Jump to content

Hello


DAC

Recommended Posts

Good Day,

My name is Delia,  I am 69 for next 5 days.  I'm married to a very kind man, we are each other's caretakers.  I am a mother, a grandmother and a great grandmother.  I retired from a career in Engineering and started a new career as a graphic and web designer at the age of 60.  At 65 I taught myself to play to cello and my music is my prayer.  I also enjoy gardening, reading and laughing at my own bad jokes.

I joined this forum because sometimes I feel the need of a safe place to communicate what my mind and body are going through.  It is difficult for me to communicate how cancer affects me  to my loved ones, they either feel the need to fix things or they get frightened..  I know their reaction is out of love, but I want to be more to them than a cancer patient.   Also hopefully I will be able to help another who is going through cancer treatment.

In  September I was diagnosed with Stage 3 NSCLC.  I underwent 14 weeks of weekly chemo and daily radiation treatments.  I am currently in a clinical study receiving the immunotherapy drug - Imfinzi once a month for the next year. The drug has thrown my thyroid a bit out of wrack and given me an itchy rash.  I am fortunate because I did not have any other health issues.  I have doctors who I both like and trust.  They have been very encouraging, and are generous with their time.  - I heard the words - "we caught this in time we have it contained" and everything is getting smaller.   Most of the time I have more energy now than I did before I started my treatments.  

Thank you for reading my introduction. 

Best Regards,

 

Link to comment
Share on other sites

Delia,

Welcome here. We have a lot in common. I was diagnosed Stage IIIB, squamous cell, NSCLC. I'm 70, a retired engineer, and studied piano (classical) for 16 years. But I was diagnosed in February 2004 and experienced every form of lung cancer treatment save immunotherapy. So, if I can live so can you!

Immunotherapy is a godsend for our disease. I know so many who are NED (no evidence of disease), our treatment goal, because immunotherapy works and then keeps on working. Lung cancer is nasty because it frequently recurs. I had 5 recurrences and each one was a nightmare. Thankfully, Imfinzi ought to keep you out of the R--zone.

Questions? This is the place.

Stay the course.

Tom

Link to comment
Share on other sites

Hi Delia, at 67 I'm close in age to you. I was also diagnosed at Stage IIIB in October 2019 but with an EGFR gene mutation. I also had 6x chemo and 30x radiation prior to starting a targeted therapy (which is not immunotherapy) in March 2020. I actually had a really rough time with chemo and radiation and was very sick for the first half of last year but have since recovered and am now NED. 

I think I've gotten past being seen as a patient by my friends and family, mainly because they've seen me get back to almost normal. (My husband probably still worries about me more than he lets on.) It may take some more time for your loved ones to adjust to your diagnosis. After all, they may not be aware that today many of us are living with NSCLC as a chronic illness.

We are here for any venting you need to do. On the bright side, your doctors sound very supportive. Glad you've joined us. 

Link to comment
Share on other sites

Hi, Delia, and welcome from me, too.

This is a great group--they've seen me through everything from my initial diagnosis and lobectomy in 2017 through my recurrence in the other lung last summer, progression of my cancer after an initial great response to chemo/immunotherapy, and where I am right now--just starting a clinical trial for a personalized TIL (tumor infiltrating lymphocytes) therapy. I'm fortunate that most of my family and friends have followed my lead, but as much as I love them, I'm VERY thankful I don't have to rely on them for support. They don't know what this is really like and yes, I spend a lot of time/energy trying to make them not worry.

Glad you're here--hope both of us have success with our trials!

 

Link to comment
Share on other sites

Thank you for acknowledging my post.  Your optimism is contagious.  Presenting my cancer as a chronic illness to my family will hopefully put them more at ease with this illness.    Wishing y'all the best results with your treatments and trials.

One more note - Cancer did have an upside for me - it cured my chronic procrastination. :)

 

Link to comment
Share on other sites

13 minutes ago, DAC said:

Cancer did have an upside for me - it cured my chronic procrastination. :)

I can relate to THAT. I had one other one--chemo seems to have cleared up an ugly skin condition on my face--I'm hoping it stays that way, now that I'm no longer on chemo!

Link to comment
Share on other sites

Welcome, Delia!  I grew up playing the cello and recently got it back from my parents' basement.  I am looking forward to getting it fixed up to start playing again.  Playing an instrument is great therapy for sure!  Thank you for joining us!

Link to comment
Share on other sites

Hi Kristin,

I grew up playing the violin, as I got older  I came to love the rich tones of the cello.  Just striving to make those warm tones I know the cello when played correctly can produce gives me  much joy. Yes playing an instrument is wonderful therapy.   Let me know when you start playing again.  

Link to comment
Share on other sites

Hello from me too.  I was diagnosed in 2018, Stage IV with the ALK mutation, now NED on targeted therapy.  I don’t talk too much about my diagnosis with my friends or family anymore either, I don’t look or act sick however having lung cancer is like having a small flame burning.  I have a phone buddy that Lungevity matches for me where we have the really frank conversations especially around scan times.  There is also a Durva Club under the immunotherapy topics where there are a number of people who crossed the Durva finish line.   Welcome!

Link to comment
Share on other sites

This thread really picked me up today. I have a stage 3 diagnosis (April 26th) and began chemo last Friday. Yesterday was my lowest day, and I felt like I was dying, but like a miracle, I feel healthy today and am out on a walk! Thanks for the optimism everyone. I’ve never needed anything more. 

Link to comment
Share on other sites

@hillham, you will have some low days, it can't be helped. Just ride that wave and enjoy the good days when you get them. Soon you'll have more good than bad days. 

Link to comment
Share on other sites

3 hours ago, Rower Michelle said:

There is also a Durva Club under the immunotherapy topics where there are a number of people who crossed the Durva finish line.   Welcome!

Thank you for the information on the Durva Club and thank you for your uplifting words.

Link to comment
Share on other sites

Delia,

I'm so glad that you found our forums.  You will find kindred souls here with all of us suffering the same disease, but differently and receiving treatment,, but differently.  And therein lies the power of this group.  There are so many varied experiences to draw on that there is little you could go through that someone wouldn't have experienced before you.  Feel free to ask any questions you have and know that you'll find super support here.

As an aside, I play guitar(bass, electric, acoustic) and play three-fingered chords on keyboards so I'm ready to join the band.   :)

Keep us updated as events unfold.

Lou

Link to comment
Share on other sites

19 hours ago, Susan Cornett said:

We have piano, cello, and violin covered. We're on our way to a Lungevity concert!

I can play the radio!

Link to comment
Share on other sites

20 hours ago, LouT said:

I'm so glad that you found our forums

I am  both glad and relieved that I found your forums - I think I found a secure space to ask any question.    BTW - you're in the band - anyone for some jazz?

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.