Judy M2
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Posts posted by Judy M2
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@Cin, when I had my first CT scan 3 years ago, it showed a spot on my liver. I was surprised that none of my doctors was concerned about it, but it's been long gone. Hope yours disappears too. Congratulations on the clean lung scan!
- LouT, Justin1970 and Cin
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Thanks, Tom and Justin. I wanted to let folks know that there can be life after a diagnosis of lung cancer.
Congratulations to your Phillies, Tom. After the Padres beat the Dodgers we were hoping for more, but sadly it was not to be.
- Tom Galli and Justin1970
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@Minh, your comments are very interesting. A couple of years ago as a result of a mammogram, I needed to get a biopsy done. The radiologist told me it was just a precaution because what showed up was round, and he said "cancer isn't round". Sure enough, what I had was a benign cyst.
I've had a 5 mm nodule in my upper right lung for a couple of years and lately it's not showing up on scans anymore. My oncologist had also adopted the wait-and-see approach with it.
@DRock, I hope this turns out to be nothing of concern. Glad you'll be watched closely so if there is any change, they'll catch is quickly.
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UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome.
ORIGINAL POST:
Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her.
I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma.
It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant.
November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor.
On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning.
In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable.
I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never.
Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes.
For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you!
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Muscle cramps are from not drinking enough water. Have your primary doctor do bloodwork to test for electrolytes, B12 and iron. Your oncologist likely is only looking at liver and kidney function. Some people find that pickle juice or mustard helps with cramps. Magnesium also helps. Tagrisso also can cause low sodium, especially if you're drinking a lot of water. When I had low sodium I used LMNT electrolyte powder, which has the highest electrolyte values out there. I only occasionally get muscle cramps in my hands and feet.
For diarrhea, you might want to reconsider dairy or take a lactose enzyme when you do have dairy. At least for a while you'll want to stick to a BRAT diet.
Your side effects should subside or disappear once your body gets used to the Tag.
- Justin1970, Tom Galli, LouT and 1 other
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Lily, I've had all Covid vaccines and boosters, the senior flu shot and both shingles shots while on Tagrisso. No problems at all. Last month when I got the bivalent Covid booster and the flu shot together, I had zero side effects.
- LilyMir and Justin1970
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Great news, Karen! Like Tom, my radiation scarring also cleared up, and I hope yours does too.
- Karen_L, Justin1970 and LouT
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What a relief! So happy for you both.
- Justin1970, catlady91 and Tom Galli
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I have heard of the nosebleeds. It's probably because your nasal passages are dried out. Some Vaseline applied with a Qtip is what people use.
I also get an extremely dry mouth at night. I've just learned to live with it. Try to increase your water intake during the day.
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I ate a lot of ice cream and Trader Joe's macaroni and cheese because I had esophagitis from radiation when I was getting chemo. What I could tolerate changed from hour to hour, not because of taste but because of pain. She should eat whatever she can tolerate.
I also strongly recommend a supportive/palliative care specialist for her quality of life issues. Of course, the decision to continue chemo is hers, but the palliative care doctor will be able to find out why she doesn't want to continue.
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I'm so sorry for your loss. Thankfully she was not in pain at the end. My condolences to you and your family.
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This clinical trial involves Stage IV patients who have been previously treated.
https://www.targetedonc.com/view/fda-fast-tracks-sapanisertib-for-nrf2-mutated-squamous-lung-cancer
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Glad you were spared! Whew.
The only home test I'd really trust is the Cue PCR system, which is pricey but accurate. My stepson uses it and in fact he recently (predictably) had Covid after a trip out of state. His Cue test showed positive the first try. His husband (a kidney cancer survivor) went to stay with friends for the duration.
Hope your wife is feeling back to normal.
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Hi Sally and welcome. I had a severe case of esophagitis that started 2 weeks into a 6-week course of radiation. The mistake I made was not getting a palliative care specialist on my team before treatments started. I just didn't know any better. My radiation oncologist was sympathetic but unhelpful.
I can't tolerate oxycodone or morphine. My wonderful palliative care doctor prescribed methadone for the pain, which helped tremendously. After I went on a targeted therapy, I was switched to a Fentanyl patch. My esophagitis took 5 months to heal and then I was discharged from palliative care. (During the time I had esophagitis I had acid reflux as well.)
For swallowing difficulties, there are swallowing therapists who should be able to help. The foods you can tolerate might change from hour to hour. It's best to stay with soft, non-acidic foods.
Many people only have esophagitis for a few weeks. I'm happy to report that mine healed completely, as confirmed by an upper GI endoscopy.
I was diagnosed with Stage 3b EGFR+ adenocarcinoma in October 2019. I had 6x chemo (carboplatin and taxol), 30x radiation and am now on a targeted therapy. I have been through the absolute worst but am grateful to be cancer-free 3 years after diagnosis.
My best advice is to get pain management from a palliative care doctor and also see a swallowing therapist. I hope your side effects heal quickly.
- Tom Galli, Justin1970 and BridgetO
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Those spots can come and go. I'm going to guess that you'll get fewer as time goes by and you adjust to the medication.
Some people have dramatic results from Tagrisso in a few short weeks. I hope you do too.
- Tom Galli and Justin1970
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It's very possible. I would use the cream, and if it doesn't help, let your oncologist know. You may need to see a dermatologist.
My itchy rash is classic eczema, and my dermatologist prescribed mometasone furoate ointment to use when I get a flareup. Luckily, he is very familiar with TKI skin side effects.
Once my rash heals, I make sure to moisturize those areas with an eczema therapy ointment. Sometimes I use a tea tree oil ointment too. Moisturizing is very important. You may also need to drink more water too.
- Justin1970, LouT and LilyMir
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Hi Julie, I think I read your cross post on Facebook and I was one of the commenters.
Tagrisso as adjuvant therapy after surgery for early stages is relatively recent. In my comment I suggested you seek a second opinion with an EGFR specialist.
I was inoperable Stage 3b, so I had chemo and radiation first. For me, the side effects of Tagrisso are minor and manageable.
Keep getting those regular scans!
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Side effects from Tag can show up months after starting it. In m case, the cough started 7 months in. My oncologist referred me to my pulmonologist, who diagnosed nasal allergies/post-nasal drip. Now I take Claritin every day.
At 16 months in, I developed an itchy rash, which my dermatologist treats as eczema with a prescription steroid ointment. The rash occasionally comes and goes in different places, even though I moisturize well.
I refuse to stress about anything. I've already survived the worst that cancer can offer, and as long as my quarterly scans and echocardiograms are normal, I'll just roll with it.
You might want to see an ophthalmologist for a base exam of your eyes, so if you notice anything unusual, they'll be able to compare to your pre-Tag exam. Dry and/or blurry eyes are common with Tag, and this includes sensitivity to light. I use Systane lubricating eye drops at the suggestion of my ophthalmologist.
Many Tag side effects are annoying, and it helps to have regular appointments with your primary doctor and the other specialists on your team to keep up with your health.
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Great news. Congrats!
- Karen_L, Justin1970 and LouT
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I didn't have much nausea from chemo (6x carbo and taxol), but my hair and eyelashes did fall out. There are cold caps that can prevent hair loss if it's a concern.
I don't recall if your mom has had a new biopsy (tissue or liquid) and biomarker testing. If she hasn't, it would be worth pressing for.
I recommend getting supportive/palliative on the team before chemo starts. They are very helpful in managing side effects.
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Great news, Kamoto!
Mom admitted to ER with pleural effusion now diagnosed with cancer
in SHARE YOUR LUNG CANCER STORY
Posted
Hopefully your mom's doctor will be able to do biomarker testing on the fluid. This unfortunately takes time but is worth the wait. Even late stage lung cancer can be treated with good results these days. Hang on there, try not to worry too much and stay away from Dr. Google. Please let us know how the testing turns out.