Stephanie2024
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Posts posted by Stephanie2024
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Thank you so much for your detailed response! My doctor is a general oncologist who may not see many cases of lung cancer, and I haven't had a chance to visit my oncologist who specializes in lungs. This recent one happens to be a full body PET CT, and I requested a full body PET CT in May because I had some pain near my knees (that scan didn't show any activity). The 1cm activity showed up on my leg on this PET CT when I don't have any pain. It's possible that it was there from the beginning. My bone metastasis are in many spots in pelvis and hip areas.
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Just a thought - I got the Xgeva injection (to treat bone mets) 4 hours before PET scan. Could that somehow have made the bones more active?
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Does anyone have experience with Alimta maintenance chemo while on Tagrisso?
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Thank you so much for your feedback! My oncologist said this is some progression. I have this new 1cm bone legion that was not on the PET in May (July's PET did not cover my legs). Does Tagrisso work more slowly on bone legions? Does chemo work for the bone legions? What's odd is that last July I experienced left hip pain, the PET scan that month did not show increased metabolic activity and then the pain subsided, and the recent PET shows much higher activity. I don't quite understand why the pain shows up on the PET scan two months later. I'm feeling dull pain in my sternum more consistently now, and I wonder if this will become another active spot.
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Karen,
Thank you for your comments! Does stable disease mean that there is no hypermetabolic activity on PET scan or does it mean no evidence of disease on the scan? For my PET scan in May, after 4 rounds of chemo and 3 months of Tagrisso, the scan still had some hypermetabolic activity, though much lower than February. I don't know if this was already a sign that Tagrisso wasn't working perfectly because there is still activity after 3 months. We called it stable and did not take any aggressive measures at the time. Then end-of-July PET scan showed mixed results, some areas better and some worse. Doctors recommended monitoring and sooner PET scan. That's why I just did another scan, 7 weeks after the last one. I don't know if this progression means that Tagrisso is no longer working and need to switch drugs or I need to stay on it and add another treatment. It sounds like most people have done much better on Tagrisso. What was your experience with Tagrisso?
I think the big decision right now is whether to continue with Tagrisso and add something or switch altogether to the new drug combination.
I didn't want to start chemo before traveling, so will plan for it next week. I'm going to MSK this Thursday for an appointment this Friday.
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Thank you! I hear that Amivantamab has very bad side effects.
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Update: After the mixed PET scan results from 7/29/24 and blood biopsy showing cfDNA of EGFR Exon 19 from 8/6/24, I chose to not jump into any immediate treatment but had a sooner PET scan done on 9/18/24. The result is noticeably worse, with metabolic activity up across the board in the lung and bones and new 1cm bone legion. I have been on Tagrisso since 2/8/24 and chemotherapy for the first three months. My doctor was surprised that progression happened so soon. I feel sad and panicked. Does this mean the tumor is resistant to Tagrisso? I'm meeting with a radiation oncologist next week. A lung cancer specialist had recommended Alimta after the July PET scan. My doctor is asking me to decide whether I want to start Alimta now. I also scheduled a trip to New York to visit a doctor at MSK. Any suggestions would be so appreciated!
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Thank you for the feedback! I'm having a lot of trouble sleeping, waking up before daylight and am feeling tired all day. Any suggestions?
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11 hours ago, edivebuddy said:
@Stephanie2024 did they do a saliva or blood genetic test of normal cells for you yet?
Yes, I did a blood genetic test which was negative.
You had genetic testing for inherited cancer and non-cancer health risks.
This type of genetic testing looks at the inherited DNA in genes found in all cells in your body (not just cancer cells). It may tell us if you have a gene change (also known as a pathogenic variant or mutation), which increases your chance of getting certain diseases or health problems, such as cancer.
The testing did not identify any gene changes that are known to increase cancer risk. At this time, the test results will not change your medical care.
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I haven't spoken to the doctors and am not sure how to interpret this report, other than I still have the mutation in the blood. You make a good point that perhaps even the molecules blocked by Osimertinib would show up in the blood, so having the mutation in the blood doesn't necessarily mean that Osimertinib isn't controlling the cancer. I am just feeling nervous about what's happening. Thank you!
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My latest Guardant360 liquid biopsy shows 10.1% CFDNA of EGFR Exon 19 deletion and 1% CFDNA of CHEK2 W114. Tumor Mutational Burden is 0.95 mut/Mb and Tumor Fraction of 7.4%. I have been taking Tagrisso for 6 months. I think my doctor said he would expect EGFR to not be present because Tagrisso is treating it. However the report came back with 10.1% EGFR mutation. What does that mean?
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Thank you everyone for your advice! This is such an amazing support group. I am a 46-year-old Chinese woman diagnosed with Stage IV Adenocarcinoma in January of 2024 with metastasis to brain and bone. I completed 4 cycles of chemo (Carboplatin/Alimta) February through April and have been taking Tagrisso. The May scans showed significant improvement, negative brain MRI and reduced activity all over. The August scans show stable condition but some areas are still lighting up on a PET scan, some better and some a little worse (lung and bones 2.5-4.0 SUV range) compared to the May scans. Radiation oncologist reviewed the images with me and suggested waiting longer to make radiation decisions because the SUV's weren't noticeably worse compared to the May scans. I also had a consult with a very experienced lung cancer medical oncologist and he recommended additional chemo of Alimta to try to achieve a negative scan. His rationale is that my EGFR mutation is already controlled by Tagrisso, so whatever is still lighting up must be the other minor mutations revealed by the liquid biopsy. He ordered a new liquid biopsy.
I have some questions for this group:
1. Is the expected condition after 6 months of chemo/Tagrisso a negative PET scan? If so, what's happening now means I have other problematic mutations lighting up the scan and thus we need to take action to treat those mutations.
2. Because my 6-month scans are not drastically better than my 3-month scans, is the benefit of Tagrisso maxed out meaning it can still maintain the status quo but not improving further.
3. Isn't it better to radiate the active areas early rather than waiting for it to become more active and possibly spreading to other areas?
4. Should I consider chemo? There are so many side effects to chemo, and I'm really hesitant to start it again. I also worry that chemo will weaken my body overall. If we need to add an additional treatment, I'm leaning toward radiation to achieve better results than what 4 rounds of chemo didn't achieve.
Thank you so much!
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Thank you so much for your response! This is super helpful! Do you think dull pain in certain spots are correlated with cancer activity?
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Tom,
My CEA in blood went up slightly from last month, and I think that correlates with higher cancer activity. Did you ever experience ups and downs in metabolic activity during treatment? Also the places that showed higher activity are places where I sometimes feel a dull pain. I wonder if that's the cancer activity in my bones causing the pain. Did you ever experience pain in places that had cancer activity?
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Just completed 6-month PET and MRI scans. Compared to 3 months ago, there are no new legions and tumor size is slightly smaller, but SUV is higher, and bone mets SUV are higher in some places and lower in others, relative to liver mean. I have been taking Tagrisso for 6 months and completed 4 rounds of chemo February through April. Does this mean that Tagrisso is not effective any more? Should I consider radiation for the spots with higher SUV?
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So appreciate your encouragement and feedback last time I posted! I'm a 46-year-old Chinese American woman with no smoking history, diagnosed with Stage IV lung cancer on 1/22/2024, started chemo and Tagrisso on 2/6/2024. I completed 4 rounds of chemo and continue to take Tagrisso and just did MRI and PET scans. Brain MRI showed the met is gone. Other MRIs show some abnormalities in my spinal cord and bones are showing improvement. My PET scan showed decreased but still metabolic activity (SUV) above 2.5 in two bone spots. Primary lung mass is now below SUV of 2. I was disappointed that there is still active cancer in my body after chemo and Tagrisso. I'm hoping that I wouldn't need radiation. My doctor said the scans are all good news, but it's very rare for someone in my stage to ever be cancer free.
I re-read Radical Remission about radically changing diets, to eliminate meat, dairy, refined carbs, sugar, leaving only organic fruits, vegetables, beans, seeds, whole grain. I didn't follow that during chemo because I needed nutrition to get through chemo. Now I really want to get some advice on diet.
A troublesome side effect I'm experiencing is diarrhea. Most days it's loose stool once a day, but sometimes it's frequent diarrhea, likely caused by certain foods. My worry is that my body isn't absorbing nutrients that I tried so hard to get down even though I don't have much of an appetite, and I would like to treat it naturally before starting to take Imodium all the time. Would so appreciate your advice!
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Thank you for your feedback last time! I finished four rounds of chemo and it’s been three months since I started treatment for Stage IV lung cancer (chemo and Tagrisso). I just completed MRI and PET scans. Brain MRI showed the met is gone. Other MRIs show some abnormalities in my spinal cord and bones are showing improvement. My PET scan showed decreased but still metabolic activity in lung and pelvis. Is this expected? I was disappointed that there is still active cancer in my body after chemo and hoping that I wouldn’t have to do radiation.
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Thank you for the suggestion for drug to boost my blood cells! I’ll discuss with my oncologist.
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9 hours ago, edivebuddy said:
Sorry you're dealing with this and so very young. Too young to be giving up while therapy is working. The addition of chemotherapy to tagrisso reduces the risk of recurrence by 38%. For tagrisso that's huge. You have a very good chance of managing this disease for a long time. especially if you can get it into full remission. Chemotherapy is doing that for you.
If you expect to have your blood numbers to be normal it's not realistic. The doctors are really good at figuring out your numbers and what they mean or if there's a problem. And if there is, stopping treatment is usually NOT the first or prudent choice.
I did 7 rounds of chemo. My blood numbers were NEVER in the normal ranges. Twice we had to delay my infusions to take care of problems but we continued. I achieved a full remission over 3 years ago. Stage IV. END Stage presentation with cutaneous metastasis. Additional metastasis' to the brain neck and liver. Plus stage 3 poorly differentiated squamous cell carcinoma of the head and neck just because the lung cancer wasn't bad enough.
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I am 46 year old Chinese female diagnosed with Stage IV lung cancer. I started chemotherapy and Tagrisso. So far I have done two rounds of chemo. My most recent brain MRI shows the brain mass shrinking from 6mm to 3mm. My lab metrics are all trending down, some dropping below normal ranges. I wonder if I should continue chemo therapy (2 more rounds remaining).
- Tom Galli and Livin Life
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Alimta maintenance with Tagrisso
in NSCLC GROUP
Posted
Has anyone been on Alimta maintenance while taking Tagrisso? I completed 4 cycles of Carboplatin/Alimta chemo last April and continued with Tagrisso. So far disease is “stable” but latest scan is showing higher metabolic activity across bone meta and primary lung though size has not changed. There may be one new spot but it’s possible that it was there before. One oncologist recommended adding Alimta maintenance every 4 weeks while continuing Tagrisso. Does anyone have experience with Alimta maintenance? How are the side effects? Does it help control the tumor activity when Tagrisso doesn’t seem to do the full job? Thank you!