Lydia V

LexieCat,
Somehow I missed seeing your post until today. I'm sorry I wasn't there for you. How did the surgery go?
Lydia

I'm so glad that it worked out for you. I now have a PCP that is phenomenal and works closely with my Oncologist.
Thank you so much for doing the work you did! As a former Psychotherapist I worked with many victims of abuse and so appreciate all the members of the team to assist and support them.
I wish you the very best in your journey. There are so many great options for treatment and more being developed. There is many reasons to be optimistic!
Will keep you in my thoughts and prayers.
Lydia
 
 

I am definitely a fan of screening. Especially because I requested a chest x-ray (I wasn't aware of the screening at that time) a year before my diagnosis. My Doctor asked me why I thought I needed one to which I replied that I had a 30+ pack year history (I had quit 15 years earlier). The Doc asked me if I was having any symptoms to which I replied "no". She said there was no need for an x-ray if there wasn't any symptoms. Needless to say I was quite angry when I was diagnosed with stage 4 one year later. I changed to a different primary care Doctor immediately. I still get angry when I think about it. Especially since 75% of lung cancers go without symptoms until stage 4. Now I tell everyone I know that has been a smoker to get the scan!
Lydia

Hi Paula,
I'm so sorry to hear about your diagnosis. I don't know very much about small cell but I do know that new treatment options are being developed very frequently.
Having said that I also understand what it's like to be facing death. I had a similar experience as you. When I was first diagnosed the Oncologist said 6-18 months with aggressive treatment. At that time I was so sick and had so much pain that I was able to accept that death was in the near future. My family and friends however, were in denial and I couldn't get them to accept the poor prognosis.
My prognosis changed when it was discovered that I had a mutation that could be treated with targeted therapy.
I don't know much about you. How old are you? Do you have children?
How do you feel about death?
Looking forward to getting to know you.
Sincerely,
Lydia
 

Tony,
So sorry to hear you're going through such a difficult process. It seems this diagnosis is one of ups and downs along with severe abrupt turns! My only suggestion is "hang on for the ride". I have stage 4 and it has been a roller coaster ride but I'm in a good place now so am enjoying it for as long as it lasts. Please keep hope and faith in positive outcomes.
I will keep you in my prayers.
Best Wishes,
Lydia

Hi Carl,
Yes, getting the diagnosis does freak one out. I was diagnosed 18 months ago and even though It was stage 4, it doesn't freak me out any more. The treatments have been amazing and am now enjoying life more than ever. I hope and pray you have a similar experience. Do you know what mutation you have?
Lydia

Hi Carl,
Yes, getting the diagnosis does freak one out. I was diagnosed 18 months ago and even though It was stage 4, it doesn't freak me out any more. The treatments have been amazing and am now enjoying life more than ever. I hope and pray you have a similar experience. Do you know what mutation you have?
Lydia

Hi Carl,
Yes, getting the diagnosis does freak one out. I was diagnosed 18 months ago and even though It was stage 4, it doesn't freak me out any more. The treatments have been amazing and am now enjoying life more than ever. I hope and pray you have a similar experience. Do you know what mutation you have?
Lydia

Hi Paula,
I'm so sorry to hear about your diagnosis. I don't know very much about small cell but I do know that new treatment options are being developed very frequently.
Having said that I also understand what it's like to be facing death. I had a similar experience as you. When I was first diagnosed the Oncologist said 6-18 months with aggressive treatment. At that time I was so sick and had so much pain that I was able to accept that death was in the near future. My family and friends however, were in denial and I couldn't get them to accept the poor prognosis.
My prognosis changed when it was discovered that I had a mutation that could be treated with targeted therapy.
I don't know much about you. How old are you? Do you have children?
How do you feel about death?
Looking forward to getting to know you.
Sincerely,
Lydia
 

I also struggled to quit smoking. Eventually I was successful with Welbutrin and Nicorette gum. Since then I became a cessation specialist. Do you have one in your area? One of the 1st steps is to identify triggers (coffee, alcohol, driving, talking on phone etc.) The next is altering the pattern of each triggering event. 
I wish you the best of luck!
Lydia

Hi Paula,
I'm so sorry to hear about your diagnosis. I don't know very much about small cell but I do know that new treatment options are being developed very frequently.
Having said that I also understand what it's like to be facing death. I had a similar experience as you. When I was first diagnosed the Oncologist said 6-18 months with aggressive treatment. At that time I was so sick and had so much pain that I was able to accept that death was in the near future. My family and friends however, were in denial and I couldn't get them to accept the poor prognosis.
My prognosis changed when it was discovered that I had a mutation that could be treated with targeted therapy.
I don't know much about you. How old are you? Do you have children?
How do you feel about death?
Looking forward to getting to know you.
Sincerely,
Lydia
 

Hi Michele,
I'm so happy for you that you found the cancer early.
I can totally relate to the anxiety. It can be both positive and negative. As people with serious health problems we need to pay attention to changes in our bodies and follow up with a visit to our health provider if indicated. The other type of anxiety/fear is the type that happens when we let our imaginations go to all the bad possibilities. That type just wears you down for no good purpose.
I was a psychotherapist before I had to stop because of the cancer. I helped people to develop a variety of skills to manage anxiety. Thought stopping is very helpful when dealing with One's imagination. After awareness of the negative thoughts and images one can stop them and replace them with positive images. It's like making a "movie" of your positive future. See yourself doing something you love, as a healthy person in the future. The more sensory aspects you can add, the better. See yourself, hear the related sounds, notice the smells, your bodies position and how it feels to touching the objects around you etc...
It takes a little practice but can be vey helpful. The practicing is best done when your not anxious as it's difficult to learn something new once anxiety is activated. If it's too difficult to do on your own there are lots of recorded guided imagery that can be down loaded.
Hope that helps.
Enjoy your happiness.
Lydia

Hi Michele,
I'm so happy for you that you found the cancer early.
I can totally relate to the anxiety. It can be both positive and negative. As people with serious health problems we need to pay attention to changes in our bodies and follow up with a visit to our health provider if indicated. The other type of anxiety/fear is the type that happens when we let our imaginations go to all the bad possibilities. That type just wears you down for no good purpose.
I was a psychotherapist before I had to stop because of the cancer. I helped people to develop a variety of skills to manage anxiety. Thought stopping is very helpful when dealing with One's imagination. After awareness of the negative thoughts and images one can stop them and replace them with positive images. It's like making a "movie" of your positive future. See yourself doing something you love, as a healthy person in the future. The more sensory aspects you can add, the better. See yourself, hear the related sounds, notice the smells, your bodies position and how it feels to touching the objects around you etc...
It takes a little practice but can be vey helpful. The practicing is best done when your not anxious as it's difficult to learn something new once anxiety is activated. If it's too difficult to do on your own there are lots of recorded guided imagery that can be down loaded.
Hope that helps.
Enjoy your happiness.
Lydia

Hello Joanna,
It is nice to "meet" you. I'm so sorry that it is under these circumstances.
All I can tell you is that my sister has been a major support for me during this difficult time. There is something so special about a sister relationship that it is a role that no one else can fulfill. Because of the sister-bond and long-term nature of the relationship I could totally relax with her and talk about things that I wouldn't be comfortable sharing with anyone else.
I know nothing about you circumstances but if you are able to go there without causing too much hardship for yourself, I would encourage you to go to be with her.
I think I saw on one of the cancer websites that there may be assistance with travel expenses for situations like this.
My heart goes out to you and your sister. I will keep you both in my thoughts and prayers.
Lydia

Wow, Tom, your message regarding palliative care was right on. The only thing I can add is usually hospice includes support for family members. Many time that person can facilitate discussions between the patient and their family members. It is never wrong to show or share your emotions but sometimes a 3rd party can help it to be done in a way that can be very therapeutic and positive for all involved. Many times when emotions are high, accurate communication can be a challenge. 
Best Wishes to you.
Lydia

Patty-cat,
I totally hear you! I was very shocked, afraid and had great difficulty finding hope or faith. I'm happy to say that 18 months later I'm feeling much better and have actually been able to resume some of the activities that I did before the diagnosis. Reading the book "New Beginnings, the triumphs of 120 cancer patients" was very helpful for me.
I hope that you are able to find hope as well.
Wish I could take all the distress away for you.
Lydia

Welcome Alyssa. Good to have you aboard!
Lydia

To all Fellow Passengers on this amazing Tagrisso Train,
Just got the results of my CT. I'm doing the Tagrisso Dance. The news was all great-shrinkage and disappearance of nodules. Bones stable. Amazing since I was off the Tagrisso for 7 weeks!? (Can't find the dance emoji) But I'm definitely doing the dance!
Hope you are all dancing with me! ?
Lydia

Lydia,
Wonderful news.  Simply wonderful.  I've read lots of information on the effectiveness of Osimertinig (Tagrisso), the EGFR inhibitor that targets resistance to tyrosine kinase inhibitors (TKIs). Keep dancing and....
Stay the course.
Tom

Barb,
Welcome here.  
Lung cancer is a b***h!  It is often discovered late and for many palliative care is the best form of treatment.  During my many recurrences, my oncologist, wife, and I had many conversations about palliative care when curative treatments were not working.  Consequently, we were able to formulate our plan for palliative care.  From reading your post, it looks like you folks didn't have a lot of time to think about your palliative care objectives were.  So, I'll share mine with you.
I wanted my life in the palliative stage to be as normal as possible.  I wanted to be home, enjoy the company of my friends and family, interact with my pets and partake in all those tasty treats my wife -- the queen of desserts -- can generate.  I also wanted to be able to leave the house to see a movie or go out to dinner with friends.  In summary, I wanted to live, even though I understood the time would be short.
There were many meltdowns.  I melted down, then my wife would melt down but after the drama, we's go back to the plan and remember what our objective for seeking palliative care was -- living an enjoyable and meaningful life.  I challenge those that tell you not to display feelings to explain how that is not possible.  But, confine those feelings to sadness about the situation, not mourning.  This period is still a time for living.
Now for some suggestions.  During my fourth line treatment, that was unsuccessful, we discovered the power of photographs of our lives and we'd spend hours in front of the computer reviewing all the good, bad and ugly memories we shared together.  You know, every family has that "holiday melt down" and it was high drama at the time, but years later it was fodder for laughter.  We'd page through those memories and harvest the meaning in our lives. 
I did not get admitted to hospice.  I got lucky and a form of stereotactic radiation was approved for lung cancer patients.  This radiation allowed me to avoid the hospice admission.  But we prepared for hospice.
In my long tenure of surviving lung cancer, I've interacted with many who entered palliative care.  I've spent hours answering questions like "what next" or "what do we do." Your palliative care providers might be able to help you answer those questions or refer you to someone who can.  I tell people who ask me that cancer is a disease of life and death. While life is available, I choose to live it and search for joy and when I find it, I share it with those I love.
Stay the course.
Tom

To all Fellow Passengers on this amazing Tagrisso Train,
Just got the results of my CT. I'm doing the Tagrisso Dance. The news was all great-shrinkage and disappearance of nodules. Bones stable. Amazing since I was off the Tagrisso for 7 weeks!? (Can't find the dance emoji) But I'm definitely doing the dance!
Hope you are all dancing with me! ?
Lydia

To all Fellow Passengers on this amazing Tagrisso Train,
Just got the results of my CT. I'm doing the Tagrisso Dance. The news was all great-shrinkage and disappearance of nodules. Bones stable. Amazing since I was off the Tagrisso for 7 weeks!? (Can't find the dance emoji) But I'm definitely doing the dance!
Hope you are all dancing with me! ?
Lydia

To all Fellow Passengers on this amazing Tagrisso Train,
Just got the results of my CT. I'm doing the Tagrisso Dance. The news was all great-shrinkage and disappearance of nodules. Bones stable. Amazing since I was off the Tagrisso for 7 weeks!? (Can't find the dance emoji) But I'm definitely doing the dance!
Hope you are all dancing with me! ?
Lydia

I was diagnosed with stage 4 in Sept 2015. At the time the prognosis was grim, 6-18 months. It's Jan of 2017 and I'm doing well. I was on Afatanib for about 7 months before new mutation showed up. Now on Tagrisso. Next scan in 2 weeks.
When I was initially diagnosed I told my friend, who happens to be a nurse specialist in oncology that,"My goose was cooked!" She adamantly disagreed. She responded that she would be honest with me and tell me "when my goose was cooked". Apparently "my goose" is still alive and well. 
My point being, it is really difficult to have hope when the diagnosis is revealed. It gets much easier once you've had some success with treatment.
I feel so fortunate that we are in a time when new treatments are being developed frequently!
Best Wishes and Prayers,
Lydia

I also struggled to quit smoking. Eventually I was successful with Welbutrin and Nicorette gum. Since then I became a cessation specialist. Do you have one in your area? One of the 1st steps is to identify triggers (coffee, alcohol, driving, talking on phone etc.) The next is altering the pattern of each triggering event. 
I wish you the best of luck!
Lydia