Hello,
I just came across your site this morning. My husband was diagnosed with Stage IV NSCLC in Oct 2021 with mets to his spine and brain. He has had a couple of radiation treatments when first diagnosed and he has been taking Tagrisso since Nov 2021 with no major new growths until now. We received news ~2 weeks ago that his original tumor in the left lung is growing, along with three spots on the spine that have been problematic in the past (L2, L3, T4) and some new areas T5, T6. We are awaiting brain mri results (have not had new activity in the brain since Nov 2021 radiation).
I thought I was prepared for this news, but I feel like I did when we first received the news 3 years ago. And I am so ANGRY in the way our oncologist told us. It was like "..well, you knew this day would come, now it's time to switch to chemo", very matter of fact attitude. Yet any time we brought up eventual next steps to try to prepare ourselves he never wanted to discuss it, dismissing us that we had to "stay positive", etc. He also seems ready to jump to chemo as soon as my husband stops radiation. My husband has researched the chemo and does not want to do it. He is now 55 and feels very lucky to have been given extra time with his friends and family in relatively little discomfort. He prefers to stay at home with hospice help when needed when we get to that point, knowing that it will probably be only a few months from now.
My question is - how long is it "acceptable" for him to stay on Tagrisso in the medical community? Yes, his cancer is slowly growing, but at what point is it fair to say that Tagrisso has zero effect? Is it a measurement of # of new growths, a % increase in size of current lesions, etc? If my husband wants to use radiation and Tagrisso as his main ways to slow down the cancer, can we insist that he be able to do it? Or are business decisions also outweighing patients' desires. ie) Tagrisso's studies look better if he is dropped from them? Insurance companies don't want to help pay for the high cost, etc.
I feel that if he stops taking Tagrisso, the cancer floodgates open. He was given ~6 months to live before he started Tagrisso. So what is a reasonable request we can make to buy us a little more time, knowing that we don't have much?
Not wanting to stop Tagrisso
CRT
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Posts:2
Wife to husband diagnosed at age 52 with Stage IV NSCLC
Forums
Reply # - September 29, 2024, 04:46 PM
Hello CRT, Welcome to GRACE…
Hello CRT, Welcome to GRACE. I'm so sorry your husband's cancer is figuring out a work around tagrisso. I'm sorry his onc hasn't been more communicative. It's pretty standard to stay on tagrisso even if chemo is started because it's possibly the only thing that's keeping the brain mets away. So I can't imagine insurance would deny him staying on it. There isn't an automatic next treatment, but it's reasonable to get genetic testing on the new mets to see if the new mutation has a targeted drug or a promising drug trial. He wouldn't be able to move to hospice care while on an anti-cancer treatment (radiation not included).
A second opinion from a large academic center may be the best way to help determine his options, including hospice or palliative care. This is an excellent article on 2nd opinions. Here is a list of NCI designated cancer research hospitals. They will help determine your husband's options and answer any questions.
Please keep us posted and don't hesitate to ask questions, of us or any of his medical team.
Take care,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - September 29, 2024, 05:41 PM
Using Guardant for genetic testing
Thank you for your quick reply! What you mention about hospice makes sense.
And thank you for the link regarding other opinions.
My husband recently took a Guardant blood test but the results haven't come back yet. When he was diagnosed 3 years ago tissue was obtained from L3 because he had a kyphoplasty procedure done at the same time to help strengthen his spine.
Do you think Guardant is as reliant as a tissue sample?
Christina
Reply # - September 30, 2024, 11:47 AM
Guardant genetic testing are…
Guardant genetic testing are standard of care testing products. They have both liquid (blood) tests and comprehensive tissue tests. The best first option is the liquid testing but it is limited to what if anything is found in the blood. If it comes back negative or doesn't have information that is actionable then a tissue biopsy might be done. It makes since that they took tissue from the spine before but it isn't the best option if there are other options like a core needle biopsy from the lung tumor. Bone is difficult to get, painful to get, and isn't as useful as from other tissue samples. With that said testing from tissue can give a lot more information. Before making decisions about doing more testing is to know what if anything can be done about the information you get.
So no, blood tests aren't as reliant but they are a better place to start the process...easy to get and quick with results.
I'm sorry I didn't see this yesterday.
Take care,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - October 3, 2024, 02:13 PM
Hi CRT, I wanted to share…
Hi CRT, I wanted to share this video and this one with you in case it helps with understanding blood and tissue biopsies as they relate to nsclc.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.