Me again

I would like to thank all my friends from INSPIRE for sharing your individual stories. I believe by speaking out you are empowering not just yourselves, but others who have been impacted by this devastating disease, lung cancer.

Now it’s time to update my own status.

I met with various members of my team last Wednesday. Due for a scan in two weeks, they bumped it up to that day after I described my growing anxiety over steadily worsening symptoms; cough, fatigue, and bronchorrhea.

Bronchorrhea is an uncommon symptom associated with the variant of lung cancer I have, mucinous bronchioalveolar carcinoma, and it is making bedtime miserable. The moment I lay down, my lungs start to crackle. For the next 30-40 minutes, I cough, hack and spit as I clear 2-3 ounces of frothy mucus from my windpipe. It is exhausting and at times frightening as well. There is no antidote for this sort of bronchorrhea, other than treating the underlying cause, the cancer itself.

Although some of my cancer is yet responding to treatment, it is likely that a new clone or mutation has been selected out for; one that is resistant to LDK378. This scenario is suggested by the appearance of my scans, as my cancer is returning in a very different pattern than it has previously. Rather than a gradual consolidation of diffuse nodules, much of what we are now seeing resembles billowing smoke, and is likely responsible for the bronchorrhea. However, the only way to confirm this hypothesis is to retrieve some cancerous tissue.

Fortunately, a biopsy is now considered doable and a core sample shall be removed from my left lung on 12/12/12. In addition, I will take my last dose of LDK378 on 12/11 and one week after the biospy, I will start chemotherapy; four rounds of Alimta/carboplatin followed by continuous maintenance with the Alimta alone.

When I underwent chemotherapy in 2005, I had a port installed. As it is a foreign body, there is a risk for infection and there are now a limited number of antibiotics that I can tolerate, so at least initially, I shall forgo the port. Should infusion through an IV prove too difficult, we will reconsider.

So that’s the scoop, from the medical perspective.

33 responses to “Me again

  1. Welcome back! I had a bit of a hard time reading this post, because it was news I didn’t want to have happening AND because I get scan results tomorrow morning. At the same time, when I finally did read it, it was a good reminder that stuff comes up, and we deal with it. I guess we are getting good at doing that. Anyway, sending you my best, for your medical stuff and for everything else. Thanks for all the guest posts, and thanks for your post as well.

  2. Dear Linnea,
    I so appreciate you. You are a wonderful inspiration to so many people. I was diagnosed with bronchoalveolar carcinoma in August 2011, had surgery (left lower lobectomy) and chemo, and then a recurrence in August 2012 with another surgery (right upper lobectomy). I have been following your website since about March of this year, and signed on to Inspire this fall. Thank you for everything you do to help and encourage people, even in the midst of your health concerns. I have been hesitant to share my own story, as I am a very private person, but you make me want to be an advocate and to step out of my comfort zone to try to help others. My thanks and prayers are with you. Beth (simontemplar on Inspire)

    • Beth, thank you for the kind words but do know that there are ways to help while staying in your comfort zone as well (actually, I’m sure you already know that, as a member of INSPIRE). However, if you’d like to share your story at some point, I would be happy to assist you.

      Best,
      Linnea

  3. NOT impressed with this update:-( What you’re going through at night sounds terrifying. Hope the next treatment improves things.

    • Thandi, I must agree; most unimpressive. However, it could be worse and now I am doing my best to get pumped for my next chapter in this journey.

      Linnea

  4. Hi Linnea, I am so sorry. I’ve not been diagnosed with BAC, but lately I’ve been getting that horrible choking on mucous as well. (Is it possible that they missed the BAC? I have adeno with an ALK mutation.) You understate that it’s frightening–it’s terrifying. Half the time I wonder if I am choking to death. My onc told me as well that the only thing to do was treat the underlying cancer. (I’m waiting for the Phase 2 LDK trial). I hope we both get relief from the new meds.

    • Ellen, I couldn’t answer that (about missing BAC). Truth is, they don’t even call it BAC anymore, but I take issue with that–mucus is mucus though and I am sorry you are experiencing this as well. Good luck getting into phase II of LDK–I wish you a great response and an end to this unpleasantness.

      Linnea

  5. Gosh, Linnea, so sorry to hear about this nagging development (understatement!!). You remain in my thoughts so often and I will be thinking of you more and more, especially on 12/12/12, with good news to follow on the results. You take care, the world is pulling with you.

  6. Linnea, we were sorry to hear your news, but were relieved to get an update on you. The series of stories you have facilitated has been a gift to us and many others. We were unaware of BAC, it sounds frightening. Positive thoughts and prayers going up for you. Stand Strong.

  7. Kathleen Gereghty

    My thoughts and well wishes go out to you. Will be thinking of you, especially on 12/12.

  8. Hi Linnea,
    I faithfully read your blog – I one of what I am sure is a ton of people that find your words to be a huge comfort. My father has stage
    4 lung cancer and has had almost 3 years of chemo both regular and maintenance with very little breaks. He has never had a port and maintains his veins through all his chemo carbo, taxol, alimta, taxotere, avastin and zometa by staying very hydrated prior to his visits, starting the day before. Perhaps you knew to do this already, but for him it makes a huge difference and he has been able to avoid a port. Three years of chatting with oncology nurses has benefits. The other tips he has picked up along the way are to warm the veins just prior to puncture. They make little hand warmers for this, and it is always one stick if he has hydrated and warmed the vein. He has also requested pediatric needles, but only if the nurse is comfortable using them. Some nurses are more comfortable with them then others but he says they feel much better then the larger needles. I wish you the best of luck.

    • I had heard the one about warming the skin ahead of time; I should definitely try that. And I appreciate the reminder to drink lots before hand. Great to hear that your father has managed to have chemo for three years sans port!! And yes, I bet he knows those nurses pretty well by now. Best of luck to him, and thanks again for the kind words and for taking the time to share these tips.

      Linnea

  9. Dear Linnea – my very best wishes for the appointments you have ahead of you. I second the advice to hydrate well before chemo. You may remember that Guillermo had some difficulty with his veins and inserting the needle for chemo. What did help was an extra large green tea while he was waiting for blood results before starting the chemo. The nurses also put a warming pad on the arm before starting. The good news is Alimta runs fast – the flush takes longer. Remember to breathe. Thinking of you…..Beryl

    • Beryl, I will add a steaming mug of green tea to my pre chemo prep kit–thanks for the reminder and the tip. And I will remember to breathe as well.

      Linnea

  10. Ach, dear friend. MERDE! Hope 12/12/12 is a sign for good things. I implore the universe! For me, third dose of taxol/carboplatin on the 13th, then a decision about surgery. If I decide to do it, I will move over to MA General. Have written separately. Not sure it ever arrives, but you are hardly out of mind. I send a hug and love, ginger

    • Ginger–sorry for the late response; your comment didn’t show up at first and then I just didn’t have time to come back. But yes, you have used one of the first french words I ever learned in an apt way. However, I have had a bit of time to get used to this change in direction and I am ready. Hope you are holding up–good luck with the 3rd cocktail hour.

      love, Linnea

      ps: (no email came–I will send you one to make sure you have my address)

  11. Hey Linnea- I cheated a bit and read your recent entries on Inspire. I hope you can get some good resolution of symptoms. I have a good friend with two kids who have CF, and I can attest to the efficacy of percussive therapy for loosening mucus. As for Alimta/carboplatin, Chris had them both, although not in combination, but did well on both, side-effect-wise. Never had a port through two-ish years of IV sticks, so I can also attest to the usefulness of hydration/heat/experienced nurses/smaller bore needles. Take your time and get what you need. We also got some advice about taking glutamine (comes in a powder at most nutrition/organic venues) to fend off possible flu-ish type aches from Alimta, which seemed to work well. Couldn’t hurt to have it on hand.
    That said, my heart is with you. Good luck my dear sweet friend. I am pulling for you.
    XOXO (squared)
    Joan

    • Joan, I keep hearing good things about the possible extended efficacy of Alimta. If it can get me to a place first where my lungs are clearer and then hold me there, I will be a happy camper. Again, thanks for the first hand experience tips–a pattern is emerging. The bit about glutamine is new to me–on the list it goes!

      xo Linnea

  12. Hi Linnea,

    I am releive to read your updated post even though you have to go thru some challenges. Wishing the chemo will help you back to comfort zone. You inspire me as alway. Will you need to travel to GM for the chemo? That is a long drive. Hope you can get some help to drive you. Wishing 12/12 will bring you good luck.
    Love from California. Joan

    • Joan, I have some good friends who are getting together to make sure I have some assistance come chemo time. I had hoped to avoid this treatment avenue, but now I find I am beginning to embrace it with the hope that it will do some good and that I can become strong again. Hope you are well my friend.

      Linnea

  13. Hello, sister-in-bedtime-coughing-and-choking,
    Wishing you the best anesthesiologist and interventional radiologist or surgeon on the 12th! I’ll be seeing Dr. Camidge on that day, going over the scan which may or may not see me on the 12th cycle of Afatinib/cetuximab. That is, if my insurer doesn’t drop the ball again – or was that me? They just denied a $9K claim so I may not even make that appointment. I’ll buy lottery tickets for you and I, just because it’s 12/12/12. Even if we don’t win, hopefully your biopsy will be a cakewalk, and Carbo/Alimta will give you durable relief (I was on Alimta + Tarceva for 2 pretty good years) until the next big thing comes along to zap your cancer. I’m casting about for options as well…
    I hope you can enjoy the holidays, inspite of all this! Beware Decadron mania (overdo the day before/after chemo, crash hard on Day 4/5).
    Best of luck with some prayer thrown in,
    Jazz

  14. Jazz, I’ve been reading your entries about your frustrating insurance experience. Oy vey, not how anyone wants to spend their precious time.

    Get those lottery tickets girl–maybe we can take a trip around the world!!! (or just go to some nice lung cancer treatment/spa close by…)

    My energy has been low enough that a little mania sounds refreshing, but if it leads to insomnia, I will eat my words.

    Good luck and strong thoughts coming your way too…
    Linnea

  15. Hey Linnea, I just wanted to wish you the best ouch with the biopsy. Are they taking it via bronchoscopy or wedge or other?

    I wasn’t aware Bronchorrhea had a name! I have the lovely crackling (like cereal: snap, crackle, & pop) to the point where – combined with my cough – it makes me a poor bedfellow. Nevertheless, I haven’t experienced the clearing of mucous as you experience. I’m unsure if I have the mucinous presentation of BAC, but from other descriptors I think I might.

    Lastly, I hope the a/A is as friendly to you as it was to me. I love having a port, but I can certainly understand your high risk of infection. For this reason, I wish you hearty, deep veins! Best luck my dear. xo

  16. *best LUCK
    apologies for auto-correct!

  17. Linneagirl, if it couldn’t be on 11/11/11, 12/12/12 is an acceptable backup (having it not at all, being the first choice). I wish you strength in all its forms. I’m thinking of you. Love, W. p.s. Be on the lookout for package with belated b-day thing and early Xmasy things.

  18. Linnea, Jim took carboplatin and Alimta for his 2nd recurrence in 2010. After treatment he was NED for a year. Hope it works as well for you.

  19. Hi..I am gina.. I am also on inspire i am gmlphotos my daughter is jennarose. i have stage 4 lung cancer also.. i found out july 18 2012.
    how long have you been living with lung cancer for?? your blog is great. thanks Gina

  20. Hi Thank you for sharing your experience I realise your post is dated Dec 2012 I was wondering how are you doing, it seems you are a survival from 2005 that is amazing look forward to hearing from you thank you

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