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  1. Thanks
    Curt got a reaction from hope16 in Update ....   
    Hello hope16.  I’m sorry to hear about your husbands new issue.  Recurrence is an unfortunately common challenge of this disease.  Why do you think the liver legion is cancer?  Has it been biopsied?  As with lung nodules, spots on the liver can be something other than cancer.  If it is cancer it is good to know if it is a recurrence of his lung cancer or a new cancer.  Did your husband have biomarker testing done of his lung cancer? 
    Hang in there.  
  2. Like
    Curt got a reaction from linda018 in Just starting this journey...   
    Hang in there Linda.  Once you settle into a treatment path things will start to get better for you.  Squeeze the good news tightly.  
  3. Thanks
    Curt got a reaction from Debby eastwood in Husband diagnosed   
    Hi Debby.  I’m sorry to hear about your husbands diagnosis.  Lung cancer diagnosis are usually shocking and often the result of testing for other ailments.  The initial days after diagnosis are tough.  Many describe it as a fog of emotions.  I would recommend a healthy diet of things that your husband enjoys for now.  Just eating anything when he’s under this much stress is tough.  Trying to make a wholesale change in his diet right now may make eating even tougher.  Once you have a treatment plan in place you can alter his diet to help boost energy and to offset side affects from treatment.   Most cancer centers either have a dietitian in house or can recommend one that they work with.  You’ll hear from others on here who will have their recommendations and experiences  
    Hang in there .  There are affective treatments for Stage IV cancer and new drugs being released.  There are also a lot of ongoing clinical trials.    
  4. Like
    Curt got a reaction from Brian1969 in Bronchoscopy and EBUS today   
    Good luck Brian. 
  5. Like
    Curt reacted to Rower Michelle in Update ....   
    Hello my dear friend, 
    I'd like to echo the words of both Steff and Curt.  When I saw your post it occurred to me that your hubby was also practicing some complementary therapies.  It's quite possible the lesions in the liver could also be from supplements.  I had this happen in my 30s.  For now, I will  lend you the ALK Positive team bible verse: Joshua 1:9.  We are always here for you.  Please let us know what the next steps are and we can wind up the prayer posse for you.  
  6. Like
    Curt reacted to Steff in Update ....   
    Hi Hope16,
    I am sorry to hear about this new finding with your husband.  I echo Curt's question, has the lesion been biopsied/how do they know it's cancer?  My mom has had a nodule pop up on some CT's of her abdomen that was not noted a few years back.  It's likely nothing and we wouldn't know anything about it unless she was having all of the scans like she is now.  Weird things pop up all of the time that we would never know about but because she is getting scanned all of the time, we see them.
    That being said, if the lesion is lung cancer progression, it is not the end of the world.  I thought it was when my mom was diagnosed with her progression.  I thought she was going to die tomorrow and there was no hope, that was until I found LUNGevity and met those who have had several recurrences and are continuing to live their lives despite lung cancer.  My mom is one of those people now.  Your husband can be too.  Advancements in treatment have come a long way.  My mom has no evidence of disease once again because of those advancements. Lung cancer progression is no longer a definite death sentence. 
    We all get those "why me" moments, caregivers and patients alike.  But don't throw in the towel yet.  Please keep us updated and know that we are here for you.
    Take Care,
  7. Like
    Curt reacted to We got this in 1/2 way CAT scan results   
    Hello! (Excitement noted)
    30 radiation treatments completed over three weeks time and two rounds of chemo completed.
    CAT scan completed last Friday... results reviewed by oncologist this morning.  Tumor 1/2 the size seen on 3/1 .... lymph nodes also decreased in size.  
    Everyone was very positive with the results to date.  I certainly am.
    two more cycles of chemo (one going in as I write)
    made appointments for next cat scan end of next month and a new mri.
    thank God for the results “we got this”
  8. Like
    Curt reacted to Susan Cornett in JohninTx   
    Hi, John. Sorry to hear about your diagnosis but glad you found us. If you're comfortable sharing, tell us a little about your diagnosis and your treatment plan. Here's my unsolicited advice to you and all of the new members: don't Google statistics. They don't accurately reflect the new treatments we've seen in the last few years. 
    Ask us anything. We've all been in your shoes. 
  9. Like
    Curt reacted to Rower Michelle in JohninTx   
    Hi John and welcome to our group. 
    I'm also a Stage IV ALK Positive NSCLS survivor.  I received this surprise diagnosis in September, 2018.  I read a white paper recently that indicated 90% of lung cancers are diagnosed at Stage IV.  You're not alone; as we've all been there.  It took me about 3 months to get my bearings again.  What type of treatment are you currently receiving?  Let us know how we can support you.  You'll find this is a very supportive group where you can say anything, ask anything.  
    Looking forward to getting to "know" you, 
  10. Like
    Curt reacted to LouT in JohninTx   
    I was diagnosed with LC in early March and just had my surgery.  I completely understand how you feel.  In my case it wasn't a fog, but it felt like my life had been put on fast forward and was out of control.  As you can already see there are a lot of people here with similar experiences that can provide some good sharing and support.  Try to stay calm, work with your medical team and learn all you can about your illness.  Knowledge can be power as you participate with your doctors in putting a treatment plan together.
    Share as much as you'd like, we've all been there.
  11. Like
    Curt got a reaction from Roz in JohninTx   
    Welcome John.  I’m sorry to hear about your diagnosis.  I completely get the post diagnosis fog.  I’m glad to hear it’s starting to lift for you.
  12. Haha
    Curt got a reaction from MBinOregon in Get Ready, Set, Row   
    Awesome.  I don’t see any fishing pole holders or room for the coolers on that boat.  Where do you put the beer and fish you catch 😉.   
  13. Like
    Curt reacted to Susanrae in stage IV lung ca diagnosis with brain mets   
    Thanks so much for the welcome!   I do have non small cell lung ca, adenocarcinoma.  Tom, are these my type and subtype?   I am currently waiting for results of my Lung Panel to determine which of the targeted/immunotherapies would be best for me.  Hopefully, the results will be back early this week.  The Mayo Clinic in Rochester, MN, is taking good care of me.  I do feel I am in good hands.
    Donna G:  are you receiving treatment in the Twin Cities?  
    Thanks again for the Welcome!  It is SOOOOOO nice to hear from others that are going through the same thing and I truly appreciate all of your words of encouragement.  What a lifesaver!  I really needed the boost!    Take care all of you.
  14. Like
    Curt reacted to We got this in Introducing   
    Thanks for the responses.  Been a long journey over the past two months.  Two weekends in the hospital due to low  levels of blood counts and potential infection.  However not this weekend.  Tomorrow is more blood work in preparation for Tuesday which starts another chemo  round (Tuesday Wednesday and Thursday).  Had the 1/2 way CAT Scan on Friday and have an appointment with the oncologist on Tuesday before chemo to get the progresses report from the cat scan.  What I do know is small cell lower left lobe - involved two lymph noids in the same lung with no indication that it progressed beyond the lung.  Doctor indicated limited stage.   He said curable ....  Hope and pray he still has the same thoughts on Tuesday.  Had 30 rounds of radiation twice daily over three weeks.  Graduated from that.  Two more chemo rounds left.  
    Would love to discuss with others and support others in the same situation.  We can not win this alone - but WE GOT THIS together.
    Hope everyone had a great Mothers Day - I did get out to go to the movies with daughter, wife and future son in law.  Wedding is a little more than two months away.
    Anyone else experience loss of voice due to the tumor laying on the nerve that runs back up to the voice box?  How long did it take for your voice to come back?  Did they discuss the possibility of ENT (Ear Nose Throat) doctor having to inject the vocal flap?  
    Lost over 30 pounds due to the burning in the esophagus.  That appears to be getting better but not 100% yet.  Also noted today - two weeks after radiation was over that I started two feel burnt on the skin across the chest.  Used some cream on it today but not much better.
    Thanks for this group!
    God Bless...    Ken
  15. Thanks
    Curt got a reaction from We got this in Introducing   
    Hello, welcome.  Sorry to hear about your DX.  I was diagnosed a few days before that.  My treatment was surgery so far.  We do have this!   
  16. Like
    Curt reacted to LouT in Introducing   
    Welcome to the group.  Like Curt my diagnosis was around your time and I'm now recovering from my lobectomy.  You'll find a great group of folks here that can share first-hand experience.  While I have not had chemo, many others have and you'll also get great tips on working through the medical system and life in general (especially through the tough times).
    And yes...I'm with you and Curt, "We Got This".
  17. Like
    Curt reacted to Tom Galli in stage IV lung ca diagnosis with brain mets   
    Any place is a good place for an intro. We’ll find you!
    Sorry to learn of your DX and hope you are recovering from surgery. 
    You said stage IV, do you have info on your primary lung tumors. Thinking your brain tumor is a distant metastasis. Are they biopsying the brain tumor. It is pretty common these days but ensure your biopsy seeks to identify bio markers for Targeted Treatment or Immunotherapy. Your biopsy should also identify your type and subtype of lung cancer. These last two are important because treatment plan design hinges on identity. 
    Questions? Ask away. Welcome here. 
    Stay the course. 
  18. Like
    Curt reacted to Isabelle49 in Lou vs. the Chest Tube   
    And, Lou, don’t wait until your pain gets bad to take the pain meds. If you wait, the worsening pain will cause increased anxiety and pain meds don’t often work well in that situation. As an RN in recovery room years ago, we often had to give paitients Valium or another benzodiazepine to bring them down enough so that the pain medication would work. I wish you the best.
  19. Like
    Curt reacted to MBinOregon in Celebrating 1 year Pneumonectomy Anniversary   
    Thank you, Lou.
    It wasn't easy, but you can do it if I did with missing my right lung😉 Right after I came home, it was rather shocking for me to go up to the second floor of my house and have to sit down to catch a breath.  By the end of the first week, I walked to my subdivision's mailbox area to pick up my mail, but turned and looked at my house that seemed like it was a mile away (we're talking  maybe 100 ft in reality 😁).  The whole time (well since the diagnosis) I didn't know HOW I was going to do it, but I've never once thought I wasn't going to do it.  I guess it's probably because I've never felt I had a luxury of being a cancer patient since I don't have any family or someone to take care of me.  Regardless, I believe attitude matters a great deal in this journey.
    I wish you a fast recovery 🙏 and keep it touch with us, this is a great place for support whenever you need it. 
  20. Like
    Curt reacted to KatieB in NYC- Advocacy Opportunity Updated 5/10/19   
  21. Like
    Curt reacted to Rower Michelle in Just diagnosed with Stage IV adenocarcinoma with EGFR mutation   
    Most Welcome Joe!  I didn’t find this forum until week 5 of my diagnosis so I remember vividly  how terrible it was. 
    Heres another tip- I email my onc a list of questions prior to my appointment.  I never went to a business meeting without an agenda so it’s the same principle.  He knows what I’m expecting then has time to prepare.  
    Now as for the beet juice- that’s a Lungevity Forum Original from another EGFR mutant “Eagle”. He’s on Tagrisso too.  I asked my Integrative Onc about it too.  These drugs are pretty heavy on our liver function (bye bye alcohol).  Beet juice is a natural liver cleanser.  For some reason it does a nice job managing the TKI (name of drug class) edema.  These puppies are so new that you won’t find any web links. The docs don’t know and would happily prescribe Lasix for edema.  In my opinion, why that another drug? 
    Just don’t drink too much of the beet stufff. Over the winter my urine discolored & we thought it was blood.  After an emergency trip to the clinic it turned out to be beeturia (yep a real word). My onc says ABC “always bet on cancer” however in this case the veggie won. 🤪
    Let us know how it goes! 
    Your fellow ALK Mutant- Michelle
  22. Like
    Curt got a reaction from LouT in Just diagnosed with Stage IV adenocarcinoma with EGFR mutation   
    Hi Joe.  I’m sorry to hear about your diagnosis.  I am 43 years old and had surgery (lobectomy) at MSK for Stage 1 Adenocarcinoma with an EGFR exon 19 mutation a couple of months ago.  I am a never smoker.  It took me a year of scans and eventually surgery to get a definitive diagnosis.  I too was very frustrated with all the uncertainty that surrounds diagnosis and treatment prognosis.  The good news is both have and are continuing to improve.  There are some affective treatments for EGFR mutations.  The statistics you find online are based on people that were diagnosed five years ago.  My father was diagnosed with Stage 4 LC cancer six years ago at age 58.  He did not have any genetic testing and a lot of the current treatments didn’t exist.  Even then the doctors never really discussed statistics and prognosis.   Doctors don’t like to have the prognosis conversation because it is different for everyone and the introduction of new treatments is changing the outcomes.   
    My advice for your second appointment is to write down all of the questions you have so you are sure to get them answered.  Find out what the treatment goal is.  Document everything.  If you don’t understand something and you want to ask the doctor to explain it to you.  
    I’m glad you found this group.  You’ll find a lot of support and more people with experiences closer to yours.  Never stop fighting!
  23. Like
    Curt reacted to Neverstopfighting in Just diagnosed with Stage IV adenocarcinoma with EGFR mutation   
    This forum is a God send. Thank you all for the great advice and sharing your experiences .  I’m totally going to check out all the references you’ve suggested, especially that cancer mutant shaman, Michelle!   Keep rowing, girl!  
    My second appointment is today. Tagrisso is also coming in the mail today. Just a quick question. Why organic beet juice? I’ve trying to find corollary or even anecdotal evidence on its positive effects with Tagrisso but haven’t found anything yet. Any links will help out a lot.  
    Other than that, I’ll continue to pepper y’all with questions in the other sections and try to contribute where I can.  It is miracle I got found this forum.
    thnak you all!! 
  24. Like
    Curt got a reaction from MBinOregon in Celebrating 1 year Pneumonectomy Anniversary   
    Best thing I’ve seen today.  Very positive, encouraging words.
  25. Like
    Curt reacted to MBinOregon in Celebrating 1 year Pneumonectomy Anniversary   
    One thing I've learned since the diagnosis is to celebrate every little (and big) happy things.
    So today I'm celebrating that 5/9/18 I went into the hospital with so much uncertainty and 2 lungs and 4-5 hours later, I was wheeled out with 1 lung.  Came home 2 days later and went back to yoga 6 weeks later and then back to running by October.  Every handstand, every push up, every burpee, well, every breath makes me feel grateful and "normal'.  Most of all, I'm grateful to go from not knowing what tomorrow will bring to dare to hope for the future.  I'm also grateful for all the support, advice and cheering I've gotten on this forum.
    Thank you, everyone.
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