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Jephkay23

This wasn't supposed to happen.

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My wife, the most supportive person I have ever known, has been diagnosed with Stage IV lung cancer. It has only been two days since the discovery. She shows no symptoms aside from a couple of seizures the other day, and has 5cm mass in her left lung. Multiple tumors in her brain.

To me, she has always been a source of strength, a pillar on which I could lean. Just months ago, I started a drug for my personality disorder. Aside from this, we were happy for the first time in years. Truly happy, without the spectre of my emotions haunting our every interaction. I have read the statistics, raged at the irony. She was so busy caring for me, she never took care of herself.

My future without her looms, and I find myself facing the single most stressful moments of my life and I feel alone. I feel trapped.

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Well, don't go heaping guilt on yourself.  Neither one of you could have prevented your wife's cancer.  

I'm very new to this myself (surgery next week), so I can't give you any helpful cancer-related information or advice.  I CAN tell you, though, that if you want to be there for your wife, it's critical for you to take good care of yourself, too.  Make sure you stay on top of your work with your therapist and do whatever is recommended to maintain your own stability.  There are so many advances in cancer treatment she could be around for a long time to come.  

Sending support and hugs.

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Good morning.  Go ahead and be mad and frustrated and speechless; get it out and then get ready to fight.  My first bit of advice? Don't look too closely at the statistics.  They do not consider your wife's overall health.  They are an aggregate of patients diagnosed 5 years ago, before we had all of the additional treatment options that we have now.  They don't reflect the individuals who opted out of treatment during the process, or never took the treatment.  Besides, if any of us gave any credence to the statistics, we'd all be in our respective corners crying.  You'll find many long term survivors on this forum.  Some of them should have died, statistically speaking, 10+ years ago.

Given the location of your wife's tumors, do her docs have a plan for treatment? My oncologist tells me that they are having great success with radiation for the brain.  Any chemo or surgery on the horizon?

Let us know how we can help you.  We're here.

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I think many of us are right there with you.  I am a daughter/caretaker of my mom who is currently going through a diagnosis of a recurrence of lung cancer.  The unknown is the worst for me.  Once we had a treatment plan in place, we were able to look toward the future (we will hopefully have a treatment plan today for the recurrence).  I hope that you will find the same as you go through this process.  Statistics are grim, but know that they are OLD statistics. I find solace in hearing from those who are survivors on these forums.  It gives a bit of hope in all of the darkness.  As a caregiver, please remember to take care of yourself in all ways (easier said than done, I know!).  It's okay to take time for yourself. It's okay to cry or to be pissed off.  Active members on these forums are here for you and have been a big help to me.  I hope you are able to stay in touch as time allows and keep us updated.  

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Jephkay,

I'm so very sorry to hear of your wife's diagnosis and I well understand you feeling alone and trapped.  My wife felt the same way when I was diagnosed with lung cancer on February 4, 2004.  But after the mayhem of 3 failed surgeries and 18 infusions of Taxol and Carboplatin chemotherapy.  I'm still here and if I can live, so can you wife.

Doctors are formulating your wife's treatment plans that may include both radiation and chemotherapy.  I advise you take the time to read into the disease so you are prepared to help your wife make the right treatment choices.  Here is some introductory information on radiation and chemotherapy you may find interesting.  Has your wife's cancer been biopsied?  I ask because you didn't disclose her type of cancer and various types have different treatment approaches including newly discovered advanced treatments called targeted therapy and immunotherapy.

You'll have a ton of questions as her treatment plan is established and this is a good place to ask.

Stay the course.

Tom

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Thanks everyone for the replies. I have a feeling you folks and I are going to get very acquainted going forward.

Dawn and I learned yesterday that she might not be able to go back to work immediately, but her boss (Dr. Shelly) has promised to hold her job for her. I set up a gofundme page for her lost wages only (if there are bigger bills that insurance won't cover, there might be another!). I won't share the link here, you all have been through enough.  

I remember her holding my hand just before my bladder cancer surgery back in 2008. I can't compare my run of cancer to hers. I went to Westview twice... cancer gone. However, the look in her eyes during those visits and the ones following can't have been any different than the way I look at her now. She's the center of my universe. I will find the strength to dig into this and help her go on. I'll lean on you guys a bit in the process and I encourage you to dump on me when you need it.

Maybe she's coming home today. I'm taking clean clothes to Franciscan just in case. She was taken to the hospital in her laying about attire; a too-big t-shirt a pair of sweatpants that have seen so many better days. That woman does love to recline, covered in cats and stared at by an adoring hound. (I myself have been exiled to the loveseat by the animals. That will change.)  

We have a battle cry. It is based on the notion that everyone dies, but Dawn? NOT TODAY!

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With an attitude like that, how can Dawn not feel encouraged? :)

And that's terrific that you are bringing her some better clothes to come home in.  Right before my nodules were found, I indulged in some heavy retail therapy to celebrate a significant (non-health-related--I WORKED for every half pound that came off) weight loss, and I think having some nice clothes to wear is a real boost.  I love my comfy laying-about clothes, too, but nice to have something that fits and looks good on me.

I hope she gets a good treatment plan going--I always feel better when there's a plan and a path forward.  Keep us posted!

 

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Jephkay,

My wife kept my extended family informed by a nightly (while in the hospital) or weekly (while in chemo) broadcast email.  She encouraged folks not to call during my surgical recovery but to text her phone and she read the texts to me while in the hospital.  She also told folks not to call during the middle week of my chemo.  The middle week of my three week cycle was when I had side-effects and she again used the text and read system.

So broadcast emails daily while hospitalized and weekly while in radiation and chemo.  My surgical recovery was really trying so we disconnected my hospital phone to avoid me trying to answer a phone while encumbered with tubes and stitches.   

Stay the course.

Tom

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My hospital provides a "care pages" website that I can invite people to.  I post updates as needed and folks can check in there.  Immediate family, though, is a bit tricky.  I've chosen not to tell my 88 y/o dad (in assisted living) about any of this because his hearing loss and short-term memory loss means he would be unable to remember from one call to the next what's going on, and he would worry about this quite literally for the rest of his life, even if the news after surgery is all good.  

Do you have a close friend or family member who can run interference for you?  I have an elderly aunt I'm very close to, and I'm having my cousin (her daughter) update her mom while editing for content, so to speak.  Basically keeping the news positive.  The other person I've put in charge of relaying info is my ex-husband, who is a little more removed from the situation and good at dealing with people.  

Another option would be to talk with the hospital social worker, who might be able to make some suggestions for how to deal with those well-meaning family members who want to second-guess everything.  

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I find that now that I have her home, I never want to leave this place. I never want to let her out of my sight. I woke up just now, rolled over and hugged her so tightly. I came in here, to the "Marvel Room" (we are such geeks) to cry and type away from her, lest I wake her up.

Look at all of those sentences that begin with 'I' Getting support for myself feels selfish. I know it isn't, and that if I'm exhausted, or insane with grief, she can't get the help she needs. Ultimately, support for myself means helping her.

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I've had to be the support person for a loved one with a serious medical condition several times, and what you're saying is exactly right.  On an airplane, they always tell people to put on their own oxygen masks before trying to help someone else--and that is very true in these situations.  And although it will help her to know how much she is loved, it won't help her to see you all freaked out.  

So yes, take good care of you.  Not a thing selfish about that--seriously.

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Being the caregiver is a tough role. Not to make it about me, but here is my situation: I'm an only child, married, no kids so my husband is my caregiver.  My parents live about 4 hours away, and my mom wants to be here for every chemo and appointment.  Her biggest obstacle is that she is my dad's caregiver so being here all the time just isn't feasible. On infusion days, I'm joined by my friends.  My husband joins me at appointments.  When my husband and I go for scan results, he steps out to text Mom as soon as the oncologist provides the results.  She checks with him to see how I'm doing, and he sometimes runs interference for other well-meaning friends and family.   All that to say we've found what works for us.  It can be a delicate balance for all involved and there are no easy answers.

You do have to take care of yourself first, or you won't be able to take care of your wife.    

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I know I've not posted in a while. Thought I'd let some time pass and see how I felt about sharing.

Dawn had an MRI yesterday. The tumors in her brain have nearly vanished. Her doctor suggests that the shadows we see may be dead cancer cells that haven't been washed away just yet. Next up is a CT scan to look into the cancers in her lungs, lymph nodes and sacrum.

My baby is going to be okay.

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Thanks for the kind words. She has a CT on the 27th, so we'll see how it goes. I'm obviously hoping for good news. Suppose the Keytruda didn't kill it off (I find it unlikely that it did, even with her 100% PDL-1 expression) they say if the growth of her tumors past a certain percentage means stopping the immunotherapy and choosing a new method of palliative care.

What is the next step typically? Some forn of Chemo?

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That is a good question. Unfortunately, I don't know enough about immunotherapy treatments and progression to give you an answer.  Immunotherapy, especially as a first line standard of care is a new method.  I've not read anything about second line treatment after immunotherapy.

Anyone else have information for JephKay?

Stay the course.

Tom

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JephKay,

Your question is a good one and quite valid.  My mom is on Keytruda + Chemo for a recurrence of NSCLC.  She's completed her 3rd dose.  I've learned quite a bit along the way, but your wife's situation may be a bit different since it sounds like she is receiving Keytruda as a first line of treatment.  Like Tom said, using Keytruda as a first line treatment is fairly new.  Research shows that Keytruda is usually less harsh on the person and often times more effective than chemo.  The fact that your wife has 100% PDl-1 expression gives her a really great chance that Keytruda will work. Should Keytruda not work for my mom, she will have the traditional methods of treatment available to her - Chemo + radiation.  I would imagine your wife will be no different in that there will be another treatment option available for her - possibly the traditional chemo and radiation.  But with the quick advancements of new lung cancer treatments, there may be an entirely new treatment option if/when Keytruda stops working for your wife.

 

 

 

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Hi, my 34 year old daughter was diagnosed w/ stage 4 non small cell lung cancer 4/15/17. She is the mother of a two year old son and so I know how desperate you are. By the time they found it (she went to ER with pain in her head that worse than childbirth by far) it had spread to her brain and some in her spine. Kaiser has performed radiation on her brain with great results, the tumors are shrinking and no new ones have shown up. My really smart niece with a phd who studied lung cancer was quick to suggest a second opinion with Stanford in CA. This may have just saved my daughter, because for the lungs Kaiser was only going to do Keytruda and Dr. Weakly at Stanford suggested also doing chemo. After the brain radiation, she did 4 rounds of both the Keytruda and two chemos at the same time, three weeks apart. Now the chemo is done and she will only be doing the Keytruda every three weeks for the next two years. Her scan the other day shows 90% disease free and I can't tell you how elated we all are. I'm just now getting brave enough to get on these forums and read more about the folks who have this so that I can help my daughter. Does anyone else freak out when they watch their loved one eat sugary foods when I keep reading in books that the sugar feeds the cancer? I just gave her a hard time for it and now feel horrible. And I know that being really tired is normal, but do I try to encourage her to do any exercise? Do I let her recover for a while before pushing her? I know...she's an adult...but still my baby.

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Mimi,

Moms never stop being moms!  I remember my mother's "suggestions" during my treatment.  

On sugar, too much is not good and it can cause tissue inflammation. But I'm not sure I'm aware of a direct link between sugar and lung cancer. 

I can speak to energy drain. I had a 3 week infusion cycle and during the middle week I could hardly get out of bed. So I can validate that symptom. But exercise is good. Ensure her doctor has cleared her however. Your daughter is taking realitively new chemotherapy and there may be some adverse side effects that exercise could cause. 

Welcome here. I hope your daughter' treatment continues to be successful. 

Stay the course. 

Tom

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2 hours ago, Tom Galli said:

Jephkay,

A superb result -- things are moving the right direction.  NED nodes and significant tumor reduction is a very positive sign.

Stay the course.

Tom 

Oh, we shall, Tom! We shall. Dr. Ragavendra says we're on Keytruda for 2 years. SO BE IT.

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