Another good news health update! No new mets anywhere, no progression anywhere, AND a little improvement in the meninges! No sparing the exclamation marks in this post.
We love Dana-Farber Cancer Institute! For anyone wondering where to get exceptional cancer care in New England (and maybe the best in the world!), I so recommend Dana-Farber. For us it is a five hour drive, but what is that really in the big scheme of life if it can save your life, prolong your life, improve your quality of life – you get the idea. And, it is the only healthcare facility I’ve been to where you can have blood tests, CT scans, brain MRI, and an EKG in a span of two hours, and two hours after that your oncologist has the results to share with you. That oncologist only treats patients with your type of cancer, and likely is a researcher and/or teaches at Harvard Medical.
Lorlatinib, my current heroine fighting the battle for me while I keep my mind and body healthy, is doing her job well. Last July I began on 100mg daily, but fairly early on got such bad neuropathy that the dosage was reduced to 75mg. That reduction, acupuncture, and learning how to deal with neuropathy all helped to make it much better than just manageable. I have wondered if I should try to go back on 100mg for the best chance of the most lorlatinib reaching the brain. (It is thought that it cannot reach the brain as well as other parts of the body. At least that’s my understanding from reading research study materials on the phase 1 trial.) I asked today about increasing and got a “As long as it is working, we don’t want do something that may increase the neuropathy.” I didn’t get a “no, never”, so if I do have brain progression in the future, that may be an option.
Being in a clinical trial is an honor. At today’s appointment lots of questions were asked about side effects and other things, I always have to complete a questionnaire, and I’m required to keep a medication log. When they take blood for tests, extra vials are filled for the research. I get to be part of something that may help change how lung cancer is treated. The hope that it will someday soon be a manageable chronic disease is real.
The known Lorlatinib side effects of high cholesterol and triglycerides, the neuropathy, and fatigue (cancer and the drug both are likely culprits) are really not impacting my quality of life. We’ve made adjustments for sure, but my days are great. For someone with stage IV lung cancer with metastases in her liver and leptomeninges, I’d say I’m doing fantastic. I’ve got a lot to live for and look forward to, and every day is one to be enjoyed and be grateful for.
One last word about Dana-Farber – HOPE. Kind and patient people who instill confidence and offer hope, always. Hope.
Finding joy in the everyday every day, and ever so grateful to be here to do so.
polepole ~ breathe 