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Jeannie0613

My husband has stage IV lung cancer

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Hi everone

My name is Jean. My husband was diagnosed with lung cancer that has metasized to his brain and bone, Stage IV. He is 44 years old. He has been healthy his entire life. This all came on so fast. We came home from a family vacation and I noticed his mouth looked droopy. We we made an appointment at his family doctor and they said it was bells palsey.

We have three small children. He is a fabulous husband, and even better father. HOW could this be happening. He was not even a smoker.

I AM SCARED TO DEATH. I am trying so hard to be tough for him. Usually it is him being the tough one so this is really hard for me. I love him more than I could ever even begin to explain. This man is my whole being. I need, he needs, a miracle. I cannot even begin to imagine my life without my best friend, my heart and soul is him.

The bells palsey ended up being three tumors that were bleeding in his brain.

So much has happened to us over the last several months. I do not even know where to begin. I just want to hear positive stories, I am so tired of all the negativity I hear from the doctors. We have been to several places now, several opinions. They all base it on the original records. Noone has ever run any tests of there own(is this normal?). He has had radiation(14 treatments) to the whole brain, and 14 to the hip. We have been to Henry ford hospital, William Beaumont Hospital, Karmonos Cancer Center and Cancer Treatment Center of America. We actually just got back last Tuesday from a very disappointing trip to CTCA. They told us he could get the same treatment here at home so go home basically and let them do it. Very disappointing. We were scheduled to start chemo at Karmonos on the 9th of Nov. We thought we would check out one more place for another opinion(CTCA) before we began chemo. We arrived back home on Tuesday night and by Thursday am he was not doing to good. I took him to Karmonos(DMC ER) and they admitted him for pneumonia and shingles, ( he probably caught that on the germy plane or at CTCA?? who knows but not good). He was doing so well before we left. Eating, daily, laughing, almost his old self. We got back from Illinois and BAM, he is sick. Anyway, he spent a few days in the hospital, he seemed better so they sent him home sunday. We got home and all he did was sleep. Tuesday am when I awoke I found him struggling to breath and I immediatley called 911. So now here I am sitting in the hospital watching him sleep and closely watching his breathing. I have not left his side. They found two blood clots on his lungs and one on his leg. He was in ICU for two days. We just got down stepped to a regular unit, where the nurse just pops in whenever she feels the need and I am terrified to even leave(thank god my mother is taking care of our children). He really seems better but the docs are sure doom and gloom. Although, one good thing......they did a recheck on his brain and the tumors are no where to be seen! AMAZING! That is such good news. The radiation worked now it is time for chemo. He just needs to get better before we can start that.

He was so bad when he was an ER on Tuesday.

I was starting to believe those docs and started to get really freaked out. He promised me and the kids he is going to beat this. I beleive him, I really do. But this is so scary. He has way to much to fight for, he has his health otherwise and age, right? Well, this is just a small touch of our lives. I could honestly go on to write a book about what has happened to totally change our lives in these past 2 1/2 months. I need support..please help me out here. Thank you all.

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Welcome Jean. Boy you guys have had a rough couple of months. Most all of us here have no problem immagining what you have been through.

There are many young people here with lung cancer that never smoked. Also there are many who have lung cancer now that quit smoking many years ago. Half the people diagnosed do not smoke!

Getting pneumonia with lung cancer is common, many are diagnosed because of pneumonia. Also blood clots are common with lung cancer so keep your hubby either walking or flexing his calves, perhaps support hose.

That is great news that the brain tumors are gone. Yippee! Prayers going up on great results from the Chemo. I started with chemo and radiation and was later able to have surgery, that tissue removed was tested and it was all scar, dead tissue. Pray the same result for your husbands tumor.

Keep us posted.

DonnaG

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Many prayers for your family.

We understand the sucker punch you have endured.

I hope they get things squared away for treatment.

Once you have a plan in place you can just start working the steps.

It is not easy, honey, but thank God your mom is w/ the children and you can focus on getting a plan in place.

many hugs

Pat

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Hi Jean-

I am very close to your area. I know it is hard when the doctors give you the statistics, but your husband isn't a statistic. We have many stage IV members here doing pretty well. I don't know if you are aware that the University of Michigan has a lung cancer clinic. If you are close to Ann Arbor you may want to consider a place that only does lung cancer.

The key to beating this is to find a doctor that will fight for you -- no matter where or who he or she is. We found ours at a small Cancer Center in Flint but went to Dr. Kalemkarian in Ann Arbor for a second opinion. Somehow you know when you meet the doctor for you-- it took us 3 tries.

There are many new drugs available such as Tarceva and Avastin that are holding patients stable a long time.

I wish you and your husband well...I've been where you are. If you want to talk PM me and I will send you my phone number.

Rochelle

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Hi jean and welcome. I'm glad to hear that the WBR appears to have gotten rid of those Brain mets. They can cause some troubling issues at times. Before Col's dx, I was actually convinced she had lost her mind. Turns out she didn't it was just being squished by this big old brain tumor. Luckily they were able to remove it all and she did 15 WBR after that, concurrent with her Chemo for eveything else.

Fortunately, you have found a great place for support, many people on here have been through what your experience is.

When you get a minute, update your profile to let everyone see where you are on the journey, it helps people better taylor their answers. What is you husbands chemo regimine? Col did 6 rounds every 21 days of Carboplatinum and Taxol (sp?). You would think after bieng through all this I would know how to spell these stupid drugs, but I don't. I only care about what they do, not how they're spelled I guess.

This is a very scary time, I know. Probably wondering about everything, and it is SCARY as hell. All I can say is hang in there, and let the treatments do their work.

Col's post DX over a year now, 13 months to be exact, and doing a million times better than any statistice would have told us 13 months ago. Oh we still have a long way to go, but in our world, I consider stable progress.

There are many, many people on here who are much further along than 13 months.

Please hang in there. Come here for support, questions, to vent your frustrations, whatever you need. It will help immensely.

I wish you and your family all the best.

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Jeannie,

Welcome to the site. It’s good news that the brain tumors are gone. I am stage IV and chemo has done real well with me. I am about to start some radiation for a spot that is still showing up. What CTCA said about getting the treatment at home is true. I went to Sloan Kettering and they told me the same thing. If you are getting chemo it can be the same no matter where you get it. I think it is better to get it at home where you have a lot of support. Keep us posted.

Stay positive, :)

Ernie

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Welcome Jean. What a terrible few months you've been through. So sorry. I'm a survivor, rather than a caregiver/family member, but I'm sure it's really difficult for both of you. If each of the doctors you saw recommended the same chemo, then I'd consider going where your husband is most comfortable. It's great that the WBR was so effective. :D Please let us know how he is doing, when he gets out of the hospital, and when chemo will begin. The people in this group are really caring and supportive. Glad you are here.

Muriel

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Welcome Jean: your husband is off to a good start with his treatment now that the brain mets are gone.

soon he will be able to start chemo. I hope his first chemo brings very good results.

don M

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Jean,

I can't even imagine how frightened you must be. The good news is that the brain tumors are gone. So getting your husband strong enough for chemo is important. My Mom is stage IV and four rounds of chemo have had her stable for the last 6 months. It sounds like you have been aggressive about seeking treatment options, but it is so important to find a dr(s) who will share your commitment to fighting the diease aggressively. I hope your husband is better today and even better tomorrow. We'll be here for you.

Susan

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Welcome Jean

you've endured a tough time and I can only imagine the stress you've been under. Hopefully now that the brain mets are gone your hubby can begin his chemo. This is the right place to ask questions and find support. Good Luck & God Bless

wendyr

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Hi Jean and welcome to this wonderful site. There are so many people hear that share your experiences. I'm so sorry that you and your husband have had such a rough time of it the past few months. I'm thrilled that the brain tumors are gone, now lets work on the rest of this beast! Shelley

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Hi Again

Today was a good day for us. Jim is doing so much better. The doctors came in and said if he wants to beat this or at least have a fighting chance he has to eat. It is all about Nutrition. I have been trying to tell him that from day one. The new oncologist just confirmed it today for Jim. He just keeps saying food is not tasting good, or his stomach feels full. I am getting so irritated with him about this. I actually lost it a little today on him. Telling him that from where I am sitting it looks as if he is giving up. If he can't do a simple thing like eat MORE, regardless of taste or texture, than he must not want to fight as bad as I thought he did. I felt as though he was just giving up. The depression seems to be setting in. He has been so strong up until the last couple days. I real trooper. ALWAYS POSTIVE. I am not seeing that today.

Until dinner that is....... whatever I did say, worked cause man he chowed for dinner and not one complaint. I told him he has to fight not only for himself but for our children and for me as well. We need him as much as he needs as. He thanked me after dinner. I am glad he did cause I was feeling bad for my short temper earlier. It was a trying day but he is doing ALOT better. The oncologist and the pulmonary doc said he never had pneumonia and the shingles were not shingles after all. I did not mention a whole lot about what really has gone down but alot of misdiagnoses has been the biggest part of why Jim is where he is today. I will work on posting the history.

How do I post the history time line of what has been going on since day 1. Do i just do this on word or something and then copy and paste or is there a standard guideline that I have not spotted yet on this site.

I am so happy I stumbled across this site last night. Everyone has been so amazing, helpful and so kind already. I look forward to talking to everyone. Talking to people that actually know what we are going through helps so much. When I woke up this morning and read all the replies I was thrilled! I thank you all for that. Thank you so much! :-)

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Good work on getting him to eat again! I'm glad you had a better day. To get your info. attached to each post, go to the top of the page. Click on Profile just under the white rectangle. That will take you to a form for your information. There are 4 sections on the form. In the 2nd or 3rd section, you'll find the word signature and a white box in which to type the info. you want in your profile. Be sure to fill in all of the questions with a * next to them. I hope this helps.

Muriel

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Hi Jean-

So glad you found an new onc. The way the others docs were nothing but negative, no wonder your husband was giving up!! DO NOT listen to timelines -I was told 1 year, maybe 2 and I have chosen to ignore that. I am over 1 year and the last time I spoke with the onc. he said well, maybe I should add another year or two onto that!! There are many here who have beat odds and are still doing well after a long, long time!! Everyone is different and these docs do not know with any certainty. My doc actually told me that I am "somewhat" young to have this and statistics are all based on much older people who may have had other medical conditions that interefered with their treatments!! So your husband certainly has youth on his side!!

Hoping he keeps up the good work!!

My prayers will be with you and your entire family!

Hugs!

Patti B

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Hi

Welcome to the board. I had Bell's Palsy before - I can't believe that they didn't check your husband out more thoroughly - there are many other signs for Bell's than just a drooping mouth. Anyways....be as positive as you can. This is a great place to be for information and support. I hope you get an agressive doctor who doesn't dream up "what might be wrong". Push for all the scans you possibly can and request a copy of the reports for every one of them. Take care, Heather

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We just joined this great group for support. The pain you expressed is the same I had when Michael was diagnoised with stage 4 LC, and I still feel today. Our life as of June 07 seemed to come to an end 30 years before I ever thought it would. Keep him eating I'm sure this has helped Michael survive the 6 heavy chemo treatments. We get his PET scan read tomorrow. We'll send a prayer for you both.

Paul and Michael

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"Jeannie0613" ...He just keeps saying food is not tasting good, or his stomach feels full. I am getting so irritated with him about this. I actually lost it a little today on him. Telling him that from where I am sitting it looks as if he is giving up. If he can't do a simple thing like eat MORE, regardless of taste or texture, than he must not want to fight as bad as I thought he did.

Hi, Jeannie. I understand what your husband is saying, since I had (and to a lesser extent again have) the same problem. Actually, I consider it to be three separate problems, with two or three separate solutions:

1. Doesn't taste good. Right, taste buds are fried. Some tastes come through, others are non-existent. This can be overcome with willpower, and from your other comments I'd say your husband has plenty of that, so let's look further for a problem and solution.

2. Texture. Some foods greatly irritate the mouth, tongue, esophagus, all the way through. Can range from unpleasant to downright painful. Minimize or avoid the worst of these, and increase portions of those that actually feel good going down. Frustrating for you, since the "black list" changes from time to time. But frustrating for hubby too.

3. Stomach feels full. My stomach simply will not accept the amount of food I used to eat at one sitting. Trying to force it is useless or worse. Add snacks between meals, give smaller portions during meals. And supplement with Carnation Instant Breakfast, Ensure, its Wal-Mart clones, whatever. For most people, it takes more calories to maintain weight than before cancer came on the scene.

Best wishes to both of you with my Aloha,

Ned

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Hi and welcome to the board,

I am so glad he has new docs, that always makes a difference if you trust your doc and they have a positive attitude. Never listen to statistics. There are many stage 4 survivors. Also, if he gets depressed have the docs try an antidepressant. This will also improve his appetite.

You can always come here for lots of info and advices from others that have been where you are. I know it is very scarry, but do not give up hope.

Ask and you shall receive.

Many blessings and I will be praying for you both,

Denise

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I just wanted to chime in and congratulate you for being such a great advocate for your husband. we had to 'demand' a few tests ourselves, even after my mom's diagnosis was clear, and were always vindicated in doing so. for example, 3 weeks after her surgery, her breathing took a turn for the worse. the on-call doc told me it was par for the course post-op but I took her in anyway, and sure enough she had a blood clot in her remaining lung. so you just keep going with your gut, and keep the faith.

xo

amie

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Hi just wanted to welcome you and Iam really proud of what you did to get him to eat. Also glad you found a new Onochologist.

There is AWAYS,ALWAYS HOPE. NEVER GIVE UP!!! There are many people on here who were diagnoised with that dreaded IV who are still with us.

I'm sure you know by all the posts that you have found a wonderful family on here. We care and we are always here for questions, advice, support or prayers.

Please keep us posted on his progress.

Maryanne

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Jean,

I just wanted to send my best and prayers for you and your husband. You've both been thru so much in such a short time. Please keep us updated and know that we are here for you.

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