10 posts tagged “alimta”
I spent the past few days cleaning house, and the last few hours paying bills and otherwise tying up loose ends in preparation for entering treatment this week, possibly today.
We're "going naked", as the oncologist likes to say. No Tarceva, Alimta, or Aredia. EEK! "Take the leap of Faith!", is what he wrote on my after-visit summary. The clinical trial nurse says, "You do need to celebrate this."
Early morning rambling warning!
The hubby's begun to travel again, thus the crack-of-dawn airport jaunts. I actually tried to go back to sleep after dropping him off. It was a lovely idea. Alas, the brain was already grinding away, despite the lack of coffee. Now I'm listening to KCRW (techno-I don't know why but it sounds good), listening to the construction drone from the next street, drinking coffee on the back deck. There's a crazy breeze, the sky's blue, another warm day. The garden is on steroids, lots of corn and an heirloom yellow pear tomato plant that's taller than me. I can't wait for the eggplants to mature! I've been using the herbs, but they should've gone into a long pot on their own.
June 15th marked the one year anniversary of my diagnosis, although I always acknowledge it in January. January 2006 was when I first noticed the dry cough, so in my mind, cancer was already there, and for who knows how long.
Rosalie, my clinical trial nurse, called yesterday to say I'm "doing considerably better", based on my CT scan on June 27. I didn't ask her to elaborate---I'll get the report in a few days, when I see a different oncologist (mine is in Italy), hopefully get the okay to fly long distances, and receive chemo. So I don't know if "better" is compared to my low point in May, or my high point in February. Are there fewer tumors, or are they markedly smaller? I'll do labs on Monday, so we'll see where the marker's at.
Still, I informed her that this past cycle wore me down quite a bit, taking two weeks of energy. I wondered if it was going to continue like this, with the rash now extending down to my ankles. She acknowledged that this chemo drug is much stronger than my first-line treatment, lamented my allergy to Taxanes, and thought perhaps my Erlotinib (Tarceva) dosage needed reduction. She would hate to do that, as my response to the current regimen/dose has been so good. I hoped the scan would be remarkable, as I feel almost as good now as I did while undergoing the first round of chemo, which is to say, during my good week, I feel pretty normal---I can almost forget I'm ill (except that I want to jump out of my skin). Once you've had chemo though, you'll never be "good as new" ever again. You've been polluted.
Anyway, the conversation somehow turned to the story of my journey to diagnosis. Rosalie seemed astonished by it, and said with some amazement that I was doing incredibly well---she didn't add "for having survived a year and a half so far". The discussion always turns to the future, to what we'll do once this stops working. At a certain point, the discussion has to stop, because in my mind at least, there might be something else out by then that might give me more than four or five months. If the tumor in my lung can go away, or if all the tumors can really shrink, then maybe someday, when I really need it, they can be radiated, maybe using GammaKnife or Novalis (new, targeted radiation beams). As witnessed in Leroy Sievers' NPR blog, cancer can return to the same area inspite of radiation. How much radiation you get the first time determines whether you can receive it again (at least as concerns areas like the spine, and bones in general).
My Mom holds out the thought, You might be the Miracle Girl. She knows the course I'm on is not a cure, but You Never Know. And even though I'm feeling a twinge in my lower back, it's nothing like the intense back pain I've withstood for so long (years).
At the end of July, I'll have been in treatment for a year. I've always led a frenetic life. I've worked since I was 14,
It's an understatement to say Life Will Never Be The Same Again. Cancer changes one's point of reference so much, I find myself wishing I could just have a "normal life". It makes the simplest things special---the bougainvillea hanging out of trees onto the street, a stroll on a fine day, perfectly barbecued ribs, finding your cat is in good health and is negative for disease. I still dream the big dreams. I dream of riding the London Eye, seeing the chateaus of the Loire Valley, riding camels past the Great Pyramids, greeting the sunrise at Angkor Wat, taking my parents on a cruise....I dream of time, I dream of lost innocence, I dream of not waking up in the night screaming and sweating from fear. I dream of a few more years laughing with my husband, nursing his sunburns, dragging him reluctantly across foreign lands. I dream of good times with family and friends, and time to thank them all properly. I dream of and pray for guidance and transformation. Tonight I will dream of having tomorrow.
Thanks for your patience, folks. I know it's been awhile. Bit of a rough patch there. My face may not recover from the effects of cancer medication. I'm afraid it takes a bit of getting used to, this new look. There's always makeup, but coverage of the magnitude required looks quite unnatural. Anyone with tips on this, please come forward. I may need to invest in a good putty knife and an economy-sized jar of concealer. Oh well, it's the price for more time and breathing. Did I mention the rash is moving down my body? Most uncomfortable. I've yet to find the magic cocktail of moisturizers that will help my poor, thirsty skin while not causing a break out.
The chemo agent (Alimta) has its own side effects---an altogether different type of rash, exacerbating the already exaggerated dryness of my skin, and a strange fatigue combined with gastric disturbance and oral sensitivity. I can truly say this is much worse than my first-line treatment with platinum.
My hair seems to be hanging on, if feebly. Knock on wood. I'm told it will stop growing, however.
Vanity is a weird thing. I never thought I was all that vain---I didn't care when my big hair fell out, and although it's strange that my hair is now so straight and thin, I don't fret. My husband misses the hair, I think. But when it comes to one's face....it's personal. I don't recognize the face in the mirror. Even with makeup, which I never wore that much of (except in the 80's'). I am self-conscious around my husband---I imagine he sees every red spot on my face (and it's a sea of spots). I've started to think of working out, since I can now breathe. Maybe if I get a hot body (wot?), he won't notice my face? Maybe I should just work on my sense of humor and sod the rest of it. And bake lots of cookies.
I should just enjoy the time I have left and quit worrying about how I look! Right, that's the ticket.
When your mom offers to come up to take care of you, and you accept, you know it's bad. This is definitely kicking my ass. Much worse than the side effects I had from initial chemo (which was fatigue, mostly).
Maybe I'm just a wuss. Today there's hope that things have peaked and are now receding. The rash is still developing along my jaw and onto my neck, but it seems to be coming to a head on my head and by Friday I might be able to rest on a pillow. Hopeful, as long as I don't get an infection, which is possible since it's Day 7 since receiving Alimta, and my blood counts are probably headed downhill.
Think of all the things you take for granted, like eating, blowing your nose, making facial expressions. Now imagine that every time you even think of doing any of those things, your face erupts into...well, you get the picture. I have a whole new respect for my face, imperfect as it may be. That it functions is what's important, and to be cherished. I look forward to someday being able to blow my nose again. Heck, I look forward to being able to go to the grocery store and not scaring the checkers.
I wish I could be 5 again, holed up at my grandmother's house in the mountains with books and a gurgling stream outside. Those were some of the happiest days of my life, lived in almost complete silence. I can't recall any greater peace, contentment, and security than those brief childhood years with Mama. Thanks to her, books are welcome and trusted companions. Keeping me company during this rough patch:
It's always nice to have mom's cooking when you're ill----that's how I feel, anyway. I just can't replicate her cooking, no matter how simple the dish. I might just make the effort to buy a new barbecue while she's here, so we can have kabobs. Wow, I can't wait. This is a luxury. She'll get up and walk the beach in the mornings. When she returns she'll make me eat an egg. All I have to do is keep her from crying. Maybe when I feel better, she'll let me drag her to the Vivienne Westwood exhibit.
This definitely changes one's outlook on spending the last days with your parents.
And I can thank Tarceva for that. Finally.
So I was a bit whiny and dark in that last post. That may come around again later, but for now things started looking up when I got that little bottle with the green label, the one that Genentech will provide for 2 years, thanks to being reinstated in the clinical trial.
After about 5 days I had zits, but by golly, I could walk, talk, breathe...I had the energy to do those things because I wasn't coughing myself into oblivion. I could sleep through the night without pain. It was amazing. Of course, I need to give up caffeine now---I get so wired---and spicy foods are starting to hurt me again. But hey, I CAN BREATHE!
Now, I know my oncologist is trying to zap the disease as quickly as possible so I can live a little before the Tarceva stops working, so he's added Alimta anyway. I got the first cycle yesterday. Today I feel ok, but my chest feels congested and my back's starting to hurt again. I hope this isn't undoing all the good things Tarceva was doing for me.
Clinical trials to test the safety and efficacy of this drug combo just started recruiting in March 2007, in Austria, Hungary, and Spain. I couldn't find any openly available data on the use of Alimta-Tarceva combination---on the medical research sites maybe, but they're inaccessible without an account. This makes me apprehensive---the trials don't end until 2009. It's a bit late to be fretting, I guess, but it irritates the control freak in me that I don't have any solid evidence that these meds don't conflict, although they're both targeted agents.
I'm hopeful this means I'll be able to travel after all, this year. It has to be this year---one never knows about next year. For now I'm happy to be able to do rudimentary things without having to stop and mouth-breathe. The rash will eventually turn into a full-blown appearance of bad acne, but I think: I've had pretty decent skin all my life. I can handle zits in exchange for breathing, right?
As long as I don't scare my husband away, things will hopefully be ok.
The new banner reminds me of illustrations in my Alice in Wonderland book, circa 1964. I wish I'd held onto that book. I could use a magic mushroom or two at this stage.
Warning: This is not a happy post. You may just want to skip this one.
I've pulled my head together a bit, pushed past the tears though not the fears, at least enough to articulate what's going on. I've been withdrawn from the clinical trial, just like that, without warning, without a clear explanation of the reasons. The last appointment was strange and confusing, with Dr. Simmons being seemingly evasive. None of my questions were answered, except that he thought, "Tarceva might not work too well on a woman." Which is so uncharacteristic. He seemed distracted, reticent, unforthcoming. He didn't even tell me I wasn't receiving treatment that day. The chemo pharmacist had to come out, after I'd waited 45 minutes, to explain that his instructions were not to replenish my study drug (which by now you all know was placebo and not Tarceva), and after comments of not being called in for infusion, he apologetically announced that I wasn't receiving that (Avastin) either. He seemed baffled that I wasn't informed. Later that day I spoke to the research nurse covering for mine, who was on vacation, and she didn't much more information either.
The upshot of it is this: I had a CT scan on the 6th, and my disease has progressed, or shall we say, "relapsed". It's on the move, causing my pericardial effusion (fluid around my heart), which was very small the past few months, to grow in size. Further, I now have a small pleural effusion (fluid in my lungs). These two have contributed to the cough I'd been complaining about since February, but which they (doc/nurse) attributed to possible allergies. Add to this a new spot and either a lung collapse or growth of the large tumor...you get the picture. The "consolidated area measures 4.9cm".
The CT scan of 3/25 was ok, so there were no worries. However, the cough escalated, reaching its zenith in mid-April, when I felt just like I did prior to diagnosis. Shortness of breath, lack of energy, fatigue, inability to exert without elevating my pulse and heartrate, and coughing with incredible force. Oh yes, and the ever-present lack of sleep. Just remember, it takes billions or maybe trillions of cancer cells to even show up on a scan. But your body can definitely feel it.
To my surprise, the plan wasn't what we'd been discussing the entire time on the Trial, which was to unblind the Study and if I was on the placebo, to crossover to Tarceva. Nope, I was withdrawn from the study (can be done without one's consent at any time). The doc just said, "I think we'll start you on Alimta." What the hell. I asked what it was, was it a single agent, how many cycles, what's the deal...? Answer: it's a single agent that has shown benefit for lung cancer. When pushed about the trial, I got the funky Tarceva-woman answer and told I was to be scheduled for an echocardiogram to measure the fluid around my heart, a PET scan and restaging, and then we'd talk about things some more, when the clinical trial nurse returned (today). There's only a 4-day window for receiving missed treatments on the Trial. Obviously I'm not getting treatment today, so it's a lost cause.
Because I'm mental, I've tried to analyze possible reasons for this move, although there's no excuse for not being properly informed that I was withdrawn and what the reasons are. In case anyone's interested, the medication that was recommended is called Pemetrexed (brand name Alimta). It's a fairly new version of an old-style chemo drug, used primarily on mesothelioma (asbestos-related lung cancer) patients. It hasn't undergone widespread clinical trials, but it's been placed on the FDA fast track approval based on research result methods I can't adequately explain. "It'll buy you 4 to 6 months." Specifically, what I've read is, it alleviates the symptoms to give you a better quality of life, but it doesn't extend survival like other drugs which are currently the standard. The side effects are similar to the hardcore chemo drugs---lowered blood cell counts, nausea, mouth sores, etc. How that's supposed to improve my quality of life I don't know, but maybe it means I'll feel good for 2 months after it's over (assuming I live through the treatment).
I think we're all looking for extension of survival, although that's obviously moot if one can't breathe. There's little value in taking medication that ravages one's body without extending survival just a little. And the big question is, Will I be able to do anything else after this treatment? Treatment/study wise?
I understand the pressing issues that need to be fixed before moving on, but I'm uncomfortable not knowing of more options for the future. I don't want to cut myself off from other therapies if I live through the Alimta course. I want to know that I can take Tarceva later, or something like that.
I AM SO FRUSTRATED.
To effect escape, I read the entire first Harry Potter book in one sitting. Then I watched the movie (again). Then I wrote as long an e-mail to my oncologist and clinical trial nurse as the Kaiser site would allow. I imagine I won't be hearing from them. PET scan and Echocardiogram later this week. I've been taking Ativan and Tylenol to sleep. I'm considering taking some of the weird herbal concoctions people gave me when I was first diagnosed. I'm not in treatment...perhaps a cocktail is in order. I've given up sugar once again. And I'm reading this badly organized book:
When it rains, it pours. July vacation plans with friends are in limbo, along with many other things. Character-building used to be an enjoyable endeavor for me. Maybe I need to be more social this time around, as opposed to the past few months of solitude. I need to find the place where I found the hope, courage, and optimism that pulled me through last time. Of course, that might have been innocence and denial. It's much harder this time, with what I know, and the specter of the year already past informing my emotions. I thought I'd changed my life last time, but once things settle, it's so easy to return to the status quo. But that's another post, and I need to stop talking now.
I could cry, but with everything swirling around me, I'm not sure I can.
Maybe later, after I make dinner and pick up the house and try to figure out what to do about a health plan once my employer cans me and COBRA runs out. Mike's being headhunted and the bottom line always comes down to who can match my present health plan. I don't think small businesses can even come close to matching what I have, but at the moment...I feel like the end is near, so why am I even thinking about this? Why am I even worrying about work?
Why don't I just cry and get it out?
Well, there's nothing like one's husband walking through the door to start the water works. "Stop crying!" Did I mention he's an ex-Marine?
I'm more scared now than in the beginning. It's been over a year since I knew something was wrong. 16 months are up, how much longer can it be? What else can be done for me? What if Tarceva (erlotinib), Alimta (pemetrexed), Vinorelbine...(see more drugs here) actually don't work for me? Well, one of these may not extend my survival, but perhaps in my last few months I'll be able to fly somewhere far...Italy, the Great Barrier Reef, Japan---and say my last goodbyes to the romantic notion that there's still a beautiful world out there. And maybe, unlike the past couple of months, I won't squander the time cleaning my house and pounding away at this light box.
Interesting that tuberculosis should be called "consumption". This really is no different. Cancer is most certainly consumption...of the worst kind. In the beginning I was full of lovingkindness and attempts at truly accepting this life for what it is, that it's all there is. It requires tremendous discipline to maintain this thought, and I now see why becoming a monk actually eases the task of maintaining the Buddhist frame of mind. Living in the modern world makes it extremely difficult to maintain that sort of focus. But it goes a long way towards having peace in one's heart when fear is ravaging one's mind.
I guess I need to start meditating again. I didn't get very far with it---I wasn't diligent enough. I really need it now. I need to calm the raging seas inside my head. I'm coming up on 4 weeks without medication to keep my disease at bay. I've got to fight it somehow. Maybe there really is something to that mental thing. And since the juicer's collecting dust, I suppose I should attempt once again to be "good".
Sigh.
