Piece of me

You’d think after all these years of clinical trial participation I would have this thing completely figured out. But no.

When I spoke to Alice yesterday I asked her if we would get some results from the lung biopsy on Monday. Post procedure it was explained to me that enough tissue had been successfully removed for the trial requirements, but that they weren’t able to get any extra. At the time (still groggy from the sedative) I wasn’t even sure what this meant.

If you recall, I had a biopsy on lorlatinib where there was an attempt to get extra tissue so that Alice could determine my mechanisms of resistance. Our sample came up empty and she asked the sponsor of the trial if they would be willing to share some of their (my) tissue with us. It cracked me up at the time (and infuriated me) that we had to even ask for my tissue. MY TISSUE. But I also didn’t understand how endemic this was.

Anyway, the answer to my question was that we were unlikely to get any results back from my biopsy (the first of two that are required). And this is when I finally understood that there is a big difference between a biopsy that is for research purposes and one that is for the clinical benefit of the patient.

What is the same is this. It is my tissue, my time, my insurance that is billed for the procedure. My risk, considered high with an intrathoracic procedure.

In other words, this (a biopsy) is something I am doing just for the good of science. Willingly, as I signed the protocol. However, it would not be difficult to argue that I feel coerced by both my imminent demise and the lack of potential treatment options.

For those of you who wonder how I can be grateful for the opportunity to participate in trials (beats the alternative) but also angry, well, here you have it.

Tell me what is fair about requiring me to undergo an invasive procedure, pay for it (billed to insurance), undertake extra risk and potential expense–I have often had a pneumothorax following a biospy, which meant a night in the big house), and to do so simply in a spirit of altruism.

Fucking A. If biopsies are required, then there should be some quid pro quo here. Results should be shared with me and better yet, there should be an emphasis on finding clinically relevant information. If this is not the height of bullshittery in clinical trials, I don’t know what is.

And as it turns out, ASCO agrees with me. Somewhat tepidly, but for their viewpoint on research biopsies, click here.

9 responses to “Piece of me

  1. You go, girl!

  2. I agree! We have faced the very same thing! If it’s for a clinical trial and you ask for some tissue to be sent somewhere else the answer is a resounding NO! We’ve also been strung along with.. hmm we are not sure there is any left! Or if we have it we will have to charge you!!! What,? This is my husband’s tissue and we have to pay you!!!

  3. I agree! We have faced the very same thing! If it’s for a clinical trial and you ask for some tissue to be sent somewhere else the answer is a resounding NO! We’ve also been strung along with.. hmm we are not sure there is any left! Or if we have it we will have to charge you!!! What,? This is my husband’s tissue and we have to pay you!!! Trying to get tissue samples transferred has been ridiculous

  4. Duh!!! This clearly makes no sense. Other than the obvious risk to you, the “Participant”, not sharing some of “You” seems ridiculously absurd. As with most things in “Our” society, Profit is the driving force here with no compassion or concern for the person being “Used” or recognition that they are a tool of the research. Considering your years of fighting and advocating for yourself and fellow Clinical Trial participants to be treated mindfully and compensated for their sacrifice, this is even more upsetting! The bottom line is my belief that you will be helped Linnea!

  5. I feel the same way. Had two biopsies at MD Anderson and two at SCCA none of which I was allowed to know the results of. This is infuriating because I’m on my 6th treatment. I hope Alice is able to somehow get this information for you. If anyone can do it, she can. Best of luck!

    • Hi there it’s all very confusing I had a liver biopsy last year at MD Anderson then transferred to SCCA and MD Anderson did not like to share the results or the the slides took some calls by my Team to get them. I am somewhat new to this research drug trial roller coaster. I also cannot see my CT results on my E chart.

  6. Anne MI Phillips

    I am outraged. If you have somewhere to direct my complaints about the injustice of them not giving you a piece of you then I would like to give them a piece of me. My mind, my middle finger, whatever works.

  7. LInnea – Thank you very much for writing this piece. It’s incredibly important. Those of us who have not walked this journey do not realize the implications. Keep writing and sharing! And we’ll help you share as well!
    ❤ m

  8. Linnea. Thank you so much for all that you do for lung cancer patients especially sharing all the “trials” you face when on a trial. You fight for things I’m certain we – my husband and I – would probably roll over and accept or not understand how important they are to question. You are our “wait a minute that’s not right” person when navigating the medical community. Sending you much appreciation, support and strength on your/our journey.

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