cathy

Judy..Wonderful!! wonderful!!!!Good for you!!! Another success story.....cathy

Its me cathy forgot to login on that post

Thanks everyone for the warm welcome back. Deb also good to have you back. I talked to my mom today, dad was released from the hospital and he didnt have any blood clots, his legs havent swelled again. Its still very hard for him to breath now he is on oxygen and still on his steroids. The weird thing is he hasnt gained any weight from them, maybe now that he is home mom can cook him some of her wonderful Italian food and fatten him up a bit. I forgot to mention he now has pnomonia and fluid around his lungs whatever that is suppose to mean. I know the radiation pneumonitis has really set him back. Thanks for asking.....cathy

Hi Lauri....Your posting made cry when I read it. I had to leave my mom and dad in florida a couple of days ago and am feeling how you are as well. I was just telling my husband that I feel I need to be there with them. It is strange how cancer really makes you evaluate what really is important. My parents have been going to florida for the past 10 years for the winter months it never really bothered me before, but its just like you said life just seems so different now...I remember when my kids left for college 3 years ago, empty nest hit me bad, I think this has that same empty feeling....oh well I just wanted to let you know you're not alone......cathy

Hi Renee,...I know how you feel and I'm sure you feel so much better that your mom is in the hospital, always trust your instincts, every since my dad got sick I seem to rely on instinct a lot...Some how we know when something just doesnt seem right... I'll be thinking of you so keep us posted......cathy

Hi everyone..... I returned last night from florida..... We've been gone about 2 weeks.... I have got so much catching up to do... I started to read the posts that I have missed since I've been gone...Thought I would catch you up on the latest over here.... We left about 2 weeks ago to take my dad to his winter home in fla.... The trip started off pretty good, we made it there safely and dad slept pretty much the whole ride there..... About a week ago his breathing seemed to be getting worse.... ( he has radiation pneumonitis) He couldnt eat because it was to hard to try and breath and eat at the same time and his feet were getting very puffy. As a matter of fact Debaroo(if your reading this) it sounds just like your story. His doctors over here were weaning him off his steroids, thats when it all seemed to get worse... We took him to emergency and they put him on a steroid IV.... The breathing has gotten a little better....... After reading debaroos story I called my mom to make sure they have ruled out blood clots. There is some good news to all of this... I was never too comfortable with his doctors here so i was looking forward to meeting his new team of docs....... I feel real good about them, better than I have felt in a while..... They gave us the"statistics" however they also gave us hope....... More good news(I think) since dad has been in the hospital his mri and cat scan are cancer free...... just waing for him to get a pet scan..... I t sure is rough being so far from them, we are only a mile and half awaay when they're in Mi...... sorry so long.....missed you guys .....cathy

Hi Everyone.... just wanted to say bye. we're leaving sat.morning to take dad and mom to fla. I cant believe how much more like himself he seems... He is so happy to get there.. His doc. said he would rather he at least start his chemo here in mich.... dad is determined and he wants to go...so 5 am we're gone.... I"m actually glad he will be seeing new doctors...I"m anxious to hear what they have to say about his treatment...I was never real comfortable with his care from the beginning... well I just felt I had to say bye to my friends...hopefully i will be able to find access to a computer while i am there, so I dont miss too much... If not talk to you in about 12 days bye......cathy

HI Karma..... My dads symptoms were basically extreme shortness of breath..... He couldnt even eat because it was so hard to breath.... I do think he may have caught it in its early stage, because he is feeling a little better... thanks to my dads persistance and walking out on his radiologist I'm sure he will get better..... just to let you know my dad never got on taxol... he developed the pneumonitis from the radiation however I did read if you are on taxol it may intensify the pneumonitis.... from what i understand the radiation is what causes it.........cathy

Hi minnie......I didnt mean to alarm anyone......From what I've read if you have radiation pneumonitis that is when taxol shouldnt be taken..... I also read that radiation pneumonitis is not very common, there are probably many on this board who have gone through their treatment with no problems......everyones body reacts different....so sorry if I scared anyone........cathy

thanks everyone for your responses.... the N.C.I does recommend the moffit centers and I know there is an affiliate in fort meyers, which is about 45 minutes from my parents which I think is closer than Tampa (thank you Donna) but I'm not sure so I"m going to ask them tomorrow. I will let you know what happens Thanks all...cathy

Hi Don... just wanted to say glad your wife is doing better...cathy

Hi Ginny.... my dad just developed radiation pneumonitis. Itis an inflammation of the lung due to radiation, from what I understand it can occur 6 weeks into the treatment, however my dad developed it 4 weeks into radiation. his symtoms were extreme shortness of breath. I have also read any form of taxol should not be taken because this could intensify the pneumonitis.hope this helps......cathy

My dad had a cat scan yesterday and we found out that he has inflamed lungs due to radiation (radiation pneumonitis)I originally posted under doctors behavior... So radiation has stopped until he gets better and chemo is postponed..... His cat scan did show no cancer in the lungs.... Any way my parents have a home in fla. as well as here in gloomy, cold ,yucky,soon to get even colder Michigan. He loves being in florida in the winter. We decided enough is enough lets takes him where he really wants to be... My wonderful husband and I are driving him and mom there next sat...... We plan on spending 10 days there so it will be a treat to get some warmth..... I think dad will get better there because there is so much more for him to do....He is so thrilled to finally be able to go... Its not as though there isnt any cancer centers there..... He does have doctors there so hopefully they can recommend a good onc.... they are in Port Charlette area if anyone has any recommendations... the NCI has some reccommendations also, still would like your recommendations if you have any....... cant wait to be in the sunshine...........cathy

Hi Mary.... just wanted to tell you I know how you feel, the anxiety is overwhelming..... When I get overwhelmed many times I come to these message boards and just when I think theres no hope, someone always has a story to inspire and give hope....so never give up....we're here.......cathy

You know its unbelievable all the stories...... I know there is a website QUESTIONABLEDOCTORS.COM, however I think its drs. that have had legal actions against them..... there is a list of the drs. but anything more you want to know they charge a fee....I did look his radiologist up in the beginning of my dads treatment but his name wasnt on the list..... I just feel if he did this to my dad who else is going to have to suffer..... I dont think we can just forget about it....I keep thinking what if my dad went for that treatment what would have happened to him....... everyone else has stories just as scary....... When I started to read all the different incidents I just shook my head because I cant believe it ..... something needs to be done.... Its not fair to the ones who have suffered..... I keep you posted .....cathy

Hi all...just need to share what happened yesterday when my dad went for radiation... he's been suffering from severe shortness of breath.... told his radiologist, that he thought it might be a side affect from the radiation... he said he knew of a few people(thank you wilma) that have suffered from this....the radiologist got angry with my dad and said to him " the radiation would not cause it maybe after his treatment was completely over and I'm the doctor so go get your treatment" Can you believe the arrogance? My dads responce was " I'm the patient and I'm not getting it" Well my dad got in the same day to see his lung specialist and was told to quit radiation because something is going on. .... he couldnt pass the breathing test either.... his lung specialist said good for him for saying what he did to the radiologist.... He's going tomorrow for a cat scan to see if he has radiation pneumonitis. Needless to say he is going to switch radiologist if he need more radiation at a later date. He was beginning his 5th week.... I found this incident totally unacceptable.... what do you think? P:S Wilma, thank you thank you thank you THANK YOU...................cathy

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

Hi Steve..... I cant say I know what your going through.... I can only try to imagine, as I have tried to imagine what my dad and others with the disease must feel... I can tell you as a daughter (of a wonderful father), to let family help you if you need it. We feel so helpless, we really want to help....The more informed I am the better I feel whether its good news or bad...... People are so willing to help here......I'm still amazed evertime I read some of the post..... You have come to the right place..... cathy

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 '

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

David..... What wonderful news. congratulations!! Your story is similiar to my dad's,only he's 71. Thats what I like about these boards, just when I start to wonder is there really hope for this awful disease. I love to hear it first hand. Congratulations again to you and your precious family....cathy

Thank you all sooooooo much for responding back, if anything I feel better about it and I know everyone reacts different, its so comforting to hear it from people who have been through it. Dad will be glad to hear it also. Tomorrow is his Birthday we're having a small celebration for him, just my mom and my brothers and sisters and grandchildren. Theres over 20 of us so it will be nice... thank you for your thoughts and prayers... as my thoughts and prayers are with you as well.....cathy

Hi Rosanne, I just read your good news! I read it obviously after I posted my message. So glad to hear it. I think it helps all of us to hear good reports.. Good for you and you family...cathy

Hi.... we found out monday that my dad will be starting chemo next week. We were hoping that he could do without it. The first time it was mentioned Dad didnt want anything to do withit. He seen many of his friends suffer through it. I'm so afraid for him, but I know it has to done. I just hope we did the right thing by talking him into it. I feel we need to ask the onc. questions, like what kind of chemo, will he get anything for discomfort.. If someone could let me know what I need to ask the onc. I trust your input .... cathy p:s how did your husbands doctor visit go Rosanne?

Hi Katie.... thanks for replying back. I have been on these boards a week and have felt so much better, just knowing we are not alone in this fight, is such a comfort It's just dfferent to be able to talk to people who know how your feeling and what your going through and I hope I can give comfort as well. When I first joined the boards I wasnt really sure how to post a message and I didnt log in for my first message. Anyway my other posting are under "cathy..." My dad goes to the onc. tomorrow after his radiation. Maybe I'll have good news to share. Thanks for caring cathy.........