Judy M2
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Posts posted by Judy M2
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Kamoto doesn't have to fast but does have to avoid carbohydrates for 24 hours beforehand. I always treat myself to a steak for dinner the night before a PET scan.
Good luck, Kamoto!
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Like @Karen_L, I find the EGFR Resisters Group more helpful and in fact recently left the Tagrisso FB group.
To answer your questions:
1. I did not start Tag gradually. 80 mg since day one. Only your oncologist should tell you what to do.
2. I suppose waiting a week to start Tag is OK but only if your oncologist is giving you this advice. Don't take medical advice from the FB group.
Does Tag have blood side effects? It can affect your kidney and liver function, but in the first year you'll get monthly bloodwork done to catch that early if it happens. It can cause low sodium, especially if you're chugging lots of water. My best advice is to see your primary care doctor about 2-3 months after starting Tag for bloodwork, including B12, electrolytes and iron. Your oncologist won't necessarily test for those. I was low in all of them at one point.
I don't see how the Covid vaccine or booster would cause any odd bloodwork. I just had my bivalent booster and flu shot yesterday. You do want to tell your scan technician if you've had any vaccines in the weeks prior to scans so the radiologist can be alerted to any possible temporary lymph node enlargement.
3. Frequency of bloodwork and scans. Before starting Tag, you should get baseline echocardiogram and EKG done and see a cardiologist. If your oncologist won't order these, then get a cardiologist who will and who will follow you. You'll get bloodwork monthly for the first year, and thereafter every 3 months with scans. Some people get scans every 4 or 6 months, it all depends on insurance coverage. Your first scan should be 4-6 weeks after starting Tag. Scans are usually CT scans, but my oncologist orders PET/CT scans every 3 months. I would not want to rely on Xrays in lieu of CT scans. I've never had a brain MRI, FYI.
I went for more than a year before my oncologist started ordering regular EKGs and echocardiograms, but now those are part of my Tagrisso regimen.
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Don't be scared of Tagrisso, it's so much easier than chemo and radiation. Every drug comes with potential side effects. If you get side effects that aren't tolerable/manageable, they can always reduce your dosage to 40 mg. It seems to work for many people.
I've been on 80 mg for 30 months and my side effects are nasal allergies, splitting nails, dry and frizzy hair, dry eyes, and occasional eczema flare-ups. All are manageable and I'm NED.
I am getting regular 3-month echocardiograms and am being followed by a cardiologist to catch any cardiac issues that may develop. Everything is normal now.
Best of luck with Tag!
- LouT, Justin1970 and LilyMir
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I haven't had lung surgery but did have major abdominal surgery, which took me 6 months to recover from. Have you seen your primary care doctor for bloodwork? I would check iron, B12 and electrolytes at a minimum. I was low in all of those at one point. Have you tried melatonin for sleep? I took that when I had trouble sleeping, but my oncologist had also given me a prescription for lorazepam in my chemo package. I no longer need a sleep aid.
Bottom line is that walking helped me recover, a little longer every day, and many days I had to push through. Best of luck to you.
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Wow, what great news! Congratulations!
- Justin1970, catlady91, LouT and 1 other
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I had pneumonitis for about a year after chest radiation. For me it wasn't painful, it did not need treatment and resolved on its own. But I know that people get their pneumonitis treated with steroids. Are you seeing a pulmonologist?
- LouT and Justin1970
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I have thought that air pollution was the cause of lung cancer in nonsmokers, and it seems that science is now confirming that.
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Hi Rosie, I am in San Diego too! I was also diagnosed at Stage 3 (3b to be precise), in October 2019. Who is your oncologist? I go to cCare in 4S Ranch and San Marcos, and my wonderful oncologist is Dr. Steven Eisenberg.
You don't say whether your biomarker testing revealed any genetic testing. I have an EGFR mutation that has caused my lung cancer. I've been through chemo and radiation and then started on a targeted therapy pill in March 2020. I have No Evidence of Disease and am coming up on my 3rd cancerversary.
When I went through chemo, part of the infusion process was a nice dose of IV Benadryl. I got nice naps out of that, and it was the best part of chemo day.
Research is giving us lots of options and hope these days for living with lung cancer. Hang on to that hope and learn as much as you can about our disease.
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Hi Susan, you've come to the right place. I'm one of a number of members who have had chemo, as well as radiation, before starting on Tagrisso. I've been on that for 30 months now with few side effects, have No Evidence of Disease and am coming up on my 3-year cancerversary.
Like you, I'm fortunate to have a very empathetic oncologist. It really matters to me that he is so caring and understanding.
Welcome to the group!
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This is a very good podcast about EGFR+ lung cancer featuring the always great Dr. David Carbone, courtesy of the Lung Cancer Foundation of America.
- Tom Galli and Rower Michelle
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Karen, it is inevitable that kids in school will get Covid, the flu and a bunch of other weird infections. My sister (who does not have cancer) got Covid last year from kids in the pre-school she is director of, despite all the cleaning and disinfecting--I don't think they wore masks anymore. She was fine but then she's healthy with no underlying conditions. She doesn't really understand why I still isolate, and I don't think that most healthy people can.
- Justin1970, LouT and ColleenRae
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I'm vaxxed and boosted and will be scheduling the new booster with my flu shot very soon because I'm 6 months out from my last booster.
My husband and I have never had Covid to our knowledge. We have strict safety practices. We only socialize indoors with a small group of friends and family who are vaxxed, boosted and test negative. If someone who visits is coming off a plane, the visit is outdoors only. I've been to one restaurant in the last year and it was outdoor dining. Our biggest disappointment was having to cancel our attendance at an annual NFL reunion last month because we'd be indoors with too many people whose status we don't know.
My biggest worry would be getting long Covid. I have fought hard to be healthy and am very risk-averse now. The thought of being in a crowd fills me with anxiety, and in fact my skin crawls when I have to go to Costco (even with a good mask).
- ChiMama, ColleenRae, LouT and 1 other
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This article discusses a new use for liquid biopsies found during the INSIGHT study. This could help determine how well immunotherapy alone might work for certain tumors, regardless of PD-L1 expression.
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I just had a mammogram and they asked me to come back for a diagnostic mammogram. I haven't had it done yet but sent them the images of this month's PET/CT scan to see if that would clarify their concern. I need to follow up with them. My oncologist told me if anything of concern comes back to come right in and we'll talk.
I've had a 6 mm nodule in my RUL for a long time now, and it's just been watched. It wasn't even called out on my last scan. Let's hope your wife's turns out to be this type of thing.
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The waiting is excruciating. You want to get going with treatment, but you absolutely have to wait for the biomarker test results to get the right treatment plan.
You can certainly take this time for a second opinion but ultimately you need to know your biomarker (if any). Your second opinion will--or should--tell you this.
It's very important to feel like you're a partner on your care team, it gives you a feeling of control where you have none now. You can eventually drive the bus once you get all the facts and a little knowledge. Your diagnosis isn't quite complete yet, so hang in there.
Cancer does change us, but how is up to you. I learned to have a lot of patience. While I was in treatment, I tried to stay away from conflict and annoyances, and today I still try to avoid negativity and worry. Not easy but it works for me.
- Justin1970, Laurel77 and LouT
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Everyone has give good advice. Has your mom had a new biopsy done (tissue or blood) to determine if a mutation is causing this progression? I would want to explore that as well as any clinical trials if your mom was agreeable. Hospital doctors refer people to hospice too quickly in my opinion.
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What great news! Very happy for you and your wife.
- LouT, Tom Galli and Justin1970
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Hi Chazprincess, when I was diagnosed almost 3 years ago, the most puzzling yet valuable information my primary care doctor gave me was that lung cancer isn't an automatic death sentence anymore. Like Michelle and Lou, I am also NED after having chemo and radiation and now on a daily targeted therapy pill.
Taking one hour or one day at a time as Michelle suggests is essential to get through this difficult time. You are not alone, and we will be here to support you throughout.
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I second everyone's suggestion for a second opinion. What concerns me is that they're considering immunotherapy before your biomarker test results are back. Immunotherapy may or may not be the right treatment.
I've heard patients complain of feeling like they're just a number in some large cancer centers. You need to feel like you're being heard, all your questions are answered and that your team cares about you. It really will make a difference to your frame of mind.
- Justin1970, Laurel77, LouT and 2 others
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I had the same experience as Tom, but after 7 months on Tagrisso I developed an annoying dry cough. It turned out to be nasal allergies/post-nasal drip caused by Tag, so I take Claritin daily.
I wonder whether your mom's cough could be caused by acid reflux. I also had that during and after chest radiation for a while.
Stage IV lung and Stage II esophagus PET scan tomorrow
in NSCLC GROUP
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I was on a keto/low-carb diet for most of 2019, until I was diagnosed. It wasn't that difficult because there are lots of options these days. I still have to watch carbs to keep my A1C in check.
Fasting 6 hours before a PET scan is standard, along with the no carb rule and no strenuous exercise. I alway schedule my PET scans first thing so I can get some coffee right after.
Good luck, Kamoto!