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Stage 4 - Radiation Question


jheese

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My mom was just officially dx today with stage 4 non-small cell lung cancer. There's a 3cm x 5cm mass on her left lung, by her heart. One of her lymph nodes shows cancer. They also found it in her rib and in her brain (5mm lesion). The oncologist gave her 6 mo w/o treatment, 1 year with. She's going to get a second opinion at a very good place on Wednesday.

Does anyone have advise on how long radiation might take to help with the insane pain she is in? They say it's nerve pain from the lung tumor and bone pain from the rib. She lives in a small town four hours away from her doctor and would like to spend her time at home, but knows she has to get treatment away from home.

Any advice would be great. I'm absolutely mortified - this woman has been there for me through everything, and I can't bear to see her in so much pain. Morphine doesn't even touch it.

Thank you.

Jill

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Hello Jill and welcome,

Sorry you needed to find a site like this but glad you posted and have joined us.

I cannot answer your questions but will say that someone will be along that can. This is a great family here and the people are more than willing to share their experiences and offer advice as well as help you and your mom out in whatever way we can.

As for Mom's pain, she needs to let her doctor know that the morphine is not giving her the relief she needs. Perhaps something else would work better. It is my understanding that the radiation will help to ease the pain, but I am not familiar with how long that will take.

Please keep posting and let us know how we can help

Sending you prayers for strength

Chris

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Hi Jill,

without knowing your moms history and exact dx., I can't be specific. I can tell you that with my dad, his pain from his metastasis was almost eliminated after the 3 day of radiation. There are also prescription pain meds that should help your mom until the radiation has a chance to work.

Perhaps after her second opinion things will be clearer and a solid plan will be in place. If she is going to start chemotherapy as well, she may need help driving the 4+ hours to and from treatment. Some peopel experience side effects that prevent them from driving, etc...

What you're doing right now is great. Get as much information as you can, write down your questions for the doctors and explore every treatment option available. Keep us posted. we will be here for you.

Prayers for your mom

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Jill,

I am very sorry about your mom. I can tell you my husbands' experience w/ radiation and what I have learned.

There are different types of radiation given, you definitely may want to research some or ask your moms' dr. Of course the location/s and type of lc your mom has may or may not limit her options.

With the "typical" external radiation, the rule of thumb is once your radiate one spot that's it, you really can't go back, unless she is given a small amount of radiation.

In terms of rounds/weeks/days, unless she is eligible for treatment such as "cyberknife". Typically it is an every day 5x's week for x number of weeks. I know it can be difficult because of where she lives.

Keep on pressing her dr. to get her pain under control. I know that pain management is a trial and error sort of thing. There are other options besides morphine or other medications that can be given w/ morphine.

Also is she going to get chemo? can she? and if she is find out as much as you can.

What I can tell you is that any treatment is going to take so much out of her. Also radiation and chemo. treatments accumulate, and radiation never forgets, which I take to mean it stays w/ you .

Make sure your mom gets as much nutrients as possible, Ensure, Boost are good. also small meals as much as she can. She is going to need as much strenght as she can muster up....

I'm sorry you have to go thru this, I know how extremely difficult it is. But you will find many people here, with alot of info. and experiences...

Grace

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My mom did not lose her appetite during treatment, but her esophogus became very very sore, so it was impossible for to eat anything and she lost alot of weight initially. This lasted for about 3 or so weeks. As far as treatment goes, there are many differnt types of radiation they can do. Are you close to her? Can you attend any of the first visits? If not, have her take a tape recorder so you can understand what is happening. Welcome and keep us posted.

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Thank you all for your replies. I can see that you all have been through a lot...I know (hope) it's going to be a long road ahead and pray that we can beat the odds.

I am driving mom to her second opinion on Wednesday. I was dx with MS two years ago, so mom has been my note taker for many dr. visits - I think I probably owe her a few. Since she's been out of it most of the time (morphine), I think it's very important that someone is there that is thinking clearly. She hasn't decided if she wants to do chemo yet - very concerned about quality vs. quantity. She will be doing radiation.

If anyone has any advice on what one really needs to ask the doctor, or any kind of advice at all, please send it our way. I'm starting the list of questions, but I know there must be things we haven't thought of. Thanks again - take care of yourselves and loved ones.

Jill

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Welcome, you can not pay too much to what doctors say about survival, because they really don't know. There are many survivors that have gone way beyond what doctor thought, I am on of them, and believe me I did not believe they knew what they were talking about. I was told that there was no cure for my cancer. I had stage IV with a pleural effusion. They told me the fluid would not go away by itself and that the best we could hope for was to slow it or if we are lucky to shrink it some. Well the fluid did go away and everything else is gone. I have been cancer free since November 2005. So the best thing your mom and you can do is decide that you are going to prove them wrong. Those forecast about me came from Sloan Kettering and it is the same as I heard locally. It' just these dumb statistics they put out. Forget about them and start your journey to beating this.

Ernie

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You can also contact Angel Flights, they provide free airplane flights for patients and family to and from treatment and sometimes they can provide the ground transportation from the airport. Just Google angel flights and you should find the chapter in your area, if you have trouble let me know and I will find out from our chapter who to call. We are all here to help you and your mom.

Ernie

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jheese,

I forgot to mention to you about quality of life. The new drugs they give with chemo have reduced the side effects for a lot of people. I went through all my chemo and never had a bad day and did not loose my hair. Most people are not as fortunate as me, but there is a chance and I think it is well worth the risk especially since that is the way you give yourself a chance for many years of quality life down the road.

I would ask about Tarceva at your second opinion it helped me a lot.

Ernie

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Hi Jil. I underwent radiation 5 days a week for 7 weeks and had chemo every Friday during that time span. I live in the country so had to drive to town for the treatments but managed to do so on my own at least for the radiation. Due to the Ativan that they included in my chemo cocktail they suggested I have someone drive me home so in order not to mess up the balance which was working well for me I did as they asked. As far as the pain I was experiencing before radiation started I can honestly say that within two weeks of starting the treatments the pain was lessening ... not sure how to described it now because it feels more like a skin thickening than an actual pain like I was having before treatment. I go in for my PET scan next Thrusday so we shall see what they find out. My best to your mom. Judy

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Hi Jill,

So far from what I've seen, been told and read on radiation is more a guideline. My neighbour = pain relief about 3 days after the final treatment and it lasted short while. My Dad = clearer breathing immdediately but effects uncomfortable and still has them both. I think it's all how your body responds and reacts to it. That you don't know until you try......as for the heart it made me VERY skitish. My Dad's mass is directly infront of the heart and I was worried with radiation coming from the front and back. It worked out fine thankfully, those lazers are very precise and their placement was planned throughly. So throughly my Dad got annoyed and wondered if they actually knew what they were doing. :-) That was the longest of all the appointments ..... after that it was in and out.

Good luck in the coming days ....

Tammy

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Jill -

Welcome. For my mom it was different due on the area. For her back, it took about 7 days...for her ribs less than three days. Due ask about increasing the fractions of the radiation (stronger doses) -- I don't think they will do that for the lung...but can often for other areas....and tell the doctor she needs something else for pain. Different drugs work diferently for people..the fentanyl patch was life saver for us.

Love,

Holly

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Hi Jill,

I'm very sorry to hear about your mom. I can tell you that I had radiation to my hip and it helped with the pain. I wasn't able to walk and after 14 treatments and a few weeks for it to kick in, I was up and doing laps around the city park (1 mile). The radiation takes time to kick in though so be patient.

Don't worry about the 1 year thing the doc said. He gave me 6-8 months. I'm still going strong.

If you need anything, just yell!

Darrell

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I am in a similar situation. My mom was diagnosed a few weeks ago.

I was unclear on where the pain was and where they were radiating. My mother's symtoms were stroke like, not pain. So they are radiating the brain for 3 weeks, 5 days on, 2 days off.

Hopefully this will shrink the tumors and give her her mobility back.

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Hi Jill,

At the very beginning, my pain was helped tremendously by oxycontin, long acting. I still take it, once in the morning and once at night.

I would also not listen to the stats. As you read more of our stories, you'll see that lots and lots of times we outlive the doctor's predictions.

I also feel that chemo helped me very much. Not a piece of cake, but not anywhere as bad as i thought it would be. I personally feel that having gone through chemo has given me a better quality of life.

Good luck. We're here to help.

Joan

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Hi,

Sorry you had to come to this site but glad your here. My dad was dx with nsclc in July. Like your mom, my dads pain was unbearable. The pain was caused by the tumor "eating" away at his bone (vertebra) and it was pushing against nerves coming out of the formina (spine). We went through several different types of pain meds. Nothing worked. FINALLY, the radiation onco wrote a script for a pain patch (Fenytal- not sure of spelling). Dad first tried a 50 microgram patch, it didn't work. The doc upped it to 100 micrograms and that did the trick. He changes his patch every 3 days and takes percocit for breakthrough pain.

My dad did have radiation but I'm not convinced it helped with the pain from the tumor. The radiation was initially aimed at his neck. It did cause horrific pain in his esophagus. I can't describe the pain he went through with radiation. I've never seen my dad not be able to handle pain, but this...trying to swallow put him on the floor.

Depending on where your moms tumor is, hopefully she won't receive radiation to her neck. I'm not trying to scare you my no means. Just be aware that the radition might cause swallowing difficulties.

Your in my thoughts. Take care.

Diane

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