things are best left to be rediscovered. Like childbirth. The mind copes by forgetting the worst of the pain (labor) and remembering the best of the process (baby). Perhaps chemotherapy is similar. I've forgotten the worst of the pain (secondary infections? fatigue? hot flashes? etc. etc. etc.) and only remember the best parts (that I'm alive and won't have to shave my legs for five months).
Today I learned the chemotherapy plan and can at long last tell you about it. I have 18 weeks of hard chemotherapies ahead of me. We'll repeat what we did today again three weeks from today, and so on until we've done it 6 times (huzzah for being done with one!). Here's what we did today:
1) Pertuzumab. It is a brand new drug (clinical trial results published in 2013) against the Her2 and Her3 receptors. I am the first person in my clinic to use this drug. They ordered it special, just for me. It took 1.5 hours to administer. It has essentially no side effects. Interestingly, it is unclear if my insurance will cover this drug since it has not been approved in the metastatic setting (stupid innumerable pulmonary nodules!). However, one of the drug companies who makes it is offering pertuzumab for FREE to patients who qualify (based on income). The clinic filed my paperwork last night, and at 8 am this morning called to tell me that I qualify! Huzzah for all of these people who worked their tails off so that I could receive this drug today and not have to worry about potential insurance issues. It brings me to tears. I am grateful.
2) Emend and Dexamethasone. I already told you about dexamethasone. Emend is another potent anti-nausea drug. Together these drugs took one hour to drip into my system. These drugs are administered after the pertuzumab because they need to be given before the hard drugs (numbers 4 and 5), but the pertuzumab and the herceptin (number 3) need to be administered an hour apart. I've got a complicated program.
3) Herceptin. Herceptin is another Her2 inhibitor. It has essentially no side effects except possibly on my heart. With both herceptin and pertuzumab we have to keep an eye on my heart because these drugs can weaken it. I'll just have to override that and stay strong.
4) Taxotere. Sigh. This is a general mitotic inhibitor, meaning that it inhibits rapidly dividing cells like cancer cells. It is not specific to cancer cells, however, so other cells that rapidly divide are also inhibited. This includes hair follicles, nail beds, and bone marrow. This drug took an hour to administer.
5) Carboplatin. Double sigh. This is another general mitotic inhibitor. I was just told today that sometimes the body remembers carboplatin and doesn't like it, so I'm supposed to be on the look-out for unusual side effects, like perhaps extra tingling in my extremities or something. It's going to be hard to notice extra side effects on top of the side effects, but I'll try. This drug only took 30 minutes to administer.
That's the scary part of my program, to be repeated at three week intervals for a total of 6 times.
The second aspect of my program will be Friday dosings of numbers 1 and 3 above. This will happen every Friday throughout the scary program.
Additionally, somewhere in the middle of chemotherapy I will have to do another round of tests and scans to check on the "lung metastases". If they are gone, we will proceed with chemotherapy as planned. If they are still there, it's possible that we'll have to come up with a new strategy. Chemotherapy, surgery, and radiation are all dependent on what those lung spots do. But they're going to be gone, right everyone? They're probably gone already. ;)
I have one thing for which I need your help. On Monday I have to give another blood sample for a different test (but they can now use my PICC line, huzzah!). It will be a test to see if there are cancer cells in my blood. We really do not want there to be cancer cells in my blood. Could you please help me with this idea? I've been using my mind powers to keep the cancer cells quarantined, but it seems that I could use a bit of help in this arena. Thank you for your energy.
Thank you for the support we had today, both physically and mentally. When we got to my appointment and were told it would be 6 hours, we realized that it will be impossible for us to do this day without some help. Thank you so much, dad and aunt J, for spending your day with us. Thank you, MIL, for spending your evening with us.
It is coming. With every passing moment I feel myself getting farther and farther away.
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