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Curt

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  1. Like
    Curt reacted to Rower Michelle in Possible metastasis   
    I’m so sorry to read your update.  Lung Cancer is sneaky & it sucks.  Did your MIL have biomarker testing on the tumor?  That will drive the treatment plan & next steps.  Bone mets are treatable with today’s advances and as a result the survivorship rates is extending.  
    As for clinical trials- the oncology team will be able to help make that assessment.  Clinic trials have many requirements & are only recommended if there is a clear potential benefit. 
    Have faith in your MIL & her treatment treatment team.  Some people opt to get a second opinion if there is progression.  
    Hold onto your hope!
    Michelle
  2. Like
    Curt reacted to PaulaC in Radiation   
    Good morning Suzanne and welcome. I’m sorry for your diagnosis but really glad you found this place. 
    My experience with radiation wasn’t bad at all with the exception of extreme fatigue the last couple of weeks. I did 30 treatments Monday through Friday and it didn’t bother me until about three weeks in. I remember feeling like I couldn’t walk into the treatment center that last week. My suggestion is rest when your tired and get up and walk when you can. I didn’t have any type of skin problems from my radiation but some have. 
    Im glad you found us and I know others will be here to help. 
    Take Care
    Paula
  3. Like
    Curt reacted to PaulaC 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
  4. Like
    Curt got a reaction from LouT in 3 Week Lobectomy Follow Up Tomorrow   
    Staged 1A NSCLC Adenocarcinoma with EGFR exon 19 mutation.   No lymph node involvement.  Surgeon felt all went well.  Did not recommend any  follow up treatment, just CT’s every six months.   Gave me a 10% chance of recurrence.  I still can’t get my head around this all.  I feel incredibly lucky to have found it as early as I did, but also can’t shake the feeling that this is something I will worry over forever.
     
     
     
  5. Like
    Curt got a reaction from Sandbox in Sandbox   
    Hi Sondbox and welcome.  I am sorry to hear about your diagnosis.  I’m glad you found this site.  It’s provided a lot of help for me.  Good luck with your treatments and thank you for your service!   
  6. Like
    Curt 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!
  7. Like
    Curt got a reaction from Blerton in Dad has mets in bone   
    Definitely don’t stop studying just because your dad’s sick.  If you have to take time off to help care for him that’s one thing, but throwing in the towel on school will have long term repercussions.  I’m sure you want him to fight through this, you should too.  Having a loved one going through this is a really helpless feeling.  I did it with my father.  I completely understand questioning what the point is to something as seemingly meaningless as school when something like this is happening to someone you love.  Having something to look forward to like your graduation could be the motivation your dad needs to keep fighting.  He won’t want to miss that and will surely fight to be there.  
     
  8. Like
    Curt reacted to BridgetO in New italian caregiver   
    Ciao Ale,  It's normal to be afraid when someone you love has cancer!   I don't know if an operation will be possible in the future. Usually operations are only done for small early-stage cancers usually stage 1 but sometimes stage 2. 
    Note to other forum members who don't speak Italian: you can easliy get   translations from any language on Google Translate.
  9. Like
    Curt got a reaction from Kate7617 in Mom newly diagnosed with Stage IV NSCLC   
    Hello.  I am sorry to hear about your mom’s diagnosis.  Lung cancer is a disease that grows quietly and is often discovered because of symptoms unrelated to the lungs.  It is usually a huge shock.  I am also a “mutant” with a Stage 1 NSCLC Adenocarcinoma with an EGFR Exon 19 deletion.   Like Lexi mine was caught early enough and was able to be treated with surgery.  I won’t have any follow up treatment.  The EGFR exon 20 mutation is one of the rarer mutations.   I do believe that the current TKI treatments, which Tagrisso is one, have been found to be ineffective with the exon 20 mutation.  I do believe there is a new TKI drug being developed called TAS6417.  This is all information you should consult with your doctor on.  Like Michelle said, research and treatments are moving quickly.  I found this link on TAS6417  https://www.biospace.com/article/releases/taiho-pharmaceutical-and-cullinan-oncology-establish-collaboration-to-develop-tas6417-novel-egfr-tyrosine-kinase-inhibitor/
    I’m glad you found this site (but sorry you had to), check back with questions and updates when you need to.
  10. Like
    Curt got a reaction from PaulaC in TB with lung cancer??   
    The not knowing is what many people (and their loved ones) struggle with most about cancer.  I went through that with my dad and spent the last year going through it myself.  Doctors tend not to speculate on things.  They prefer to follow the evidence until there is a clear diagnosis.  I’m sure there are ethical and legal reasons why they have that approach.  If you are feeling frustrated it is perfectly reasonable to seek a second opinion.
  11. Like
    Curt got a reaction from LexieCat in TB with lung cancer??   
    The not knowing is what many people (and their loved ones) struggle with most about cancer.  I went through that with my dad and spent the last year going through it myself.  Doctors tend not to speculate on things.  They prefer to follow the evidence until there is a clear diagnosis.  I’m sure there are ethical and legal reasons why they have that approach.  If you are feeling frustrated it is perfectly reasonable to seek a second opinion.
  12. Like
    Curt 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. 
  13. Thanks
    Curt got a reaction from 06211219 in TB with lung cancer??   
    The not knowing is what many people (and their loved ones) struggle with most about cancer.  I went through that with my dad and spent the last year going through it myself.  Doctors tend not to speculate on things.  They prefer to follow the evidence until there is a clear diagnosis.  I’m sure there are ethical and legal reasons why they have that approach.  If you are feeling frustrated it is perfectly reasonable to seek a second opinion.
  14. Like
    Curt reacted to Steff in Mom newly diagnosed with Stage IV NSCLC   
    Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
    Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
    My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
    I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  
  15. Like
    Curt got a reaction from Tom Galli in Dad has mets in bone   
    Definitely don’t stop studying just because your dad’s sick.  If you have to take time off to help care for him that’s one thing, but throwing in the towel on school will have long term repercussions.  I’m sure you want him to fight through this, you should too.  Having a loved one going through this is a really helpless feeling.  I did it with my father.  I completely understand questioning what the point is to something as seemingly meaningless as school when something like this is happening to someone you love.  Having something to look forward to like your graduation could be the motivation your dad needs to keep fighting.  He won’t want to miss that and will surely fight to be there.  
     
  16. Like
    Curt reacted to Steff in Dad has mets in bone   
    Blerton,
    I echo Tom's suggestion about continuing your studies.  As a caregiver and care advocate, I know how easy it is to put your life on hold to help care for your loved one.  But the reality is that our loved ones likely don't want us to do that.  After all, we all have lives to live and no matter what happens with  your dad's lung cancer, he will likely pass before you.  You have the rest of your life to live after that.  Education greatly effects life, not only with job possibilities, but with wisdom and knowledge that enhances our overall life.  But this is all coming from a knowledge junkie.
    As Tom said, here in the US, bone mets are being treated very aggressively with positive results.  Just because surgery isn't an option and the lung cancer has metastasized does not mean there is a death sentence attached.  There are new and improved treatment options available every day, which means the days of lung cancer being an automatic death sentence are gone.  
    Your lost feeling, your questions about your own life, and any other negative feeling is all normal with a lung cancer diagnosis.  But feeling lost eventually subsides and the negative feelings turn into motivation to learn all that you can to be a good advocate for your dad's medical treatment.  I am happy you have found LUNGevity and know that we are here for you.
    Take Care,
    Steff
  17. Like
    Curt reacted to Tom Galli in Dad has mets in bone   
    Blerton,
    Welcome here! I note you are from Serbia. 
    I also had neoadjuvant chemotherapy and conventional radiation to shrink my squamous cell tumor before surgery.  In my case, my tumor size was reduced enough to permit surgery. I recall investing a lot of hope in my neoadjuvant treatment and so I really understand your dad's frustration.
    In the US, radiation oncologists are getting very aggressive treating tumors, including bone mets, with precision radiation. You can follow this link and read about IMRT, IGRT and SBRT.  I had SBRT following a recurrence after my right lung was removed and it worked. So perhaps precision radiation is a treatment option you might ask about.
    I would encourage you to continue to study and graduate regardless of your dad's treatment experience.  I think he'd encourage you also.
    Stay the course.
    Tom
     
  18. Like
    Curt reacted to Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    Thank y’all so much for the responses and support!  This community really is awesome.
    @Rower Michelle I just ordered that book and had a copy sent to my mom as well! I can’t wait to read it! I will also check out the Facebook groups. Thank you so much for the information!!
    @Curt thank you so much for the response and information as well! I’m so happy yours was caught early on! Thank you for providing the link, and I will definitely check it out. 
    Unfortunately, we just found out that we no longer qualify for the clinical trial to target the brain lesions because my mom has been on steroids. I guess at this point we will just be doing targeted radiation for the lesions and then chemotherapy for the lung cancer and go from there. It’s been a little more than a month since the diagnoses and we haven’t started any type of treatment yet which is the most frustrating part I think. Maybe once we begin, and we are able to feel like we are actually doing something proactive, things will feel a little bit better. 
    I don’t know the success rate of regular chemotherapy on this type of mutation, but I’d imagine clinical trials will be in our future at some point. I’ll definitely be looking into them a lot over the next few weeks/months so we can be prepared if that’s the direction we will be needing to go.
    Again, thank you all for you support, knowledge, and encouragement. I really am so thankful to have found this community! 
     
     
  19. Like
    Curt reacted to Steff in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  20. Like
    Curt got a reaction from BridgetO in Mom newly diagnosed with Stage IV NSCLC   
    Hello.  I am sorry to hear about your mom’s diagnosis.  Lung cancer is a disease that grows quietly and is often discovered because of symptoms unrelated to the lungs.  It is usually a huge shock.  I am also a “mutant” with a Stage 1 NSCLC Adenocarcinoma with an EGFR Exon 19 deletion.   Like Lexi mine was caught early enough and was able to be treated with surgery.  I won’t have any follow up treatment.  The EGFR exon 20 mutation is one of the rarer mutations.   I do believe that the current TKI treatments, which Tagrisso is one, have been found to be ineffective with the exon 20 mutation.  I do believe there is a new TKI drug being developed called TAS6417.  This is all information you should consult with your doctor on.  Like Michelle said, research and treatments are moving quickly.  I found this link on TAS6417  https://www.biospace.com/article/releases/taiho-pharmaceutical-and-cullinan-oncology-establish-collaboration-to-develop-tas6417-novel-egfr-tyrosine-kinase-inhibitor/
    I’m glad you found this site (but sorry you had to), check back with questions and updates when you need to.
  21. Like
    Curt reacted to LexieCat in TB with lung cancer??   
    I imagine it's possible.  And there are lung conditions other than infection that might benefit from treatment.  
    I think those are questions for the pulmonologist.  Tell the docs what you are confused about--insist that they explain what they are looking for and what they are concerned about, and how any of those possibilities might impact the ongoing treatment or response.  I think doctors always want to know what is going on with the patient, regardless of whether it's directly related to the cancer or not.  It could be something related to the treatment, which needs to be reported for future investigation/research, or something related to a person's prior medical history.  There is still so much unknown about cancer and about why/how certain patients respond (or don't) in certain ways, I think all information gathered is valuable in terms of improving treatment.
  22. Like
    Curt 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 
  23. Like
    Curt reacted to LexieCat in Mom newly diagnosed with Stage IV NSCLC   
    Hi there, and welcome.
    I'm sorry about your mom's diagnosis.  Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it.  It's great that she came through the brain surgery so well.  
    We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope.  Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with.  But the others will be along soon.
    Glad you found us--this is a great place for information and support.
  24. Like
    Curt got a reaction from Rower Michelle in Well-meaning suggestions   
    I like that suggestion Steff.  Most people who want to be helpful have no idea how to be.  Especially with illness.  They want to help but feel powerless.  Being vocal about how they can help is great, and it weeds out the people who really aren’t trying to help.  Cooking, offering rides and CLEANING for someone is way more helpful.  When my father was sick my step mom would get so upset because people would always want to visit but it would just make more work for her having to care for my dad AND entertain the guests AND have to listen to them tell her what they should be doing differently   It really started to isolate them.  
    How about a suggestion form?  When someone starts to give unsolicited advice stop them and hand them a lengthy suggestion form that they can fill out with all the information they’ve found, why they think it’s a good approach and whatever supporting research they’ve found.  Tell them you really want to know more about their suggestion and this is the best way you’ve found to keep track of them.  Anyone who actually fills it out may actually have a good suggestion.    
    How about put all your daily and weekly things to do on pieces of paper in a box.  Anyone who wants to offer a suggestion needs to draw a task from the box first.  You can call it a suggestion box.  They can put their suggestion in the box after they pull your suggestions on how they can help out.    
    When my father was sick my step mom, my brother and I provided all of his care   I felt like everyone else in the world were inconsiderate A holes who didn’t know what we were going through   Looking back on it now I realize that they really didn’t know what we were going through, but that wasn’t their fault.  They were coming from a good place, just not executing it well.
    Hang in there.    
     
  25. Haha
    Curt reacted to Steff in Getting over the hump   
    This is me trying to get over the "hump" into Thursday!  Anyone else feeling this way today?!

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