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Curt

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  1. Like
    Curt reacted to Charles in Durvalumab   
    Tomm
    3b here, chemo and radiation knocked a lot of the stuffing out of my tumor as it has shrunk considerably but cannot claim remission at this time. As of 1st initial CT and PET's, no new metastasis with uptake 19 less than first PET. Have had 5th infusion of Durva today and so far, no new side effects. Side effects so far have been fatigue, vision a little blurry at times (very little) and minor twinges here and there with inflammation and cough that comes and goes with the help of Ibuprofen and generic mucinex. I did have to visit the E.R. and take prednisone a week after the 2nd infusion because of a nagging pain in the liver area and under the right arm but turned out to be inflammation so the prednisone took care of it without having to take it enough to taper off. Very glad to hear your remission story and pray I will be able to stake my claim in that department very soon, and no hair loss here either.
  2. Like
    Curt reacted to Tomm in Swollen lymph node, should I worry?   
    Remission again!!!  NED..  I had SBRT radiation 30 times with a total 6360 grays. I had 5 rounds of chemo but missed the last one as my liver numbers were not good. I ate 3 grams of pot oil a day.  Blood work all back in normal range. I have a gene mutations of the PDL-1 with 95%>  positive. I start Durvalumab on April 18th for a year.   I'm on my way to the Durvalumab link to join the other explorers of this new med.
    Best of luck to my fellow travelers
     
  3. Like
    Curt reacted to Rower Michelle in Starting chemo on Tuesday   
    Hi Claudia-
    Just checking in. How are things going for you?
    Michelle 
  4. Like
    Curt reacted to Rower Michelle in Introduce Myself   
    Hi Jeanie-
    It’s nice to meet you too.  I’m a ALK Positive mutant.  I’ve been taking Alectinib (which is in the same drug class as Tagrisso a TKI) for Stage IV NSCLC.  Like you I had no known risk factors for lung cancer.  The diagnosis came as a complete shock. 
    In fact, the Bonnie J Addario Foundation just posted a white paper reflecting 90% of lung cancer mutants are diagnosed at Stage IV.  We are not alone! 
    Hubby & I have been through the emotional roller coaster: now almost seven months later we are settling into the new normal.  My symptoms improved immediately after the first dose.  I’ve got some of the TKI side effects however I’ve worked with my doctor’s to manage them.  All the mutants here have tips on this too.  
    I want you to know eventually the good days will outnumber the bad ones.  At some point in the near future your “battle rattle” will kick in.  You will be able to enjoy life again.  Cancer may have slowed me down but I am determined no to let it break my fun meter!  
    Every day I wake up planning to do something fun.  Today is my acupuncture day (like a spa treatment) & I will take me recumbent trike out for a spin.  
     I also participate in an Integrative Oncology Program (aka my hippie protocol).  In addition to a number of supplements I receive weekly acupuncture to mitigate the TKI fatigue. We are trying to follow a plant based diet too.  Does the clinical trial have any restrictions regarding Integrative Medicine?  MD Anderson has a great program.  
    I’d love to learn how you were enrolled in a clinical trial.  Ask whatever you want as there’s so much experience in this group. 
    Welcome to our group! 
    Michelle 
     
  5. Like
    Curt reacted to LexieCat in This is a cool story   
    The guy who invented immunotherapy, who won the 2018 Nobel Prize for his work: https://www.washingtonpost.com/nation/2019/03/25/texas-scientist-was-called-foolish-arguing-immune-system-could-fight-cancer-then-he-won-nobel-prize/?utm_term=.a2ba548a4ffa
     
  6. Like
    Curt reacted to Rower Michelle in Durvalumab   
    Hello Opal- Fellow Jersey Girl here.  Exit 150.  
    Yes a MRI can show cancer on your spine.  
    Totally understand your situation.  I’m really hoping  you have a mutation.  If that’s the case you might not need radiation- I had spinal Mets at the time of my diagnosis.  I was too numb to be terrified.  The onc said he wasn’t worried about it so I didn’t dare go to Dr Google. The targeted treatment knocked out the cancer in a few weeks.  No radiation required.  The MRI showed the cancer on the spine is gonzo.  
    Stay Jersey Strong
    Michelle 
  7. Like
    Curt reacted to Tom Galli in Chemo question Stage 4 Squamous   
    Wandalee,
    Welcome here.
    I'll expand on Curt's explanation.  We don't use the word cure in the lung cancer community.  That is because any form of lung cancer has a high probability of recurring after successful treatment.  I was diagnosed with Stage IIIB non small cell squamous cell lung cancer.  I had a total of 4 recurrences after successful treatments.  That is why we use the term no evidence of disease or NED as our goal for treatment.
    Here is some information on lung cancer recurrence.
    Four to six rounds of chemo may eliminate your friends lung cancer, it may decrease the tumor burden, or it could do nothing at all.  I'm hoping elimination is the outcome.
    Stay the course.
    Tom
  8. Like
    Curt reacted to Wandalee in Chemo question Stage 4 Squamous   
    Curt and Tom,
    I greatly appreciate your replies and Tom, your post on recurrence is very helpful. It is so meaningful to receive these explanations from you gentlemen in the trenches that I'm certain are knowledgeable.
    Tom, your journey sounds incredible. When I have some time I hope to read more of your story within your posts. Oh, and I just learned that you blog! 
    I learned today that our friend is receiving Keytruda concurrently with her chemo. 
    Again, thank you both heaps!
  9. Like
    Curt got a reaction from BridgetO in Tightness..like a rope around you!!   
    Hi Marci.  Welcome.  I had a RUL lobectomy about six weeks ago.  I also do not require any follow up.  I understand feeling blessed but guilty.  I don’t have a tightness in my chest when I breathe but when I cough or sneeze there is a pulling (almost ripping) feeling inside.  It is really frustrating.  I am told that internal scarring is an issue with this surgery.  Did you or are you still using the spirometer for breathing exercises?   That may help.  Have you consulted a pulmonologist?  The surgeons are good at cutting things out of you, but it’s good to have a pulmonologist on board for overall lung health.
    Given your familial link I’d also recommend biomarker testing, both somatic testing of the tumor and germline testing of any genetic markers you have in your DNA.  Even though you don’t require follow up testing having that information is valuable to you and your family members.  
  10. Like
    Curt reacted to MarciD in Tightness..like a rope around you!!   
    Thank you Curt!!   I met with a pulmonologist June 2018 and he said to see him in another year. I may try to schedule an appointment sooner than June see if I can get any information regarding this “tight rope“.    If it doesn’t show up on an x-ray or CT, I’m not sure they could figure out what it is! I feel like it does restrict my breathing and feels like a heaviness on my chest and around me. I am anxious to see if anyone else has experienced this and what, if anything, was able to be done. I am so very happy I found this site... just sorry I didn’t look sooner. Well I’m here now and looking forward to maybe getting some answers and also I would love to be able to help anyone I could from the diagnosis to post surgery.  My brother always tells me that I want to take care of everyone and I guess that is true. I truly believe I am in the company of some amazing, strong and caring individuals.
  11. Like
    Curt got a reaction from Tom Galli in Tightness..like a rope around you!!   
    Hi Marci.  Welcome.  I had a RUL lobectomy about six weeks ago.  I also do not require any follow up.  I understand feeling blessed but guilty.  I don’t have a tightness in my chest when I breathe but when I cough or sneeze there is a pulling (almost ripping) feeling inside.  It is really frustrating.  I am told that internal scarring is an issue with this surgery.  Did you or are you still using the spirometer for breathing exercises?   That may help.  Have you consulted a pulmonologist?  The surgeons are good at cutting things out of you, but it’s good to have a pulmonologist on board for overall lung health.
    Given your familial link I’d also recommend biomarker testing, both somatic testing of the tumor and germline testing of any genetic markers you have in your DNA.  Even though you don’t require follow up testing having that information is valuable to you and your family members.  
  12. Like
    Curt reacted to MarciD in Introduce myself   
    Hello everyone! My name is Marci and I live in Ohio. I had my first lung cancer surgery on the right side in October 2016 and the left side diagnosed and surgery in April 2017.   I did not need any type of treatment after either surgery as all pathology was clean. I felt so thankful and guilty at the same time. I do have a couple questions but I will try to put those in the appropriate places.
    I wanted to say hello and I’m looking forward to being a part of this amazing group.
  13. Like
    Curt reacted to Sandbox in Sandbox   
    I just received a MRI of the brain with and with out contrast their was a cancel so I was moved up this may move start earlier will see had a target XRAYS done last week and need another I guess then will see what treatment options are Brain MRI came back normal Tuesday go for second Target then Wednesday the 10th I start treatment will let you know what treatment is being done
     
  14. 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
  15. 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
  16. 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
  17. 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.
     
     
     
  18. 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!   
  19. 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!
  20. 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.  
     
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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. 
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