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Wife Just Diagnosed w/ ES SCLC - What Can We Expect?
Lung Cancer | Last Active: Aug 20, 2022 | Replies (222)Comment receiving replies
Merry, actually things have been going so well, compared to only a few weeks ago, that I have been enjoying the simpler life.
Liz completed her palliative radiation treatment and will soon begin immunotherapy with Sotorasib (Lumakras). The genetic testing of her tumor revealed that it has a genetic mutation that can be targeted (KRAS p.G12C). Essentially, the Sotorasib turns off the reproductive ability of the cancer cell and specifically affects only those cells with the KRAS p.G12C mutation. The drug was approved for use last May and shows real promise. It increases longevity by an average of 7 months (4-13 mos range) in test patients and we are hoping Liz is on the high side of the curve. On the down side, there are several possible side effects and she has to take 8 of the pills each day. I am glad that we have good insurance as the cost is around $19,000 per month. She will have regular CT scans and blood work to monitor the efficacy of the drug.
Her breathing is improved and we are trying to wean her slowly off her dependence on constant oxygen. We had her in the pool a few days ago and plan to make it a more frequent event for the rest of the summer.
She has started eating in earnest again and actually gained 3 pounds this week alone. She is still in constant pain but her being more active will hopefully restore some muscle tone to help reduce the pain.
Replies to "Merry, actually things have been going so well, compared to only a few weeks ago, that..."
Hi Bob- I am so very happy to hear that Liz is improving and even got in the pool! Best of all they can now control her treatment with a targeted medicine rather than taking a guess.
I have migraines and the new medications, for me and my insurance, $500/16 pills!
To help Liz's breathing have her try and slow it down and get into a comfortable rhythm. I do pursed-lipped breathing. There are many kinds of breathing that can be done but I find this the best. When she climbs stairs try and get her to keep breathing? If I'm in a hurry I hold my breath and wind up having to stop and pant instead of breathing slowly.
It's my turn next week for my 25th year CT scan! So I'll be traveling to MGH on Thursday but I will have my cell phone and can check messages.
Hope that it's not too hot for the pool!
Merry
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I’m glad they have identified the driver gene of her cancer. I’m sure you’re learning more about KRAS, but the inhibitors can be a game changer. Unfortunately Sotorasib hasn’t shown the same longevity that some other gene inhibitors have seen, but it’s a start. More research is needed to prevent the cancer from outsmarting the drugs. It’s a race against time for many of us.
Not everyone will experience all side effects, I’m hoping that she gets a break from feeling miserable and that the inhibitor is helping!
My cancer is from the ALK mutation, I also take an inhibitor, and it’s worked wonders for me, I absolutely know that I would not be here without it.
Take care, Lisa