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Introducing myself and needing hope


Angelica V.

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Hello, I'm Angélica, I live in Spain,  I'm 36 years old and was diagnosed on july 18. I have a 13 months baby boy and my family, friends and myself are devastated.  I have adenocarcinoma non small cells stage IV with meths in spine, adrenal gland and lymph nodes. I had 23 radiation sesions and  4 sessions of chemo with Cisplatin and alimta and probably I'll have 2 more sessions and them I'll receive only Alimta as maintenance. The treatment shrink tumors 26% according my last scan, I'm negative for mutations and only positive 5% for Pdl1.  Doctors tell me about chronic disease, they don't give me a death sentence but I read so negative things on the internet about my situation, I'm christian and I believe in God and miracles but sometimes is so hard and sad deal with this. What do you think about my treatment? Can I have any chances with imunotherapy? I need some hope and know people in my situation. Sorry for my English and I'm writing from my mobile. Thanks in advance for your help and God bless us.

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Angelica,

Welcome here. 

What do I think about your treatment?  From your description, you’ve had the United States first line standard of care. In other words, what anyone in the US would receive for Stage IV disease not suitable for targeted therapy or immunotherapy. 

I’ve been where you are right now; doctors talking about treating my disease as chronic until something emerged out of research. A lot of us move down this road. Sometimes a new treatment or a trial starts that controls lung cancer. Sometimes we continue with chronic treatment. Sometimes the cancer wins. Who knows the future?

Lung Cancer for you in the prime of life is a terrible burden. It is worse than sad, and I wish I had the power to remove your disease. 

I can only offer my own experience as an example of hope. I was diagnosed in 2003. I had four surgeries, three more thoracic procedures, conventional radiation, 18 infusions of Chemotherapy and more. I had nearly 4 years of continuous treatment yet I am nearing 15 years of life after diagnosis. If I can live, so can you. 

Your English is fine. You’ll have lots of questions and this is the place for answers. 

Stay the course. 

Tom

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Angelica,

The first thing I share with new members is to stop reading statistics and grim news on the internet.  We have seen many improvements in the last couple of years and those improvements are not included with any statistics you see now.

I will also tell you that a positive attitude will do you as much good, if not more, than the treatments.  Trust me - I've had my ups and downs, and things go much better when I focus on the positive.  

Please keep us posted on your progress.

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Angelica,

My mom has advanced stage NCSLC adenocarcinoma too. Health-wise she is not in the prime of her life, but she is here 3 years later.  I took the diagnosis harder than she did and took it upon myself to educate myself all that I could so I was the best advocate for her. I too started looking at statistics and felt there was no hope. I allowed myself to get lower than low. It was in one of my 2am "research" sessions that I happened upon LUNGevity and these forums. Things began to change for me and I was finally able to grow into the advocate that my mom needed and I wanted to be.  You will get there too, it just takes times and persistence.

My mom's docs have never given her a death sentence and are treating her lung cancer as a chronic disease, just like her rheumatoid arthritis.  At first this was not acceptable for me. I wanted a cure, I was naive in thinking that her cancer will be cured. She will never be told that her cancer is gone because it's in a spot where it's really tough to see. So we've had to accept that hearing "your cancer is stable". Never in a million years would I have thought I would have accepted hearing anything less than "you are cured". But it's all a part of living with a chronic disease and being in active treatment (my mom is on immunotherapy). 

So what I am trying to say, Angelica, is that there is hope. I have found it and many of us on here have found it to. I see hope every time I look at my mom or hear her say "what a beautiful day it is today." Stick around here and you will see more hope.

As far as your question about immunotherapy, I have heard of people responding well to immunotherapy no matter what the PD-1/L1 levels are. But it seems as though your current treatment is working for you -26% shrinkage is wonderful! Lung cancer is a long-term battle that needs many weapons to be tamed. Immunotherapy may be one of those weapons that is needed down the line. But I am not a doctor. Ask you docs about their thoughts on immunotherapy for you, keep asking until you get an answer that makes sense to you. 

Take care,

Steff

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Hi, Angelica,

I’m sorry to hear about your diagnosis but glad you found this community and that you have already connected with several members. This site is a great place to connect with others, get support, ask questions, and get information. Please continue to post and let us know how you are doing!

We are here for you,

Lauren

Digital Community Manager
LUNGevity Foundation

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