my friend has lung cancer

[maryleelou]

Hello Everyone - My name is Mary Lou. My best friend had the lower part of her right lung removed last year and then underwent both chemotherapy and radiation. She recovered fairly quickly, she had less and less trouble breathing and the residual pain eventually cleared. Her checkups were normal for a while.

Last week she learned that she now has cancer in her left lung. She started Tarceva a couple of days ago and is already experiencing sensitivity and soreness in her mouth. Fortunately, her insurance covers all but $50 of the monthly $2506.75 cost for the meds. I've researched Tarceva on the Internet and it sounds like a very powerful drug.

I am writing for a couple of reasons. First, I want to know how best to support my dear friend. She lives in Alaska and I live now in Massachusetts, a half a world away. I haven't seen her since I moved back here 5-1/2 years ago to care for my mother.

Last year I called my friend frequently during her hospitalization and convalescence, prayed for her all the time, sent her relaxing music to listen to while she recovered, books to read, cards, etc. I will surely do the same now, but it all seems so inadequate. I should be there with her and I'm devastated because I can't afford to go and see her. I'd move back and be with her if I could. I want to hug her, hold her hand, cry with her, laugh with her, pray with her.

Which brings me to another reason for writing to you. Learning my friend has lung cancer again and that she likely has cancer in some other as yet unfound spot in her body (according to her doctor), has me all twisted up inside. Last year I felt so optimistic that she would survive the cancer. Today I feel like the horrible cancer has only been hiding somewhere in her body, waiting to find a place to grow and take over.

I need your help in finding that optimism again. My friend believes that she will again fight this disease and win. I've been with her through many hard times, including other serious medical problems, and she has indeed fought and won every time. Her faith in God is huge and is a huge strength for her.

Please help me. Help me know how best to support her this time. Help me to be strong so I can be there for her in every way I can. I love her so much and I want her to live. She has a wonderful husband, many children and grandchildren. She's planning to retire in January so she and her husband can travel and enjoy themselves. I want everything good for her. But right now I have to admit I'm feeling terribly selfish because I don't want her to be sick again, I don't want her to have to put those chemicals in her body again, I don't want her to have to suffer any more side effects, any more pain. I don't want to lose her.

I'm so glad you all are here. I know my friend from A.A. We met there 19 years ago when I first got sober. I know the beauty and closeness and honesty of self-help groups. I trust I will find that here as well.

Thank you so much,

Mary Lou

P.S. I don't have a picture of my friend and I or even of myself alone, so I've posted a picture of my little buddies, Tansy and Cabot. They are a daily blessing.

[Kasey]

Dear Mary Lou,

Your post is so full of anxiiety and worry and concern for your friend that it comes through with every line you wrote. You sound like a wonderful friend. It also sounds as if you are doing everything just right for your friend at this time. It has to be so frustrating being far away, but you seem to have overcome that by cards, etc. you sent last year and that you plan to send again.

I am not sure I have the words to help you know just what to do at this point. I believe your own heart will tell you. You know you and you know your friend. Your heart seems a wonderful one that will lead you in the right direction.

You will find many here to help you along this journey....patients, caregivers, and friends just like you.

Right now all I can do is offer these words that a friend of mine offered to me. I am not sure of the origin - I believe she said these words came up in her church group. Perhaps they may be of some comfort to your friend.

Remember how far you've come, not just how far

you have to go. You are not where you want

to be, but neither are you where you used

to be.

Welcome and good luck. Many of us will help you.

Kasey

[bunny]

Mary Lou, I am so sorry your friend's cancer has returned. You've found an amazing resource, here. This website has literally changed my life in relation to helping my mom through her fight against LC.

My mom's came back, as well, and I can attest to how much SCARIER it is the 2nd time around. Like your friend, she had a lobectomy in 2000 that, god forgive me, seemed like no big deal - she had it, they removed it, she recovered from surgery, it was gone. I had no idea the ride we were in for.

Now, I have recovered that optimism you feel you lost (ask around here, they'll tell you how gloom and doom I was when I signed on) and found a little voice inside me that tells me the right thing to do when it comes to showing up for my mom. You sound like a great friend, she's lucky to have you - near or far.

Hang in there, keep in touch, and let us know how we can support you.

xoxo

amie

[Don M]

Hi Marylou: I am sorry your friend got cancer again. I have had cancer twice now. The second time, they cut it out and told me that there was no cancer anywhere else. I did adjuvant chemo and am cancer free now.

The thing that struck me about your friend is that you said they think there is cancer elsewhere in her body but have not found it yet. Has she talked to a surgeon? Maybe it is a local recurrence like mine was, and she can have another surgery to get rid of it. When I went in for a consultation to see an oncologist about my second cancer, he was convinced from the Pet scan and ct scan reports that I had cancer in my lymph nodes and chest wall and was inoperable. I did not accept that and went to see my surgeon. He agreed to do surgery according to a protocol that would first rule out cancer in suspect area outside my lung. When it was determined that there was no cancer outside my lung, as I lay on the operating table, they tested the nodule in the remainder of my left lung which turned out to be malignant. I then had the rest of my left lung removed. I think your friend needs to make sure that she cannot have surgery.

Whatever happens, I think you have been a good supporter in the past, doing every thing you could with the restrictons of being far away. I am sure your friend will appreciate if you continue that support this time. Sending the relaxing music is a real nice touch. Maybe you could tell her about this board and encourage her to join.

Don M

[gail]

You know you are only a phone call away don't you? So make sure you phone service gives you the most bang for your buck.

I have sisters in other states who I know I can call at the drop of a hat, night or day. You do not need to be there in person to support her.

And make sure that you have support too

gail

[David P]

Hey there Mary Lou.

Welcome. And as you can see, the advice and support you will receive from the caring individuals on this message board is from the heart - from those that have "been there, done that." There are many here surviving multiple reoccurrences, as for me, I was lucky enough to only have one occurrence -- but they told me I was going to be pushing up daisies... and I'm still here. You must have hope; don't consider the worst; always be positive; encourage your friend to seek out the best medical advice around, to eat healthy and stay active, and don't give up. Sounds like you've been an awesome supporter to your friend so far... that won't change. Try making an audio or video recording of yourself to send to your friend. Talk to her often on the phone. Get her to register and participate in LCSC -- I'd love to meet and chat with her. I'm sure you won't have any difficulty finding that optimism again. Keep us posted Mary Lou, and take care.

David P.

[Fay A.]

Mary Lou,

I know that is it possible that that the cancer has spread to other parts of her body......BUT

There is a type of Lung Cancer called Bronchioloalveolar Carcinoma (a sub group of Adenocarcinoma also known as BAC) that often stays confined to just the Lungs.

Do you know what type of Lung Cancer your friend has? If she has Non Small Cell Lung Cancer (aka NSCLC) there are several subtypes: Large Cell; Squamous Cell; Adencarcinoma; BAC; Adeno-Squamous, and a few others.

I've had multiple recurrences over the past 6 years. I've been on Tarceva since late December 2004 and have had No Evidence of Disease (NED) since about mid January. Please go to the General Forum and read the postings by Bill about his wife and the results she is experiencing with Tarceva. I know that not everyone will have these kinds of results, but enough of us are doing well on Tarceva that it is reasonable for both you and your friend to remain hopeful.

We do have another member who lives in Alaska, but she travels to the lower 48 for some of her medical care/cancer treatments. Is this something your friend would consider doing?

Wishing you both well.

[bbays]

Hi Mary Lou,

You sound like such a wonderful friend. Just countinue to be the friend that you are. Its the best way to help your friend and God will bless you for that.

I would love to have a caring friend like you by my side.

Keep the faith.

Barb

[trishnmiller]

Hi Mary Lou, Call your friend, send E-mails, send her here where we can help look after her. You are a dear friend and she is a lucky person to know you.

Trish

[Doughnut]

Welcome Mary Lou. I am the friend of a patient as well and I don't live close to her either - although I live a lot closer to her than you do to your friend.

You need to do everything that you were doing last year because it sounds to me as though you were doing it right. I phone my friend loads, I send her e-mails and cards and in my case I am lucky enough to be able to plan to spend weekends with her. I know how you feel, it just never seems enough does it?

I also understand all too well your fears about this terrible disease. I went through a very bleak period a few weeks back and I posted a message here that I immediately wished I hadn't. However, I had such an amazingly supportive response from people who explained that fear about the future is normal. Your friend will have her own fears. There is nothing you can do to change the biology of what's happening to her body but you can support her soul and you seem to be doing that very well.

Dee

[Maryanne]

Hi Mary Lou,

I just want to welcome you to this site. Iam deeply sorry for your friend. I hope she gets better results and can be helped through another operation or chemo.

Make sure she keeps fighting and keeps a positive attidude. Of course, that is what you should always show when you talk to her.

LC is not a death sentence and can me cured or put into remission. Please if she is worried about stastics let her know that stastics does not mean anything. People here beat the odds all the time.

Keep us infomed of her progress as you find out.

She got through this once and she can do it again.

You are a wonderful friend to be so concerned. Just keep the comminication open and let her know how much you love her and she can lean on your for support. You have to stay strong for her.

I will say a prayer for your friend. Iam so sorry she is going through this again.

Maryanne

[kamataca]

I'm so sorry about your friend, but she is lucky to have such a wonderful,caring person in her life. I know that when I get down about my Mom's cancer, my best friend pulls me through. What I need from her the most at those times is her understanding, but most of all the ability to talk about normal, non-cancer things. She helps me laugh...even if it is just re-telling some lame story from high school that we both were there for.

Just this weekend she came over and helped me paint my room. It was a great break from all the other stress in my life, and my room looks great! We also stayed up late watching goofy movies. What a normal weekend.

BTW, at this point my mom's only treatment option is Tarceva. For us it has been a godsend. She has had almost no side effects from it, and none of her tumors have grown since she has been on it. Everyone reacts differently, but we are thrilled with it.

Good Luck!

Kelly

[Leslie221]

Welcome. Sorry your friend is going through this again. But it sounds like she has a good attitude about it and has plans to live to the fullest no matter what. Whatever happens, sounds like she will be fine in her heart and mind.

I'm the one with cancer and not the one in your situation, so I can't offer advice. All I can do is tell you what I have appreciated from friends while I've been in this situation.

My friends seem to let me take the lead in setting the tone and the way I want to deal with cancer. I speak right up and say what I want and how I feel, so it's easy for them to know what I want from them. They know I don't want the cancer to be the most important things about me from now on. We discuss whatever updates I've gotten, they comfort me and help me put my chin up when I'm worried or talking myself into a bad state of mind. Otherwise, they behave the way they always have.

Another friend who is a cancer survivor herself, has put me on her forward list for any funny stuff she comes across. Humor has helped me A LOT!!! Send her funny DVD's - especially funny movies you might have seen together in the past! Sounds like you knew instinctively what would help her before. You'll know again once you get past the shock of her second dx of cancer.

Talk to her honestly about how you feel inadequate and how you'd like to know how she wants you be behave as her friend. I'm sure the last things she wants is for you to put yourself in debt to come see her eye to eye. It seems like you two have a strong enough, long enough history to talk about even uncomfortable theings. You're both still the same people.

Good luck and let us know how things are going.

Leslie

[maryleelou]

Thanks so much to Kasey, Amie, Don M, Gail, David P, Fay A, Barb, Trish, Dee, Maryanne, Kelly and Leslie for your kind and thoughtful responses to my first post. I appreciate that I not only heard from friends and family but also people who are surviving cancer themselves. There are some wonderful success stories and so much hope! Your words helped me a lot.

I will write again when I have updates on my friend or just to say "hi" and let you know I'm thinking of you.

Can someone please tell me what some of the abbreviations mean at the end of people's posts? I understand the most important one -- NED --

Not sure of the others.

God bless each and every one of you awesome people.

Mary Lou

[stand4hope]

Hi Mary Lou and WELCOME!

I don't have a thing to add to what everyone else has said here. Wow! I wish everyone could have a friend as wonderful as you.

About the abbreviations, just ask us which ones you are particulary curious about, plus there is a glossary (on the left) you can click on.

Here are few that pop into my head:

NSCLC - non-small cell lung cancer

SCLC - small cell lung cancer

SRS - stereotactic radiosurgery

SOB - short of breath

Rad - radiation

tx - treatment

dx - diagnosis

Love,

Peggy

[Susan]

Hi Mary Lou-

I am so sorry to hear about your best friend- my best friend also has lung cancer and lives in Alaska- fortunately, I live right down the road from her and can see her everyday.

I recently was out of town when she got the devastating news that her cancer had spread, I know how you feel being so far away- I felt that way last week-helpless- we were in touch via the phone daily and I know that it helped me and hope that it helped her too- it seemed to have-

I am sure that your friend knows how much you care about her and want to be there with her- and I am sure that she understands why you can't- just keep talking to her as frequently as you can- maybe even send her a little home made video or DVD- or recent pictures via email-

My friend gave me a framed quote for Christmas years ago that hangs in my house-

"Some people come into our lives and quietly go; Others stay for awhile and leave footprints on our hearts and we are never the same"

The special people in our lives know When we hold them close to our hearts - I will keep you and your best friend in my prayers Mary Lou-

[Maryanne]

Hi Mary Lou,

NED is good, real good, it is No Evidence of Desease which comes after treatment or surgery when you get scanned again.

Hope all the info you are getting helps.

take care

Maryanne

[daggiesmom]

I don't know what type of LC your friend has, maybe I missed that in your post. For the dr. to say it's probably in other areas of her body - well, did they test her whole body? Is it elsewhere? Do they know that for sure. What stage is she. All those questions make a world of difference as to her future.

You sound like a wonderful friend. My advice would be to talk to her often, just call and say hi. If she wants to talk fine, let her talk, if not, that's fine too. But please, don't stop calling her. Many people here have experienced loss of friendship due to the diagnosis - it hurts beyond belief. I know you won't do that to her. But you have a long road ahead of you if you're a true friend, which you sound like you are. Hang in there. keep posting and let her know there are many suvivors of this disease who are cheering her on.

Joanie (3 1/2 year smlc limited survivor)