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Lydia V

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Everything posted by Lydia V

  1. LexieCat, Somehow I missed seeing your post until today. I'm sorry I wasn't there for you. How did the surgery go? Lydia
  2. 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
  3. 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
  4. Lydia V

    Ed

    Hell Ed, Good to meet you. Yes you absolutely want to request testing for mutations. My most recent testing was done via a simple blood test but the initial testing was a biopsy of the tissue. The biopsy may be more specific. But either way that testing can open many avenues for treatment with targeted therapy. I wish you the best. Let us know how it goes. Lydia
  5. 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
  6. 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
  7. Hi Nagle, I agree with the others, could be many things. I know it's difficult from keeping your mind from going right to the worst! I'm so glad you have your loving wife to go with you. Hopefully you will have great relief and happiness after your appointment tomorrow. Best Wishes, Lydia
  8. 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
  9. 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
  10. 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
  11. Barb, My heart goes out to you and your husband. As a patient, sometimes I think this process is more challenging for the family members than it is for the patient themselves. You are in my thoughts and prayers. Lydia
  12. 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
  13. Welcome Alyssa. Good to have you aboard! Lydia
  14. 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
  15. Welcome Alyssa. Good to have you aboard! Lydia
  16. 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
  17. 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
  18. 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
  19. Lydia V

    Hi

    Hello Rain, Sorry it took so long to respond but I've been having problems with my internet connection. I went through a similar frustration. I live in a rural area and I was frustrated with the lack of answers in a timely manner. I ended up going to an ER in a nearby city with difficulty breathing. The ER Doctor got the "ball rolling" as she suspected the diagnosis. I was very fortunate to have her as an advocate for me. She made it possible to see Oncology within a couple days. Hope this helps. Lydia
  20. I would love to hear from anyone who is or has been on Tagrisso. I was on Afatinib but changed to Tagrisso when new mutation showed up. Originally I had many side effects and had to go off it for about 6 weeks, I was restarted at a lower {40 mg) dose and gradually increased back up to 80 mg. No severe side effects yet, just a mild rash. Lydia
  21. Bobbie, So good to hear from you. Are you in the UP? I ask because I live in NE WI. We are pretty close to the UP. What treatment are you on? I started out with afatinib and am now on Tagrisso. Initially I had severe side effects on the Tagrisso so I had to stop it for a while. I am back on it now and "so far so good" . I was very surprised when I was diagnosed with stage 4 as I wasn't feeling ill except for a couple weeks before diagnosis. Was your experience similar? Lydia
  22. I'm so glad to hear you are going to a cancer center. I was diagnosed with stage 4 October of 2015. I have had some issues with my insurance but my Oncologist did a peer to peer conference with the Doctor from the insurance company and it was always approved. I'm of the opinion that everyone needs to advocate for themselves. We have wonderful Doctors who are experts in medicine but only you are the expert of your body. Only you knows what "normal" feels like for you. Any variation from that is significant. In your initial message it sounded like you had the intuition that the PET was a good idea and you were right. Always believe your intuition and your body! It sounds like yours is in an early stage. Even with a stage 4 things are going well, thanks to the marvels of modern medicine. I wish you the very best! How about gold sprinkles of fairy dust to go with the pink and purple? Lydia
  23. Hello to all fellow members. I was diagnosed with stage lV nsclc September of 2015. Initially the prognosis was very bleak. After 3 months of traditional chemotherapy I was found to be a candidate for targeted chemotherapy with the EGFR mutation. I was on Afatanib for 9 months before the T790M mutation showed up. I then started Tagrisso but had to quit after developing a rash that progressed to severe abscesses over about 70% of my body even though I was on Minocycline. After 10 days of IV cephalosporin followed by 2 weeks of oral I’m finally back on Tagrisso (at a lower dose) while remaining on the oral antibiotic. I am maintaining hopefulness. I have had good results with the treatment, I just have to avoid side effects!
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