Jump to content


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Given his lymphoma, I'm curious if he is being treated by the same doctor caring for him for that cancer? If so, I wonder if a doctor who specializes in lung cancer may have a different plan. The idea of treating stage 4 lung cancer as a chronic disease, that you may not cure but you may be able to treat for many years, is relatively new in the lung cancer world. A good friend of mine that is an oncologist (though working in drug development, not treating patients) was very surprised when my sister was first diagnosed in 2007 and he was paying more attention to lung cancer at meetings, mainly because of me. He was shocked at how many more drugs there were for treating it and how much longer they were able to keep treating it. That is very evident by the folks you will see on this board. I would second the recommendation to go to cancergrace. And I would also recommend seeing an oncologist that specializes in lung cancer, if you haven't already. And if you have, I'd probably want to go talk to another one. Also, given that stage 4 is technically rarely curable, the use of the term palliative shouldn't be taken as meaning giving up. People who are treated and lived with stage 4 lung cancer for many years, are technically being treated palliatively, rather than curatively. But there are many out there living many years and with a great quality of life. I would want to know what this doctor means by 'palliative'. I'm sorry you are going through this and I hope folks here are able to both help you and give you hope.
  2. This was awesome!! I shared with many friends. Saw on youtube another to this song, done at the pediatric cancer ward at Seattle Children's Hospital. It's a great song for videos like this. Thanks for sharing.
  3. So sorry Donna. Very unfair for your family to have to deal with this again. Prayers that his Stage 3 is as responsive as my sister's has been!
  4. cat127


    A quick search of clinicaltrials looking for SCLC and NY hit on a few drug trials. Such as this one: http://clinicaltrials.gov/ct2/show/NCT0 ... ANY&rank=1 There are a few other drug trials there too. I wonder if trying to call the contact numbers on the trials is another avenue to explore for getting a foot in the door at MSK? I have zero experience with that, just sort of thinking out loud.
  5. Eric - I love how widely travelled you are, making connections with lung cancer warriors all over the world! You can bet I'll post your invite to the 10-yr Paris celebration - especially if you come bearing bubbly!
  6. Two weeks ago, about 80+ people gathered to celebrate that on May 19th, my sister hit the 5-yr mark since her diagnosis of locally advanced (3b) NSCLC. We had a Paris theme to our party, with a gorgeous cake made by a local French pastry chef and cookies in the shape of the Eiffel tower. I told everyone the 10yr cancerversary party would be held in Paris so they should start saving now. We toasted her with sparkling white wine, and with one bottle of an expensive champagne that I bought in Paris two years ago, specifically for this party, yet scared that the party wouldn't happen. But it did, and it was AWESOME. When she was first diagnosed and heard what the statistics were, I told her - well someone has to beat those odds, why not you? And beat them she did. It was hard to feel hopeful in those first months, but people on this site always gave us reason to believe. I hope her story is able to give folks that are new here reason to hope and believe as well.
  7. This makes me incredibly sad. A friend was telling me that she has a friend who works with the American Lung Association who was always talking about how helpful Kathryn Joosten was to them. She was one of the few celebrities who was up front and vocal about lung cancer. Plus, she played some great TV characters. http://www.eonline.com/news/kathryn_joo ... ves/320735
  8. Such wonderful news, thanks for sharing that with us!
  9. cat127


    Kelly hasn't taken Gemzar but I know that the label for it calls for a 30 min infusion. Which of course doesn't include any premedications. Not sure if that helps at all, but thought I'd toss it in there.
  10. I'm going to pick this up and check it out. My 26-yr old nephew was killed a year ago and while my sister-in-law seems to be doing as well as can be expected, my brother is really struggling. I just don't know how to help him. I'm going to check this out and maybe send it to him. Thanks!
  11. Changes in the voice are not uncommon due to the recurrent laryngeal nerve and how it is located in the chest. It is not uncommon for it to get damaged either by a tumor pressing on it, or when they do the mediastinoscopy to biopsy lymph nodes, or I would imagine during lobectomy surgery too. My sister all but lost her voice when she had her mediastinoscopy. There are things an ENT can do to help strengthen the voice if it doesn't come back. My sister's eventually did, though I do think it is a bit gravely since then, but it is back in strength. That's a long answer for - I would call this normal.
  12. Thank you for stopping in and providing that great inspiring story! And WOOOO WHOOO on 8 yrs.
  13. cat127

    can not wait!

    I second that emotion!
  14. That really is a very inspiring story. And you have a very wonderful way with words and of telling the story. Truly an inspiration to anyone, new here or not. Thank God indeed for second opinions!
  15. I and others would recommend you go to cancergrace.org and ask your question of the doctors there. They would be better able to tell you an answer to that. My gut instinct though is that you are right to be bothered by this reaction from the second doctor. I've never heard of anyone here or in my real life who had one done, it was deemed negative and the doctor said they didn't believe that. I also disagree with the 'almost always' comment, and I'm sure there are quite a few people here who have had that test and it was not cancer. There are other reasons for that fluid and not just due to cancer. Definitely ask over on the board at http://cancergrace.org/ and I'm sure they will have good advice for you. You are a wonderful friend helping out with this.
  • Create New...

Important Information

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