Judy M2
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Posts posted by Judy M2
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Loss of appetite and diarrhea are common with chemo. Fatigue is common with both. Your mom may have the start of esophagitis, so be sure to let the radiation oncologist know. She may need pain medication. It's really important to eat and hydrate, whatever she can tolerate. I always recommend a palliative care specialist before starting radiation in case of esophagitis. I had a wicked case that took 5 months to heal, and my radiation oncologist was rather unhelpful.
- Justin1970, Tom Galli and LouT
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I'm sorry you're having such harsh side effects. I wonder why they aren't switching you to Tagrisso directly? Bear in mind that Tag can affect the liver too and can cause its own side effects. But from my own experience, Tag is much easier than chemo.
I agree with Lou that palliative care would be a good addition to your care team.
Take care.
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Back at my diagnosis in October 2019, SUV in my LLL tumor was originally 9.9, and the lymph nodes were 8.2.
Interestingly, after I had a bulk Teflon injection into my paralyzed left vocal cord, the SUV increased from 4.8 to 6.2.
I still have paramediastinal airspace opacity, probably from radiation. SUV is stable at 2.5.
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As @Minh asks, did you have biomarker testing done? Immunotherapy may not even be a choice for certain mutations.
I was diagnosed with inoperable Stage IIIB adenocarcinoma in October 2019. My oncologist threw the book at my 7 cm tumor and involved lymph nodes: chemo and radiation first, then a targeted therapy for my EGFR mutation. Chemo wasn't as bad as I'd feared, but radiation was rough. The good news is that all of the treatments worked, and I've been NED since April 2021.
Ask about your biomarker results before making any decisions. A second opinion wouldn't hurt either.
You're in Long Island. I don't know if you're a 9/11 survivor, but if you are, your lung cancer may have been caused by the toxic exposure. I am a survivor and can provide lots of info on this.
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Pneumonitis is also a side effect of my EGFR targeted therapy. But I had pneumonitis anyway for about a year after radiation, not from the targeted therapy. Mine did not require treatment and no longer shows up on scans.
I agree with Rikke, the Enhertu is worth a shot. Best of luck.
- LouT and Justin1970
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Walfredo, you've waited a long time not to have definite results yet, so it's no wonder you're anxious. I really hope you get answers soon. Take care.
- Tom Galli, walfredo2001 and LouT
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Get some Ensure or Boost in case food becomes unpalatable. I never liked smoothies myself, and to this day they remind me of being sick.
For radiation, it's helpful to consume lots of protein like eggs, peanut butter, fish/chicken/meat. I really liked Trader Joe's macaroni and cheese. Ice cream is good too.
For chemo, her chemo education will advise to stay away from uncooked vegetables and fruit that does not have a peel that can be removed, to avoid any potential Ecoli or other bacteria.
On top of all that, your mom should eat whatever she can tolerate. This may change from moment to moment. Don't worry about a healthy diet, the goal is to keep her weight up.
Best wishes to your mom.
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Lizzy, I'm very sorry you've reached this point. I hope that you get the best hospice care possible. Wishing you peace and comfort.
- LouT, Roz and Justin1970
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Cornelia, all I can add to Tom's comment is to try to get a palliative care doctor on your team before you start chemo and radiation. I wish I had done that. Radiation gave me a wicked case of esophagitis due to the location of lymph nodes that were treated. Palliative care can help minimize any pain or nausea you might experience. The good news is that both chemo and radiation are very effective. Hoping all goes well for you.
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It's unlikely that, without treatment, you would go for 3+ years and not have worsening symptoms of lung cancer. I understand the worry, but try not to get ahead of yourself. Even after a diagnosis, it can take weeks for a treatment plan to be developed, and that waiting period can test one's patience. I really hope you get a clear report.
- LouT, Tom Galli and WalkingHorse
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Please insist on a chest Xray or CT scan to determine whether you have something to be concerned about. Without one, it's just a guessing game.
Your persistent cough and hoarseness could be acid reflux or even allergies, both of which are easily treatable.
I hope you'll get a scan or Xray soon. This is the first step for all of us and is the only way to diagnose lung cancer, if you have it. And of you don't have it, your mind will be put at ease.
- LouT, Tom Galli and WalkingHorse
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First, I recommend joining the Tagrisso (osimertinib) Patients & Caregivers Group on Facebook:
https://www.facebook.com/groups/2098822473719352/?ref=share
The members have discussed all of the Tagrisso side effects, including GI. Some people find that dairy gives them problems. I have Tagrisso side effects other than GI: splitting nails, nasal allergies and itchy rash that comes and goes. All are manageable.
You'll also find lots of folks who are Stage IV and living life. I'm Stage IIIB, diagnosed in October 2019. Had chemo and radiation first before starting Tag in March 2020. I've had No Evidence of Disease since April 2021.
I had those dire thoughts when I was first diagnosed too. I've learned to live one day at a time, especially since no one can ever know how long their life will be. I'm grateful for every day.
- Justin1970, Tom Galli, WalkingHorse and 1 other
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You'll need biomarker testing to confirm if you have an actionable mutation like EGFR.
I've had chemo and radiation before going on the targeted therapy drug Tagrisso for my Stage IIIB EGFR+ NSCLC. Tagrisso is much easier. I've been on Tag for 26 months and have been NED since April 2021. My side effects are manageable: splitting nails, nasal allergies and itchy rash that comes and goes.
There are many people living for years on Tagrisso. Your doctor seems to be giving you worst-case information. Although it's true that the cancer cells can eventually figure a way to progress, everyone is different and you don't know the results you'll get unless you try.
This private Facebook group, Tagrisso (osimertinib) Patients & Caregivers Group, is a great source of information and advice about Tagrisso:
https://www.facebook.com/groups/2098822473719352/?ref=share
I don't have experience with immunotherapy, so I can't speak to that.
- LouT, BridgetO, Justin1970 and 1 other
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Kamoto, glad your biopsy was uneventful. My suggestion for your shortness of breath is to ask your pulmonologist for an inhaler. It really helped me when I had SoB. These days, on a targeted therapy, my SoB is rare.
- LouT, WalkingHorse and Justin1970
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Before giving up, I would get a second--and third if necessary--opinion from a thoracic oncologist. I'm Stage IIIB, diagnosed at age 66 in October 2019. I've had chemo, radiation and am on a targeted therapy drug for my EGFR mutation.
Chemo isn't as terrible as you might think. For me, radiation side effects were rough because the lymph nodes being treated were right on top of my esophagus. But those side effects were temporary and the treatments were highly effective on their own.
Side effects can be managed by a variety of means, including palliative care.
Ultimately the choice is your mother's, but it's vital to get all the information possible before making a decision to give up. Learn as much as you can from this site and the professionals.
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I also did acupuncture for radiation side effects. It was very relaxing.
- jack14 and Justin1970
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Kelvin, targeted therapy such as Tagrisso is given for as long as it works. (I'm on it for 26 months now.) However, I understand that as adjuvant therapy after surgery for early stages, it is given for 3 years. However, they may change the guidance in coming years. Tagrisso has only recently been approved as early stage adjuvant therapy, and there isn't much experience yet in that patient population.
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Hi Phil, I was diagnosed at Stage IIIB adenocarcinoma in October 2019. My tumor was also in my lower left lung with a few lymph nodes affected. I had 6x chemo (carboplatin and taxol) and 30x radiation before starting a targeted therapy. For me, radiation was harder than chemo.
My oncologist insisted on a port, so I had that procedure before starting chemo. I still have it today and go for regular port flushes.
Chemo infusions are boring. Bring a blanket, reading material, ear buds, a beverage/water and snacks. I did a lot of e-book reading and napping during my infusions.
Like Tom says, fill all your chemo prescriptions before starting, you never know if or when you'll need them. Also get some Miralax in case you experience constipation, which is very common.
Although I was told I wouldn't lose my hair, I did and it took about a year for it to grow back. I also lost my eyelashes, and today they're still fragile.
All my treatments have been successful, and I've had No Evidence of Disease since April 2021. I hope you get good results from your treatment.
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Kevin, so sorry that your wife is going through this, and I hope she recovers quickly. I know that some people on my EGFR targeted therapy have to go off it for one reason or another and then resume. Be sure to let her oncologist know about her Covid treatments so they can determine when to restart.