Its been a hell of a month

[Rayven198]

Hi all,

My name is Sydney and I am a 33 year old first year resident in Internal Medicine at Howard University Hospital. I am originally from Jamaica and recently moved to the states to further my career. Last year January, I began having these sticking left sided back pain, but thought it was a recurrence of a muscle strain I had, when I was working out. Couple weeks later, I began having left sided chest tightness, so I went to my hospital and asked a colleague to write up an xray form. It showed a large left lower lobe consolidation, The radiologist brought me into a room and began asking me quite a few questions, about my symptoms, if I was having any weight loss, cough, fever. At that point in time I had none of those, but I was on steroid treatment for really horrible eczema, so they thought it was likely infectious since steroids lower your immune system. I was given antibiotics and a couple months later followed up with a pulmonologist with a repeat cxr still showing the consolidation, which was clearing.

Fast foward to later that year, after I migrated and started working at Howard, I realised that while at work, when they would clean a patient's room with this strong chemical, that i would start wheezing. I am more susceptible to developing asthma, my family is full of it, so i thought that was the case for me. I  decided I would check with a Pulmonologist, but didnt go right away due to the crazy hours at work. In January 2017 I went to the Pulmonologist when I noticed the wheezing to be persistent. Originally I was sent to an allergist, do pulmonary function tests and cxr. I got the cxr done on Jan 25th. It again showed a left lower lobe consolidation, which totally freaked me out because I knew something was wrong. We did a CT scan on the 27th which confirmed my fears, that i had a mass. Due to the fact that I am young, perfectly healthy, have no weight loss, fatigue, or coughing, my pulmonologist tried to convince me that it was likely benign, probably carcinoid. We did a bronchoscopy on Feb 3rd, which showed a very friable mass (worst description ever! From I heard the word I knew it was cancer) and the pathologist in the room stated that the cells looked malignant. Honestly I was just floored. I was the annoying friend that used to scold my friends who smoked, how the hell did I get lung cancer??? So many emotions flowed, I cant even fully express them. We did a PET scan and MRI brain, which were both negative, so we though that we caught it early, and I was referred to a Thoracic surgeon, who deals with a lot of lung cancer at another institution.

The day I met the surgeon, I felt something was wrong. He told me he saw nodes on my CT, which were not mentioned in my PET or Bronchoscopy. We had to repeat the bronch, and get nodal samples. He also said that I had some thickening of the base of my lung, and he wasnt sure if it was just scar tissue from the repeated pneumonia, fluid or cancerous cells, so he wanted to do a pleural biopsy. February 14th, we went in and I did the repeat bronch. Again a pathologist was in the room, and he confirmed that nodes were positive. So now I was looking at stage 3a, which was a dramatic difference from the stage 1 that I thought I was. I was just shocked, annoyed and wondering when would I get a break from this bad news train. We did the pleural biopsy on February 20th, which he said looked great, looked like it was just scar tissue, so I was relieved and thought the train finally stopped. I was referred to an Oncologist

On February 28th, I went to the oncologist, who bless her heart, is young, caring and very specialized in lung cancer. She told me that it was Stage 4, that the pleural biopsy was actually positive. Due to this upgrade in staging, surgery is now not an option, only medications. They had however done genetic studies which showed i have a mutation in the cancer, so I am to start on lifelong targetted therapy. This would have been an easier pill to swallow, but due to toxic effects, I would now not be able to carry my children, and I have none. I have a wonderful partner who has always said he cant wait to see me pregnant with his children, and now that cannot happen. This cancer has changed my life in an instant, my career, my future, just so uncertain.

I refuse for this to end this way, I didnt push myself through all sorts of crap for it to end here. I will fight this, and I will beat this.

I just found this site on a google search, and decided to join. I've spoken to a few cancer patients, I was actually diagnosed when i was on my Oncology rotation, oh the irony! I appreciate the fact that i have found somewhere where people can help me since they have been through it

As my mother always told me "Many extra-ordinary things were done by ordinary people who persevere."

I will persevere.

 

[Donna G]

Hello Sydney.  So sorry to hear your story.  I am a retired RN.  Over the years I have worked in many circumstances where there have been Residents.  You have a very busy life.  It sounds like since you will be able to take targeted therapy they have no plans at this time for chemo or radiation.  I hope that means you will be able to continue as a resident.  I pray that you respond well to this treatment.  We really need some good doctors and you going through this will even have more talents caring for people .

They are coming up with so many new care plans and treatments more are surviving.  I pray that they will find a cure or better still something to prevent it all together.  Please keep us posted on how you are doing.  I am so glad you have your guy here with you for support as you are so far from home.  Best wishes.

Donna G

 

 

[Tom Galli]

Rayven,

Welcome here!

Your mother's pronouncement about extra ordinary things accomplished by ordinary people is exactly correct.  Why is it correct?  Because belief, commitment and perseverance best notoriety every time.  Successful ordinary people actually accomplish things, while the notable among us talk about accomplishing things.  I'd be all day typing a list of successful ordinary people but if you believe your mother's wisdom, then you top the list.

I fundamentally believe your attitude towards treatment and outcomes is essential to besting lung cancer.  I have no medical proof, but I've interacted with a lot of lung cancer patients and those that are interested and involved in their treatment, knowledgable enough to ask the TPQs (terribly perceptive questions), and possessing the courage to persevere seem to achieve favorable outcomes.  I came to believe this after encountering Dr. Phillip Berman, a radiologist and never smoker, diagnosed with Stage IV NSCLC and Stephen J. Gould, a Harvard professor of Biology and Paleontology who was diagnosed with abdominal mesothelioma.  Both these men did more than survive, they thrived in life while in treatment and lived well beyond statistical projections for their disease.  As an MD, you've likely digested the statistics.  I'm an engineer and closely examined them.  But my diagnostic angst caused me to forget how imprecise projections can be given the irregular and incomplete diagnostic data set that constitutes survival statistics. Reading Gould's essay, "The Median Isn't The Message", set me straight.  Listen to it here.

You are correct in one observation.  Lung cancer does change your life.  But it is still your life to live and duration and quality is not driven by lung cancer but your "sanguine attitude."

Stay the course.

Tom

[CIndy0121]

Sydney,
I am sorry for the reason for your Google search, but I am glad you found us. Your story has remarkable similarities to mine in terms of the consolidation, being asymptomatic, treatment for infection, repeat imaging, bronchoscopies, pulmonologist, thoracic surgeon and biopsies ending with a diagnosis of stage IV NSCLC adenocarcinoma. The difference is that was almost three years ago when I was almost 30 years older than you. You sound like you have "accepted" the medical situation and have already donned your "determined" patient hat. I had to laugh at my first meeting with my oncologist when he said that one of the things I had going for me was that I am in excellent health! It really does help as does staying active and social. I am glad you have a mutation that has a targeted therapy. That certainly eliminates trying to make sitting in an infusion suite all day part of your new normal. Does Howard's teaching hospital have a cancer center? You also referred to your oncologist positively which is crucial. You will have the support and resources of already being affiliated with the hospital, but that one key relationship is crucial; you're putting your life in her hands and you should feel that you can trust her implicitly. Which medication will you take? Tarceva? When will you be starting it? Please keep us posted here on how you are doing. Something tells me you're someone who is never going to give up. Always have hope.
Cindy


Sent from my iPad using Tapatalk

[Meloni]

Hi Sydney,

Holy cow, what a month! I'm so sorry you need to be here, but I'm so happy you found us. There are many people here who have survived against all odds. I found that to be a comfort against the stats when I was first diagnosed a year ago. 

May I ask what the result of your genetic mutation was? 

Meloni

[BridgetO]

Hang in there! Having been through this, you'll be a great physician. The lung cancer community needs you.

[Rayven198]

Thanks for the encouragement! I have an ALK mutation, which I hear is a good thing. Howard does have a cancer center, but the oncologist there wanted me to get specialized therapy so referred me to Hopkins. So far I think they have been pretty good. We will see I guess.

My oncologist gave me journal articles for alectinib, crizitinib, ceritinib and a new trial for brigatinib. Trying to read through them and decide which I think is best for me. Any suggestions?

Sydney. 

[LaurenH]

Hi, Sydney,

Welcome to LCSC! Thank you for sharing your story. You seem like an incredibly determined, knowledgeable, and positive person. I'm happy to see that you've jumped right into the discussion forums.

I work for LUNGevity as the Digital Community Manager and as an advocate for my uncle who has Stage IV ALK (he was diagnosed in September 2011 and has had very positive results with both crizotinib and alectinib). LUNGevity has an ALK group on Facebook where you can connect with other people who have the ALK mutation. I will also reach out to some of our members who have ALK and ask them to respond to your questions in this thread.

Since you're in the DC area, if you're interested, we have a national lung cancer survivorship conference coming up at the end of April called HOPE Summit. Several LCSC members are HOPE Summit alumni and many will be joining us this year. I am happy to provide you with more information. Please feel free to message me with additional questions about HOPE Summit or LUNGevity's educational or support resources.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[corinnecasebeer]

I'm so glad you found this resource! It took me years! I am 34 and Stage IV, ALK+ as well. I'm so sorry to hear that you have been going through all of this, and that you are now one of us. The "good" news is that things are drastically different for us, even versus a few years ago! There are now 3 Targeted Therapy drugs on the market and 3 in Phase 2/3 trails, and many more in Phase 1. Basically what I'm trying to say is that there is a LOT of hope and life to be lived. PLEASE come find the ALK-I.E.S Worldwide facebook group (and put it in the search bar just like that otherwise it won't come up). It isn't a support group - we only talk about the latest drugs, research and symptom/side effect management. Please join us and put your story on there - you will get TONS of advice and information, especially regarding the therapies you're debating. You will love it  

Wishing you the best, 

-Cori 

PS - a bunch of us, including the "young lung" ones, are going to HOPE Summit. I hope you go! There's a special Facebook group for us youngins, called "young lung support group." It's a great group as well. 

[SouthernYankee65]

There is also a closed ALKie support group, ALK.I.E.S Worldwide, specific to ALK lung cancer.  There are 400+ active members in the group and it is very narrowly focused on ALK lung cancer. (ALK.I.E.S. stands for ALK Information, Empathy, and Support and it has members from all over the world)

https://www.facebook.com/groups/ALKIESWW/

Tom

[Rayven198]

Hey everyone! Wow thanks for the new info, I've gone to both Facebook sites to sign up, guess I'll wait for the admins to let me in. 

I will definitely try to go to the conference, especially since it's not far from me. Would be good for me to get more information than what they taught me in the books.

We decided to go with alectinab, larger target and more brain protective. Will be starting it in about 2-3 weeks, saving some eggs first.

Sydney. 

[corinnecasebeer]

Great! I'll look for you in the groups  I'm going to Hope Summit as well.

Wonderful choice with Alectinib, a lot of people in the ALK-ies group are on it and love it. I'm glad that you are saving some eggs first, my doctors didn't talk to me about this before and I didn't think about it. Keep us posted on your progress! 

-Cori

[Melissa Blevins]

On 3/5/2017 at 1:08 AM, Rayven198 said:

Hi all,

My name is Sydney and I am a 33 year old first year resident in Internal Medicine at Howard University Hospital. I am originally from Jamaica and recently moved to the states to further my career. Last year January, I began having these sticking left sided back pain, but thought it was a recurrence of a muscle strain I had, when I was working out. Couple weeks later, I began having left sided chest tightness, so I went to my hospital and asked a colleague to write up an xray form. It showed a large left lower lobe consolidation, The radiologist brought me into a room and began asking me quite a few questions, about my symptoms, if I was having any weight loss, cough, fever. At that point in time I had none of those, but I was on steroid treatment for really horrible eczema, so they thought it was likely infectious since steroids lower your immune system. I was given antibiotics and a couple months later followed up with a pulmonologist with a repeat cxr still showing the consolidation, which was clearing.

Fast foward to later that year, after I migrated and started working at Howard, I realised that while at work, when they would clean a patient's room with this strong chemical, that i would start wheezing. I am more susceptible to developing asthma, my family is full of it, so i thought that was the case for me. I  decided I would check with a Pulmonologist, but didnt go right away due to the crazy hours at work. In January 2017 I went to the Pulmonologist when I noticed the wheezing to be persistent. Originally I was sent to an allergist, do pulmonary function tests and cxr. I got the cxr done on Jan 25th. It again showed a left lower lobe consolidation, which totally freaked me out because I knew something was wrong. We did a CT scan on the 27th which confirmed my fears, that i had a mass. Due to the fact that I am young, perfectly healthy, have no weight loss, fatigue, or coughing, my pulmonologist tried to convince me that it was likely benign, probably carcinoid. We did a bronchoscopy on Feb 3rd, which showed a very friable mass (worst description ever! From I heard the word I knew it was cancer) and the pathologist in the room stated that the cells looked malignant. Honestly I was just floored. I was the annoying friend that used to scold my friends who smoked, how the hell did I get lung cancer??? So many emotions flowed, I cant even fully express them. We did a PET scan and MRI brain, which were both negative, so we though that we caught it early, and I was referred to a Thoracic surgeon, who deals with a lot of lung cancer at another institution.

The day I met the surgeon, I felt something was wrong. He told me he saw nodes on my CT, which were not mentioned in my PET or Bronchoscopy. We had to repeat the bronch, and get nodal samples. He also said that I had some thickening of the base of my lung, and he wasnt sure if it was just scar tissue from the repeated pneumonia, fluid or cancerous cells, so he wanted to do a pleural biopsy. February 14th, we went in and I did the repeat bronch. Again a pathologist was in the room, and he confirmed that nodes were positive. So now I was looking at stage 3a, which was a dramatic difference from the stage 1 that I thought I was. I was just shocked, annoyed and wondering when would I get a break from this bad news train. We did the pleural biopsy on February 20th, which he said looked great, looked like it was just scar tissue, so I was relieved and thought the train finally stopped. I was referred to an Oncologist

On February 28th, I went to the oncologist, who bless her heart, is young, caring and very specialized in lung cancer. She told me that it was Stage 4, that the pleural biopsy was actually positive. Due to this upgrade in staging, surgery is now not an option, only medications. They had however done genetic studies which showed i have a mutation in the cancer, so I am to start on lifelong targetted therapy. This would have been an easier pill to swallow, but due to toxic effects, I would now not be able to carry my children, and I have none. I have a wonderful partner who has always said he cant wait to see me pregnant with his children, and now that cannot happen. This cancer has changed my life in an instant, my career, my future, just so uncertain.

I refuse for this to end this way, I didnt push myself through all sorts of crap for it to end here. I will fight this, and I will beat this.

I just found this site on a google search, and decided to join. I've spoken to a few cancer patients, I was actually diagnosed when i was on my Oncology rotation, oh the irony! I appreciate the fact that i have found somewhere where people can help me since they have been through it

As my mother always told me "Many extra-ordinary things were done by ordinary people who persevere."

I will persevere.

 

My gosh,

I am so sorry to hear this.  I hope that your journey here is positive and painless.  My mom has also just been diagnosed and luckily for her she remains node negative, however, she had an upper left lobectomy and has had many complications.  She is only 68/and no real medical issues to speak of.  She's developed 15-pounds of edema, two blood clots, one to the right lung and lower extremity and atrial fibrillation.  We are not really getting any satisfied answers.  I don't even know what to ask.  For something that seemed so early, it has turned out to be so complicated.  I don't know where to turn.

Wishing you much luck and prayers for you,

Melissa