Free to Breathe

Update - my Foundation One report is in. 😯

Friends,

My last scan at the end of June made it official: no new spots, but everything is growing. I had already had a biopsy with a removal of a lymph node by that time so that we could get a comprehensive genomic analysis of where I'm at right now. The past month has been an exercise in patience as I waited for Foundation One results.

The results took me by surprise. Tagrisso has worked so well, it has completely wiped out all the cells that had the T790M mutation. I still have the EGFR exon 19 deletion. Now it has a couple of new friends - BRAF and PIK3CA. I've been doing research in earnest and it appears that an EGFR/BRAF combo is quite unusual. (I bet that as more people come off of Tagrisso, it might become less rare.)

My oncologist at Roswell has found one clinical trial in all of the US that might fit my situation - a combo of Tarceva and a MEK inhibitor way down in Florida, at Moffitt. She also says my cancer is growing slowly enough that we can gather some more information before deciding on what my next treatment. I'm feeling good, which reinforces taking some time and staying on Tagrisso at the current time.

I hope to have another blog post soon.

Anita

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Dearest Anita,

This is such a surprising turn of events. I'm interested in learning more when you have more to share. Thank you for sharing your experience and the drs thought process.

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Denzie,

Our mutual friend Janet told me, "You just have to do it YOUR way, don't you?" Truth is, there are going to be all kinds of different situations for people coming off of Tagrisso.

My onc is looking into getting archival tissue from my first biopsy after diagnosis and getting a Foundation One analysis so that we have a baseline. I wonder how long that will take? Both of my doctors seem comfortable leaving me on Tagrisso until September if necessary. I'll be monitoring my state of well-being closely.

Hugs, Anita

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Glad to hear you are feeling well. The wait for test results can be really nerve wracking. I hope the information you now have will lead to a successful treatment plan. May the force be with you. Are you doing any knitting during all this?

Jean

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Thanks, Jean. More phone calls and reading lie ahead. This won't be an easy decision.

I've been knitting as a test knitter for a sock pattern that my daughter is working on. They are perfect k2 p2 ribbed socks that maintain that pattern throughout, even in the heel and ankle gusset. The gusset stitches are decreased along a ribbed brand on the bottom of the foot, helping to maintain an unbroken pattern. I'm on the toe decreases - the end is in sight!

Anita

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Sounds exciting. Would love to hear more.

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Hi Anita - sorry that there has been growth but the good news is there aren't any new spots! My first biopsy sent to Foundation One revealed that I had 7 mutations, one of them PIKC3A and I have been following any clinical trials that might be targeting this mutation. Wishing you all the best as you traverse this new path.

~Peg

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There is an arm of the NCI-MATCH Trial with a PIC3CA drug, but it's a single agent (not in combo with an EGFR inhibitor) and there's a 28 day washout period. I don't think it's there trial for me. Here is the Roswell Park description of the trial:

roswellpark.org/clinical-tr...

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Hello Anita,

So sorry to hear about the growth! I don't envy you working through this and thinking about where you want to head, so much to consider. It was very kind of you to share with us - thank you. I will be holding you close in my thoughts and hoping for all the best. Hugs.

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Thanks, Peggy. A possible next step is coming into view, I have some phone calls to make this week.

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Keeping my fingers crossed!

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Hi Sci-fi, I admire how you can digest all the treatment info! We do get our honorary MDs. Thanks for sharing and hoping for good, healing outcomes.

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Haha to the honorary MD! It's my geeky side having something to focus on. Thanks for the good wishes.

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Wow Anita what great news. May God continue blessings and healing you completely. I love your blogs you are so informative and have no idea how helpful you are to us.....thank you!!! and God bless🙏🌷👼😜

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So glad to hear I'm helpful, Faith!

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Anita, I am always impressed that you focus on finding the silver lining. Growth is scary news to hear, but I'm grateful it is slow enough to take time to make informed decisions. Praying for you.

Jennifer

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Thank you, Jennifer. All prayers gratefully accepted.

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Anita,

Can you tell how you went about having Foundation Testing done? Did you need to have a new biopsy?

Is there a medical reason that your Oncologist needs to use in order to have it covered by Insurance. I have heard its' rather expensive ($5K or more), but if my insurance will cover it, I feel it's worth having done. Currently I am Stable and have been for many months, and was most recently treated with Opdivo, but stopped last August after developing low grade Pneumonitis for the third time. I am scanned every 90 days and I have had amazing results - my tumor is very tiny and has not changed in months. When my Onc reviewed my June scans with me, he said he felt it's likely know only residual scar tissue and is very pleased with my response. However, with Stage IV, I know that realistically at some point it's likely the cancer will progress, so I'm trying to figure out what my next options may be. He' very reluctant to do Nivo again and feels this time it may cause a much more severe Pneumonitis, which I realize can be very serious (even fatal). His only thought way back was possibility going back to another Chemo (Gemzar maybe Taxol). and that's NOT what I want. I hope now that Tecentriq is FDA approved, he my switch me to that, since it's causing less side effects. I'm Stage IV NSCLC KRAS+, so I know I do no have a lot of other options if I have progression.

I HOPE that if I do have Foundation One testing done, it may help me find more possibilities. I'm covered under a group health plan (Aetna) through my Hubby's employer. We are not low income, but I also can't afford to pay for this test out of pocket, on top of all my other deductibles and co-pays. I don't want to call Aetna and "ask" especially while I'm stable, and I don't when them to deny it. I read about patient's having it done all the time, and most find it is covered, not sure if you need to have progression at the times etc. Any help you can provide will be greatly appreciated.

I am so lucky and thankful to have done so will on Immunotherapy and really feel it's the best for me, so I do hope Tecentriq will work, but also feel I knew other ideas/options.

Thanks for your help and please take care.

Lisa

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Hi Lisa. I would like to get more information on Foundation One for my husband. I called today and I am waiting for a response. I can share info because I was wondering the same thing. We make too much money for any assistance but like you so many many co-pays and expenses.

Gloria.

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Thank your Gloria -- I'll look forward to hearing what you learn -- as always I'm rooting for your Hubby too.

~ Lisa

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Lisa,

I had a new biopsy done. Because my results are unusual, my oncologist has ordered the test to be done on some archival tissue from my first biopsy 3 years ago, if there is enough tissue, so that we have a baseline. So, yes, the test can be done on tissue from an older biopsy. Because the cancer changes continually, most of the time doctors are only interested in testing new biopsies to reveal the current state of the cancer.

I don't know yet whether I will have a problem with insurance covering the testing - the bill has not made its way through the system.

In my case, my current treatment is failing and we need to figure out what my best option is for my next line of treatment. My doctor can probably build a case for medical need. I would guess that all insurance companies, both the generous and the grinchy, are reluctant to pay for such testing to satisfy curiosity.

I hope this helps.

May Tecentriq be an excellent option when you need one!

Anita

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Anita,

Thank you very much for sharing that information. Luckily, I am doing well (Stable) and for now, do not need to worry, but I know that it's always beneficial in this battle to be "somewhat" prepared and to be looking out to see what other options we may have, if and when the times comes.

I wish you the very best and hope that whatever you do learn may lead to more potential treaments options - a goal we all share.

I also agree that without a "medical need" for Foundation One testing (at this time) I might have a harder time getting it coverage and that's why I don't want to raise any "red flags" with my insurer, but I do feel it's a test that should be covered for us all, if it can lead toward more treament options, we all deserve that.

My heart goes out to you and I do hope you'll find a way to treat your progression. God Bless!

~ Lisa

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Anita, Just wanted to thank you for all that you do for our community. I am holding you in my prayers, and sending positive thoughts your way.

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scifiknitter Hi there, I hope you are doing well. As you may have seen, there is more positive news from a trial of osimertinib (Tagrisso): businesswire.com/news/home/...

As you said, Tagrisso seems to do its job quite well, and hopefully will give you and your doctor some time to decide on next steps. Take care.

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Anita what causes the mutations I,m sorry you have so many and this last ones will be cured. I,m still sorry for what happened I Don,t normally act that way. So forgive me.

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