PET Results interpretation and best medication

Posted by mikebee @mikebee, Dec 29, 2023

My mother of 71 years recently diagnosed with left apical lung adenocarcinoma.
PET Scan results: There is increased FDG uptake in keeping with metastases S multiple lytic/ sclerotic lesions -left proximal humerus, the scapulae, 8th and 10th. right ribs, C3, T2, TS, T7, T9, T10 TI2, L1, L3, sacrum, ilia. and right femoral neck, Reference lesions C3 SUV max 11.2, left transverse process T10 SUV max 14, left ilium SUV max 10.4, sacrum SUV max 6.2, and right femoral neck SUV max 3.9. There is evidence of FDG avid left upper lobe primary, bilateral pulmonary nodules, bilateral mediastinal and right supraclavicular lymph node metastases, as well as multiple skeletal metastases. PET/CT staging T4N3M1c (IALSC 8th ed.).

What does results means and quickest medication apart from chemotherapy??

Shared files

PET Scan Results (PET-Scan-Results.pdf)

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Hello @mikebee,
Unfortunately it appears that your mother’s cancer has potentially spread to a number of locations in her upper chest region hence the Stage 4 designation. You are going to need the guidance of an oncologist as to the next possible treatments.

Best hopes to you and your mother as you deal with this unfortunate situation.

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@sglaza

Hello @mikebee,
Unfortunately it appears that your mother’s cancer has potentially spread to a number of locations in her upper chest region hence the Stage 4 designation. You are going to need the guidance of an oncologist as to the next possible treatments.

Best hopes to you and your mother as you deal with this unfortunate situation.

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thank you @sglaza for the feedback. It's unfortunate the cancer was detected very late.

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@mikebee, The reference to multiple metastases and SUV numbers included in the report are not good news. I’m sorry that your family is having to go through this. Does your mother have an appointment scheduled with an oncologist? They will be able to review the full details of the PET and present her with her options.
Have they completed a biopsy yet? How is she feeling?

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@lls8000 thank you for the feedback. Yes, we have an oncologist appointment on Friday. The biopsy has been done. We are waiting for the EGFR Mutation test results, which should be ready by Friday for the oncologist to decide on the best treatment. She is on painkillers and just going about her daily activities normally.

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@mikebee

@lls8000 thank you for the feedback. Yes, we have an oncologist appointment on Friday. The biopsy has been done. We are waiting for the EGFR Mutation test results, which should be ready by Friday for the oncologist to decide on the best treatment. She is on painkillers and just going about her daily activities normally.

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@mikebee , This will be a long week, but I'm glad that her appointment isn't too far in the future. Having the biopsy results will be very helpful in determining the best treatment. Lung cancer treatments have come a long way in the past 10 years. It is great that we have options now, but of course, we'll always want more until a cure is found. Sending my best to you and your mother.

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Hi @mikebee, how did the week of appointments go? After meeting with the cancer team, I'm sure the interpretation of the PET scan is clearer and the cancer team helped interpret the results specific to your mom. Does she have a treatment plan?

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Hello @lls8000 and @colleenyoung, we had a good day, though a long one, with the oncologist. The good news is that the EGFR PCR results were positive for the genotype Exon 21 L858R. In this case, the cancer team advised oral medication instead of chemotherapy. We should receive the medication in a week's time. The medication is provided through a Patient Access Program by a different organization here in Kenya. We just hope the medication will work well without any negative side effects. I will get more details on the name of the medication in a week's time.

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@mikebee

Hello @lls8000 and @colleenyoung, we had a good day, though a long one, with the oncologist. The good news is that the EGFR PCR results were positive for the genotype Exon 21 L858R. In this case, the cancer team advised oral medication instead of chemotherapy. We should receive the medication in a week's time. The medication is provided through a Patient Access Program by a different organization here in Kenya. We just hope the medication will work well without any negative side effects. I will get more details on the name of the medication in a week's time.

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Hi @mikebee, Having that specific mutation is good news. It's the most common of the EGFR types, making it the most treatable, and hopefully the one that future research will be sure to include. These types of medications, also referred to as targeted therapies, can be very effective at pausing the cancer's growth, and reducing the size of tumors. The targeted therapies are just that, "targeted" to the specific cancer cells. Each one comes with its own list of potential side effects that her doctor will review. There are many EGFR patients here that can be very helpful with managing side effects if she experiences any of those. The med most commonly used in the US is named Tagrisso, but there are other earlier therapies/medications that are also quite effective.
Lung cancer today is very different than it was 10 years ago. I'm thankful for the researchers that identified and developed these therapies, as they are so much smarter than I am! 🙂 There is hope in today's lung cancer.

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Hello @lls8000, we have finalized the financial documentation for Tagrisso, and we are awaiting a response, probably by the end of the week. Are there any other therapies or medications that are also quite effective? We are exploring additional options in case we don't qualify for Tagrisso, which is quite expensive. My mother has low immunity, and we are trying to boost it with supplements; however, we are not considering chemotherapy.

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@mikebee

Hello @lls8000, we have finalized the financial documentation for Tagrisso, and we are awaiting a response, probably by the end of the week. Are there any other therapies or medications that are also quite effective? We are exploring additional options in case we don't qualify for Tagrisso, which is quite expensive. My mother has low immunity, and we are trying to boost it with supplements; however, we are not considering chemotherapy.

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Hi @mikebee, I hope that you receive a response to the application soon. Waiting can be difficult.
Your mother's doctors are the best group to ask about alternate treatments. Each treatment may not be applicable to each patient due to the specific variant and genetic makeup of the cancer. There is a patient led group related called "EGFR Resisters" that may be helpful. The "Treatment" section of the following page lists alternative targeted therapies; https://egfrcancer.org/about-egfr/.
How is she feeling? Is she eating, and how is her breathing?

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