Judy M2
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Posts posted by Judy M2
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I'm so very sorry. She will be greatly missed, but she has left us with a treasure trove of advice and inspiration on this site. Your mom was a remarkable woman. My condolences to you and your family.
- LouT and Justin1970
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Love positive results. Congratulations!
- LouT and Justin1970
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Jaime, greetings from San Diego. I have inoperable Stage IIIB adenocarcinoma with an EGFR gene mutation. Two years ago I had the exact same chemo and radiation treatments as you. Immediately afterward, I started on a targeted therapy. Because of my gene mutation, immunotherapy isn't considered to be effective.
While our treatment plans now differ, I believe that chemo and radiation did the job of killing the cancer, and the targeted therapy is maintenance. It took me more than a year to finally get to NED (No Evidence of Disease) in April 2021. I think you can get good results from Imfinzi.
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I'm so sorry to read your post. I will miss her steadfast encouragement for everyone in this forum. Her advice has always been sound and wise, and she has always spoken so highly of her children.
Please let her know how much we appreciate her and that she is wished peace and comfort. Take good care and thanks for keeping us informed.
- LouT and ColleenRae
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Tom's answer is excellent. I'd like to share a personal end-of-life story if you don't mind. My sister-in-law was diagnosed with Stage IV pancreatic cancer with a dire prognosis. We engaged hospice care for her and my husband acted as her caregiver. She was given morphine to control her pain for a few weeks until one day she just slipped into a coma. She never regained consciousness. We were relieved that she had a peaceful end to her suffering.
Surround both your parents with warm family moments. You will have done your best and that's all we can do for our loved ones. Best wishes to all of you.
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Nur, I understand the cultural differences, but if I were in your mother's situation and competent to make decisions, I would want to be the decision maker, not my loved ones. I had responsibility for my father's end-of-life medical decisions, and that responsibility was overwhelming, even though I had his wishes in a written document (advance directive).
Best wishes to you and your family during this difficult time.
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Hi Jason, you're starting off with a lot of uncertainty and that's really hard to cope with. But as Tom notes, your nodules are very small, and he's given you lots of useful information. I also agree that this is a good time to find a medical oncologist.
My own experience with nodules is just surveillance. After chemo, radiation and targeted therapy for my Stage IIIB adenocarcinoma, I still have a 5/6 mm nodule in my upper right lung that hasn't changed in over 2 years and it's too small for PET characterization (which means they can't see SUV uptake). My oncologist has been watching it, but after all this time and treatment it hasn't changed.
It's very common to worry between scans, and especially when you don't know what you're dealing with. Try to take things one step at a time and don't get ahead of yourself. If you do get a diagnosis of lung cancer, there are a lot of treatment options these days that can make you a survivor. Hang in there and we are here for you.
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Hi Oceanna, you might find the monthly KRAS virtual meetups helpful. The next one is February 16. Here's a link to the calendar:
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Justin, my tumor and lymph nodes continued to shrink for more than a year after chemo and radiation ended, and with the additional help of targeted therapy, everything disappeared and I was NED a full 15 months after chemo and radiation ended. It takes time for treatments to work. And remember, stable is good too.
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Justin, I just responded to your mom's comment. You've had great news after a difficult time, so it may take you some time to adjust. I think you'll feel more confident when scan after scan is stable. To this day when I go for my daily walk, I reflect on how far I've come after treatment and take a moment to enjoy how good I feel now and that I have my health back. Take one day at a time, and I hope you continue to get good results.
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Happy New, Year to you too and I hope things keep going in the right direction! There are inevitably bumps in the road during treatments but it sounds like your care is being managed well.
When I was having treatment and recovering from it, I absolutely could not give any attention to things I didn't consider important or helpful. I couldn't clutter up my mind with nonsense. "Serenity now!" (from Seinfeld, lol).
Thanks for your update. I hope you get good results from your treatments. Enjoy your studies!
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This podcast about immunotherapy may be helpful too:
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Here is some info on KRAS lung cancer. A targeted therapy has recently been approved for the mutation KRAS G12C.
You'll also want to check out the KRAS forum under the NSCLC Group/Lung Cancer Mutations.
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Two years ago at this time I was undergoing treatment too. It sounds like any side effects you're having are being controlled, so that's a positive. You can expect chemo to mess with your bloodwork for a while. For mouth sores, MuGard is fantastic but awfully expensive. My wonderful chemo nurse simply gave me a bottle!
Take things easy and I hope you get through your treatments without any other problems. Happy Holidays to you and yours.
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Lizzy, I started chemo and radiation 2 years ago on Dec. 3. The mass in my lower left lung was also 6 cm. Today, 2 years later, I'm grateful to be NED. So I understand everything you're going through!
It might help you to create a Caring Bridge site so you can give the people you invite updates whenever you want. This way you don't have to tell your story over and over, and it may give people permission to talk about non-cancer subjects when they see you. It takes a little time to set up (gathering email addresses) but afterwards it's simple to update and maintain.
In time, I hope your condition becomes one that people can see past your cancer. Today only people who I don't see regularly ask how I'm doing, and that's more a function of politeness. They and I have moved on to my pre-diagnosis life.
Best of luck with treatments and I'm looking forward to the results of your biomarker testing.
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Ugh, esophagitis. I had a severe case of it and know how you feel. I always suggest a palliative care specialist to get that pain under control. I couldn't tolerate the usual opioids like oxycodone, so I ended up on methadone, which controlled my pain well. All the advice to eat soft foods, stay away from spicy foods, etc. was irrelevant for me because I couldn't eat or drink, and what I could tolerate changed hour by hour. I did eliminate dairy because of the acid reflux the esophagitis caused. I also took pantoprazole (prescription anti-acid) for a while.
You'll want to stock up on Ensure in case eating is too difficult. If you get dehydrated, ask your medical oncologist for hydration at your infusion center. I went 3x a week.
Get that pain under control quickly so it doesn't cause other complications.
The good news is that the esophagitis is temporary. I had it for 5 months, but remember, I had a terrible case. I know of others who have it for only a week or so. Hope you're in that group.
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Hi, Lizzy and sorry you're one of us now. But your doctors saved you months of delay by being so diligent about your testing. Many of us (myself included) are misdiagnosed for months because we don't fit the at-risk criteria.
As the others have said, biomarker testing is essential to getting your personalized treatment plan. It will take more time to process but the results are worth it.
I was diagnosed at Stage IIIB two years ago with an EGFR mutation. I am also NED (in remission) and doing well on targeted therapy. It took some doing to get here but I'm grateful for my status.
Let us know what your testing shows. There's lots to learn about this disease but keep in mind that Dr. Google isn't your friend.
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Great post, Lana. You are an EGFR veteran with a mindset much like my own. I hope I can "stay the course" (as Tom says) as long as you have. Best wishes for good scans in January. What targeted therapy do you take? I take Tagrisso, and it has worked well.
Justin
in INTRODUCE YOURSELF!
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I so agree with Lou and @catlady91. I'm concerned that the oncologist who gave you a poor prognosis doesn't have enough up-to-date experience. If he doesn't know, it does not help you to hear what the worst outcome could be. I've never been given a prognosis, even though I asked at the beginning. Take things one day at a time, one treatment day at a time. I hope you can get a more trustworthy oncologist.