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Brandi

Young(ish) Mom Newly Diagnosed

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Hello, everyone. My name is Brandi. I am 39 years old (okay, okay, not that young!) and was diagnosed last week with a minimum of Stage 3 Adenocarcinoma non small cell. (I'll remember the acronym eventually.) I am devastated. I have 4 children, ages 3, 7, 9, and 15. My husband is at a loss and we are still all in shock. It started with a cough that didn't bother me enough to get checked out until I started experiencing some shortness of breath in November. I finally went to see my PCP and he recommended a chest X-ray; although he also thought it may be GERD related so he recommended I try prilosec or something. The chest X-ray at the end of November showed something (possibly pneumonia?), so I was prescribed antibiotics and a follow-up X-ray in December. Of course, the antibiotics did nothing, and the follow-up X-ray showed something still there. My PCP referred me to a pulmonologist who I saw early in January. She took an X-ray in the office and said she didn't think it was cancer, but wanted me to have a Chest CT. Chest CT came back and her whole demeanor changed, she said I need to have a bronchoscopy. 

Bronchoscopy performed 1/23/18. Follow-up appt scheduled 2/6/18; however, I was called early because my results came in early (big flag there) and we received the diagnosis on 1/30/18. I transferred to Emory for a 2nd opinion and it confirmed that the cancer is adenocarcinoma that has spread to lymph nodes in my chest and I'll need a follow-up PET and MRI to make sure it hasn't spread. I do that Tuesday 2/6/18 with results on 2/9/18. I have support but I can't stop thinking of my children. 

We have a big family cruise planned in a couple of weeks and the oncologist said that we should definitely go. I understand why. I want to as well, but I read everything they say as the end. 

I'm trying to be hopeful, but now all of the pains or discomforts I've ignored as I have been super mommy have me worried that the cancer is in other places. 

I feel guilty for not thinking more positively because I know others are counting on me to be strong and fight because they need me here. 

I'm so sad that I am numb. I am so, so terribly afraid.  My tears feel stuck. They come, but they still feel like a floodgate is holding them back and the lever is broken because I want them to flow. 

So that may be TMI but my heart is breaking and I don't know where to turn. How do mommies of young children deal with this? How do the families cope? I know people get through this all the time, but I work and I do everything around here (with a very helpful partner, but still, I'm a super hero!). How will they manage while I'm being treated? Are there other patients/survivors with young children I can talk with about this?

The only thing that keeps me from saying goodbye, falling to the ground, and giving up completely are my children and the survival stories. I have to believe I can fight this and win. I have to win!

Also a never smoker not that it matters because no-one deserves this mess. Thank you all for listening and please feel free to guide me to the right place if I wasn't supposed to share all of the details here. 

peace and love to all. 

 

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Hi Brandi,

Welcome here and thanks fo sharing your details. This is a good place to do it. You're going through a whole lot of emotions right now, which is a normal response to this kind of diagnosis seeming to come out of nowhere.  Of course you're afraid and sad. You'll read stories of survival here. This is a good place to find information, support and hope. I think you wil probably hear from other parents of young children about their experiences. I'm an old lady with no kids, so maybe not as helpful to you as some.  Another possible source of support is the Lungevity Lifeline, which matches newly diagnosed people with peer mentors. Maybe they could find a mentor for you who is a parent of young kids. Here's the link:   https://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline. The main Lungevity site has lots of other inromation and resources also.

Hang in there. I encourage you to keep posting here.

Bridget O

 

 

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Hi Brandi, glad you found us.  I was diagnosed with lung cancer Stage 3B  .   I remember how devastated I was. 

I really thought I had gotten a fatal diagnosis.  I was 50 years old so not so young as you.  You can read my story in more detail

if you want.  ( see below that it is posted in My Story )  I had quite a bit of treatment that lasted about 6 months, it was tough but    ----------------

last summer I had my 70th Birthday .  I have survived over 20 years !  It is possible. 

Please keep us posted and feel free to ask questions.  During treatment and Doctor visits it is really important to have a friend or family

member with you and take notes !    Praying for you treatment to get started and that you also respond well to it.

Donna G

 

 

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Hi, Brandi, and welcome.  I'm so sorry you're having to deal with this--it really does suck, no doubt about it.  I'm one of the fortunate ones whose cancer was found very early (screening program), but when I was first told my nodule (which they had been following) had changed and was likely cancerous, all the unknowns were pretty darned scary.  I hope your further testing shows no further spread.  

This IS survivable--we have a few longtime survivors here--Donna, whom you've already met, Tom Galli, who will undoubtedly be along shortly, and others.

Having young kids certainly adds another layer of worry, but you won't necessarily be out of commission for that long.  Once you have a treatment plan in place, there's a lot of collective experience here with different treatments, which can give you an idea of what to expect.

Hope you can enjoy your cruise with the kiddos.  Keep breathing, take things one step at a time.  Do your footwork, but try not to get too far ahead of yourself.  Things will become clearer as you get a treatment plan in place and adjust to a new "normal".

Glad you're here with us--it's a great group of folks.

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Good morning, Brandi.  Our paths and diagnoses are similar.  I had a pesky cough that was initially attributed to my asthma.  On February 22, 2016, I was diagnosed with Stage 3 non-small cell adenocarcinoma, during surgery to remove the mass from my top left lung.  I, too, had lymph node involvement in 7 of 10 lymph nodes.  My diagnosis was later revised to Stage 4; nodules seen on my thyroid prior to treatment were both lung cancer mets and thyroid cancer.  My initial treatment was four cycles of chemo.  I had clear CTs for almost a year and had a recurrence in a lymph node.  I had chemo and radiation and knocked it back.

My first bit of advice is this: do NOT look up any statistics.  Those stats are based on patients and treatments from 5 years ago.  We've seen so many new treatments in lung cancer in the last 2-3 years.  Stats also don't take into account your current health, age, etc.

I second what Donna mentioned: take someone with you to appointments.  For most appointments, I had my husband or my mom AND a notebook with questions I thought of between appointments.

We're here for you and will gladly answer any questions you have.  We know that this is an overwhelming, scary time.  

 

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Brandi,

Welcome here.

Ok, deep breath...good. Go on the cruise.  You'll have diagnostics completed before departure and a treatment approach.  Your type of NSLC, adenocarcinoma, responds very well to treatment and from my reading of your staging, you've got lots of curative options at your disposal.  

Let's review the bidding.  You are young, you have the world to live for, and advances in chemotherapy and radio oncology are finally having a very big impact on your type of lung cancer.  Since you are choosing treatment, choose life and enjoy the life extension treatment brings.  This is so very important and I say it up front and early because it is not what I did.  One of the benefits of this forum is you get to learn from our mistakes.  Here's an essay I wrote years ago that's been helpful to the newly diagnosed. Oh and the Stephen Jay Gould essay is a good read but a better listen -- here.  Two points to reinforce Gould's prospective: your attitude towards treatment and outcomes matters and survival statistics don't!

Everyone of us here knows what numb feels like.  We've all been right where you are now and I've been living fourteen years since my mind-numbing diagnosis.  We are with you every step of the way.  We'll field your questions, suggest ways of coping, tell you what to expect with treatment, help you deal with side effects and help you understand the new vocabulary you'll need to master.  There is so much information you'll need to assimilate and understand to help you make treatment choices.  And, you need to make these choices; your doctor will discuss the possibilities, but you'll be the decision maker.  In this light, I suggest you never go to an oncology consultation alone. To prepare for your 9 February consultation, get acquainted with Lung Cancer 101 here.  Give the whole thing a good read, then fire away with your questions.

Glad you found us.  You'll be fine!

Stay the course.

Tom

 

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Hi Brandi,

I am so very sorry that you and your family are having to travel down this road.  I am a voice/caregiver for my mom who is currently battling a recurrence of NSCLC.  This time, her tumor is inoperable, but she has many different treatment options available to her now than she did 2 years ago when she was first diagnosed.  My mom's situation is very different since I am grown, but she is the caregiver for my dad who is disabled with a movement disorder.  Lots of days, he is like taking care of a 5 year old (fits included!).  When my mom was diagnosed both times, you could see in her eyes the worry that she had about possibly leaving my dad before he leaves her.  She also didn't want to miss out on all of the fun adventures her and I have.  So she made up her mind that she was going to survive this.  And she is not only surviving, she is living her life. To me, you have made the most important decision already - to live.  You say that you have to live.  So, you will. I personally feel that a person's will to live is just as important as the treatment they receive.  I've seen it with my own mom.  The numb will eventually go away and the warrior will come out. You can do this!!!

Take care, 

Steff

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THANK you all so much for your tips and support. I am moved to tears and so thankful to have this community to lean on during this tough time. 

 

I cant wait for my time to pay it forward. 

 

i will definitely be in touch. 

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Hi, Brandi,

I'm sorry that you and your family are dealing with lung cancer, something we all wish we didn't have in common, but we are glad that you've joined this forum. This is a great place to connect with other survivors who have experience navigating a lung cancer diagnosis. Please feel free to explore the message boards, ask questions, and join in on the conversations. I am also happy to provide additional resources and information about LUNGevity's Support programs. Please do not hesitate to reach out!

We are here for you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hello, all. Just wanted to provide an update and say that I am officially Stage 3B. Next week I will start  6 weeks of chemo/radiation followed by 1 year of immunotherapy. I will have the Carboplatin/Taxol (lite - using Susan's term) and I can't remember the immunotherapy drug right now. There is also cancer in the lymph nodes of my neck but I am still classified as 3b at this point. 

I am STILL waiting on results on the mutation from my biopsy to see if I have a mutation. I am a little worried that the sample they took wasn't large enough. 

I'm nervous about what to expect with this treatment. The docs told me that it is a cumulative effect and I may start to feel the major issues of neuropathy and esophagitis about 3 weeks in and up to (or maybe at least) 3 weeks after. Does this sound right? Should I move this question to the other forum? Any tips are appreciated. :) 

I am ready to fight though! 

Thank you all for your encouragement and support. Wishing us all peace and love on these journeys. 

 

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Brandi thank you for the update.  So glad your treatment is getting started.

As I told you I was 3B and I understand.  I hope you tolerate the treatment.  It is tough but well worth it.

Donna G

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Brandi,

I'm assuming you are having first-line treatment for your stage IIIB lung cancer.  You don't mention the diagnosed type.  Is it NSCLC - squamous cell or adenocarcinoma?

When Susan mentions Taxol and Carboplatin lite, she I believe is referring to the dose that is given in combination with standard radiation in a 30 day treatment cycle: daily radiation for 30 days and reduced strength Taxol and Carboplatin once per week or 4 infusions within the 30 days.  Is this your treatment?

If so, it worked for me.  It reduced a 3 inch long tumor to nothing.  Unfortunately, I had a recurrence after surgery but Taxol and Carboplatin at full strength, one infusion every 3 weeks for a total of 6 infusions, also knocked back the recurrent tumors.  Then another recurrence and another 6-week Taxol and Carboplatin infusion cycle.  I've had a total of 18 infusions of Taxol and Carboplatin and it does work.

Tips?  Here are some I'd recommend. 

Stay the course.

Tom

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Thank you for the tips and good thoughts. 

 

I have NSCLC - adenocarcinoma. I will have daily radiation for 30 days and the Taxol/Carboplatin 1/week for 6 weeks concurrently. 

 

I'm ready to stay the course and fight like you all. Thank you for giving me much needed support and hope. 

 

Brandi

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Brandi

Exact same treatment starting March-12, Just waiting this week for the exact date  for chemo to start and  let the fun begin. I have gained 10lbs so far in anticipation of potential weight loss in the coming six weeks.

Bob

 

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I just realized I never gave you all an update. I started alectinib in May after being bumped up to Stage 4. This week I was told that I have no evidence of disease. I've blogged about it some here www.imeuwe.com. I will try to check in here a little more often now that I am feeling better. It was a rough road for a few months there. Thank you all for being excellent in your support upon my initial diagnosis. This was the first place that I turned and you all welcomed me right into the group. It is much appreciated and needed and I hope I can offer the same hope to others on this unfortunate journey. 

 

warmest regards, 

Brandi

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