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Lbelle78

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  1. Like
    Lbelle78 got a reaction from LaurenH in Scanziety   
    That is so awesome!! Congratulations on NED. God bless.
  2. Like
    Lbelle78 got a reaction from Suepm in Shocking news   
    Hi Lauren, I flew to out to Mexico City for a cryoablation/immunotherapy treatment that has not yet been approved in the US. However, my Dr. is from the states, where we initially met him. We have had an amazing experience and I am currently going through a strong immune response that involves fever and flu like symptoms as the body's immune system attacks the cancer, no fun to be sure, but exactly what the doctors want to happen.I know treatments like this are not the norm, but they do involve FDA approved immunotherapies, just used in a combination that is not yet approved in the states. Brief Opdivo infusions upon return are the next step followed by several scans to measure progress. I hope to share more upon completion of this protocol that is useful for Stage 4 patients especially. God bless.
  3. Like
    Lbelle78 got a reaction from BridgetO in Scanziety   
    That is so awesome!! Congratulations on NED. God bless.
  4. Like
    Lbelle78 reacted to Suepm in Shocking news   
    Hi Lbelle ,


    Thanks for the update . I was wondering how you were doing. Glad to hear you have a plan and are moving forward . God bless . Suepm


    Sent from my iPad using Tapatalk
  5. Like
    Lbelle78 got a reaction from LaurenH in Shocking news   
    Hi Lauren, I flew to out to Mexico City for a cryoablation/immunotherapy treatment that has not yet been approved in the US. However, my Dr. is from the states, where we initially met him. We have had an amazing experience and I am currently going through a strong immune response that involves fever and flu like symptoms as the body's immune system attacks the cancer, no fun to be sure, but exactly what the doctors want to happen.I know treatments like this are not the norm, but they do involve FDA approved immunotherapies, just used in a combination that is not yet approved in the states. Brief Opdivo infusions upon return are the next step followed by several scans to measure progress. I hope to share more upon completion of this protocol that is useful for Stage 4 patients especially. God bless.
  6. Like
    Lbelle78 got a reaction from Julie in SoCal in Opdivo infusions- Please Share Your Symptoms   
    Thanks so much Julie, that's a great help!! I actually got a call back yesterday from the Dr. and he said that I've been approved for Keytruda rather than Opdivo, so we will meet with him tomorrow and start up next week. I'm nervous about it because before this diagnosis I rarely put anything but natural products into my body, and so the uncertainty of it all is crazy. But. it is a necessary evil and I am ready to get it done. 
  7. Like
    Lbelle78 reacted to Julie in SoCal in Opdivo infusions- Please Share Your Symptoms   
    Hi Lbelle78,
    I have had Opdivo's twin, Keytruda for melanoma.  I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!).  Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war).  But I digress...
    I had a fairly easy time with Keytruda.  I was a little tired and achy (flu like symptoms) a day or two after the infusion.  Sometimes I had a headache, and my joints would hurt.  But after a few days I was back to my regular normal self.  I was able to work and if I timed it right, travel.  
    The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were  a wealth of information and help in dealing with the treatment.  The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt.  Be patient with the patient is what I've heard.  So prepare yourself for the long game, and not necessarily the short game.  
    In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug.  But they've had complete response.  May you too have a complete response with minimal side effects.
    Hoping Opdivo kicks your LC to the curb!
    Shalom,
    Julie
  8. Like
    Lbelle78 got a reaction from Julie in SoCal in Opdivo infusions- Please Share Your Symptoms   
    Hi guys, can any of you who have been on Opdivo infusions short term share your early symptoms? I'm supposed to start the first full week in June and am nervous about this! My doctor has of course shared all of the potential issues I might face such as thyroid issues, colitis, pneumonitis, but I would like to hear from actual patients. Thanks so much!!
  9. Like
    Lbelle78 got a reaction from JohnIP123 in Opdivo infusions- Please Share Your Symptoms   
    Hi guys, can any of you who have been on Opdivo infusions short term share your early symptoms? I'm supposed to start the first full week in June and am nervous about this! My doctor has of course shared all of the potential issues I might face such as thyroid issues, colitis, pneumonitis, but I would like to hear from actual patients. Thanks so much!!
  10. Like
    Lbelle78 got a reaction from Tom Galli in Shocking news   
    Hi Lauren, I flew to out to Mexico City for a cryoablation/immunotherapy treatment that has not yet been approved in the US. However, my Dr. is from the states, where we initially met him. We have had an amazing experience and I am currently going through a strong immune response that involves fever and flu like symptoms as the body's immune system attacks the cancer, no fun to be sure, but exactly what the doctors want to happen.I know treatments like this are not the norm, but they do involve FDA approved immunotherapies, just used in a combination that is not yet approved in the states. Brief Opdivo infusions upon return are the next step followed by several scans to measure progress. I hope to share more upon completion of this protocol that is useful for Stage 4 patients especially. God bless.
  11. Like
    Lbelle78 got a reaction from Tom Galli in Shocking news   
    Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.
  12. Like
    Lbelle78 got a reaction from Tom Galli in Shocking news   
    Linnea, that's so encouraging, thank you. I will definitely be checking you out. I'll read more about your journey.
  13. Like
    Lbelle78 got a reaction from Fred G in Shocking news   
    Since all the path reports aren't back yet and I'm still recovering from surgery he wants to wait a bit. We will meet back in the next couple weeks but we will hear from him again tomorrow. Thank you so much for the prayers.
  14. Like
    Lbelle78 got a reaction from Mommy's girl in Shocking news   
    After going in Friday for a robotic upper right Lobectomy, I woke up to learn that the surgery could not be completed because the surgeon saw spots in the lower lining of my lung. He completed a small wedge resection for biopsy and closed me up. My family and I have been heartbroken to put it mildly. This jumps me from a "curative" stage 1 to stage 4 at age 38. I do have the ALK mutation, but the oncologist today was not very hopeful. We have cried all day long, and my poor husband sobbed for an hour driving back.This is so unbelievable after being so excited for a good outcome. I so want to be here for my children and family.
  15. Like
    Lbelle78 got a reaction from corinnecasebeer in Shocking news   
    Linnea, that's so encouraging, thank you. I will definitely be checking you out. I'll read more about your journey.
  16. Like
    Lbelle78 got a reaction from corinnecasebeer in Shocking news   
    Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.
  17. Like
    Lbelle78 got a reaction from Suepm in Shocking news   
    Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.
  18. Like
    Lbelle78 got a reaction from Suepm in Shocking news   
    Linnea, that's so encouraging, thank you. I will definitely be checking you out. I'll read more about your journey.
  19. Like
    Lbelle78 got a reaction from Meloni in Shocking news   
    Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.
  20. Like
    Lbelle78 reacted to Tom Galli in Shocking news   
    Lbelle,
    I join the chorus of disappointed survivors. Several have provided superb advice. These include: second opinion from ALK experienced medical oncologist and treatment at a world class treatment center if your insurance stretches.  You may need to only use this center to diagnose and devise a treatment plan for ALK rearrangement and administration may be able to be performed locally.
    Take a couple of days to let this sink in. Do join the ALK Facebook group. Those folks truly understand the evolving treatments, drugs, and methods and can provide very useful advice. 
    Stay the course. 
    Tom
  21. Like
    Lbelle78 reacted to Meloni in Shocking news   
    Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
    I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
    I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
    Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
    I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
    Spoiler alert: There is always hope!
    http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1
  22. Like
    Lbelle78 reacted to BridgetO in Shocking news   
    I'm sorry to hear about your diagnosis. I know you worked hard to get the robotic surgery you chose. So now you'll need to work hard to get a second opinion and hang in with treatment. You can do it! There are so many people on this site with Stage 4 who are living good lives; I hope they will inspire you.
     
     
  23. Like
    Lbelle78 got a reaction from Tom Galli in Shocking news   
    Since all the path reports aren't back yet and I'm still recovering from surgery he wants to wait a bit. We will meet back in the next couple weeks but we will hear from him again tomorrow. Thank you so much for the prayers.
  24. Like
    Lbelle78 reacted to Suepm in Shocking news   
    Lbelle ,

    I know this is such a shock . And you and your family are in my prayers. Did the oncologist have a treatment plan ?

    Suepm


    Sent from my iPad using Tapatalk
  25. Like
    Lbelle78 reacted to corinnecasebeer in Shocking news   
    I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
    The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
    Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
    2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
    https://www.facebook.com/groups/ALKIESWW/
    https://www.facebook.com/groups/ALKlung/
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