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Beanie

Late in posting, Need Hope, Help, & Info.

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Hi everyone! This is my first time posting but I’ve been a reading visitor for over a year now. My Dad, “Mr. Invincible”, was diagnosed with stage IV NSCLC almost two years ago (March 04, age 60). He’s an amazingly strong man, tough as nails, self-made businessman, who has always been able to conquer anything – thus, the “Mr. Invincible” persona, especially in his children’s eyes. I think the family has been through the shock, disbelief, and denial phases several times in the last two years because of the kind of man we know him to be, and he continues to amaze with his perseverance through this nightmare.

The pain is the worst, what a cruel disease! My Dad (Jerry) and my step mom (Jane) live in SW Florida while the rest of the family is scattered around FL & GA. Unfortunately, Dad and Jane have been through most of this on their own. Jane is a wonderful person who has always been a great step mom, and we are extremely grateful for having her in our family for over 30 years now. I wish I could help them more and have tried to do a lot of research and reading on the internet for them. I have told Jane about this site and have encouraged her to visit and join because I think you all could really help give her a sense of not being alone and be a source for information and sharing. I hope she will.

My Dad has done extremely well with his treatments responding even when certain Docs didn’t think he would and he has never lost weight. The first summer (2004), they were able to go to their summer home in the mountains of NC and continue treatment. That summer home, by the way, was on the side of mountain that was historically an apple orchard/farm that was heavily treated with arsenic and now the soil is full of arsenic. We always thought that was suspect for my Dad’s current condition but who knows (the man that owned that house before my Dad also had lung cancer too, hmm).

The current situation is concerning. My Dad’s pain has been increasing and spiked up tremendously after a recent treatment of Zometa and Chemo. This was about two weeks ago. Last summer/fall Dad had some cancer in the femur and received radiation and had a pin placed along the bone. In mid November, they started Chemo again because the Doc said it was getting active again (rib). He had a bad reaction to a new blend of chemo and was hospitalized for a few days. In December, they went back to the old chemo drugs and started again. I think he has had only one treatment since which brings us to now. He couldn’t even go to treatment last week because he was in so much pain and couldn’t sit there – they feared a leg fracture but that is not the case. We are wondering about the Zometa and the fact that in small percentages of individuals – people actually experienced an increase in bone pain vs. a decrease. I have had difficulty finding any detailed info on those experiences and was wondering if any of you might have any similar situations? We are looking for answers and hope – Dad seems to be losing some of that lately when the pain is so intense (talking about home hospice, Oregon, etc.). His morphine usage is up quite a bit and he has had to use some of the oxycotin again in the past week (was on that in the beginning when first diagnosed). I wish I had more details but we live in different states and I have tried to lay out what I remember.

Thank you all for being here! Sorry so long.

Brenda

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Brenda,

I am so glad to meeet you and that you decided to finally come forward. Your Dad certainly does sound like a remarkable man.

I am sorry about what you all are dealing with. It is hard when family members are not close by. Makes you feel sort of helpless, doesn't it? I sure hope your step mother comes to meet us. I am sure she could use some support too.

I do not know the answers to your questions. Hopefully some of our "experts" may be able to help you. In the meantime, know that I will be hoping that things settle down for Dad and he starts to feel a little better.

Kasey

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Hi, and welcome! My wife gets Zometa once a month for bone protection and has had no bad side effects. However, there have been people reporting here who have had bone pain from Zometa, so it is not unusual.

My wife is about a year ahead of your dad, with the same diagnosis, Stage IV NSCLC. Wish your dad and your family all the best. Don

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Hi, I don't have any specific answers to your questions but did want to welcome you to the board.

I am sure there are others here that will be able to help with your questions.

Really glad you decided to post :)

Blessings,

Libby

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Brenda -

I asked our oncologist neighbor about the Zometa reaction -- he said it should not cause any serious pain, yet some people get bad, flu type pain after the first and second treatments...yet then tolerate it well.

My mom had bone mets and terrible pain. We tried lots and lots of things. She ended up doing Duragesic patches (72 hours of medication and very easy to increase or decrease dosage) plus the Actiq Fetanyl suckers and Decradron (steroid.) We were able to get the pain pretty much under control. Once hospice stepped in we went to a morphine pump which was great. She was lucid most of the time, although was a bit out of it when we increased the sucker dosage.

Your dad's track record is amazing...I hope it gets the pain under control. Please feel free to PM me.

Best,

Holly

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I just want to say welcome. I pray your Dad gets his pain under control. There are specialist who deal with pain. As you say it wears you out and then where do you get the strength to deal with the cancer treatments. Keep us posted. Donna G

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Hello Brenda.

So glad you decided to join us and I welcome you.

I do not have experience to that particular treatment, but I am sure you will get some opinions here. You have already received some.

You dad sounds like a wonderful person. I know you cannot be with him due to distance, but just be there when you can and thank G-d for the phone.

Keep us posted on his progress and I pray for him to have that horrible pain lessen. Poor guy, he should not have to suffer so much.

Prayers sent to him.

Maryanne

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welcome. I love that you're trying to do what you can for your dad, from where you are. that's all we can do, after all. I have no real substantive help for you, just a welcome. you'll get everything you need here, it's an amazing place.

xoxo

amie

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Brenda,

I do not have any experince with Zometa, but I want to welcome you to the family. Please continue to encourage your Stepmom to join us. This is a wonderful board, with the most amazing people. I pray your Dad's pain can be controlled.

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Welcome Brenda. Your dad sounds like a real fighter, well armed to battle this disease. My husband was given Zometa and suffered no pain from the medication. I believe I have heard of people that did have problems with Zometa. I'm sure someone on the board will be able to give you more information. Please tell your mom that we would love to have her join us.

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Thank you all sooo much for your kind words, info, and welcome. Good news - Jane did get on-line here and registered but had difficulty getting the system to recognize her username and password. I will help get her in - she will be Hoskie!! Please be looking for her entries. I will give an update for Dad in another section now - probably in General or Family/Caregivers.

Thanks,

Brenda

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Hi Brenda!

These words struck me hard because it reminds me so very much of dad.

He’s an amazingly strong man, tough as nails, self-made businessman, who has always been able to conquer anything – thus, the "Mr. Invincible" persona, especially in his children’s eyes.

Anyway, hello and welcome, looking forward to hearing more from you soon!

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This isn't a site for Caregivers only. Don't forget that there is room here for your Father as well. Many of us who post here are Lung Cancer Survivors and not just family members and caregivers. We Survivors come in all Stages, as well as physical and emotional conditions. We can make the journey through diagnosis and treatment and when treatment ends much easier for one another. So make sure you Dad knows HE has a place here, too. And make sure he knows he isn't the only guy...we have a number of male Lung Cancer Survivors who keep things interesting! :wink:

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