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PaulaC

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  1. Like
    PaulaC got a reaction from judyb75 in Mom newly diagnosed with Stage IV NSCLC   
    Katum31 welcome and I don’t have anything to add other than I love your attitude and drive for answers. 
     I’m like Lexi I want control but my kids have been my backup. They’re just has involved in all steps of my treatment and health. 
    Continue to let her know how strong she is. 
    Take Care
    Paula
  2. Like
    PaulaC reacted to Charles in Durvalumab   
    also a good update here
     
    the prednisone seems to be working it's wonders as the side effects are subsiding pretty nicely. Eye thing all but gone , abilities (physical, mental) seem to be improving, endurance improving, energy level coming back and lasting longer, and the overall feeling of "well being" returning with new creative thoughts emerging, this I thank God for. Last night, as my wife and I were having a discussion, I made a funny remark and we just howled and howled, complete with tears at 2 AM in the morning. I,  full of energy,  being a smoker for 40 yrs plus, and also having COPD, was once again able to laugh uncontrollably, with full breath without a coughing attack, which is something I have not been able to do in over a decade so I realized that, like Tom Galli described it above, This BEAST, and COPD had robbed me of who I was and I became overwhelmingly emotional and my wife and I cried and gave thanks to God and these treatments. I am scheduled for number nine on Tuesday with complete bloodwork and a visit with my Onc but do not know if I will be tapered off the Prednisone enough for the treatment but will be ready for treatment whenever I am, feeling better and soooooo greatful,  thank you all......Charles
  3. Like
    PaulaC reacted to Shelkay1 in BRAF Mutation   
    Hello all! I thought I'd update you all on what's been happening. I started the targeted therapy drugs Tafinlar/Mekinist on 4/14 for my BRAF V600E mutation. Not too many side effect until about 5 weeks in, then I started with fever, aches & headaches. My doctor had me take a break from them for 5 days; I restarted them; symptoms returned a couple days later. I was advised to stay on them unless my temperature got over 103°, tough but I stuck it out. My scan to see how they were working was on 6/10... after just a short time I am NED!! 3 tumors just gone!
    I'll be staying on the meds (smaller dosage) for as long as they keep doing their job. Effects are less now & I'm feeling a lot more hopeful about my future. I've been staying away from this and the FB lung cancer group I'm on, trying not to dwell too much on my own cancer & just live the best life I can in spite of it. But I did want to give you all my good news!
  4. Like
    PaulaC reacted to Jane Lee in Durvalumab   
    Hi Dura recipients
    Just thought I would give an update.  I can hardly believe this.  My lung specialist and the radiation specialist both consider that the tumour in the bottom lobe of the right lung has died from the radiation and chemo.  But the radiation has caused that lobe to collapse so they can't actually see the tumour.  I am assuming that because there is no sign that the tumour has spread or progressed that they think it is dead.  Apparently. they do not do anything about the partially collapsed lung because it is too damaged from the radiation.  Accordingly, the Dura kills any new tumours that might try to form because there is a very high likelihood of re-occurrence.  At this stage, I refused to think about re-occurrence.  What a shock, I read all these things on Dr Google about syringes and tubes to try to extrapolate the air or fluid in the lung to help it re-inflate and they don't do any of that in radiation cases - they just simply leave it alone.  Wow, no oncologist for six weeks and the radiation specialist doesn't want to see me again.  Only have to do the Dura once a fortnight and a blood test once every four weeks.   It feels so surreal.  I feel I am getting a second chance at life so I am staying on my current regime - no alcohol, no cigarettes, keeping processed foods to a minimum and as much walking as possible.  They have even told me I can begin to lose weight (need it especially after putting on so much with the predisone).  I actually wondering whether as a beginner to this lung cancer stuff that I am just being naive??????
    Thank you all for your love, support and encouragement.  It is so lovely to hear from people in the same predicament as yourself.  I must have a look at all of the ASCO abstracts.
    Kind regards
     
    Jane Lee
  5. Like
    PaulaC reacted to rginsky1 in MO's Obituary   
    I'm not sure if you will see this, but i just stumbled across this message board. you all have such kind words to say about my mom. Here we are 15 years later and i love that i can still find stuff from time to time about her on the internet.  I remember her often talking about her message board friends and chat friends, how they helped her feel better when she was feeling sick and hopeless (which she hid very well). Thank you all for being so supportive to her and offering such kind words. 
    Randa Ginsky
  6. Like
    PaulaC reacted to Barb1260 in Durvalumab   
    Thanks for the support. I honestly can’t complain. Others are far worse off than I am. My minor issues are temporary. I’m thankful I wake up, can breathe, have a job to go to because lord knows I gotta have a place to go every day to keep me sane. Now to figure out how to get a beach trip squeezed in somewhere. 🏖
  7. Like
    PaulaC reacted to Rower Michelle in What happens when Tagrisso stops working?   
    Hi Marie-
    I am an ALK mutant taking an inhibitor drug very similar to Tagrisso.  We all learn to live with the uncertainty of what to do when our magic pills stop working which can be YEARS from today.  So for now I live life everyday, laugh and try to do at least one fun thing each day.   While I’m no longer working, my life as a continuous learner continues.  I’m into tai chi ( but not very good at it yet so who cares? )  and learning this whole Food as Medicine thing in the hopes of increasing the length of the inhibitor ride.
    Ask your onc what the Plan B is if it gives you some peace of mind. (sometimes EGFRs go onto a chemo cocktail successfully) like Carbo/Taxol.  My onc gave me Plan B & C with the hope in another year or two there’s going to be a next gen inhibitor around  
    With all the EGFR research ongoing, clinical trial participation is a strong possibility.  I’d like to think that when the time comes, there will likely be a new & better treatment even possibly a cure on the horizon. 
    Try not to let the black cloud take up too much space.   
    You might find some more specific answers on the EGFR Facebook page.
    Michelle
     
  8. Like
    PaulaC reacted to Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    Thank you @Tom Galli! I told my mom this and she feels a lot better about having the procedure! The oncologist has already put the order in for it, and I plan to call tomorrow to follow up on it. Hopefully she will have it done tomorrow! 
  9. Like
    PaulaC got a reaction from Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    Katum31 welcome and I don’t have anything to add other than I love your attitude and drive for answers. 
     I’m like Lexi I want control but my kids have been my backup. They’re just has involved in all steps of my treatment and health. 
    Continue to let her know how strong she is. 
    Take Care
    Paula
  10. Like
    PaulaC reacted to ale in Mom newly diagnosed with Stage IV NSCLC   
    Thanks, Lexie, I read yours message every day...in Italy there are not site like this for Lc... thanks!
  11. Like
    PaulaC got a reaction from LexieCat in Mom newly diagnosed with Stage IV NSCLC   
    Katum31 welcome and I don’t have anything to add other than I love your attitude and drive for answers. 
     I’m like Lexi I want control but my kids have been my backup. They’re just has involved in all steps of my treatment and health. 
    Continue to let her know how strong she is. 
    Take Care
    Paula
  12. Like
    PaulaC got a reaction from Curt in Mom newly diagnosed with Stage IV NSCLC   
    Katum31 welcome and I don’t have anything to add other than I love your attitude and drive for answers. 
     I’m like Lexi I want control but my kids have been my backup. They’re just has involved in all steps of my treatment and health. 
    Continue to let her know how strong she is. 
    Take Care
    Paula
  13. Like
    PaulaC reacted to Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    @Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
    @LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
    @Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!
  14. Like
    PaulaC reacted to Rower Michelle in Mom newly diagnosed with Stage IV NSCLC   
    Hello- welcome to your new family.  I’m one of those Stage IV healthy people.  It’s more common than any of us could have ever imagined.   You might want to check out Diana Lindsay’s “Something more than Hope”.  She shares her survival story as an EGFR mutant which is so inspiring.  Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message.   It’s so on point!   The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment  
    Another terrific resource is Anti-Cancer Living.  Lots of great information in there too.  
    In addition, Facebook has some great support for EGFR & the Exon 20.   
    Knowledge is power & hope is the driver on this road.  There’s so much hope on the horizon with all these clinical trials.  Stay strong.  We’re here for you! 
    Michelle 
  15. Like
    PaulaC reacted to LexieCat in Mom newly diagnosed with Stage IV NSCLC   
    It's great that you are doing so much research and are willing to advocate for your mom.  I don't know your mom, but I do know this about myself.  For me, even though I value the support and input of my family, I would not be comfortable turning over all the information and decision-making to them.  At least as long as I am capable of doing so, *I* want to be the person making fully-informed decisions about my own treatment.  So make sure you aren't shutting your mom out or making her feel like she doesn't need to know what's going on.  Some people (like Steff's mom, apparently) really don't want all the details.  But a lot of us do.  Everyone is different.  Just be careful that in the interest of doing what you can to help you don't discourage her from taking an active role in her own treatment.
    I hope you don't take offense--none was intended.  It's great to have kids who care so much.
  16. Like
    PaulaC reacted to Susan Cornett in Mom newly diagnosed with Stage IV NSCLC   
    Hi Katum and welcome. Not sure what part of H-Town you are in - I'm originally from Friendswood. Your mom's story is so similar to many others. One of my high school classmates called me in January with a similar story. She had hip pain that wouldn't stop; docs finally found a tumor and discovered it was lung cancer. She had radiation for the hip and is on an oral chemo for the primary. 
    Steff nailed it - lung cancer is just not the death sentence it once was. We've seen so many new treatments and it gives me hope. I'd like to see us get to the point of being able to treat this as a chronic disease. I strongly suggest ignoring the statistics - they just don't reflect where we are today. Stay informed and stay positive - that's the best way to move forward. We're all here for you and your mom. 
  17. Like
    PaulaC reacted to Rower Michelle in BRAF Mutation   
    Hey Shelkay-
    I watched the  March 19th Lung Cancer Living Room from the Bonnie J Addario Foundation this past week on YouTube.   It’s two hours but you can skip over the introductions if you’re short on time for the 1 hour presentation by Dr Carbone.  He talks about the future of LC treatment in terms of finding a cure.  
    The most exciting report was the future for the mutants!  It looks like the industry is moving toward combination of inhibitors to overcome treatment resistance.   Similar to HIV disease researchers are looking at cocktails instead of mono-therapies to treat LC mutants.  
    I don’t think you’re going to find much information out there as you’re definitely diving into trailblazer land.   The fact the your oncologist is looking at treating the cancer at the molecular level instead of an organ sounds very encouraging to me.  
    Please keep us posted!  Blaze on!
    Michelle
  18. Like
    PaulaC reacted to Kleo in Durvalumab   
    Hiya Fellow Durva folks! Anybody miss me? 🤣
    How's everyone doing? I started working again...supposed to be part time but...well...they keep increasing my hours. LOL
    Doing much better now...back at my durva infusions. Caught that nasty bug that was going around but a quick dose of antibiotics fixed it.
    All the muscle pains in my side and back went away with the steroids. Now I just have a sore shoulder thing. I'm looking into physical therapy for that I guess. Doc says it's just me...not cancer related. I get the weirdest stuff. 😁
    Hope everyone here is doing good! I don't get to drop in as much as before with all the working. Meh
     
  19. Sad
    PaulaC reacted to Barb1260 in Durvalumab   
    We have to put ourselves in enormous debt to live?  There is something definitely wrong here. 
  20. Like
    PaulaC reacted to Rower Michelle in Durvalumab   
    Yes Barb the whole money thing is so completely ridiculous. I’ve just decided to develop a different orientation to zeros & not worry about it.  I see brochures all over KU espousing their low cost payment plans.  So figure that you’re getting Mercedes healthcare with a Camry type payment. Negotiate, negotiate & negotiate.   
  21. Like
    PaulaC reacted to Rower Michelle in Durvalumab   
    Hey guys- Something interesting happened today during my acupuncture appointment with the hippie doctor.  He asked if I would be willing to be interviewed by a first year med student taking his class on Introductory Integrative Medicine.  She’s already learning about the importance of bio-marker testing!  She had a pretty good working knowledge of it.  So there is hope for the next generation of docs if medical schools are teaching this stuff to the pups.  
    They are also being trained to be more curious about lingering coughs that do not respond to antibiotics or allergy meds.   Sounds like we’re making some progress.  
    This gal was excited to meet a real LC mutant- not just one on paper.  LOL.  
  22. Like
    PaulaC got a reaction from Tom Galli in Durvalumab   
    👏👏👏 for no cancer but sorry you went through a hurtful process. 
  23. Like
    PaulaC reacted to Eagle13 in Durvalumab   
    Here is a good link that describes the PET and the differences from a CT.
    https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
    My personal experience has been insurance wont approve the more expensive PET unless the Dr has a pre-scan approval discussion with the ins company Dr.  The PET is newer more advanced technolgy where the CT is the main stay.
    You should ask for a copy of each scan from each provider along with the radiologist report.  Its your medical record.  I have personally taken my scan results to get second and 3rd opinions from no kidding top notch experts.  
    Don’t be afraid to demand the genetic biomarker testing.  This is what changed direction for me after the Durva was not working.
     
    🦅
  24. Like
    PaulaC reacted to Robert Macaulay in Durvalumab   
    Kleo
    Feeling lot better today my Stomach muscles are still sore from all that coughing feels as if i did five situps in  succession. lol  When you are on Durvalumab i thought i read it is not advIsable to take Antibiotics ,I asked the doc if she had anything and she never replied so i said what about store bought products and she agreed.So couple of Mucinex a day and couples swigs of Robitussen will get me back to normal what ever normal is these days.  lol.
    I got my curve ball thrown at me with the coughing  hours after the infusion and was fully expecting to be given Predisone and the treatment stopped. You just got a fast ball thrown at you today and i fully expect i will get one someday as all cancer patients do during treatment . I am expecting a phone call early next week as my oncologist is back and looks at my scan from yesterday and compares it to Oct-29 results I might also be whistling Dixie or my favourite  Que sera sera.
    The positives is they done the right thing giving you the Pet Scan and both doctors will come up with a new game plan based on what they interpret from the skin flick.  lol
    Get your appointment book ready for 2019 and away we go again. Hi Ho Silver
    Bob
  25. Like
    PaulaC reacted to Roz in Durvalumab   
    Kleo,
    I don't think there are any words that really help when dealing with all of this. Just know that there's a whole group of us here that are routing for you and continuing to send positive vibes and support your way. Waiting for your update after you see the onc...
     
    Best,

    Ro
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