Judy M2
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Posts posted by Judy M2
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Hi Christine, welcome to the family. It is so fortunate that your cancer was caught in the early stages. This forum has members diagnosed at all stages, and your voice is as important as those of us in later stages. I was diagnosed 3 years ago at inoperable Stage 3b, had chemo and radiation, am on a targeted therapy and am NED. Live your life and enjoy yourself. Don't let survivor's guilt get in your way.
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Thanks for the update, Justin. So glad everything went well and you are recovering. Please don't worry about your down days, we understand those very well. You've been through an awful lot and you have every right to vent. Say hi to Bonnie for us, there's nothing like puppy love.
- Justin1970, Cody foote, Izzy and 3 others
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Hi Robert. Has your oncologist suggested a new biopsy (tissue or liquid) for biomarker testing? Depending on the size of the nodules, will you be seeing a radiation oncologist in the meantime? I agree with Karen that another opinion would be wise.
- LouT and Justin1970
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I had pretty severe esophagitis from radiation and never considered Manuka honey. Methadone helped with my pain. My esophagitis took 5 months to resolve. Palliative care is the best course.
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@catlady91, my ex-brother-in-law had melanoma years ago and did, in fact, receive immunotherapy for it. He's been cancer-free for a long time now.
- Justin1970, LouT, LilyMir and 2 others
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Great news. Congratulations!
- Izzy, Justin1970 and LouT
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My oncologist threw the kitchen sink at my Stage IIIB adenocarcinoma: I had 6x chemo (carboplatin and taxol) and 30x radiation, like Tom, before starting targeted therapy for my EGFR-mutated NSCLC. Immunotherapy wasn't an option for me. I just had my 3-year cancerversary and am NED. Best wishes to your mom.
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Very sorry to hear this. There is no rhyme or reason to this cancer business. Sending you both good wishes.
- LilyMir, Justin1970 and LouT
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According to drugs.com, there is a moderate risk of interaction. You'll want to ask your cardiologist about this.
https://www.drugs.com/interactions-check.php?drug_list=4151-0,3438-16026
- Justin1970 and BridgetO
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My first scan was a couple of weeks after chemo and radiation ended, and there was actually so much inflammation and scarring that it was hard for the radiologist to read. I had gradual improvements. Remember that stable is good.
Wishing success for your mom!
- Justin1970, LouT and Izzy
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Hope
in NSCLC GROUP
When we sold my childhood (and adult) home 8 years ago, a required radon test detected radon in the basement. No surprise, it was an older home in the Northeast. But I was the only person in the family who got lung cancer. Turns out that my EGFR+ lung cancer was presumably caused by post-9/11 toxic exposure.
Like Karen said, you could drive yourself nuts trying to figure out the cause. The fact is that our DNA happened to get messed up, possibly by environmental causes. Don't blame yourself. In the last 3 years, I've let go of worry, regret and blaming myself. My cancer journey has not been easy but I actually consider myself very fortunate.
By the way, here in the U.S., the American Lung Association endeavors to raise awareness of radon:
https://www.lung.org/clean-air/at-home/indoor-air-pollutants/radon
- LouT and Justin1970
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Same with me. I'm a Stage IIIB 3-year survivor so far and feel good. Let's keep going!
- Justin1970, LouT and Jill60
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Lily, your new side effects are also common, believe it or not. You're getting all of them at one time. Certainly call the nurse line but you may need to see a dermatologist for your itchy red spots. The dermatologist will be your new friend. They should be very familiar with TKI side effects.
When I first started Tag, I felt like there was a hand pressing on my back. That feeling eventually went away. I've heard of the involuntary muscle twitches, and they should go away too.
I don't remember when your next scan is but when you get it, you should get some comfort that the Tag is working.
- LouT, LilyMir and Justin1970
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The oncologists who present at LUNGevity conferences, as well as elsewhere, all say that in clinical trials we get tomorrow's treatments today. Both LUNGevity and GO2 Foundation have clinical trial navigators if you need that service.
I'm glad your brother was able to get out and enjoy the game and also hope he can find an appropriate and effective clinical trial.
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Lotions are the lightest moisturizers, creams are a little thicker and ointments are the thickest. I moisturize with a lotion, but for areas that have had eczema (caused by Tagrisso), I use an ointment accepted by the National Eczema Association. The steroid my dermatologist prescribed for eczema is in an ointment base.
It's been impossible for me to preserve my nails, they are a super short, breaking mess after being on Tagrisso for so long. My dermatologist says there is very little I can do about that.
Here's some info from Cerave, which many Tagrisso users swear by:
- LilyMir, Justin1970 and LouT
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I've never had a brain MRI in the 3 years since my diagnosis, but I don't have brain mets (Stage 3b). I probably should have had one at the beginning.
- Tom Galli, Justin1970 and LouT
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Use super glue on the cuts. I know this sounds crazy but woodworkers use it when they get small cuts like this. These cuts are another common side effect of Tagrisso and many people get them. Be sure to wear dishwashing gloves if you put your hands in water, even if it's for a brief time. Overnight, use a moisturizing ointment (not a lotion or cream) on your fingertips and cover with cotton gloves.
You should report all side effects to your doctor. If they become too unbearable, you might ask for your dosage to be reduced to 40 mg, but remember, never cut those pills in half.
- Justin1970, LilyMir and LouT
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MzShannon, it's really vital to wait until all test results are in so that your mom's doctor can create the appropriate treatment plan. You wouldn't want to start a treatment only to find it was the wrong one or unnecessary. There are so many treatment options these days. One thing cancer teaches us is how to wait. It's a hard lesson, to be sure.
- Justin1970, LouT, Tom Galli and 1 other
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Justin, share whatever you need to: the good, the bad and in between. You are not a bother! I've had very bad days and almost died after treatments, but I'm here to tell about it. You've had a recent major trauma, so don't let that color your overall thinking. One day at a time. Hugs to you.
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I agree with Tom in general and also about getting her shots, and I would add the Prevnar (Pneumonia) shots to that list. My primary doctor gave me the first Pneumonia shot at the appointment when I was diagnosed (and I followed up with her for the second one).
Your mother may also need to see a pulmonologist, so ask the new doctor for a referral.
- LouT, Tom Galli and Justin1970
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Justin, I belong to a different (non-cancer) support group, and lately I'm hearing about subpar experiences with the NHS. I believe all of our medical systems (US, UK and Canada) have been severely impacted by the pandemic. However, that doesn't excuse the lack of care you're getting. The stigma against lung cancer continues.
I hope you will press for a new care team. You have a wonderful family, and I'm sure they'll be ready to help you do that. Hang in there. We don't want to lose you.
P. S. When you do get your new care team, inquire about new biomarker testing, even if it's by a liquid (blood) biopsy.
- Izzy, Cody foote, Justin1970 and 2 others
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Scanxiety and Next Steps
in NSCLC GROUP
Posted
GBJ, glad you've had a good scan! You're heading in a good direction. Your CEA is lower than mine (1.0) and I'm NED. Keep going!