Hello Everyone!

[emmer]

Hello everyone! My name is AJ and I'm 37 years old. At the end of last year, I had a CT scan for kidney stones which showed a nodule in my lung. Looking back at past scans, they noticed it showed back to 2019, but was growing progressively larger, so it was concerning. I saw pulmonology who was concerned but didn't think it was cancer because of my age. He wanted to rule out cancer so when it kept showing up on kidney stone scans, I could explain what it was, but on March 15, 2024, I got the news no one wants to hear - cancer.  Mucinous adenocarcinoma they staged it at Stage Ib. After a bunch of red tape, I went to Cleveland Clinic to have a lobectomy of the 2.2 cm mass. Surgery was June 6, 2024 and in surgery they found it had spread to the lymph nodes and to the pleural lining, making it stage IIIa instead of Ib. Fortunately, biomarker testing showed I was ALK+ so I could go onto targeted therapy and I started alectinib the end of July. Since then, I've been dealing with the side effects and trying to keep a life of normalcy despite what life throws at me.

[edivebuddy]

Sorry you are going through this and at such a young age too.  You can definitely lead a normal life. I can't drive because of my brain tumors and subsequent treatments.  But I can do just about everything else that doesn't require peripheral vision.  I'm 4b for over 4 years now ans still enjoying life.

Some may be able to offer advice on side effect if you can provide some details. 

Alectinib is mm metabolized  by  CYP3A4 so it's important not to take any supplements or drugs without going over then with the oncologist first. 

https://www.consumerlab.com/answers/grapefruit-juice-supplements-cyp3a4-enzyme/supplements-cyp3a4-enzyme/

[emmer]

My biggest complaint as far as side effects go is joint/muscle pain. It's pretty significant and doesn't go away even with pain management.  I just today got permission from the doctor to go down to 300 mg twice daily instead of the 600 mg twice daily. I'm really hoping that is effective because otherwise my only alternative is to start looking at opioids to deal with the pain and I'm not a fan of that.

[edivebuddy]

What types of treatment have you tried so far?

Ive had myalgia from keytruda.  In both thighs right above the knees.  It was treated  with diclofenac patches. Not 100% controlled but I don't notice it much any more. 

[LouT]

Emmer,

Welcome to our forums.  Sorry you need to be here, but glad that you found us.  Let me repeat what Edivebuddy said, you have a good shot at a long, and productive life.  Lung cancer is no longer the automatic death sentence that it used to be.  More advances have been made in the past 5 years than the previous 60 and people are surviving longer than ever.

Like you, my LC was discovered on a kidney stone x-ray.  I also had a lobectomy (RLL) but there was no additional spread.  In this way, you and I are/were lucky; most people only discover they have this disease once symptoms become apparent and chronic.  Early detection does a lot to a better prognosis and outcome.  So please stay positive.  I do want to share some information with you, please see the notes below:

1. There is a blog written by one of our leading survivors titles "10 Step to Surviving Lung Cancer; From a Survivor".  This person was diagnosed at Stage 3 then 4.  Twenty years later he was considered "cured".  His knowledge from experience is a good tool for you going forward.  That article can be found here.
2. We have a number of forums covering specific topics.  Please take some time to look around and read the stories of other survivors you'll see others with similar stage diagnosis who are enjoying their lives years after their treatment.  We also have forums for specific mutations and one for ALK+.  You can find it on this page.
3. Whenever there are unwanted side-effects we advise that you speak with your medical team lead and determine what can be done to lessen them.  Many who have had chemo/immuno therapy have also found that adding a "palliative care" specialist to the team is helpful in reducing the side effects of treatment.  Please don't confuse "palliative care" with hospice.  Some folks do and they are incorrect.  Anyway, you may decide to add someone to your team in order to get through treatments with less discomfort.

My diagnosis happened early 2019 and my surgery in May of that year.  It took a bit of work to get myself back to an active life but with the support of the folks here at Lungevity, my family, and faith I made it back.  I do everything I could do before (6 workouts a week with weights and 4-5 miles/day) and have decided to live my life fully moving forward.  To day (at least as of last August) all my scans have been NED (no evidence of disease).  So, you see there is a lot to hope for in this situation and I hope you also have the support to do just that.  

Lou

[Livin Life]

Want to send support, emmer!  I am monitored at Cleveland Clinic as well because I've already had providers there for autoimmune issues. I'm not diagnosed with lung cancer though have several nodules they are watching.  You are in good hands. I think edive and Lou have offered helpful info.  I agree on letting your docs, or continuing to communicate to docs, about your pain.  It is important this is manageable....