Mom diagnosed with stage 3b

[Kelvin4426]

Hi guys so my mom's first week is over for chemo and radiation and her symptoms were mostly tiredness and diarrhea and some loss of appitite and now she's saying she thinks she had acid reflux saying it kind of hurts. Are all these symptoms common? 

[Judy M2]

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.

[Kelvin4426]

32 minutes ago, Judy M2 said:

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.

Sounds goodnshe has a meeting with him tomorrow I told her to let him know every symptom

[Kelvin4426]

Hey guys so my mom got her biomarker results and am not sure what it means. Tier 1: variants of strong clinical significance

 

I have posted a file for u guys to refer to

 

 

[Judy M2]

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. 

[Kelvin4426]

13 minutes ago, Judy M2 said:

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. 

Thanks yea I saw egfr and was happy but didn't understand what the tiers mean. And yea her oncologist said that they will use that if her cancer came back in the future  seems like they are certain the first line treatment will work and that biomarkers stuff will be in the future

[Judy M2]

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. 

[Kelvin4426]

Just now, Judy M2 said:

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. 

If she's positive with this mutation then y do doctors not use this type of treatment for the first line if it can change at any point

[Judy M2]

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. 

[BridgetO]

Here's where you can find some info about targeted therapy for EFGR mutations: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/targeted-therapy.

[Kelvin4426]

Hey guys wondering have you guys have any chest infection my mom got it today they're doing an xray kn ger right now just wanna know if it's dangerous or not

[EMandM]

Hi Kelvin, I was diagnosed December 2021 and underwent 4 rounds of chemo (starting with Cisplatin and pemetrexed) alongside 32 rounds of radio over 6 weeks. Interim results suggest things are definitely shrinking! But I have had a number of chest infections along the way… I have 2 small children, who are constantly bringing germs into the house (can’t say they never give me anything 😂 !?) Some were viral, which just involved waiting it out, others were bacterial, for which I was given a whole host of antibiotics (mostly oral, but once IV). While a bit of a pain, it’s basically been ok.

Also-I just wanted to say… I noticed a while ago you asked whether a cough going away was a good sign. While it almost certainly is, don’t be tempted to think the opposite (that the cough continuing or worsening is bad sign). I didn’t have any lung symptoms when diagnosed, but I developed a horrible cough with every round of chemo. Plus radio to the chest also causes an inflammatory response, so can also cause cough. So just wanted to offer a bit of reassurance there.

I hope your mum recovers from her infection soon! 

Gini x

[Kelvin4426]

3 hours ago, EMandM said:

Hi Kelvin, I was diagnosed December 2021 and underwent 4 rounds of chemo (starting with Cisplatin and pemetrexed) alongside 32 rounds of radio over 6 weeks. Interim results suggest things are definitely shrinking! But I have had a number of chest infections along the way… I have 2 small children, who are constantly bringing germs into the house (can’t say they never give me anything 😂 !?) Some were viral, which just involved waiting it out, others were bacterial, for which I was given a whole host of antibiotics (mostly oral, but once IV). While a bit of a pain, it’s basically been ok.

Also-I just wanted to say… I noticed a while ago you asked whether a cough going away was a good sign. While it almost certainly is, don’t be tempted to think the opposite (that the cough continuing or worsening is bad sign). I didn’t have any lung symptoms when diagnosed, but I developed a horrible cough with every round of chemo. Plus radio to the chest also causes an inflammatory response, so can also cause cough. So just wanted to offer a bit of reassurance there.

I hope your mum recovers from her infection soon! 

Gini x

Hi thank u so much for your reply. Hea my mom had a chest infection which req antibiotics maybe she got it from my son? And also thanks for the coughing part my mom's cough seems a lot better never hear it when I visit her which I used to alway hear it but she also said that the doctors say it will get worse. May ibask what stage were u diagnosed and how r u now?

[Kelvin4426]

Hey guys so my mom talked to her doctor and said that her next chemo will be her last and will be put in immunotherepy once a month for a year. She's finished 1 cycle of chemo and then starting her second next week is this normal to be stopping after the 2nd and starting immunotherepy?

[Cornelia]

JUDY, so far I have had 10 rounds of radiation with 20 more to go and tomorrow is my 3rd Chemo- using Carbo and Taxol. So far the chemo hasn't been bad but the radiation is making it hard to swallow with some pain here and there - thinking it will get worse. They are doing my 4CM lung mass and a lymph node in between the lungs(mediastinal). My stage is either 3A or B. I already bought myself 2 wigs and some caps so I am ready for the hair loss. I checked out the cold caps but they seem expensive - they say at least 50% less hair loss.

Has anyone taken Imfinzi after their chemo and rad and did it work well? I am hoping for a Lobectomy after all this..

[Judy M2]

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. 

[Kelvin4426]

18 minutes ago, Judy M2 said:

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. 

Hey just curious so my mom had egfr expn deletion but still going on immunotheepy is there a reason y immunotherepy wasn't a option

[Judy M2]

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. 

[Kelvin4426]

10 minutes ago, Judy M2 said:

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. 

O interesting what they told me is that they will use the targeted therepy if the cancer ever comes back. But I never knew immunotherepy isn't effective if ur egfr positive ill have my mom ask them

[Judy M2]

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.