Bits of me: an update

I got a call from Alice (Dr. Shaw) last week with some news per my molecular testing. As luck would have it, I was trying out a new edible (delicious, weed flavored lollie) and was starting to feel the effects. I probably should have left my phone untouched but when Alice calls, you pick up.

So I did. And…I was pretty flipping stoned so trying to make sense of what she was telling me (while also doing my darnedest to maintain decorum) took a lot of effort. Going over the conversation in my mind the next day, I wasn’t quite sure I’d understood correctly and so I emailed her, fessing up as to my state of mind at that time and asking for clarification.

I didn’t hear back from her until Monday. In the meantime I had requested that she prescribe an antibiotic as my left lung has been really boggy and my energy level exceptionally low. Obviously it could be my cancer but I was hoping that my symptoms might represent a concurrent infection. So Alice called to discuss and this also provided that opportunity for clarification.

I heard what I thought I heard, which is basically this. Evidently my biopsy was contracted and paid for by the sponsor of my trial, which meant that they also ‘owned’ one of the core samples. Another went to MGH, another to research, another was used to attempt a mouse model of my cancer.

As my tumor is highly lepidic (lace like in its spread) it is difficult to biopsy. And, as it turned out, the samples that Alice had access to actually had no viable cancer cells for molecular testing. So she asked the sponsor if she could have some of me back and they–graciously–said yes.

The hope is that this last sample will hold the holy grail and will provide some information useful to guiding my next treatment option.

If it doesn’t, we might have to consider another biopsy. That is, unless my friend the mouse (sorry little guy, I had no idea) grows my tumor, in which case the mouse will be biopsied.

In the meantime we must rely on how I am feeling in combination with a scan two weeks hence in order to assess the speed at which my cancer seems to be progressing. Given the change in histology, there is the distinct possibility that it will now be more aggressive. I hoped there might be a silver lining here, as more aggressive cancers are typically more responsive to chemotherapy, but Alice did not feel that would be true in my case 😦 Always trying to look on the bright side, I am.

Oh–and at the end of our conversation on Monday Alice asked, on behalf of one of her other patients, about the steps required to apply for a medical marijuana card. Discussing this all later with my nurse practitioner (who found the entire episode highly amusing) I told her that given the fact I was able to help Alice, we could consider my personal research as community service. 😉

And, on another bright note, I am feeling significantly better–I believe the antibiotic was exactly what I needed.


ps: check out this great Health Stories Project article about my friend and fierce fellow advocate Andrea Borondy Kitts. I get to play a small cameo 🙂

9 responses to “Bits of me: an update

  1. Curious if you are only taking the cannabis candies for the symptoms or if you have explored using oils to kill cancer. When I was diagnosed in October I had a few friends that were into the Cannabis Kills Cancer thing. At that point I still had not been biopsied, so I spent time researching it. The science behind it is very limited, most of the evidence is anecdotal. I even acquired some expensive THC oil, but did not use. Kind of a Plan B.

    • Honestly, I am using cannabis not because I feel it has cancer fighting properties but rather because I enjoy it. Combined with lorlatinib (and I need to speak to the maker of this molecule about this) it has psychoactive qualities which I, as a creative person, enjoy.

      xo Linnea

  2. Response to leitskev. I can tell you about my experience with cannabinoid or CBD oil to try and kill my lung cancer tumors. I contacted a company in CA called CannaKids which purportedly had had great success in treating and curing glioblastomas (brain tumors) in children and could possibly help with my lung cancer. I moved temporarily to CA 3 years ago where the CBD oil infused with THC is available and legal. Under the direction of a nurse practitioner for dosing, I began taking small amounts of oil daily and increased the dose to the optimum level as recommended. (I would need to look back at my notes to tell you the amounts.) This procedure took 4 months but by that time, I had completely lost my appetite for food, had been hospitalized several times for dehydration and had lost about 30 pounds. We had to stop the experiment at that time for these medical reasons. It took another 3 months to titrate completely off the CBD oil (and the loss of another 10 lbs) as when I stopped it altogether, I experienced extreme withdrawal symptoms of racing heart, high anxiety and mood lability, shakiness and high blood pressure. In fact, I had to take a daily sedative to control the withdrawals for 3 months. In the meantime, I had a PET scan which showed disease progression. So unfortunately, it was an expensive and disappointing and negative experiment for me. That being said, I noticed the healing of several smaller symptoms early on when the dosing was low ~ the healing of an itchy skin rash that had been plaguing me for months (and which has never returned), a decrease in my blood pressure and a couple of other relatively minor ailments which I now can’t remember (because I have memory loss due to another medication that I currently take). So, it may be that a different dose or a different strain or a different mixture of CBD to THC could be helpful in the future when researched more fully with clinical trials when they are allowed. Not to mention, each person’s body is completely different in chemical nature and in response action. I am hopeful that CBD oil CAN be helpful in the future to more people. As my body revealed, even organic CBD oil can produce deleterious side effects, though, when taken in large doses for a long period of time. Yet, there is hope for the future, I think. Even my oncologist thinks that this may be the case. I hope this information is helpful. I’m open to other questions about it.

    • Thanks Leila. Sorry to hear it did not go well for you. I assume you used something similar to the “protocols” talked about…THC oil and CBD oil separately. The goal seems to be 1gram of THC and 1 of CBD per day. Another reason I decided not to attempt it was that seemed like it would leave me stoned all day. Another way I’ve heard it is 60 grams of THC in 90 days. I guess it is THC that kills cancer, or so they say. CBD is from hemp, THC from cannabis. CBD has low amounts of THC. That’s my understanding anyway, you probably know a lot more. The science behind this has not convinced me, though the anecdotal evidence is tempting, and of course those of us with cancer are vulnerable to promises of cures. It’s important to hear stories like yours, someone who really made a serious effort at this and it didn’t work.

  3. Linnea, Making trophies can help too, and the Love of your friends👈🏼❤️

  4. I love reading your stories, Linnea—even when the news has a somber edge. You are able to find humor in the most unfunny situations—and that is an incredible talent and gift. Hoping something presents itself. I am in a new chapter myself and can empathize. Keep sharing and I’ll keep pushing for you!

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