I plan to return to Marfa and points beyond as well, but first a quick update:
Tuesday, the day before infusion, I started taking dexamethasone, a steroid designed to stave off an allergic reaction to the chemotherapy agents, and with some additional anti-nausea effects as well. When I went to bed that night, my lungs sounded better than they had in months, and I coughed up very little fluid. It would follow that a good part of bronchorrhea is related to inflammation; it’s a shame steroids come with so many negative side effects. To wit–that night, I had a splitting headache and didn’t sleep a wink. I’m just glad we had agreed that David would drive me into Boston the next morning.
That was yesterday, Wednesday. Having taken the advice of members of my support group, prior to chemo I requested thermal packs to warm up my veins and I drank lots of water as well. After being dosed with zofran and more dexamethasone, infusion began. Alimta was only 10 minutes, and then another 50 for the carboplatin. Of course, that 60 minutes can stretch into many hours, what with waiting for lab results and the pharmacy to mix my personal cocktail.
I should add that I dressed for the occasion. First, the ironic but somehow very appropriate t-shirt shown above. My diamond earrings, to go with the platinum that would be coursing through my veins (my idea of a funny). And a lucky charm; some years back Jemesii cast an actual piece of Lucky Charms cereal in silver, and it has become a cheeky and cherished amulet.
We left the hospital around 3 pm and I was feeling a little bit loopy but still pretty chipper. I took a couple of ambien prior to bed and logged at least six hours of good sleep. This morning I had two more steroids as well as some zofran and sent out an email to my family and a few friends to say that aside from a somewhat leaden (make that platinum) feeling in my limbs, I seemed to be tolerating the treatment. However, I believe I crossed my t’s and dotted my i’s a bit too soon.
An hour after lunch, I got hit with my first wave of nausea. I popped a compazine to little effect. After an hour I took two more zofran. Fortunately I never vomited, but was caught off guard—I’d not expected to be so nauseated on my first course (the side effects of chemo tend to be cumulative). The headache returned and I gravitated between chills and sweats; fortunately no correlating fever. My tongue felt swollen and I became cognizant of peripheral neuropathy (tingling and numbness–in addition to the relatively mild neuropathy which has been a lingering side effect of cisplatin/taxotere) in both my hands and feet. This ride was becoming bumpy.
However, I am happy to report that I feel somewhat better tonight. Also, I am greatly cheered by the phone call I received from Dr. Shaw: the gene sequencing is a go.
Onward. Let’s just hope that the cancer’s butt is being kicked too.
Not happy to hear of the side effects. But here’s to cancer’s butt being kicked much worse! Great tee shirt action. And you sound pretty good.
Hey, first responder! Just happy I can cross t’s and dot i’s (oh lord, I almost dotted t’s and crossed eyes!). Got my b-day gift today–thanks so much to you and W. Perfect timing–I think there will be some quiet time on the couch in my future.
lots of love,
I would really like you to share your secret of how you always look so good despite the lousy things you keep enduring. I think you are such a strong person that I have no doubt this new regimen won’t be able to keep you down more than a few minutes at a time. I hope that the rest of this stuff goes easier on you than this one. I think you are doing an awesome job of kicking its butt.
Thanks Sharon. I’m not quite the hardy specimen I once was, but I know this could be so much worse. Positive thoughts it is all to good purpose!
I read all your posts with continued admiration at you and your family’s joie de vivre. I wish everyone would live with your purpose and live. Wishing you the best always,
Ps I really want to visit Marfa!
I meant love. Darn auto correct.
Chris, Thank you. They’re pretty interchangeable, live and love, In fact, when signing something love, I often accidently write live. Kind of works. And you should go to Marfa–it is way magical!
Such spirit under such stressful conditions, you are an inspiration. BTW, do you read Anne Lamott? Her new book reminds me of you.
Hedy, I love Annie Lamott and used to fantasize about becoming her friend (we both lived in the bay area of CA). I’ve not checked out any of her recent books though, it may be time to revisit.
Think of you all the time, and admire your continued strength! Ask doc about Emend for nausea…it worked great for me. Love you!
Steph, if it doesn’t abate, I will ask for an upgrade to emend–it got me through most of cisplatin and taxotere!
I’m eagerly reading your updates, hoping it isn’t too rough to bear, and I’m hoping you’ll be able to recover in the months after it’s done.
Craig, ditto on number two in particular. The hope with chemo is that the good is greater than the harm…
My husband has been battling alk positive lung stage iv since march 2012, on Xalkori which worked but only for about 6 months…..more brain mets and finished wbr in October. He is currently on carbo/alimta…..waiting on ldk trial coming to.charlotte…….what are the next steps you are hearing for alk inhibitors, what about response to alimta? My husband struggles with depression so feeling bad is kicking his butt…… He is 44 and we have 2 boys, one 5 and one 15 months.
I’ve been reading your blog.for a.while and I think your outlook is fantastic…..really.must help all around you who are trying to help you soldier on!
Marybeth, I have heard that it is not so much ALK+ individuals as young non smokers that have a strong response to Alimta–but keep in mind that is anecdotal and there are always exceptions either way. Let’s hope your husband and I are super responders!
I sympathize with the depression. I’m afraid I’ve had my share of struggles with that beast as well and when you are not feeling well, it is much harder to maintain a positive attitude. I was 45 when I was diagnosed–and I am 53 now, so stay very hopeful.
And as far as what it next, there may be a couple more ALK inhibitors coming to trial but perhaps more exciting is the possibility of dual agents (two inhibitors at once). As they discover more and more about what is behind resistance, the combo approach may make a real difference.
FWIW, what Linnea described regarding your Alimta (pemetrexed) question is my understanding too, but based on this Dr. Shaw research:
My main takeaways from that, if I understood it correctly, were that (1) better Alimta effectiveness might correlate better with never- and light-smokers (which ALKies usually are, i.e., an indirect connection), and (2) in that study’s participating patients it seems best to use Alimta in combo with a platinum-based chemo (which could include continuing the Alimta as maintenance subsequently).
Craig–thanks for the corroboration with a link (I was too lazy tonight to back up my statement). 🙂
Mary Beth, my husband has the same diagnosis as yours and has experienced mild bouts with depression too. My niece, a researcher at Marian Anderson in Houston, helped him have an enlightened attitude when she told us that NSCLC is treated as a long-term illness, not like a terminal disease. That gives us hope for several more years. Positive thoughts and good wishes to you and your family.
You are a CHAMP! Great news about the gene sequencing.
Thanks Kathleen. Today I feel more like the breakfast of champions, but I believe tomorrow will be somewhat better. And yes, cool about the sequencing!
i’m sorry I’m late with my reply. Thinking of you all the time.
My experience was that actually day 3-4 after treatment was when the heavy blow hit – I sincerely hope you were spared that. Day 8 I suddenly felt normal. Rest and let them all spoil you. (Your family-picture is like a magical american independent-movie.)
Sending you my strongest hugs, hope to see you screen-wise soon!
ps. I took Emend together with Alloxy, which made the side-effects a bit more tolerable.
Ou en êtes vous actuellement ?
J’ai moi aussi un cancer du poumon ALK stade IV, diagnostique le 10.08.2012. j’ai 45 ans.
J’ai fait 2 cycles carboplatine +Alimta
talcage pleual (3 litre de liquide carcinomateux dans la plèvre)
2 cycles carboplatine + Alimta + Avastin
4 cycles Alimta + Avastin
La ça va j’ai quelques douleurs dans le thorax et de grandes fatigues.