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anyone taking Iressa? why can't my Dad walk


shordy

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My Dad has NSCLC stage IV that's also spread to his liver. They put him on Iressa and about 3-4 weeks into it, he ended up with fluid build up and then couldn't walk. He's been in the hospital now for 24 days. His CT scans & MRI's have shown up good, so yesterday they did a muscle biopsy on his leg and it'll take a week for the results to come back from Arizona, he's in KY. We don't know why he can't walk. Is it something from the Iressa? He can move his legs around in the bed a little and his feet too, but can't bend them up or stand on them. He's still swelled a lot. Any ideas would be appreciated, he's my Daddy and I just love him so much, he's just breaking my heart. He's 66 and was diagnosed on his 66th birthday last August. Thanks, Shordy

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Shordy, I am so sorry that your dad and your family are going through this. My dad is also on Iressa, and from what I read of the possible side effects, I don't recall any mention of fluid build up. Its good that the CT and MRI came back good. Seeing as he is on the Iressa, I take it that he is not on any other meds for the cancer. I suppose an allergy is possible, of course I'm just guessing. Did they discontinue the Iressa? I will try to look up a few things to see if there can be a connection, I mean, just because the side effects may not mention it, dosn't mean it isn't possible. Everyone reacts differently to different medication. But I have to say, that the thought that he was allergic to it did pop into my head. Please let us know how he's doing. I know that waiting for test results is AGONY. And as I see it, calling regularly for the test results before the week is up is your right. Just explain that you're sorry, but he's your dad and this is a very frightening time for both HIM and your family. I'll keep an eye out for your posts, and there may be someone here with more insight. I'm sorry I couldn't give you the info. you are seeking. Take care, Deb

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Thanks so much Deb for taking the time to reply. I think they've had Daddy off the Iressa for about a week now. They've now been giving him Lasix and physical therapy. The fluid seems to be coming off of him but of course Daddy thinks that the therapy isn't rigorous enough. He can't even bend his legs upwards and I think that he thinks that he should be on a treadmill or something when he can't even stand with help. I'm just hoping that the muscle biopsy will come back clean and the therapy will help him. He isn't understanding that the therapy has to be done at a slow pace for him. I'm also worried that the cancer now will progress since he's not on any kind of chemo. I do thank you so much for your response. I see that you said your Dad also has NSCLC, I hope he's doing well. It's sure a rough road for everyone, especially for the one going through it. Thanks a bunch, Shordy

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Guest DaveG

Shordy:

I have been reading what is transpiring here. I am sorry to hear about your Dad and aeverything he is going throuh. He sounds very courageous. As one who shares this disease with your father, I find it so difficult, sometimes, as I am an Early Stage NSCLC. Yet we have the same disease, and the same concerns. Your father sounds as if he is very positive and believes that he can beat this. That is good. Continue to be supportive, as you have been. I am sure he appreciaties that.

Remember you are among friends here.

:D:D

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Thanks so much for taking the time to write. I went to see Daddy yesterday and I couldn't get over how much fluid has come off of him. He's lost 25 pounds...of fluid. The lasix got it off him, his feet and arms/hands look great and normal. I'm so glad. Now if the muscle biopsy comes out good that's all we have left to worry about other than the cancer, since he's not on his Iressa right now. He's getting therapy from a really nice guy and he seems to be doing great with it. He still can't stand, so walking would be way down the road. I know he wants to go home so bad. He seems to be in a "let's get this show on the road" attitude. He's got a really good attitude and you're right, he's tough and I think if anyone makes it out of there, he will. At least that's what I'm praying for. Thanks so much for the note and for your concern. Thanks, Shordy..p.s. of course this is a picture of me & my Daddy

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Shordy,

Know exactly how you feel about your dad...I'm a daddy's girl too and we have to get tough if we intend to help them through this!! I'm glad you have some good news to report. your Dad looks like a tough guy! (Or a big teddy bear) (your pic looks great) and I will be praying for your dad and your family.

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What a sweet picture of the two of you! How adorable. Thanks for writing, every little bit of encouragement helps. I'm doing very good being strong when I'm face to face with him, but not very good when I get home. You're right, he's a strong man, stubborn, but I think that's what's helping him with this. He's very determined, he hasn't given up. He's really anxious to get going with this therapy, I think he'd take it 50 times a day if they'd give it to him! So, he's trying to do some on his own. His attitude and outlook has changed so much, he use to be the kind to never hug anyone (except me, I made him!) or to tell them that he loves them (except me, again, I made him :) He's changed so much and it's for the better, it's just so sad that it takes something like this to open someone's eyes. He's still got a sense of humor and lots of drive so I hope all these things will help him kick this! I'm glad to hear that your Dad is stable. Being a "Daddy's Girl" isn't such an easy job!! But I wouldn't change it for the world. Katie, my Dad was also diagnosed August 2002, right on his 66th birthday. Thanks so much for your concern. Take care, Shordy

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Guest DaveG

Shordy:

I can identify with having the diagnosis of cancer on a birthday. I had my first surgery just 20 days before my 58th birthday. I spent my birthday trying to deal with recovery and having a chest tube in. The real birthday present came three days after my birthday, when the doctor took the chest tube out.

My daughter plays a big role in my well being. We call each other and email each other frequently. When I was in the hospital, which is right next to the clinic where she works, she came to see me on her breaks, and then would spend a couple of hours with me when she got off work. It was nice for the 2 of us. Her office was on the 4th floor of the clinic, and I was on the 4th floor of the hospital. There are ramps between the clinic and hospital. She never had to go outside, or take an elevator, to see me. The head of her Department, Ear Nose And Throat, (My daughter is an Audiologist), even stopped by to see me.

Before I switched Oncologists, we would get to see each other every 3 months. The 120 mile trip got to be too long for me, and I found an Oncologist in Madison, Wisconsin, at the U of Wisconsin Cancer Center, which is only 45 miles away. I still have my surgery follow-ups at the Marshfield Clinic, where my daughter works.

Yes, Dads do like our "little girls" :D:D:D8) They never grow up, I can still remember holding my daughter for the first time, 31 years ago, this coming Saturday.

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My dad and I never said I love you's over the phone. Now we do. My dad use to never hold hands or hug (After we all grew up) Now he does. ALOT. I catch him looking and me and I'll smile. He is sweeter with my mom, he is thankful and considerate about everything. On the flip side-- ALL of his "friends" that he hasn't seen since he retired 2 yrs. ago came out of the woodwork! Some cried, most tried to encourage him, some even call or e-mail me regularly for updates on his condition! It is a shame that the love and support only comes after an illness! But you and I (everyone touched by cancer in this way, I think) will be different. I think I will never be the same, and I look at things so differently now. Everyday silly things are mundane, I don't stress those anymore. And yes, I'm really scared. I'm scared every time my dad goes to the doctor, I'm scared of what the next x-ray or CT will say... I'm scare to lose my dad. But I enjoy every second I have him! We need to be strong! (I use to go home and cry too! It gets better with time--but it's still a roller coaster, and I still cry sometimes when it gets to me) I believe that being Dad's biggest advocate has saved him many times. Keep a close eye on his doctor(s), on the treatments, and research, ask a ton of questions. Dr.'s are overworked, and sometimes overwhelmed, sometimes even detached... NO one loves your Dad the way his family does and you can keep those Dr.'s in check!

Sorry for the novel. I just know what your feeling right now and wanted to share.

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Judy I so appreciate your encouragement. I have absolutely no idea why it's having to be sent to Arizona, like I said he's in KY. That's a good question, and it'll take up to 10 days to get the results back. Thanks again and I hope you're doing well. Shordy

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Sorry that you also had a bad birthday, but glad to know that you're doing well now! That's so neat that you got to spend so much time with your daughter. Daddy told me the other day that I'd regret not having kids. That made me a little sad that he said that, because I'm sure I will. So I told him that I'm sure I will later, but right now I don't. I'm a dog person, not a kid person, some people just weren't meant to have them and I'm definitely one of them. But I do see how important the family is in helping someone with health issues, hospitals, nursing homes and such. It would be so scary for him if he didn't have any family and I know that wouldn't be getting the care he has now. My Husband is 20 years older than me, so that's a little scary, my best friend that also doesn't have any kids has threatened me with the idea of us being together in a nursing home!! That would be a hoot!! Thanks again for your support and for sharing your story. Shordy

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Katie, you sound so much like me. I loved your "novel." I saw a lot of similarities in us. I feel the same way, I don't think I'll ever be the same again either. I also feel the same about the little things that use to irritate me and now they don't matter at all. As they always say "don't sweat the small stuff." How true that is. I can now just be walking along and thanking God for the ability to walk. I wish some "complainers" and I have a relative that is that way, I won't mention names, but I wish that person could spend just one day with Daddy and they'd see that it's all just little stuff that they're complaining about, it drives me crazy, here's my Dad fighting for his life and here's the silly complainer, complaining about imaginary things really. They'd have something to complain about if they were in his shoes. Thanks so much again Katie for sharing that with me, it sure did sound like me...You take care & I'm hoping all the best for your Dad, Shordy

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Tiny, thanks so much for such a nice note. I don't know why but I'd never read the "early detection" part of this website and now I wish I hadn't of. I really did at first go in search of seeing if I could find out just how long Daddy would have to live. I see where he has a 50% chance of only living one year!!! Wow, I didn't know that. Although it's something I wanted to know, now that I do, it's so scary and I hope that no one ever tells Daddy that. Thanks again for the kind words. Shordy

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Shordy,

I researched and got all the info I could on my dad's cancer...then I was haunted for weeks (MONTHS) about what I had learned, (Still freaks me out, actually). I don't tell my dad anything unless he asks. And so far, he has'nt. Why make him fret when there is a possibility that he could survive this! Why not? The survival rate is NOT '0".

You try to hang in there and remember that those numbers and statistics are unreliable, old studys that have nothing to do with us. Each case is different and each patient responds differently. You enjoy you dad now, today, and each day that follows! Take Care

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Katie, thank you so much for your note. I've done the same thing, researched it to pieces. But I'd never saw this and it has scared me so bad and I'd NEVER tell Daddy this. My best friend's Dad just passed with bladder cancer this past October and he was a doctor and she just told me tonight that her Dad had told her that my Dad would be gone before him. She said she never had the heart to tell me. But that's when they told her Dad he had 2 years and didn't last but a few months, mostly because he couldn't take the chemo, it made him too sick. So, now I really don't know how to take this and I thank you ever so much for your time and your concern. I guess what I'm saying is that I don't know how I'm going to deal with this...less than a year? Too hard to comprahend. I feel like setting next to him every second and taking everything in. I really do hope that he beats the "statistics." Here my best friend just lost her Dad and now she's going through it all over again with me. Thanks again Katie

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No one knows better than a cancer patient or a close loved one that we are only given a day at a time. No one knows how much time they are given, not even those healthy without cancer. I prefer therefore to help my wife life one day at a time and to make the most of each. This does not mean that I stick to her like glue. I have to have a life apart also, so I carve a piece of that out for myself to keep me sane and healthy. Each day is a precious gift and we should open the gift, celebrate and make the most of it. Blessings to you all. Don

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Don, thank you so much for your note. I read it to my Husband and he says "he's right." I guess it feels different if your days aren't "numbered" and now that I think my Dad's may be, it's something that I'm going to have to try and deal with. I just don't know what I'll do if they tell him that, I already feel so sorry for him. He's talked about being depressed, but he's still hanging in there. I try and stay really strong for him, but if he only knew what I do whenever I get home...cry of course. I see that you have pets, I have 5 dogs, they're my "kids." I truly wish the best for your Wife and again, thanks for the note of encouragement! Shordy

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Guest DaveG

Shordy:

Could chatting with you tonight. I hope our humor (or maybe I should say, my humor) didn't upset you tonight. You looked as if it was an escape for you tonight to be involved with the chat room.

Lung cancer is very devastating, and we all know that. We are not making light of that one bit. We all realize that humor is so important to one's well being, so the chat room is sometimes a way for us to let that out.

You and your father, and your family, are in my prayers, as they are in the prayers of everybody here.

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Thanks Dave for taking the time to write a note, you seem very involved in so many lives, I'm sure you're very busy. I loved the chat room, it was informative, helpful, hopeful, encouraging and yes it was very humorous at times. It was great to see that people with daily struggles being able to have some humor still with them. Thanks for this wonderful website, it's been a great help to me, as I'm sure it has for many others. Thanks again, Shordy

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Guest Ruach

Shordy,

My mom started falling as her legs got weaker and balance thrown off early in her chemo. treatments. Through physical therapy and adjustments to the decadron (maybe) she hasn't fallen in about 6 months now (well, except NYE when we got her to dance "the hustle" at a friend's house... a wonderful WONDERFUL thing to see... her living a little bit).

Focusing on the cancer is good when you need to make hard decisions about treatment -- don't forget to focus on the living part of life too. Your dad will get overwhelmed sometimes -- you will too. Don't push him unless he's ready to be pushed (or needs to be pushed), and when the time is right, motivate him to do something fun and have something to look forward to.

My 58 year young mom was diagnosed with Stage IV Adeno. almost one year ago. Her cold and hopeless Dr. (still her Dr.) told her he would try to "get her 6 months" and that he could not cure her. One year later, she's still around -- and this Saturday she will be flying into town to meet my first child (her 2nd grandchild) who was born 7 days ago.

Hang in there... and hear all our prayers. We all go through it separate, but together.

:wink:

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Ruach, thanks for the note. The social worker came in yesterday and tried to assess him for possibly going to a rehab place. They don't know if he'll be accepted or even if he can do the program. He says he doesn't think he can. Thanks for your note and I wish you & your family all the best. I did something terrible and left my Dad's room yesterday after a fight. He's so mean to people and I couldn't handle it. I'm very sorry for that. Thanks again, Shordy

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shordy,

Sorry to hear about your dad. The swelling is probably from the liver mets. You need to ask about chemoembolism or radio frequency ablation immediately. If the liver mets can be resected or reduced through regional chemotherapy it must be done soon

Other things to ask. I read that swelling can be due to thrombosis. If this is the case ask about herapin (a blood thinner)

Also ask about albumin threapy. Albumin is produced by the liver and when there are liver mets sometimes this goes low. Low albumin, I read can cause swelling.

lactulose (Lasix) will control the ammonia that may stay in his body.

In any case, you may want to try to get to the Markey cancer center in at the U of Ky for a 2nd opinion. This is probably the closest NCI desginated center in Ky.

The same thing swelling happened to my mom.

" ...Colorectal hepatic metastases: resection, local ablation, and hepatic artery infusion pump are associated with prolonged survival. "

http://www.leiomyosarcoma.org/staging/m ... .htm#liver

It is good at least that he is getting Iressa, it works well in some patients.

Praying for you Dad

John

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