From the inside looking out Saturday morning
The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in all its glory is sometimes best appreciated from a snug environ.
I had my third infusion of pemetrexed/carboplatin on Thursday. As the last round turned out to be so manageable, we decided to ramp up the platinum a bit, and for the first 48 hours, I felt pretty good. However, yesterday I skipped my afternoon zofran and began ramping down on the dexamethasone as well. By early evening I was seriously nauseous, and experiencing some pretty intense heartburn and a headache. I took a compazine, and when that had no effect, added zofran and dexamethasone. Soon I was feeling better again–I can’t begin to imagine how difficult chemotherapy must have been before the advent of steroids and antiemitics. Thanks to an ambien, I was able to sleep, and hopefully today I can again back off on medication.
So—lots to share. I think I’ll start with the visit to the Avon Breast Center at MGH. After the concerning mammogram on Tuesday, a sterotactic biopsy was scheduled locally. However, I immediately contacted Dr. Shaw and asked about having a consult at MGH instead; if the situation required treatment, it only made sense to coordinate my care right from the start.
Well, the magical Dr. Shaw got me an appointment on Friday afternoon. Because of the impending storm, it needed to be cancelled, but they were able to squeeze me in Friday morning instead. Once there, I met with the surgeon, who performed an exam and immediately found a lump (that had been missed previously) in my left breast as well. And then I had some more mammograms done, this time using a 3D imaging machine. After a short wait, more close-ups on my right breast, and then an ultrasound of my left breast.
The conclusion: likely benign fibrocystic changes in the left breast and a 99.5% chance that the microcalcifications in the right breast represent non cancerous changes. So I won’t need to undergo a biopsy and instead will have a repeat mammogram at the Avon Breast Center in six months. The moral of this story would seem to be, whenever possible, (and particularly when your medical history is complicated), get yourself to a center with the best diagnostic apparatus available as well as the expertise to interpret those results.
So that was great, great news. A good thing too, as my scan prior to chemo on Wednesday was not quite as encouraging: “Mixed treatment response with interval decreased groundglass opacity in the left lower lobe, though slightly increased let lower lobe consolidation and slightly increased mixed solid ground/glass opacities in the right upper lobe.”
In addition, the results of the initial genetic sequencing of the ALK mutation are in (it remains to be seen if full genetic sequencing can be performed, as my biopsy sample was quite small and will require a cell line to be grown in the lab—something that may or may not be possible). The secondary mutation that showed up post crizotinib (S1206Y) is nowhere to be seen. In its place is G1202A, also a missense mutation on the solvent front, but unfortunately one which confers a good deal of resistance to all ALK inhibitors. This will potentially limit treatment options, and the mixed treatment response may necessitate a change of course sooner rather than later.
I am focusing on the fact that except for the few days post chemo, I am stronger than I have been in months. In fact, although I still have a small amount of wheezing and an occasional cough, the copious amount of nighttime sputum has disappeared. Hopefully the resolution of this troubling side effect correlates with the positive response. However, given the mixed response, I do wonder if there is a chance that the resolving groundglass opacity might have been an inflammatory response to the LDK378 (pneumonitis has been observed as a rare side effect in patients treated with crizotinib).
At any rate, there is no way to know and the important thing now is that I am feeling better. One more round of pemetrexed and carboplatin and then, unless a subsequent scans reveals significant progression, I will go on pemetrexed (Alimta) maintenance. One round, one week, one day at a time.
life and breath: outliving lung cancer 
Okay — I can exhale now that the results are in regarding the mammograms and further tests, and how great you didn’t have to be subjected to a biopsy! Yay, Alice (Dr. Shaw)! Also very welcome is the news that you’re feeling so good. And that you didn’t get nailed by the storm, So… Resources gathered for the next bout? With love xoxo
Gathering resources…..(and you know I have a knack for gathering in general—it’s the dispersing that is sometimes problematic!)
xoLinnea
Omg. Great news. Enjoy the delicious snow. Sean xo
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On Feb 10, 2013, at 2:41 PM, “life and breath: outliving lung cancer” wrote:
WordPress.com linnea11 posted: ” From the inside looking out Saturday morning The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in”
Sean, delicious snow may be may favorite way to characterize the white stuff. Cheers!
Linnea
so relieved that the results to mammogram were good ones. I have been keeping everything crossed & worrying like a mama… I hope that your chemo symptoms settle down and you are back to feeling good. love you
Next time we’re together you have to show me how you cross everything 🙂
love, Linnea
So happy to hear your good news on the mammogram. Praying you will feeling a lot better after the chemo treatment. Enjoy your week before the next one.
Joan, thank you and I hope you are well (getting ready for your trip?)
Linnea
So relieved – have been praying for you. Will also pray as you weather the nausea. You totally rock.
Aw, thanks Marie.
Linnea
So glad to read your good news Linnea. I was thinking about you all day Friday as the snow fell and wondered if your appointments would have to be changed. Feel better soon. Beryl
Beryl, I hope you are enjoying winter up north.
Linnea
Be careful with the decadrone (dexamethasone). It can greatly increase the quality of life but it also has side effects. I was on it a long time and you have to come off of it very slowly.
Sounds to me you that your reports where pretty good. Remember that the word “slightly” can mean many things and depends a lot on who is reading the scan.
Larry, I basically view steroids as the devil, and take them only as absolutely necessary. Obviously they would seem to be necessary though. And you are right, slightly leaves a lot of latitude and I should be leaning toward a positive interpretation.
Linnea
I came across your blog through my google alerts. Soooo happy to read about your good results. My father has stage IV lung cancer. He has gone through 6 rounds of carbo/alimta/avastin along with xgeva shots.
He had his 8th round of maintenance chemo of alimta/avastin last week.
I wish you success with your current treatment and trust you will be on maintenance alimta soon 🙂 So far so good for my dad!
Regards,
Shane
Shane (I think I know you from Inspire?). I’m so glad that your Dad has done will on this regimen and I hope he continues to do so!
Linnea
You are so well informed on your specific type of cancer. I’m a tad jealous. Although, I’m not sure I could keep all the details straight.
I picked up the book Life of Pi based on your movie recommendation. I’m looking forward to enjoying both!
Trying too, to take life one day at a time. 🙂
Kimmy, I am anything but precocious; I have just had a lot of rote and repetition (mucho practice now at this cancer thing 🙂 I am reading Life of Pi as well—do NOT miss the movie. And I think you are navigating this journey with A. incredible grace and B. a real commitment to the ol one day at a time thing. Keep on keeping on Kimmy.
Linnea
Fabulous news. So happy.
Thanks!
Linnea
Hi Linnea…I was so glad to read that your mammogram was all-cleared…phew! it’s great that you have MGH as your hospital!! we are so lucky.
I’m sorry to read about your other challenges but I know you will stay strong and persevere – you are so courageous! you are my role model!
My cat scan/MRI results were very good today, so I am celebrating..
and also sending you hugs..
Laurie, we are fortunate. And hey, congrats on positive results—enjoy that celebration.
xoLinnea
Fantastic. I know in the past you have had these fabulous scans come back, and this may seem like quite a let down, but my father has never had what you would consider a “great” scan. He was on alimta maintenence for almost a year of slight this and that before a scan with clear progression dictated he stop. We always aim for as close to stable as possible and the lessening of symptoms would certainly indicate far more about treatment then the actual scan for him. Moving forward we always liked to have a plan in place. Have you considered any of the PD-1 trials? Also, I would second the comments on the dexamethesone. My father sure struggled with the ups and downs of it.
Fiji, I suppose I’ve had more this and that than fabulous scans as well, but of course it’s the ones with good news that stand out. However, you are absolutely correct; it is all relative. And relatively speaking, my last scan was a pretty good scan. Better still (and ultimately more important) I am feeling better.
I wish the best for your father and yes, we have talked (in a rather abstract fashion) about immunotherapy (that’s what PD-1 is, correct?). Many maybes going forward but that beats the heck out of no options whatsoever. And yes, steroids are a very mixed blessing.
Linnea
You are my inspiration! I’m so glad to hear you are doing well.
Thanks Elizabeth!
Linnea
Dearest Linnea,
so glad to hear the good news!!
Sorry for my absence on your blog for awhile – but happy strong hugs are coming your way now!
Love, Anja
Anja, you are never ever absent from my heart or thoughts! Love you!
Linnea
Linnea, good news is always welcome on the cancer journey. Happy to hear the breast scare was just another bump in the road. Wishing you well. Hedy
Thank you Hedy—we take our news as it comes and less bumpy is more than welcome (the radiologist’s exact words: ‘this is a boring mammogram’. Woohoo! Who wants to be interesting?).
Linnea
Happy Valentine’s Day Linnea. May all your scans be boring from now on!
❤ ❤ ❤
Joan
Joan, ❤ u!
Linnea