Curt got a reaction from Seventhson in Neuroendocrine lung cancer .
I’m also doing good. Im glad to hear you are. I’m not short of breath during normal activity. I’ve been really surprised by that. I climbed five flights of stairs in a parking garage the other day. That got me short of breath. I played dodge ball (I wasn’t doing much diving) with my kids yesterday. That also winded me. It’s definitely harder to catch my breath once I get winded. Most of the pain from the surgery is gone. Just some nerve sensations that feels like a mild sunburn. Most annoying thing at this point for me is a lump/tickle in my throat that causes me to cough. I’m really self conscious abut coughing. I feel like people are wondering if it’s a symptom.
Curt reacted to PaulaC in Time for Pet Scan
Just got home from oncologist and great results. The scan looks clear with exception of a spot on my vertebra that’s been showing on scans but doesn’t show up on bone scan. Dr thinks it’s scar tissue but will continue monitoring it.
Im free for the summer! Next scan in October.
Curt reacted to Shelkay1 in BRAF Mutation
I talked with a rep at the Bonnie J. Addario Lung Cancer Foundation on Tuesday, I'm the 1st BRAF V600E patient she has encountered. She is going to do some research for me on this mutation and possible trialsb she gave me the name of someone at Penn Medicine who is familiar with and has treated patients this mutation. She also gave me the name of a nurse navigator I can use. Where I'm currently going does not use nurse navigators & I've felt like I just get pushed from one doctor to the next and have no one person to help guide me along. I'm actually looking forward to my 2nd opinion appointment on Friday. If anyone out there reading this has the BRAF V600E mutation, I'd like to hear from you & learn of your treatment experiences.
Curt reacted to Rower Michelle in Introduction
I’m an ALKie too. I was diagnosed Stage IV last September at the age of 51. I had some spinal lesions & hot spots on my rib & hip. So far I’m doing well on Alectinib.
My doctor’s advised me to file for disability & focus completely on healing my body. I left a high profile executive position. Each day I look at as an adventure.
There is an ALK Facebook Page (I don’t do FB) that you might find helpful as well. You may want to look at ALKpostive.org.
This is a wonderful community- everybody here gets it! Looking forward to learning more about your journey. Your post is my inspiration for today.
Curt reacted to Steff in Introduction
Hi Pamela, welcome here. And I'm happy you found us. I think you are a great example of a showing people that you can still do the things that you love in spite of lung cancer. You are an inspiration! I look forward to hearing more of your journey.
I wanted to let you know since you are in the DC area that LUNGevity has an international lung cancer conference coming up at the end of April. I attended with my mom last year for the first time. As a caregiver I got so much support and my mom as the cancer Warrior met so many supportive and loving people who are going through the same thing as she is. If you can make it, I think it would be a great place for you to get support as well and also share your story. If you check out LUNGevity main website you can find information about the conference.
Once again, welcome!
Curt reacted to Pamela Dee in Introduction
I am a 59-year-old resident of the Metro DC area. I was diagnosed with stage 3 NSCLC ALK+ adenocarcinoma in February 2013, which after three years metastasized to my brain. I've had chemo and radiation for the lung cancer and surgery and two rounds of radiation for the brain cancer. Through it all, I have remained generally healthy, active, and in good spirits. I have a full-time job and try to stay active with several community organizations. I love to travel, sometimes just to see new places, and sometimes for ski and bike trips. I have supportive friends and family but have gone through much of my cancer ordeal on my own because most of those people don't live close by or they also work for a living. This has generally worked out fine for me. Ironically, the longer I deal with it all, however, the more I feel like I need more support than I did when I started out. I especially would like to be able to share with and support others who are going through the types of challenges I'm dealing with--something I've found is often difficult for people who haven't had cancer to understand. I'm looking forward to being part of this group.
Curt reacted to Steff in Introducing myself
Firstly, congratulations on your retirement! I am sorry it did not come on your terms/plan, but I'm sure you will enjoy anyway!
It looks like you have been through the wringer, cancer-wise. I'm glad you are here to share your stories of survivorship!
There aren't a lot of folks on this forum who have had 2 lobectomies. As new members come to grips with facing this scary procedure, I am sure you will be able to share a lot of wisdom with them. I'm glad you found us!
Curt reacted to Roz in Waiting...
In February, I went to see the broadway musical, The Band's Visit.
The lyrics to one of the songs continues to run through my head. You will all understand why, so I'm posting the lyrics here.
The Band's Visit the Musical - Waiting Lyrics
Waiting. What's new here?
You're waiting, I'm waiting
'Cause that's what we do here
Same as we do every day
For something, I don't know, to happen
No, just something different to happen
Just waiting for something to change
Just a change
Sometimes it feels like we're moving in a circle
Around and around with the same scenery going by
But no one's complaining
We're experts at waiting
Time's like a river sometimes
Time's like an ocean
The sofa is my boat
And I'm just drifting right along
Time is like syrup (Just waiting for something)
And I'm the bug stuck (To happen for)
In the syrup (Anything to happen)
Just trying to find out (Waiting to find out)
What I'm doing wrong (What I'm doing wrong)
You know what I think
There's two kinds of waiting
There's the kind where you're expecting something new
Or even strange
But this kind of waiting, you keep looking off out into the distance
Even though you know the view is never going to change
Waiting, for something
For anything to happen
Just waiting for anything to
Curt reacted to Rower Michelle in Introduce Myself
So glad you landed in a clinical trial. You’re a smart cookie! So many people do not meet the stringent criteria for entry.
I’m treated at Kansas University, a NCI. They have an Integrative Medicine Program where I receive weekly acupuncture. I’m convinced that’s what’s holding off any major depression & keeping the TKI fatigue bearable.
I didn’t have any side effects until day 14 then my liver enzymes went bezerk. There was a step down protocol & it’s been fine since. With these TKIs they start everyone off at the same dose regardless of your size & titrate down. So don’t worry if you have any side effects. Communicate everything no matter how small or seemingly insignificant. Some days I feel like a hypochondriac but it’s important for the team to get a full picture. It’s a whole new ball game when you have a chronic disease.
I’m going to Gi Gong/Tai Chi this afternoon. I think that helps manage the anxiety. I’m not very good at it due to a life long issue of unccoodination. Doesn’t matter- my balance & reflexives are much better since I started.
You might get muscle aches & restorative yoga is great for that.
My motto is anything is possible with patience, perseverance & persistence. This isn’t an easy road & thanks to Tagrisso you’ll be able to feel more like yourself with each passing day.
Keep us posted on what you’re up to!
Curt got a reaction from ColleenRae in Introduce Myself
Hello Jeanie and welcome. I haven’t had to have treatment beyond surgery but I am a fellow EGFR “mutant”. Did they tell you which EGFR mutation you have? There are different ones.
A rabbit hole is a good description of what it’s like after diagnosis. Just make sure you are looking up and finding the light outside that hole when you can. There are lots of advancements and lots of hope in the treatment of lung cancer.
Curt reacted to Rower Michelle in Starting chemo on Tuesday
I was so glad to see your post this morning. You’re not alone & the LUNGevity family is here for you! Even if you’re having a tough hour reach out & give us a shout. We’ll help pull you through it.
The side effects will subside. I found a new acupuncture place while my doc was on vacation & she put the needles in different places for constipation - viola! Better than prunes!!!! I’m giving my doc quite the lecture when he gets back- the Eastern Chinese Method worked better. 😂
Better days are on the horizon- the Beatles had it right when they said “Here comes the Sun”.
Curt reacted to Charles in Durvalumab
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.
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
Curt reacted to Rower Michelle in Introduce Myself
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!
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
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
Curt reacted to Tom Galli in Chemo question Stage 4 Squamous
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.
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!
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.
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.