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Please, My Father Needs Encouragement!


KC

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Hello everyone. I have posted here before, but mostly just lurk and pray and laugh and cry along with everyone. My father has been battling NSCLC Stage IV since being diagnosed in December 2001. They say it is BAC. Surgery was never an option, although I begged for it because it started out with only 3 small nodules, 2 in one lung and 1 in the other. I couldn't find a surgeon to do it. He has been taking chemotherapy ever since diagnosis with a small break (about 10 weeks) on Iressa. Each time he tried a new chemo drug he had initial shrinkage and stablization and then progression, so it was on to the next. His latest chemo has been Cisplatin and CPT-11, he started that in July after they discovered liver mets. His last scan at the end of November showed shrinkage in all lung nodules (there are many) and 50% shrinkage in the liver! We were thrilled. He continued with the weekly Cisplatin-CPT-11, even though it knocked the heck out of him, but he figured it was working. I also had started him on TM therapy at the end of September. Lately his red blood counts have been taking a beating and he has had 2 transfusions so far along with Procrit. He had been having back pain on and off for a while, but finally told his onc. as the pain was not letting up as much and last week we discovered he has mets to his hips or spine. That is what was causing the pain. He feels fine otherwise, except for this pain in his back. He can't seem to get a break. When one thing goes away, something else pops up. He has now just received his first 2 of 10 radiation treatments. He is in alot of pain in his back and my heart breaks for him. He is so disgusted, depressed and just about ready to give up. I don't know what to say to him anymore, he needs to hear from people who have been there and done that. He doesn't really talk to anyone about what he is feeling or what is happening, especially me, since he doesn't want to worry me. I worry anyway. I'm worried and scared to death. When his friends or his brother calls he doesn't tell them how he really feels and I can see it in his face how he really feels. He said the other day that all he wanted was 7 more years. He has been fighting for his life for two years now. He has taken every treatment, pain and bump in the road with grace and dignity, more than I ever could. His courage is just remarkable. I live with my father along with my 2-1/2 year old daughter who is the light of his life. I know how badly he wants to see her grow up, at least enough so she will have memories of him. I think that is where he came up with the 7 year number. That is what breaks my heart more than anything. She can't lose her Grandpa, the most gentle caring, best man in the world and her biggest fan and I can't lose my Dad. He is only 65 years old. But all of this good news and then followed by bad news is taking it's toll on him. He can't even rejoice in the good news anymore, wondering what it too follow, it's a darn shame! I think my father believes that if he now has bone mets that the other tumors are probably growing too. But it's possible that they aren't, isn't it? If I tell him that, he just thinks I am trying to pacify him. Please, any words of hope, encouragement are greatly appreciated. I am going to print out the responses and let him read them. He really needs hope and encouragement right now more than anything and he needs it from someone other than me. I apologize for the lenghthy post. Thank you all so much and god bless.

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KC

There are many people here battling with mets to different areas.

Don Woods' wife, Lucie, has battled bone mets - radiation to the area with the critter seemed to be the ticket (let me know if I'm wrong, Don)...

BobMC and TBone are fighting brain mets with radiation (and doing a mighty fine job holding up their heads)...

Liver mets - I believe that's what GinnyDe's husband is currently battling...(along with a broken leg now)...

MANY people have dealt with chemo with varying degrees of success...

....and Iressa has been the magic bullet for a few, too (Ry's husband, for example).

LC is a "personal" disease - everyone's is different as it is their own cells that have mutated and multiplied.

No matter what the stage, there is always hope...it ain't the size of the dog in the fight, it's the size of the fight in the dog!

Keep on keepin' on,

Becky

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KC, first of all, your dad needs to get his pain managed. Bone pain is very severe. Is he taking any pain medication? If not, he needs to get on some; if so, he needs to get a stronger dose. Second, my wife has had bone mets, and she is on Zometa once a month to strengthen bones and ward off mets. Yes, even with treatment, bone mets can grow. Mky wife just finished her chemo when one showed up on her tailbone. Many times, radiation is used to target a bone met, especially when it causes a lot of pain, or threatens the bone integrity. Radiation has been successful on my wife for bone mets. Hope this helps. Don

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Thanks for the prayers Nancy. Thank you Don for your reply. Yes, my father is taking Hydrocodone (Vicodin), 7.5mg./750mg. every 4 hours. I don't know how much it helps, it help alot the first two days, but I guess his body adjusted to that dosage quickly. I try to get him to take two at a time and he won't. The prescription says he can. He's so stubborn, just like me. He is receiving radiation right now, 10 zaps, he is getting number 4 right now. The mets are small, but I guess they are in the wrong spot in his back (lumbar spine I think), so it's causing the pain. His onc. gave him a dose of Aredia for the bone mets last Thursday. He gave Aredia instead of Zometa. I'm glad to hear the radiation zapped your wife's bone mets, I'm hoping for the same with my father. Thanks again, Don.

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Hello Don,

So very sorry to hear of your dad, but also wanted to say that this beast is beatable!! :x:x I agree with Becky , she's good with the words and knows her dogs! And she right when she says " its the size of the fight in the dog" :x Bottom line is there is always hope!!! :) and we don't have to do this alone!!,

By the way, I was also on Vicodin for pain and just went off of it in favor of liquid morphine. The vicodin was too tuff on the stomach and difficult for me to get down. Gotta be carefull with the dosage on morphine but I've found it too be much better.

Anyway, again welcome to you and your dad, glad your here and know that he'll be in my thoughts and prayers!!

God bless, be well and hang in there!

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack

PET taken 1/5 - hot spot in mediastinum May be cancer??

"Absolutely insist on enjoying life today!"

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Hi KC,

Youve been given excellent advice above. My father is only 64 too and has battled cancer before this lung cancer(see my signature). So, chemo is hard on him. He did have IMRT (intense modulated radiation therapy) high dose radiation right to tumor sparing surrounding tissue, little or no side effects. They couldnt complete his though, because he then was found to have brain mets so we had to work on that.

We are now looking into vitamin supplements/nutrition/alternative treatments. We go to a doc that specializes in this on Monday. Chemo is hard on him because of his history. We also, pray A LOT!!!

I have two sisters and we are close to my father, I have three daughters who adore him too. We've brought him to Healing Masses, Anointing of the Sick, Sloan Kettering in NYC for second opinion and now to this alternative doc.

Dont be discouraged by the bone mets. Radiation can be used to alleviate pain. Sounds like the chemo was doing some shrinkage too, so that is great!!!

I, too, begged the surgeon to do the surgery. My father was originally eligible as he was diagnosed at IIIa, but the day before the surgery; surgeon biopsied a suspicious supraclavicular node which turned out to be cancerous; moving him to IIIb - ineligible for surgery. I understand why now. If the cancer has the ability to move out of the lung; or in your dad's case to the other lung; you have to work on stopping the spread. A lobectomy is a major operation with major recovery. Surgeon explained that time is better used stopping the spread.

Please dont be discouraged; tell your father not to be either. There is so much out there and youve had shrinkage so far. Also, some people on this board have discussed RFA for liver mets, I dont know much about it, but maybe you could see if its something for your dad, or maybe the chemo is taking care of it.

Keep us posted!!!! DONT GIVE UP!!!

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So very sorry to hear that your Dad is in pain KC. I am not surprised that he is depressed, I know my husband went through a very bad patch after he was diagnosed. I was told that there is absalutely no reason for a person to suffer with pain in this day and age. I am sure there is something the doctors can give him. I hope radiation will do the trick. My heart goes out to you. You and your Dad and family will be in my thoughts and prayers.

Paddy

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Thank you all so much for your replies. You are all such kind, wonderful, thoughtful people. If the pain doesn't subside soon, I'll ask about the morphine, but my father, I'm sure won't be into that. He won't even take the two vicodin for fear of getting addicted. He was a marine and I guess they were taught to tough it out. It's crazy, I know, I hope I can change his mind. He's so difficult to talk to lately, he's very touchy and defensive and short with me, but I understand completely. Only, he doesn't know that I understand, it's been a difficult week. I know when I'm in pain, I have no patience for anything or anyone either. Linda, we have spoke before on the other list. Thank you for your support and I hope your dad is doing well. I used to post on this list way back when my father was first diagnosed, before it was all revised and fixed up. Then I moved to Florida last January and forgot about it, as I had the website saved on my computer at work. Luckily, I found it again and that is how I found out about the TM, from Cary's post on the alternative board. I thank god for this board and I hope that I can offer the same support to all of you that you have shown me someday.

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KC,

If your father do not want to take medication for pain, would he

accept patches, there are some with morphine, different strength

and they help a lot.

Aredia is in the same line as Zometa, but both help for the bones.

A tough marine will fight with all he can, he needs the love and

support of his family near him and he has it with all of you.

Some relief from the bone pain will boost his morale and yours,

keep trying to get it for him.

Hugs and prayers going.

J.C.

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