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Judy M2

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Posts posted by Judy M2

  1. I know how hard it is for caregivers to stand by and worry. The patient at least feels like something is being done when treatment starts.

    I hope your dad will get a port, it makes infusions so much easier. 

    Your dad's journey is just starting. Waiting will become part of your lives, and it can be intolerable. He'll have a lot going on in the next few weeks, so that will be a distraction. I hope any side effects from the triplet will be manageable. 

  2. I said this in another thread, but a second opinion with an EGFR expert is in order. In the past, the Canadian health system approved Tagrisso as adjuvant therapy provided the T790M mutation was present. All that evidently changed in 2018, when Tag was approved as first-line treatment with no T790M mutation required (see link below). I still see comments in Facebook groups where non-US folks must have T790M to qualify for Tag in their country. 

    I'm sure that the International Lung Cancer Survivorship Conference will discuss immunotherapy for EGFR+ lung cancer, it's a question that is continually asked in EGFR forums. 

    https://www.astrazeneca.ca/en/media/press-releases/2018/health-canada-approves-tagrisso---osimertinib--as-first-line-tre.html#

  3. June, other people are in your shoes. It's new, scary and the technical language is foreign to us laypeople. I've found that the more you can hear from experts, the knowledge starts to sink in. After watching many presentations, I have a working knowledge of terminology but admit that I still don't understand everything, especially about other mutations. 

    I'll be watching the conference. This will be my third year!

  4. Liquid biopsy isn't always definitive for biomarker testing because not all tumors shed DNA into the bloodstream. A tissue biopsy would be definitive though, so ask his doctor about that. The downside is that it takes a couple of weeks to get results back. Even if there is no targetable mutation, chemo, radiation and immunotherapy could all be options. So don't despair, your dad doesn't have a treatment plan yet. 

  5. Hi June, we all know what a shock it is to be diagnosed. I certainly was shocked when I was told I had Stage IIIB lung cancer in October 2019. 

    It's important to have your biomarker test results when your treatment plan is established. You may have a genetic mutation that can be treated with a targeted therapy drug. My mutation is EGFR Exon 19 deletion and I take a daily pill. There are many Stage IV patients who are doing well for a long time. I've had No Evidence of Disease since April 2021 and although I'm not cured, I am healthy. 

    So don't listen to Dr. Google and consider virtually attending LUNGevity's upcoming International Lung Cancer Survivorship Conference, where you can learn a lot in a short amount of time. 

    Let us know how things go. Hang in there and try not to get ahead of yourself. 

  6. Good for you, Kamoto. You may or may not get side effects. The best advice I can give you is to moisturize well. Tagrisso dries out skin, hair, nails and your eyes too. Tagrisso gave me nasal allergies, so I take Claritin daily. They say to drink lots of water but you'll want to watch your sodium/electrolytes if you do. Report all side effects (if you get them) to your oncologist. Consider taking it at night to eliminate daytime drowsiness or fatigue. 

    Tagrisso has been very good for me. Hope you get great results. 

  7. Hope, I was 66 when diagnosed with Stage IIIB adenocarcinoma in October 2019. I'm 69 now. I've been through chemo and radiation and am now on a targeted therapy and have No Evidence of Disease (NED). Your dad's biomarker testing will determine his treatment plan. The waiting is difficult but necessary. 

    If your dad is a member of the 9/11 survivor community (like I am), I encourage you to seek the benefits that are available to him. I can give you lots of information to start you off. He does not have to be a first responder. 

    Waiting isn't unusual during a lung cancer journey, unfortunately. The best you can do is take the time to become knowledgeable about our disease. This site, the GO2 Foundation and the American Lung Association are good places to start. Register for Lungevity's upcoming International Lung Cancer Survivorship Conference, where you'll get current information. And stay away from Dr. Google! 

  8. This is really good news, Sajid. Many people take Doxycycline for infections and also acne/rash caused by targeted therapy. The side effects you mention are common with targeted therapy and they can be mostly controlled with medication and diet. 

    I also have a small pericardial effusion that does not affect my O2. I just had an echocardiogram and everything is normal. 

    If you're on Facebook, you might get information on coping with side effects in this private group: 

    https://www.facebook.com/groups/targetedtherapylung/?ref=share

    Or post a question in that group. I'm sure you'll get some answers. Glad to hear about your wife's good scan. 

  9. GBJ, I've never had surgery for my Stage IIIB lung cancer that was diagnosed in October 2019. Instead, I had chemoradiation and am now on a targeted therapy with very good results. Immunotherapy would not work for me because of my EGFR mutation. 

    You can certainly ask your oncologist about the next line of treatment should you have progression in the future. I hope you don't get to that point for a long time. 

  10. Ale, I've had 6x carboplatin and taxol as the first leg of my treatment regime (along with radiation). I did not have Keytruda. For me, chemo wasn't as bad as you'd think. I did lose my hair--and eyelashes several times. If you decide to do this chemo, you may have some fatigue, but the radiation fatigue was much worse in my case. 

    People have gotten great results from Keytruda. I know you've been through the wringer already. I'd encourage you to give this next treatment plan a try. 

    I actually live my life like Tom suggests, one day at a time. It's really all anybody can do. 

  11. Kelvin, I don't think they followed protocol with your mom's infusion where she had an allergic reaction. My chemo nurse went by the book with dexamethasone and Benadryl. I had a Benadryl infusion every time before the chemo drugs and got a nice nap out of it. They should do the same with your mom. 

  12. Hi Jennifer and welcome. As Lou says, the biomarker results your mom will get from her liquid biopsy are essential for determining her next treatment plan. Just be aware that if those results show no actionable mutation, it would be wise to take a tissue biopsy and send that off for biomarker testing. Not all tumors shed enough DNA material into the bloodstream to be detected. Recent recommendations are to re-biopsy if possible at progression. 

    I just turned 69, was diagnosed in October 2019 at Stage IIIB with EGFR+ adenocarcinoma. I had chemo and radiation first, then started on a targeted therapy in March 2020. I've been NED since April 2021. No one has ever told me how long I have to live--because they don't know. 

    Part of your mom's biomarker testing will also reveal whether she is a candidate for immunotherapy. There are options for personalized treatment, so don't give up hope. 

  13. This Zoom presentation is happening today at 6:30 pm Eastern time about the evolving state of the science in EGFR+ lung cancer. Registration is at the link below. Copied from the Facebook post by the EGFR Resisters Lung Cancer Patient Group. 

    https://us06web.zoom.us/webinar/register/WN_SRJKLyP9R9qqTpQCFzPvZQ

    I will post the recording as soon as it's available. 

  14. Kamoto, what is your EGFR mutation? Mine is Exon 19 deletion. I've been on Tagrisso for 27 months (after chemo and radiation) and am NED. I don't know where they get this stuff about Tag being toxic after a year. Yes, eventually cancer finds a way around Tag, but you could be on it for years and by then they'll have developed a 4th generation drug. 

    If you're on Facebook, this private group has lots of information:

    https://www.facebook.com/groups/2098822473719352/?ref=share

    Everyone is different, and some people get longer results than others. I hope you get great results. 

  15. They typically put you on dexamethasone for one or two days before, the day of and the day after your first one or two chemo infusions until they know you're not allergic. Plus there is a Benadryl bag before the infusion starts. Hopefully this was a one-time reaction and she's feeling better now. They ought to be watching her closely next time. 

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