I had an oncology appointment in Boston today and met one of the new members of my team. Alice will remain my oncologist, but her role will necessarily be more limited than before. I told this new doctor that I felt my cancer was now in my right lung as well–I can both feel and hear it (wheezing/crackling). She took a listen with the stethoscope and confirmed.
So those horses are not only out of the barn–they are moving to another pasture.
Obviously that’s not a good thing. It’s a damn shame that lungs are an essential organ, but it is what it is. And what it is, is that it’s getting harder to breathe.
Time to spring into action. Given the fact that I have some upcoming big plans (a panel at Takeda, my TED talk, birthday, Thanksgiving) we are holding off until December. Scans on the 2nd, first infusion on the 5th.
Originally the plan was to add carboplatin and avastin to lorlatinib. However I have already had four rounds of carbo as well as four rounds of cisplatin. A lot of platinum for one girl. My peripheral neuropathy is rather severe, particularly in my feet. On various occasions I have walked around unaware that I had cardboard liners, stones, or wet socks in my shoes. The bottom of my feet are almost totally numb, and although I have adapted to this unsettling scenario (only an occasional stumble) we certainly don’t want it to get worse.
So Alice felt carbo was not the best bet, and that perhaps we should go with pemetrexed instead. We were going to add avastin, in the hope of hitting the cancer with a bigger hammer. However, I have been coughing up some blood and also have had small abrasions become larger wounds that were loathe to heal–both indicators that I might be at greater risk for bleeding in my lungs secondary to avastin.
There is a distinct possibility (and a big, big hope) that chemotherapy will have a synergistic effect with both lorlatinib and binimetinib–the drug I would receive in conjunction with lorlatinib in the next clinical trial I shall enroll in. Given that, I want to make certain our approach is not tepid. As avastin has been ruled out, I asked that carbo be added back in–but at a lower dose. If I tolerate the first round, we will continue. If not, then it will simply be pemetrexed.
I had a vitamin B12 shot today and will begin taking folic acid in preparation for infusion. I am ready but also understandably leery. This will be the first time that I have undergone chemo while living alone. That in itself should be a bit of an adventure. However, I think I know what to expect.
And I am ready to launch an attack.
life and breath: outliving lung cancer 
Hang in there. I am saying a prayer for you.
I am praying for you Linnea. I am also a survivor here. I get it. Susan
Sending you healing vibes
I wish I were a praying person. I’d be praying for you. But I AM a hopeful person, and I will be holding you in my heart and mind on Dec 2 and Dec. 5. You are one of the most talented, creative, courageous and strong people I “know” and you will be doing fine again soon. Hope, Love, and Hugs – Kristen Aliotti
Wishing you all the best. And please check your feet every day!
“Attack!” Remember Linnea, you may live alone but you are Not Alone!👈🏼❤️
Roll the dice! Who knows.
Linnea, thanks for keeping us all in the loop. You continue to be remarkable in the face of daunting circumstances, but that is the you we all know and love. Your candor is outdone only by your courage. I hope and pray this next course of action will work—give you time and symptom relief. I just wish you had someone with you (in person)—as we are all here for you from afar. Feel our love and hear our cheers of support. Keep us posted, sister! ❤️
Sending hugs Linnea.
On Thu, Nov 14, 2019 at 10:39 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: ” I had an oncology appointment in Boston today and met > one of the new members of my team. Alice will remain my oncologist, but her > role will necessarily be more limited than before. I told this new doctor > that I felt my cancer was now in my right lung as ” >
Thank you for update! I am sending you good vibes and prayer for success with your next attack. Your thought and insight to paper are always appreciated with your honesty. Stay strong and keep looking up. We share a birthday on the 26th that makes us related in some way for sure, 💖💖
Carboplatin is horrible I found Pemetrexed somewhat easier –
Worked to date – Wishing you the very best of luck on the chemo ‘merrygoround’ – Good and brave that you can delay it for a couple of weeks and get some serious shit done first xxx
You have.an army of supporters standing with you ready for this attack!! You go girl!
Sending you healing, Linnea. You got this!
Dear Linnea,
You amaze me.
You get kicked in the gut and then in true Linnea- fashion you are back fighting. I think you got a good plan set up. I think you will do well, You are not a novice, and you know, sort of,what to expect. Pemetrexed worked well for me, but it took some tweaking w the supportive trx. I would add Claritin D (or Claritin if you have high BP) to the trx, if I remember correctly I took it two days before and for a few days after infusion, It helped me with the runny eyes and nose and the leg pain and squeeze from Pemetrexed. It made quite the difference. In addition I think I would ask for i.v fluids in conjunction with the scan. Ask for the kidney friendly contrast. Protect the kidneys. I also got a B12 shot with every trx to combat fatigue. It did. If that was placebo effect or true effect, I don’t know. “Muki” told me about it and so we tried. You have had steroids in the past so you know how to deal with them. They helped me, but holy cow, Granma’ Roid was not so pretty.
That is all I can remember off hand for dealing with Pemetrexed.
I think of you and I wish you all the best, always.
Love,
Annika
Linnea,
I typed too fast It was Munkitoes, not Muki.
Annika
Thinking of you!!!
Always thinking of you. ❤
You are the bravest warrior!
Sending you powerful positive vibes
Much love
Hildy