Tag Archives: genetic testing

And now, I play catch up

We are back in Meredith, and it is cold, cold, cold. It has been a week crammed with all sorts of activity, and I will now do my best get up to date.

Our flight home was uneventful, although this time everyone was asked to submit to a full body scan. As I am a frequent flyer when it comes to CT scans, I opted for the pat-down in lieu of even a small amount of additional radiation. Surprisingly, they asked Peter (who is thirteen) to go through the scanner, but he requested a pat-down as well, even though it made him acutely uncomfortable. Sad times.

We’d left Marfa at 6 a.m. for the airport in El Paso, and it was well past nine when we pulled into our driveway on the east coast. I immediately went to bed, as I had yet another 6 a.m. departure for Boston on Tuesday for a CT scan (like I said, frequent flyer). It was hurry up and wait at the hospital though, and my scan was two hours late. Good thing I brought a book.

Wednesday I unpacked and started putting our house back together after the work that had been done (looks beautiful handyman Dave), and Thursday I left the house at 5 a.m. for my appointment with Dr. Shaw.

The first thing Alice (Dr. Shaw) discussed was my CT report. She was very pleased, as everything has remained remarkably stable, and the new nodule in my right lung had actually resolved. The report read as follows:

“Lung and Airways:  Status post left lower lobectomy. Interval resolution of 6-mm right upper lobe nodule. Left upper lobe mixed attenuation nodule, now measures 1.8 by 1.2 cm, previously 1.8 by 1.3 cm. Another mixed attenuation opacity in the left upper lobe, now measures 4.5 by 1.5 cm, previously 4.7 by 1.4 cm. Multiple other solid, groundglass, and mixed attenuation nodules are unchanged. Mild interlobular septal thickening. Again noted at the left lung base. Pleura: small left pleural effusion, not significantly changed.”

Stable and interval resolution; those are the adjectives I like to see on a report.

Next we discussed the biopsy. Obviously, it was positive again for cancer. There were no further rearrangements or mutations of the original EML4-ALK mutation. This means that at least some of the ALK inhibitors in the pipeline might not be appropriate for my next line of treatment. I was disappointed by this news, but Alice concentrated instead on the fact that for the time being, my recurrence is proceeding very slowly. I continue to feel good and perhaps due to the advair, my wheezing has lessened as well. So, the scenario she imagines for the future is this:  I will stay on crizotinib as long as possible, and in perhaps six months or so, the crizotinb would be combined with another targeted agent.

I left her office feeling pretty jolly, and after picking up my paper bag full of crizotinb, I met up with my dear friend Melinda for an afternoon of traipsing around Newbury St.

More catching up on Friday, and then everything ground to a halt for a while in the wee hours of Saturday morning. I awakened about three a.m. with a headache and an upset stomach. I groggily downed some antacids and relocated to the couch. An hour later I was up and grabbing for a bowl, for what was merely the onset of eighteen hours of laying flat on my back and/or vomiting.

For some time now, I have had nausea and occasional vomiting as a side effect of the crizotinb on about one day a month. At this last visit, I remarked upon the fact that it had been several months since that had happened. Well, I guess I spoke too soon. This was certainly the most severe episode I have had, and I have to wonder if the antacid had something to do with that. I had noted previously that calcium supplements in conjunction with crizotinib increased my nausea. The Tums that I took contain calcium carbonate, so I suspect that exacerbated the situation. I won’t do it again!

My goal this past weekend had been to plan a quick trip to Toronto to go visit Guillermo (see comments), who I  fondly refer to as the co-author of this blog. Three fourths of the way thru my puke fest, I felt well enough to check my email and opened one from Guillermo, who is undergoing radiation, in which he confessed that he didn’t feel well enough for visitors. What follows is a (slightly) edited recap of our exchange:

Dear Linnea –
This is not my usual email. I am not feeling so well these days.  Radiation is much harder on me this time.  I am tired all the time and just generally feel unwell.  I have no appetite and mealtimes are completely uninteresting.  I didn’t go for my sessions last week after I send you last email because I felt so bad,  the next day I had an appointment with the radiologist/oncologist who had blood work done plus urine test and sputum test to check for an infection in the pleura, she also requested a CT scan for next week.  I have to go on Monday for a make up radiation so that I have the full ten sessions.  I will be so glad once it’s finished.
To rest in the weekend we gave up 2 subscription theatre tickets.
I was really looking forward to meeting you.  However, because of how I am feeling I think it better with Xmas so close if we postpone it until the spring.  This is a big disappointment but my energy is non existent at the moment and I feel bad that you have to make such a long drive and I will not be the best company.  I hope that once I recover from the radiation and can start Alimta my strength and energy will return.
We plan and the gods have a good laugh.
( ) ( ) Guillermo

Guillermo, I more than understand. I am so disappointed that you are not feeling better. Thanks for being honest but also making room in your life for me and please let’s stay in touch. Even if you’re not up to co-authoring my blog 🙂 let me hear from you. I will keep your fans apprised.
Funny, I have hesitated on making my final plans. David said there were people caught in traffic for twelve hours the other day due to a snow storm on the way to Buffalo, and he was really encouraging me to fly. And then late yesterday I had an unusually bad reaction to my medication, and I ended up vomiting for twelve hours straight. Sucks to feel bad, and has a way of making you not care about anything else.
My scan last time was stable, and the bright spot in my right lung had disappeared. The first time in a long time I have seen the words stable and resolution on one report. Good thing, too, as I do not have a mutation of my mutation, and so there is no magic bullet in line for the next treatment (yet).

So, I guess we’ll have to let the gods have their laugh, but I am sending all the atheist good energy your way that I can muster. As I have said before, even though we’ve never met, I feel as if I’ve known you forever. Were it true, I’m sure we could have gotten ourselves into some fine and fun trouble. I love you, my friend, and please ask Beryl if you are not up to letting me know how you are, if she wouldn’t mind sending me an email occasionally. Please give my love to her as well. Linnea

Dear Linnea:
4.30 pm Just returned from 2 hospital appointments. Glad that torture radiations ended yesterday, for 3 days my throat is sore, my appetite is returning but have to eat baby food like yoghurt and peanut butter, I asked for BBK medium rear and got it over done. My prescribed gourmet drink is Muscosiks mouthwash. All the tests  blood, urine, sputum are negative, so this is positive… Tomorrow evening I  am going downtown with Beryl celebrating with an extra CT scan. Expect to feel much better for Xmas, takes 1 month before we know if the radiation helped like with pain and sweat reduction.
I gave advice in the rad section today. An old indian man with wife dressed in shari ask me “Do you know radiation?”, Yes I had it many times., “I have something in my head, they say it may be cancer. Does radiation hurt when they do it?” No, you feel nothing, people get a sun burn, but I didn’t and you have darker skin, may hurt latter, is the healing process. “Do you have cancer?” Yes, for 5 years here, pointing to my chest. “Breast cancer?”…
Also for 3 days we have the first wintery weather, Toronto is good just 1″ of snow but places in the sow belt around Buffalo or London have over 20″ and I am glad that you didn’t have to drive, many accidents, David was right but is nicer to have the car.

You may worry but I waited to finish rads and have test results before replying. I will continue co-authoring your blog even when we know that men are boring and not sensitive like women. Today was really nice first we meet my petite italian Dr. Dory, always star and ends with hugs and talks about my girls. Waiting for the radiologist doctor we came across my favourite radiologist technician Petula, she is around my daughters age,  and was hug and kisses again and explanation to Beryl that we she has portuguese blood and we talked a lot about our trips, she was in the basque country twice this year, loves San Sebastian were I had family and spend vacations good times. I wish my oldest daughter showed feelings like Petula.

Great news and relief with your scans, maybe my yelling to the gods worked.
Vomiting 12 hours straight is horrible, my dog just vomited 1 hour after enjoying 1 pound of belgian chocolates.
If I vomited like that I will be playing sick baby for a week, women are different, practice vomiting during pregnancies,,,
hum, maybe, you really had a good time in Texas and got the magic bullet.

I think is great that Beryl and you email, you have things in common, things to share, things like Me, she is going to write.
Your good atheist energy arrived, I feel better.
With my first girl friend I coudn’t say te amo (I love you) and said instead the quiero (I like and wan’t you), silly me
My good, good friend I love you
GuillermoRed lipsWilted rose

PS select, cut, copy and paste to your blog Red heart

Hey you (G), thank you for the lovely email. Most of it will be going in my blog manana. Made me weepy even (and ok, yes, I’d had a glass of wine or two but I would have (wept) anyway). Sounds as if your spirits are up. I confess to having been crushed by “this is not my usual email” although I appreciated your candor. I’m just kinda crazy fond of you and I like the world better with you in it. If you heard my message (yes, I called), I hope you weren’t surprised by how much I sound like a kid. In my next life I will have a deep, sultry voice (think Annie Lenox). I would love to have Beryl email. I liked the sound of her voice on your message, and I have always assumed that, married to you, she is a fabulous person. And as for magic bullets, well, I’ll never tell. However, no more ninos for me–chemo took care of all that business.
Love, Linnea

So, Guillermo’s comments go in the blog this time, making this the longest blog of all time. And one long week as well. Glad it’s over and happier yet that my partner is back.

MGH and genetic testing

The Cancer Center at Massachusetts General Hospital in Boston is where I receive my care.  At MGH, all primary lung adenocarcinomas are now routinely tested for mutations.  This is a very positive step toward a more personalized approach in the treatment of lung cancer.

A diagnosis of cancer is a double edged sword.  Traditional treatments have generally made the patient feel even sicker.  When I was diagnosed over four years ago, surgery was the first step.  I had a lower left lobectomy, which was the removal of the lower lobe of my left lung.  This was a very invasive procedure which took weeks to recover from (It should be noted that now surgeons are often able to perform VATS, Video Assisted Thoracoscopic Surgery–which is less invasive). It involved the spreading of my ribcage as well as removal of lymph nodes and bone for biopsies.  I spent days hooked up not only to an IV, but to a machine that removed the fluid from my lungs via two tubes in my back.  The incision for the lobectomy was almost a foot long, and although it was very skillfully done it took weeks to heal.

After nine days (my lung partially collapsed complicating things a bit) I returned home feeling as if I’d aged 40 years.  Because of my incisions, it was impossible to sleep in any position other than upright. We actually bought a lazyboy–rechristened the lazygirl, on the way home from the hospital for this purpose. My body was dealing with bone, muscle and nerve damage as well as the loss of a major organ.  No picnic.

And then–7 weeks later–chemo.  Even though I was staged a IB–my oncologist felt that the size of my tumor (5cm) dictated the necessity for adjuvant chemo.   I was given cisplatin–a platinum based chemo–in conjunction with taxotere. Cisplatin is a particularly rough chemo (and lung cancers are notoriously resistant to chemo), but given my younger age and relatively good health, it was felt that I could tolerate it.

The infusions took about 5 hours and were administered every three weeks for four cycles.  The taxotere infusion lasted an hour, and during this time I would keep my hands immersed in a bowl of ice.  This was a strategy suggested by the infusion nurse (Lisa!) to help prevent the neuropathy often associated with taxotere (which was also the chemo responsible for my hair loss).  It might have worked too–although I do have noticeable neuropathy in my feet–there is very little in my hands. By the time the cisplatin had all dripped into my veins, I would begin to feel out of it.  Nausea was not nearly as big a problem as I had feared. The anti nausea drugs worked quite well (until the 4th cycle) and made me sleepy too–and I certainly didn’t mind sleeping through as much of this as possible.

We would return to the hospital the next day for a shot of neulasta.  I can honestly say that much of this time I remember only vaguely–it was as if a heavy fog descended on me.  I would feel pretty awful in general for the first few days and only gradually get my strength back, and then it was time for another round. The side effects tend to intensify with each cycle, and by the fourth cycle I was struggling.  The foggy feeling persisted for almost a year–I’ll be sure to post on chemo brain at a later date.

I don’t want to scare anyone.  Surgery and chemo were difficult, but they were doable and I have long since recovered from most of the side effects (not including the removal of so much of my lung).  However, I think it is also fair to say that these treatments were hard.  Wouldn’t it be great if there were other options, like maybe a pill you could take?

This brings me back to MGH and genetic testing.  The objective of personalized medicine is to determine which treatments might be most effective for a patient before they are administered.  An unfortunate aspect of some traditional therapies (such as cisplatin) has been that they are not selective in approach and that the effect is systemic–you kill good cells along with the cancer cells. Targeted therapies, such as the clinical trial that I am enrolled in, have the potential to do less collateral damage.

Here is a link to the MGH web site where the genetic testing program is described:


The stories of two patients are highlighted.  One is myself.  The other is a gentleman that I have the pleasure of being acquainted with.  He has the EGFR mutation and his story is remarkable and an example of what is possible with personalized treatment.  Check it out.