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Introducing myself new to the group and asking for help (Stage 3C Squamous NSCLC)


Lilred

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Hello, I am new to the group and and hoping to learn from others and become a better caregiver to my Mom. I wasn't sure how or where to post this, so my apologies if I did not follow the right path and please redirect me if I need to post this somewhere else.

 

My mom  is 79 years old and was recently diagnosed with Stage 3C Squamous Cell NSCLC.  We are waiting on the results of her biomarker profile (expected in the next week or so), thus, she has not started any treatment yet.  I am very concerned and anxious as the process of even getting to a treatment plan seems so long and her health has declined significantly in just the past 30 days.  My mom was a very independent and active widower, living on her own, doing all of her own housekeeping, yardwork, etc. up until last June when she broke her ankle.  After she recovered from the broken ankle, she started losing weight and her COPD seemed to worsen, but my mother refused to seek medical care.  She finally agreed to see her doctor after the holidays.  By the time she saw her doctor in mid-January, her weight had dropped from 125 pounds to 106 pounds, her breathing was much more labored, and the coughing was very bad.  The doctor ordered blood work and a CT, which revealed a large (5.8X7.2 CM) mass in right lung.  From the follow up tests we know she has mets in regional lymph nodes (subclavicular), and we are waiting on the results of the brain MRI she had done last week to rule out brain mets.  In the month or so since the CT, her condition has declined rapidly.  She is now having a great deal of pain (back and shoulder primarily, but frequently all over body pain), has frequent nausea with occasional vomiting, is very tired, has little to no appetite, loss of taste, and bouts of anxiety.  She is sleeping on and off throughout the day, and athough she does try to continue doing daily tasks, it is very exhausting for her. The mornings are the hardest time for her, but she usually has a few good hours late in the afternoon.  I am so worried that by the time we get a treatment plan, she will be too weak to undergo treatment.  She also has underlying heart issues and we have been juggling her medications to manage low blood pressure and tachycardia (she was previously being treated for high blood pressure).  

Because we have only done a consult with the radiation oncologist (the medical oncologist consultation is scheduled for March 10 after the biomarker tests are expected), we really have no one managing her care right now, other than a very kind physician's assistant, who while trying her best, is not experienced in dealing with lung cancer.  I was able to get her some anxiety medication that she takes as needed, but she does not like to take medications as a rule and thus far has been resistant to trying any pain medications other than Tylenol (she cannot take ibuprofen since she is on a blood thinner).  Her pain is definitely getting worse and more frequent and she seems to get a little weaker each day.  She has had a few scares where she lost her breath and momentarily cannot breathe (her lung function test indicated she has a little less than 50% lung function), but she did not qualify for supplemental oxygen based on Medicaid parameters (her PA hopes the oncologist will be able to help get her qualified for supplemental oxygen).

I would really appreciate any advice this group could offer on how I can help and support my mom over the next few weeks while we wait for a treatment plan.  I was also hoping to hear from others that might have been diagnosed at stage and age range and whether or not they were able to receive treatment, what things my mom should be considering when a treatment plan is given, etc.  Thank you in advance for sharing your thoughts and suggestions.  

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Lilred,

I'm so sorry to hear about your mother's issues, but glad that you found us.  You've packed a lot into your introduction and I'll try and respond to much of it here.  I'm also sure you'll be hearing from others here soon.  Let me start by saying that treatment for LC (lung cancer) has come further in the last five years than in the prior fifty.  Also...more of us are surviving longer than at any other time in our history, many for years past their diagnosis.  A member wrote "10 Steps to Surviving Lung Cancer; by a Survivor" and that can be found here.

When any of us heard our diagnosis it was a time of fear, uncertainty and disbelief, so neither you nor your mom are alone in those feelings.  It seems like your mom's progression was significant before a diagnosis and while it may seem that the process takes time (and it does) it is important for the medical team to gather as much information regarding the cancer, type, metastasis, genetic involvement and your mother's general health before they can come up with the most appropriate treatment plan for her.  I'm not sure where you live, but are you near a major medical facility that has specialization in cancer and/or lung cancer?  This can be a good thing to be at a teaching or research hospital.  In my case my medical oncologist took the lead over my surgeon, pulmonologist, and primary care doctor.   This way I have one specialist that centralizes all the resources I need for my treatment.  You can have a talk with your mom's oncologist and ensure that someone is looking over the whole team.  A PA can be fine for an appointment or a test, but not to coordinate what may be a complex and critical treatment plan, especially when they are not even versed in LC treatment.  Once you do speak to your medical oncologist you can even ask what can be done to speed things up or find some relief for your mom's symptoms (palliative care approach to treatment) in the meantime.  But, I have heard that the biomarker testings do take time.

You will hear from others soon and I encourage you to listen to what they have to share, but we are a group of survivors here and we will tell you that there is hope for your mom.  

Lou
 

 

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It does take time for biomarker results to come in, and waiting for a treatment plan to be created is excruciating, especially if there is a high symptom burden like your mom has. 

If I were in your mom's shoes, I would get a referral to a pulmonologist (if she doesn't already have one for COPD). The pulmonologist can prescribe something (inhaler or nebulizer) to help her breathing. I would also get a palliative care specialist on the team now rather than waiting for any treatment side effects. 

You can buy canned oxygen at Walmart or Amazon without a prescription. This might be a good option temporarily. 

Sometimes if there is a high symptom burden, a medical oncologist will start chemo while waiting for biomarker testing results to come in. You may want to ask the oncologist if this is possible, but they would want to see your mom and assess her health and tolerance first. You may have to advocate for your mom to get an earlier appointment. 

One thing I learned during and after treatments is that medications are necessary, no matter how much you don't like to use them. At one point I had my own drugstore. Today I only take a targeted therapy drug (and a statin) and don't need pain meds. 

I was diagnosed in October 2019 at age 66 with Stage IIIB adenocarcinoma. I had chemo and radiation and then started a targeted therapy drug in March 2020 for my EGFR gene mutation. I had gradual improvement for more than a year and finally had No Evidence of Disease (NED) in April 2021. 

Sending you both good wishes. 

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4 hours ago, Judy M2 said:

It does take time for biomarker results to come in, and waiting for a treatment plan to be created is excruciating, especially if there is a high symptom burden like your mom has. 

If I were in your mom's shoes, I would get a referral to a pulmonologist (if she doesn't already have one for COPD). The pulmonologist can prescribe something (inhaler or nebulizer) to help her breathing. I would also get a palliative care specialist on the team now rather than waiting for any treatment side effects. 

You can buy canned oxygen at Walmart or Amazon without a prescription. This might be a good option temporarily. 

Sometimes if there is a high symptom burden, a medical oncologist will start chemo while waiting for biomarker testing results to come in. You may want to ask the oncologist if this is possible, but they would want to see your mom and assess her health and tolerance first. You may have to advocate for your mom to get an earlier appointment. 

One thing I learned during and after treatments is that medications are necessary, no matter how much you don't like to use them. At one point I had my own drugstore. Today I only take a targeted therapy drug (and a statin) and don't need pain meds. 

I was diagnosed in October 2019 at age 66 with Stage IIIB adenocarcinoma. I had chemo and radiation and then started a targeted therapy drug in March 2020 for my EGFR gene mutation. I had gradual improvement for more than a year and finally had No Evidence of Disease (NED) in April 2021. 

Sending you both good wishes. 

Hi Judy,

Congratulations!  I have been searching around to see some results from someone on a targeted therapy as I am starting on one next week and I was so happy to see your post.  I don't really know what to expect and am a little scared, but am awed at the medical miracles and see how much help you received and that  helps me a lot!  Thanks for posting that and please know that it made a huge difference in my life to see your positive results.  May they continueon and may you enjoy many good times!!!  

All  best wishes to you!!

Kaaren

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Thanks, @Kaaren. For many of us targeted therapy is a game-changer. You may or may not get side effects. I'm on Tagrisso and my side effects are manageable and come and go. There are private Facebook groups tailored to the popular different targeted therapies. You can either search FB on your own or let us know which targeted therapy you'll be on. 

If you have one of the mutations driving NSCLC, the link to the section on this site is here:

https://forums.lungevity.org/forum/15-nsclc-group/

I hope targeted therapy is very effective for you! 

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Lilred,

First and foremost, move heaven and earth to get your mom supplemental oxygen. A PFT at 50% ought to qualify given your mom's age, COPD, and use of blood thinners for heart or circulatory system problems. Push her PA hard then call Medicare. You indicated Medicaid but isn't your mom eligible for Medicare? If she is receiving Social Security, then she ought to have at least part A coverage. If she has part B coverage, then doctors are covered as is supplemental home use medical equipment (oxygen concentrator).

I was diagnosed stage IIIB at age 53 but I progressed to stage IV after surgery. I've had every form of lung cancer treatment but immunotherapy and yet have survived now 18 years after diagnosis. True, I was younger than your mom but there have been many advances in targeted therapy and immunotherapy in the last 5 years. Immunotherapy in particular can be very effective. Let's hope the molecular testing points to her suitability.

Welcome here!

Stay the course.

Tom

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Lilread,

I add my comments to Tom's-- that low O2 level, plus the pain and coughing means she needs to be seen immediately, if not at a pulmonologist's office, then at the Emergency Department. 

Hang in, but don't hold back on acting when something worries you. 

Karen 

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