Judy M2
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Posts posted by Judy M2
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Good luck, Justin! I once had to wait 2 weeks for my results. My usual wait is one week.
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The irony is that CT scans are not expensive. PET scans are. If your oncologist isn't successful with the appeal and you can afford it, it is possible to pay out of pocket. I had a chest CT scan done a couple of years ago for $125.
- Justin1970, Tom Galli and LouT
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AZandMe.com is the manufacturer's financial assistance website. Your oncologist should be able to help you apply. Eligibility is based on income and you have to reapply yearly. I'm retired and on Medicare and have been eligible for the last 2 years. Many working folks get their Tag completely covered by their insurance.
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I don't personally have experience with fluid but I know of others on targeted therapies who need to have fluid drained periodically. It can be annoying and uncomfortable. The good news is that if Gefitinib isn't effective, there are other targeted therapies that can be used. Fingers crossed for her next scan.
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You should "attend" the LUNGevity 2022 International Lung Cancer Survivorship Conference in July. I'm sure there will be a discussion about immunotherapy and EGFR lung cancer. It has had disappointing results in the past but I know that researchers are giving it another look.
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EGFR Exon 19 deletion typically does not respond well to immunotherapy. Targeted therapy is the standard of care. Some people start out with earlier generation drugs and get a long time with them.
But I believe that treatment can differ in Canada. You might want to ask your mom's oncologist why a targeted therapy like Tagrisso (osimertinib) isn't being considered.
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Lily, can they give you Neulasta? That's often used when WBC/neutrophils are low.
I also had carbo (and taxol) and lost my hair but otherwise was manageable.
Hope your new oncologist is a better fit.
- LilyMir, LouT, Justin1970 and 1 other
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Yes, radiation is rough when it hits your esophagus. My esophagitis started about 2 weeks into the 30x (5 week) radiation schedule. Mine was severe and took 5 months to heal. Hopefully yours won't be that bad! I do recommend a palliative care doctor to help with the inevitable pain. Some people see swallowing/speech therapists with good results.
I had the same chemo combo as you. I didn't think it was too terrible. Imfinzi (immunotherapy) wasn't a treatment option for me due to my EGFR Exon 19 deletion biomarker. I started on Tagrisso after chemo and radiation were completed and have now been on it for 27 months. NED since April 2021.
Watch out for dehydration if you're having trouble swallowing. You can get hydration at your chemo center if necessary. I went 3x a week for a couple of months.
I hope you get through treatments without too much discomfort. It does get better with time.
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Jill, one thing I found very helpful during treatments was a Caring Bridge site. Just one place where you can inform people about how you're doing. It takes a little effort to set up but once that's done, updates are easy. I haven't had anything to write about in more than a year now because I'm back to good health.
- Justin1970, LouT, Pstar and 2 others
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Hi Jill, I'm sorry about your family history and your need to be here. I hope your doctor will order biomarker testing on your biopsied tissue. Best of luck with the biopsy.
- LouT and Justin1970
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Great! There are also a couple of other groups that I can list:
Targeted Therapy Group: https://www.facebook.com/groups/targetedtherapylung/?ref=share
EGFR Group: https://www.facebook.com/groups/EGFRlung/?ref=share
EGFR Resisters: https://www.facebook.com/groups/EGFRResisters/?ref=share
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Congrats! Great news.
- LouT, Susan Cornett, Justin1970 and 1 other
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Great news! I'm on Tag for 27 months now and am NED (No Evidence of Disease). Hope your mom gets there too.
If you're on Facebook, you can gets lots of information from this private group.
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Great news. Congratulations!
- LouT and Justin1970
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Tagrisso is used first line for Stage IV patients. It's not so clear for Stage III, and especially in Canada. My oncologist threw everything at my Stage IIIB cancer: chemo, radiation and then Tagrisso. Some people can get surgery at Stage III and then go on Tagrisso. Some only get chemo, some only radiation. It all depends on where the cancer is.
I know that Canada has different criteria for prescribing Tagrisso, so it may not be possible for your mom to take it now at Stage IIIB.
- LouT, Tom Galli and Justin1970
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Just bear in mind that mutations can change over time. She may be EGFR Exon 19 today but a different or additional mutation may appear if there is progression down the road. At that point, another biopsy would be desirable.
- Justin1970, LouT and Tom Galli
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Looks like your mom's mutation is EGFR Exon 19 deletion, which is what I have. That is considered good news. Tagrisso (osimertinib) may be in her future. It is giving lots of folks a good quality of life.
- DMaddox, Justin1970, Tom Galli and 1 other
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Hi Izumi, I'm also a Tagrisso taker. I was diagnosed in October 2019 at Stage IIIB. I hope you're doing well and that your side effects are minimal.
Below are links to a couple of private Facebook groups that I've found very helpful. We discuss Tagrisso side effects and tips, and the EGFR Resisters are very involved with research.
https://www.facebook.com/groups/2098822473719352/?ref=share
https://www.facebook.com/groups/EGFRResisters/?ref=share
If you have any questions for us, please ask.
- LouT, Justin1970 and Tom Galli
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Excellent! That's great news.
- Justin1970 and Pstar
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Justin, I'm sorry I'm late to this discussion. It sounds to me like your swallowing difficulty was related to the esophagitis. Some people see swallowing therapists for this. As far as I know, they usually practice in hospitals (at least here with n the U. S.).
I also have scarring in my lungs from radiation. I had an endoscopy a couple of months after radiation ended, and although it showed that my esophagus had healed with no scarring, I still had symptoms. I think it just takes time, and the acid reflux should also heal. You might want to request an endoscopy if you're still bothered by symptoms.
- LouT and Justin1970
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Hi Bill, welcome to the group. Are you familiar with the Exon 20 Facebook group below? You might find someone with experience there. Although I have an EGFR mutation, mine is Exon 19 deletion.
Egfr deletion exon 19 but getting immunotherepy
in EGFR
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Your mom should get a second opinion with an EGFR lung cancer specialist to confirm this is the right treatment plan. Even if it's a virtual consult. I'm not sure if the Dana Farber Chen-Huang Center for EGFR Mutant Lung Cancers in Boston, MA is still doing virtual consults for second opinions.
Having said that, I don't know how the Canadian health system works and whether a second opinion is an option for you.