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Hi! I'm Katy


Katy

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I'm 54 years old.  I teach 4th grade in a public school, and I also teach aerial yoga.  Both of those jobs are on hold for now, as in June I was diagnosed with Stage IV Non-Small-Cell lung cancer.  I never smoked, so this came as a complete and enormous shock.  I'm being treated in Boston at Dana-Farber;  everyone there is amazing and caring and smart.  Currently I'm getting chemo and immunotherapy, and I'm dealing with extreme fatigue for about a week after my treatments.  I'd love to hear from others about how they deal with that and other side effects, and I hope to make some connections with people who are experiencing some of the same things I am.   

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Hi Katy: Welcome to our site and hopefully you will find the answers you need. Could you please say  exactly what chemo and immunotherapy you are taking and describe in more details what other side effects if any you are having . Side effects vary from person to person and depend on regimen as well. I for one will be glad to share my experiences  should they apply.

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Hi Katy,

Welcome here.  I was diagnosed with Stage IV NSCLC in 2018 at the age of 51.  I was also a never smoker, as a result a nagging cough went on for months before I was properly diagnosed.  

As Gary said it’s helpful for us to know about your treatment plan so we can help out.  Fatigue is very common, a few things have helped me, walking (even if it’s only 10 minutes), acupuncture weekly, and Gi Gong Tai Chi.  I take a one hour nap every day around the same time too.  
I’ve learned to plan around the fatigue cycle and have slowly learn to accept that some days despite having a good night’s sleep, it ain’t going to happen today.  Give yourself permission to rest.  It was hard for me to get used to the idea of resting is healing and healthy.  
Glad to have you here. 
Michelle
 

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Welcome Katy,

Glad you found us.  There seem to be cases where people never smoked and it is hard to know why.  Could it be genetics, environmental, some other cause?  Regardless of the cause LC can be fought and there are many cases here of people who were advanced stages and have survived and are still here to share their victory.  You'll find great support here.

Lou

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Hi Katy,

  Welcome to LUNGevity!

   I'm also a Stage IV NSCLC Survivor and currently doing well at 5 1/2 years in.   I was 56 at the time of my diagnosis and despite having once been a smoker, I had quit several years ago and had several clean chest xrays, I really thought I was in the clear, but as my Oncologist told me, there is no way to really know if the smoking was the cause, or if it was from something else, like Radon which I later learned is quite high in my area, especially in the area where my childhood home was.  Nonetheless, Lung cancer can strike anyone and we need to continue to educate people on that so that people are aware that all it takes is lungs.    I had NO symptoms on warning, until I had a very sudden onset of Neuro changes which I first thought was a severe type of vertigo, it came on out of the blue and that's when my PCP send me for an urgent Head CT and they found a brain met.  I was immediatley hospitalized and went through a week of testing and ultimately learned I also had a Lung tumor and Pulmonary embolism, both of which were totally asymptomatic.  To this day, I still have no signs or symptoms of Lung Cancer, never had a cough, no breathing issues and no chest pain or discomfort, even when I had the PE, there was nothing.  I was VERY lucky that this was found before things progressed even further.  LC is a sneaky illness and can affect many without any symptoms, another reason it's often found at a late stage.  

   I also live in Massachusetts and have been to DF for consults and a second opinion, but chose to have my treatment and are closer to home and have done very well.  My original Oncologist who I adored, actually now works at the South Shore Branch of DF and I still keep in touch with her.  If anything serious ever came up, I would absolutely go see her for a second options and want her involved in any new treatment decisions.  She was the one who convinced me to on Immunotherpay, what it was brand new and has just been FDA approved.  I was actually the very first patient (Locally) to try Immunotherapy and am so grateful, because there is not doubt, it saved my life.  

   When I was dx'd back in 2015, we did not have the same treatment that you are on today, but I did have Chemo (Carbo and Alimta) and then eventually moved on to (Nivolumab) as my second line treatment and had excellent results, despite some side effects.    I did eventually have to stop the Nivo, but by that time my cancer was Stable and has been ever since and that was four years ago this month.   If I were starting all over today, I would very likely opt for the same treatment you are on now, and I sincerely HOPE you have excellent results.

   Fatigue was always one of the most difficult side effects for me, especially while on Immunotherapy,.   I still have it today and have had to learn that naps are my friend and that if I feel run down and tired, I must rest, otherwise I feel worse.  I do also have Fibromyalgia, which also complicates the fatigue, as it too come with pretty significant fatigue.   

    Nice to meet you and we will all look forward to hearing from you more -- I can tell you that based on my experience and knowing several LC patients who were on Immunotherpay, that the fatigue is quite common.    I wish you the very best and hope you will adapt to this side effect.  It's very good to know you are now expereinced any others.  One thing I would  mention is that for some folks Immunotherpay can also cause Hypothyroidism, and typically your thyroid levels will be monitored while in treatment.   This too can add to the fatigue and often can be alleviated with meds.   Cortisol levels (if low) are another factor, and those were things I was routinely screened for while on Nivo. 

   Please keep in touch and let us know how you are doing.    

 

      Lisa

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Hi Katy, We have a lot in common. I am a yoga teacher too. I was extremely busy and then I got my diagnosis. I am stage IV but doing well on immunotherapy. I did chemo for 4 months and the pet scan after chemo showed 85% improvement but it was hard to go through.  I am still waiting for my first NED pet scan which I hope will be my next one next month. I have gone back to teaching yoga classes online and that has really helped me to realize that even though I have NSCLC there is a lot more to life than that. I hope you get to get back to teaching yoga. I've done arial yoga. It was fun. Hang in there and know there is hope and help out there. Peace, light and great scans to everyone. Much love all. Claudia

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Hi Katy,

There are so many people here that have a wealth of knowledge.  I found this site shortly after being diagnosed myself and have learned so much.  Those statistics that you get from your first "google" are scary.  This site is full of inspiring stories of survivors and hope!  

I just finished chemo a couple of weeks ago.  I had a lot of trouble with fatigue as well.  I stopped trying to fight it and I actually slept for most of the 3rd and 4th day after chemo.  


 

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Hi Katy, welcome! I'm sorry to hear what you're going through; my mum was diagnosed with stage IIIB squamous cell non-small cell lung cancer. It was a huge shock, but my mum's medical team is fantastic and currently it appears that she's NED, but it needs to be confirmed the the radiologist specialist. Her oncologist said that on the PET scan no areas lit up. So fingers crossed that NED will be confirmed and the cancer won't come back.

There's been major advances in treating lung cancer despite the bleak things you read online (which I would avoid). Even stage 4 which previously was a death sentence, can now be treated and in some cases result in NED. There are people who have been living with stage 4 lung cancer for years and are still doing really well. I live in the UK, but the Dana Farber institute is one of the best hospitals in the world for treating cancer so you're in really good hands. My mum was also treated at one of the best hospitals specialising in cancer in the UK.

As long as you have a good medical team that believe in you and don't give up on you and a positive attitude, there's every reason to be optimistic for the future.There are so many treatments available. My mum is also having immunotherapy. She's about two or three months in and recently she got shingles and tooth pain and a mouth ulcer (possible side effects from the immunotherapy). Whilst those side effects aren't pleasant, she had a really bad time with the chemo. She stayed in bed all the time, had heart palpitations and low minerals. She also had a very bad skin reaction. She felt so faint and had such palpitations that she had to be taken to hospital. They found her magnesium and sodium levels were extremely low.

Whilst she had a crappy time, many people do with chemo, especially aggressive chemo. The side effects aren't pleasant and you'll feel shi##y for a while, but it gets better. On immunotherapy my mum is so much better! She's up and about and able to do everyday activities; when she was on chemo she stayed in bed all the time. I would tell my mum that "no pain, no gain" and even though the side effects are unpleasant, the chemo is killing the cancer. Also hospitals take side effects very seriously. They were very attentive with my mum. Even with the immunotherapy side-effects, they treat my mum as a priority and they asked her to come to the hospital when she rang them about her shingles and tooth. It wasn't anything urgent but I'm glad that she didn't have to wait for days or weeks to get an appointments. 

Stay positive. Best wishes from London.

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