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Joelswife

Newcomer: Hubby is Stage IV NSCLC

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Last November, Joel had an upper respiratory infection that became pneumonia. They bombarded him with antibiotics for 5 months before deciding to do surgery to remove abcess from lower left lung. The surgeon told me in the waiting room he found cancer but thought he got everything. My world from that moment on has never been the same.

We went from a diagnosis of Stage 1B to Stage 4 within a few days, mets to ribs and neck. He has had chemo and radiation, hated the radiation so much that he stopped it and then when he had a growth on his neck that keeps him from eating anything but a liquid diet, he is now doing radiation again. We really wanted to fight the cancer with vitamins, juicing, etc but now feel that the cancer is so fast growing that radiation is the only answer to slow the cancer to give the natural alternatives a chance to help.

I could live with all that except for the brutal pain that he suffers. He is on a fentanyl patch, oxycodone, dilaudin that has been increased to 16 mg every 4 hours. I cannot bear to see him in so much pain and from everything I read, he shouldn't be. He is having a procedure next week to deaden the nerves; if that doesn't work.....what then?

He is very depressed, so am I. There are no support groups in our area. We have some wonderful friends and family but I still feel so alone.

I am so grateful to have found this site.

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I am so very sorry for your husbands pain and yours as well. I know that not only he has cancer but you do too only in a different way. It is always that way with someone you love. I hope the proceedure works to ease his pain. I don't know anything about that but just want to welcome you here. You will get a lot of support and prayers and also some good advice.

Bless you and know that you will be in my prayers. Lillian

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Hello and welcome. What name would you like us to call you? It just feels easier to write when I have a name.

Anyway, I am so sorry you and Joel are having such a rough time. He feels crummy and you hurt watching him and wanting to make it better. A loved one's pain is the hardest pain to bear. I hope we can all offer you support that will ease your pain a little.

I don't know where Palm Coast is in Florida, but I did find some references on the internet. Here's a link to an article that mentions a cancer survivor from Palm Coast! Maybe you know him - Neil Steele.

http://www.mayoclinic.org/patientstorie ... unlop.html

And here's a radiology group that deals with lung cancer. Maybe they have referrals for local support groups. Give them a call and see if they can help you find people in your area.

http://www.palmcoastimaging.com/Doctors ... octors.htm

I'm sorry you've had to go it alone for so long. Hope you will find kindred souls in Palm Coast. I know you'll find some here!

Your love for Joel is probably the best medicine he gets from anyone. You may not be able to make everything better, but you give him what a person needs most when life is beating him up --a soulmate who gives love and the security that comes from being loved.

Leslie

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Welcome Joel's wife ( I am also a wife of a Joel)

I am sorry you had to find us, but you have found the best support and knowledgeable group there is.

It hurts so much to see him with all that pain the Joel is going through. This is so hard on both of you.

I pray his pain lessons and becomes more manageable.

Sending prayers for much better results. Poor guy, no one should have to live in pain like that. I hope they could find something that could work for him.

We are always here 24/7 for you. Please keep us posted.

Maryanne

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Hi.

Just want to add my welcome to you and so happy that you joined us.

Please ask the expert for any questions that you might need answered. Dr. Cunningham is a compassionate and smart oncologist. I just love him.

Cindi o'h

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Welcome,

I'm glad you found us. You will find this to be a wonderful group of supportive, caring and knowledgeable people. As we learn more about your husband's case and you have specific questions, there's usually someone here that has experience with a similar diagnosis or treatment. Every case of lung cancer is unique , but there are usually some similarities and treatments that are the same.

For now, make yourself comfortable and look around the site . Notice the profiles that each of us have attached to our posts. You will get an idea of what each case is about. Again, we are glad you are here and we will look forward to knowing you better.

Sue

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Welcome

to you and Joel,

Sorry for the amount of pain the lc brought

but with the right combination of medication

you will see that the pain will be taken

care of.

Ask, and ask again and describe the pain

and the time in between the medication and

the relief of the pain or the next pain attack.

Good luck and keep us posted.

J.C.

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welcome, welcome. I am glad you found us. there's nothing worse than that isolated feeling. I, too, found the pain the hardest part - when I saw it cross my mom's face, I just wanted to crumble.

you've found a great place for information and support. so keep coming, and I will say a prayer for you and Joel (my dad's name :) )

xoxo

amie

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Welcome. I am glad you have found us. Is there a pain management clinic in your area? If so you may want to ask for a referral. Pain is all they do and they should be able to help. Good luck to you and your husband.

Rochelle

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welcome,

Yu will be happy to know that there are many of us here trying natural complimentary approaches in our fight. If you go the the Alternative therapies section -- there is a wealth of information.

Joe

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Hi -

I, too am so sorry that you had to look for us. I have been active on this board for about two months, and I don't know what I would do without it.

My mom also has numerous bone mets and had been in excruciating pain...yet through radiation, trial and error and just hanging in there, we have it much better under control.

She is on 200mg of Duragesic (Fetanyl) patches as use the Actio suckers for breakthrough pain (these are a God send!.) Everyone responds to pain medication differently, and it took us a while to find this mix. Keep telling the doctors that the pain level is not acceptable...and keep experimenting. Do not give up! We also use steroids (which caused terrible pain when we tried to decrease them....so I KNOW that inflammation is a culprit for my mom....and the worst pain for her is the neck.) Last suggestion, we got my mom a soft cervical collar which stabilizes the neck...and has helped.

Please, please private message me if I can help. I don't know much about a lot of cancer issues...yet I do know more than I want to about pain and bone mets. :)

Take each day as it comes. I am going to tell you what everyone keeps telling me: YOU ARE STRONG ENOUG TO MAKE IT THROUGH ALL OF THIS! And, I know they are right.

You'll be in my thoughts and prayers,

Holly

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Sorry you and your hubsband have to go through all this. Glad you found the site, and welcome! When my wife was first diagnosed three years ago with NSCLC, Stage IV, with multiple bone mets, several of the bone mets had to be radiated because of severe pain. She started on two chemos at the same time, but the radiation was necessary to ease the pain and prevent any further bone damage.

Hang in there with us. Best to you both. Don

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Joel'swife,

Just want to welcome you to our family. It is a great place for support and information. You are in good hands. No matter what the situation there are almost always some people that have been there and can help.

Again, welcome.

Nina

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Welcome Joel and Joel's wife,

Sorry you are going through all this pain, and that Joel is suffering so much pain. I know for me, when my husband is feeling well, I feel well and can do anything. When I see him in pain or down, I am a wreck. It is so hard to see someone you love so much hurting and there is nothing you can do to take it away. I would give anything to feel the pain instead of my husband. I'm sure you know what I mean.

I really want to give my support to Ry's suggestion that you talk to a pain management doctor. Early on, Keith was experiencing a lot of pain and was on ever increasing dosages of Oxycodone and Oxycontin to the point that the medication was scaring me more than the cancer. He was up to taking 80-100 mg of Oxycodone every 3-4 hours for pain on top of taking long acting Oxycodone every 12 hours. When he added a pain management doc to his team, they changed his perscriptions to include Nuerontin which is a nerve ending depressant that decreases the nerve impulse transmissions. After adding that, Keith was able to drop Oxycodone all together for almost a year. He only recently added that back for pain management but in really small doses. For pain management doctors, pain is all they do. You need to build the best team of doctors who can concentrate on what they do best.

I will be praying for you both, God Bless

Carleen

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Thanks Carleen, you're exactly right. When Joel is having a bad day, I feel as low and hopeless as possible. When he feels good, my spirits soar. I think the worst day was when he thought he should check himself into a hospital, the pain was so bad and the onc said they don't hospitalize people for pain. Wow. That kind of drove it home for me. He does have a pain dr and they are doing a procedure this Friday to deaden nerve endings, they are pretty sure it will help. I can only hope. I hadn't heard of Nuerontin and will check. He hates being so doped up and sleeping so much. Plus it's really scary because he looks like he's dying when he's so drugged, all white and kind of staggering. Today is a good day so I'm in a good place today. :)

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Hoorah for a good day! Enjoy every moment of it. I hope the pain dr. will help Joel - that he'll not only feel better painwise, but will feel mentally himself and not drugged. That can't be any fun for anyone.

Keeping my fingers crossed that new treatments will do the trick,

Leslie

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