cathy Posted February 14, 2003 Share Posted February 14, 2003 Just wondering if anyone can give me alittle input. Dad was suppose to start chemo this week, but has been losing weight so the doc wanted to put it off to monitor his weight for a couple days. Its not that he doesnt have an appetite cause he has been eating. heres my question, he had surgery in nov. they removed half or more of the lung, he is starting his 4th week of radiation and is getting very short of breath,more so than after the surgery. He did go see his cardiologist and they said his heart is fine. Does the radiation have anything to do with it? Also his throat started to burn so the radiologist told him to get some gluatmine.Well it seems like once he started taking that he was very nauseated,so he stopped and feels a little better. I told him I would try to see if anyone had similiar experiences. Any info would be soooo appreciated.. I keep telling him he's not alone. I need to get him over my house so he can read about all the wonderful people here.......cathy Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted February 14, 2003 Share Posted February 14, 2003 Cathy i need advice on that question myself. My dad i think gave up the day he heard of the biopsy! He doesn't do anything anymore and the other day (according to an email my sister just sent me) he asked my mom if she would mind if he was buried next to my grandmother?? How do you try to life their spirits when you technically aren't going thru what they are??? Quote Link to comment Share on other sites More sharing options...
Marlon Posted February 14, 2003 Share Posted February 14, 2003 Half of the battle is just finding the right doctor(s). Your situations sound exactly like how mine was with my mom. She had tumors causing her back pain, a bilateral malignant pleural effusion and a spot on her liver, so she was branded Stage IV, though they didn't use those actual words. She was bald, wouldn't eat, and you could see the hopelessness in her face. I swear, every 30 days she had to be hospitalized. The third time she was hospitalized, she had pneumonia, and she broke down crying with me there in the room. It was horrible. That was the day I decided enough was enough, and that I wasn't going to let her deteriorate there in the hospital. I knew that I couldn't give her hope, so I needed to enlist someone who could. That night I pleaded with her to come with me to the Block Center when she got released; I even paid the $460 first consultation fee out of my own pocket (my mom hadn't yet met her premium for out-of-network care). We lost my dad to a car accident in 1989, so I was determined not to let a little bit of money get in the way of her healing. Thank God for leading us there, because her new oncologist, Dr. Mike, was the first one to give us any hope. Because my mom had little tumor activity, he said, and I quote, "This is still very winnable, Raquel." He asked, "Now be honest, are you really happy with your hospital? I can't promise anything, but I think that we will take better care of you here." He even reassured us that it was covered by insurance. Even after that, my mom was still reluctant to go there, because they are 45 miles away. I don't have to tell most of you on this board how stubborn she is. Dr. Mike even called me the next day and asked if we talked to our family about it (that's how caring he is). I told her not to worry because I would drive her there, my bosses are very understanding and I'm not required to be in at 9:00 anyway. I even bought her first batch of the supplements, and believe you me, these things HELP. You would not believe how much energy my mom has; its almost like she's on speed. Very little nausea, stable weight, and in our 4 months going there, she has only been hospitalized once. There is no doubt in my mind that supplements have direct anticancer activity, and they buy you more time to continue doing chemo. My mom HATES going to chemo, but she knows it is the only way, and because of their treatment protocol, she tolerates it a hell of a lot better. Now, 7 months after a "very poor prognosis", my mom's CT scans and PET scans are clean. By nature, I always fear the worst, so I'm not really sure if that means she's cured or not. Her surgeon called me today and said that it was good that she shows no more evidence of disease, so I'm a lot more confident now. Believe me, I was and still am just as scared as you are. Everyday, it's like you wake up in the same nightmare that just doesn't end. But you must keep trying, and do everything that you can. I am a Catholic and have prayed almost every single day since her diagnosis, but with my tainted faith, somewhere along the line, I decided that whether it was in God's will or not, my mom was going to be healed, because I could not afford to take that chance. I was forced to grow up fast. The worst thing you can do is nothing. I wish I could help some more. But for those of you around the Chicago area, PLEASE consider the Block Medical Center. Cathy, my coworker's mom lives in Michigan. No joke. She has had all her treatment done here. Her surgery she does at Northwestern, but she also is being treated at Block, and as a matter of fact, she started her treatment there 2 weeks before we did. (My mom's stubborn). She either has her best friend drive her, or she stays with her daughter overnight. When they first opened her up, she was Stage IIIA, with lymph node involvement. She did her chemo at Block, never lost her hair or anything. Now, the tumors have shrank enough for her to undergo curative surgery! I want to thank you all for putting up with my long posts, but if hope is what you need, then I hope our story inspires you. I am thoroughly convinced that if my mother had just kept going to our local community hospital, she would have never made it. Now, she is a lot more appreciative of me, and no longer stubborn. She has no pain, other than her chemo port, because her tumors are gone. If all goes well with her surgery, who knows, maybe I'll even write a book! LOL Marlon Quote Link to comment Share on other sites More sharing options...
Tiny Posted February 14, 2003 Share Posted February 14, 2003 Marlon, I would encourage you to NEVER, NEVER, NEVER apologize for long postings: they are full of encouragement, insights, and information that could be vital for someone and is intersting to the rest of us. When we first migrated to this board you weren't with us; I understand you were very involved with caring for your mom. I missed you. You are a wonderful advocate and son to your mom. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 15, 2003 Share Posted February 15, 2003 Dear Marlon, I second what Tiny said about never having to apoligize for long posts. Sadly this isn't something at times that we can relay in a few words or less. My Hat's off to you Marlon for being aggressive on your mother's behalf! GOOD JOB!!! I am so happy to hear she is getting much better care and so deserved!!! Thank you so very much for sharing this very important information with all of us. I wish you and your mother wonderful things to come!! Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted February 15, 2003 Share Posted February 15, 2003 I'll echo what both Tiny and Connie have said. I just recently changed Oncologists, at the advice and prodding of my UW Cancer Center LC Support Group friends. My previous Onc was what I consider "doom and gloom". My new Onc, is upbeat, optimistic, and very positive. Sometimes we just have to "take the bull by the horns" and move outside the box. It is so important that we are comfortable with the person, or persons, who care for us. They must show confidence and we must be confident in them. Quote Link to comment Share on other sites More sharing options...
gail Posted February 15, 2003 Share Posted February 15, 2003 I too, changed oncologists just prior to the discovery of my lung cancer. I felt like my first one was just waiting for the other shoe to drop. Don't need that kind of attitude. That office actually asked me, on one follow up visit, where they should send my blood. Now I had had chemo there, and many blood samples taken prior. I looked at them in shock and asked them where they had sent it the last time! I also went in twice for chemo and was sent home because my counts were too low. When I took a friend to another onc's initial vist, he told her to schedule all appointments now. I asked what if her counts were too low. He looked at me with surprise and said that he would give her procrit. He is now my oncologist. Quote Link to comment Share on other sites More sharing options...
cathy Posted February 15, 2003 Author Share Posted February 15, 2003 Thanks everyone for the input. Still wondering if anyone experienced shortness of breath after or during radiation.. I seen dad today and its not getting any better....I know its probably talked about somewhere on the boards but I couldnt find it...sometimes it gets overwhelming trying to find answers as I'm sure everyone knows..... thanks again ' Quote Link to comment Share on other sites More sharing options...
wilma Posted February 15, 2003 Share Posted February 15, 2003 Cathy, the shortness of breath may be caused by radiation pneumonitis. This usually begins 2 to 6 months after radiation treatments begin. A lung ct scan will easily show if lung damage has occurred from the radiation treatments. I believe predisone is the only drug used for treatment and it can take some time to heal. I have had radiation pneumonitis for about 8 months, and found that doctors don't like to really like to talk about some of these side effects. My best information was obtained from this forum, other internet sites and emedicine.com. Good luck and God bless. Quote Link to comment Share on other sites More sharing options...
cathy Posted February 17, 2003 Author Share Posted February 17, 2003 Thank you Wilma..Dad goes for radiation today...I will tell him to mention it... We'll see what happens....With everything you must be through right now, I thank you sooo much for taking time to help me out.......cathy Quote Link to comment Share on other sites More sharing options...
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