Jump to content

Meloni

Members
  • Content Count

    53
  • Joined

  • Last visited

  • Days Won

    2

Reputation Activity

  1. Like
    Meloni got a reaction from Mally in Mom, 64, dx w IIIa NSCLC   
    Hi Ktamdgirl,
    I'm sorry about your mother's diagnosis. Like Tom says, you're at a wonderful facility for treatment. 
    February of 2016, I was diagnosed with Stage IIIA adenocarcinoma. The primary tumor was in my right middle lobe and only measured 13mm (1.3cm), and three mediastinal lymph nodes were positive (I'd have to check my labs to recall the specific ones). 
    I ultimately received treatment similar to your mother's current plan. My radiation was received concurrent with chemo (same combo of chemo as your mom), because I had no pre-existing barriers. Also, I was initially a non-surgical candidate, so my chemo was split during treatment. I received two rounds pre-surgery, and two rounds post-surgery. 
    I like Tom's description of the doctor's ganging up on one another. That is similar to my team as well. Sometimes the oncologist and radiologist gangs up on my (extremely talented) surgeon to operate on something, and he concedes, but then Dr. Surgeon (who is very lung cancer oriented), turns around and convinces Dr. Oncologist to put me on the TKI that they were hesitating on. 
    ANYWAY, I'm digressing. My point is, they have a plan for for treatment, and depending on variables, the plan might change. For example, if your mom needs an extra break in between chemo sessions to recover her blood counts, they already know it's a possibility. If she needs extra help working through the nausea and fatigue, they've got resources for that. 
    Sorry I have to cut this off, have to leave for an appointment. You are very fortunate to be at a fantastic treatment center! Hope to hear from you soon! <3
     
     
  2. Like
    Meloni got a reaction from Tom Galli in Port Question   
    I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
    P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 
  3. Like
    Meloni got a reaction from Mally in Port Question   
    I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
    P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 
  4. Like
    Meloni got a reaction from LaurenH 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
  5. Like
    Meloni got a reaction from Julie in SoCal in Port Question   
    I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
    P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 
  6. Like
    Meloni got a reaction from Judy M. in Port Question   
    I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
    P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 
  7. Like
    Meloni reacted to Juanita the CrossFit Diva in The CrossFit Diva here :)   
    Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization.
     
    I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!!
     
    DON'T EVER GIVE UP!! No matter what they tell you!!
     
    Sent from my SAMSUNG-SM-G935A using Tapatalk
     
     
  8. Like
    Meloni reacted to Lbelle78 in Shocking news   
    Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.
  9. Like
    Meloni got a reaction from Mommy's girl 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
  10. Like
    Meloni reacted to Judy M. in Just Thoughts   
    Good morning fellow travelers. Was listening to a testimony from a cancer survivor some time ago and she said something I've found helpful, so thought I'd share with you guys. She said, "The disease is going to do what the disease is going to do, the doctors are going to do what the doctors are going to do, and God is going to do what God is going to do. All you have to do is mind your joy." Helps to keep me focused when my mind scatters. Also, read that some studies show that vitamin E may help prevent lung fibrosis resulting from radiation. Suppose it can't hurt to try that. Have shot a note to my Oncologist asking if there are any vitamins and minerals I shouldn't take during radiation or chemo. Did set up session for SBRT yesterday. Radiology Oncologist now says they are going to do SBRT on the 2 tumors in my right lung rather than the one in my left. Then radiation/chemo concurrent on the one in left lung. The plan appears to me to have gone through a number of changes, but I'm happy to be getting SBRT on 2 rather than just 1. I have both a Med. Oncologist and a Radiation Oncologist. Not sure they're communication is always the best. Feeling good today and planning to enjoy it. Hope all of you are also.
    Judy M
     
    Sent from my SAMSUNG-SGH-I337 using Tapatalk
     
     
  11. Like
    Meloni got a reaction from corinnecasebeer 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
  12. Like
    Meloni 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/
  13. Like
    Meloni reacted to Linnea Olson in Shocking news   
    Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com  You are not alone. xoxo Linnea
  14. Like
    Meloni got a reaction from Julie in SoCal in Biopsy Results   
    Hi Julie in SoCal,
    I had an open lobectomy last May, and I think there are some similarities in recovery. 
    Spirometer - they will likely give you one prior to surgery. Practice with it before surgery, and IMPORTANTLY, use it regularly post-surgery. 
    Walking - your doctor will probably want you to take some slow walks around the hospital once you're out of ICU (ICU is standard after surgery). Do it. Use a walker or wheelchair for support and be kind to yourself. You will fell breathless for awhile until your lungs adjust. Once you get out of hospital, continue with slow walks, but don't go so far out at first that you can't make it back home (my family requested I walk in the backyard unless I had an escort for a few months).
    Sleeping and coughing can be tough for awhile. I used pillows to support various parts of my body until I found the sweet spot. I also used a small square pillow that my mother-in-law made me, which I held under my right arm and against my upper right thoracic region for support. Bracing with it while coughing helped control the pain, and using it as support helped whiled I walked distances. 
    There are other things, but I'm sure many here have lovely tips! 
     
    Mel
  15. Like
    Meloni got a reaction from Mally in Biopsy Results   
    Hi Julie in SoCal,
    I had an open lobectomy last May, and I think there are some similarities in recovery. 
    Spirometer - they will likely give you one prior to surgery. Practice with it before surgery, and IMPORTANTLY, use it regularly post-surgery. 
    Walking - your doctor will probably want you to take some slow walks around the hospital once you're out of ICU (ICU is standard after surgery). Do it. Use a walker or wheelchair for support and be kind to yourself. You will fell breathless for awhile until your lungs adjust. Once you get out of hospital, continue with slow walks, but don't go so far out at first that you can't make it back home (my family requested I walk in the backyard unless I had an escort for a few months).
    Sleeping and coughing can be tough for awhile. I used pillows to support various parts of my body until I found the sweet spot. I also used a small square pillow that my mother-in-law made me, which I held under my right arm and against my upper right thoracic region for support. Bracing with it while coughing helped control the pain, and using it as support helped whiled I walked distances. 
    There are other things, but I'm sure many here have lovely tips! 
     
    Mel
  16. Like
    Meloni reacted to Sue1147 in FDA Approves new ALK treatment - Please read   
    My 38 yrs old daughter was just diagnosed 3 weeks ago with stage 111b adenocarcinoma! A week later they found a very small Met in her brain! We go to have that radiated on Monday! Gene study just came back and she has the ARK and the PDL1! After the brain rad she will be starting Crizotinib! On researching this, I was wandering hue expensive this drug is and how good insurance pays for this! This has given us hope and we are anxious to start this! Any insight anyone can give me will be greatly appreciated! So excited about your news!!
  17. Like
    Meloni reacted to michellep in Lost   
    I've been away from the message boards for a while and just saw your post. My heart truly goes out to you and I hope you can get some answers soon.  Please let us know how things are going.  Don't forget to take care of yourself too.....that's also very important.  ((hugs))
  18. Like
    Meloni reacted to taxmeless in 8MM nodule right upper lung - getting very scared   
    Meloni, your response was funny and very appreciated. Diet, exercise, sleep, and lack of stress is key to keeping disease away. I hope you join me in changing your diet . The difference in just 30 days for me was amazing. Eating from the earth without processing or chemicals and avoiding red meat will extend your life. Love....
  19. Like
    Meloni got a reaction from Tom Galli in 8MM nodule right upper lung - getting very scared   
    I'm reading about your beautiful diet of nuts, berries and fish while stuffing my face with a Quarter Pounder w/Cheese. 
    The others have already provided excellent advice. I'm glad your visit with the pulmonologist is coming up on the 28th. The wait time tests my patience, but my oncologist always reminds me that the window of opportunity will not be lost between now and then.  
    Despite the CT, I remain hopeful that your nodule is benign. It does need clinical evaluation, and I'm glad you're seeing this through. God forbid, the nodule needs obliteration, early detection is the key to kicking it in the butt.  You are so very brave to do this. You are not doomed. 
    Finally, I hope you don't beat yourself up about your smoking past. Celebration of your non-smoking present sounds a lot more interesting. <3
    Meloni
     
  20. Like
    Meloni reacted to Tom Galli in Surgery scheduled   
    Lbelle,
    Well it is somewhat settled and that is a good thing. I never had an EBUS procedure. Mine was an old fashioned incision at the base of my throat, but I quickly recovered. From what I've read, EBUS is a piece of cake. 
    The special form of anxiety you are feeling anticipating test results is a common lung cancer survivor lament. I was so affected, I even wrote a book about it. 
    Keep us in the loop and...
    Stay the course.
    Tom
  21. Like
    Meloni reacted to Lbelle78 in Surgery scheduled   
    Ok, loved this new surgeon, scheduled for robotic lobectomy April 12. Still can't believe I am doing this. Scared to do EBUS for mediastinum biopsy and MRI, more the anxiety of waiting to hear results than anything. 
  22. Like
    Meloni reacted to Tom Galli in New tumour in pancreas...   
    Isaut,
    We were all hoping for a better outcome for your stepfather.  It is fortunate, you are allowed to take a leave of absence to care for him as he experiences this change in life cycle.
    Hope is so very important to a lung cancer survivor and to those that care for the survivor.  Often, it is our only reliable treatment method.  So, we invest in hope and it becomes very hard to pair back the investment.  This, and your love, are likely the reasons you are finding difficulty accepting progression and its consequences.  But, there are only two universal and predictable aspects of all life:  birth and death.  
    Ensuring a comfortable transition is so very important and I can tell you will excel in this process.
    Stay the course.
    Tom
  23. Like
    Meloni got a reaction from Mally in New tumour in pancreas...   
    It's good to hear back from you. I'm sorry you don't have better news to report. <3 
    Happy to hear he is resting, and I hope you can get some rest as well. 
  24. Like
    Meloni reacted to Marcie in Father, 59, going through NSCLC diagnosis.   
    Update: My father had his MRI and it looks like his brain is clear. I'll take any good news I can get!
    Now we wait for the biopsy on the 1cm spot that lit up during the PET scan in his liver. Still hoping that it ends up benign... 
    Best,
    Marcie
  25. Like
    Meloni reacted to Tom Galli in Father, 59, going through NSCLC diagnosis.   
    Marcie,
    We are also sorry your dad and you are going through this very trying process.  I hope for the best. 
    The world between worry and hope unfortunately is very familiar territory.  To help bound the worry portion, I'll suggest some answers for your questions.  All of us here have had a similar journey either as patients, family members or care givers.  You dad is on what we informally call the typing and staging trail.  This trail ends at one of two locations: no cancer or a type of cancer and a determination on where it is located.  Interestingly, there have been positive outcomes for both trail ends.  Obvious joy at a no cancer discovery, but joy in successfully concluded cancer treatment, especially for lung cancer.  I'll have more to say about joy when you learn all the test and biopsy results.
    Waiting is the bane of our existence.  Not too many years ago, it often took two or more weeks for scan film to be developed before it could be queued up for the radiologist. Waiting is so diabolical I wrote a book about it -- Scanziety!  The uncertainty and special kind of anxiety that results is almost unbearable.  Yes, the waiting is very hard.  Let us hope your time is short and outcome is good.
    PET scans work by sensing a cell's demand for energy.  The body is deprived of nutrition, then injected with glucose that is tagged with a radioactive substance with a very short half life.  In my case an Iodine isotope was used.  The scan can track the accumulation of glucose in certain areas.  These can be metastatic cancer, an injury, strained muscle or inflammation. In my long "exposure" to PET scans, I've had a lot of false positives, but I've had a lot of positives also.
    You are on the right track with hope and prayer.  Here is my view about hope and its importance to lung cancer survival.
    I sincerely wish your dad's indicators are something besides cancer.  If they are lung cancer, then you'll have a ton of questions and this is a good place to tee them up.
    Stay the course.
    Tom
×
×
  • Create New...