Beachmama

You were right Connie!!! I just got off the phone with the onc and she said my mom has the pnuemoitis. The medicine a=she prescribed for my mom was a steroid. And she really wants the bronoscopy too. She thinks it's the best way to see how advanced this is. I told her we wanted a new lung guy anyway. My mom doesn't like the other guy!!! ANyway, she clarified to me that she doesn't think it's a return of cancer. Just some leftover damage from tht eradiation. Which makes me feel a ton better. I feel like we can handle anything NEW. Just not more chemo right now, ya know?

Thanks Connie B. My mom usually goes to most doctors appointments alone, which is terrible. But we all work or have a full house. It's terrible. I did some research on the radiation pneumonitis, and it sounds like something she could have. But she doesn't have a fever or any abnormal blood tests. I just wish someone would have been looking for these things all along. It also leads me to radiation fibrosis, which is sounding more like what she has now. Scarring on the lung. What are the consequences of this? I still haven't heard for the onc. how frustrating. I updated my profile so I hope that helps. Looks like we may be getting a hurricane here in the next few days. The media is all crazy over this depression in the water. (I'm in South Florida). Keep us in your prayers, and I'll do the same. Connie B too!!!!

Thanks Sandra, thanks Patti. I am waiting to hear back from the onc now. I am requesting a new lung doc (names) and apparently a new script. My mom was given a script for antibiotics ans she never filled it, and threw away the paper!!!!! I wondered about that. She should have been on an antibiotic the whole time, but wasn't. She has a cough that is concerning everyone. Her onc (according to my sister) said it's a typical side effect of all the radiation and that there is no cancer there. But the lung doc doesn't like the cloudiness on the scan. But that cloudiness has been there since after her radiation. The ct scan doesn't show any new cancer. According to my sister who was with my mom for the scan results. I feel better, but I feel like my mom is not doing her part to stay well. She could have have 2 weeks of antibiotis in her already and we could have closer to being 100%. Man I am so mad. I will post back after I talk to the onc. I really need her to clear this up for me, ya know? Thanks for being there Connie

Hi everyone, I have some news that I am so confused about. Maybe you all can shed some light on it My mom's latest Ct scan came back showing a cloudiness on the lung that had the cancer. The onc said it was a lesion and it was from the radiation and could be infected. (mom has been coughing lately). So, when she went to see the lung specialist, he couldn't make any determination, and didn't prescribe any antibiotics for any possible infection,. He wants to do a broncoscopy! My mom couldn't have this done last time (we tried). She freaked out and wouldn't let them "gag" her with the tube. So, I am just so confused. I thought she was going to get a nebulizer treatment or something. Now, I am scared that the cancer is back and noone's telling us the facts. But the onc originally said she was 99% sure it was just inflammation. I will make some calls tommorrow, but in the meantime, any words of wisdom or experiences you have to share would be appreciated. And don't sugarcoat it for me. Tell me what you think. Thanks! Connie

Here we are! My mom and dad, me and Faith, my new baby!! Born in May. http://s11.photobucket.com/albums/a159/ ... 008015.jpg http://s11.photobucket.com/albums/a159/ ... sm092a.jpg

Wow, we are happy. Mom just had her first CT scan since her PCI treatments in April, and it's all clear. It's just fabulous news! There is some inflammation on the lung from radiation, but the doc is going to prescribe the nebulizer and some antibiotics. She didn't seem too worried about it, but mom has had a lingering cough and this is the suspected reason. Has anyone had this? Her hair is growing too!! YAY! SHe is probably most happy about this! She is so funny! August is one year since diagnosis. And it has been a real journey. Mom really made it look easy. What a fantastic woman. I hope you all are hanging in there.Take Care. Love, Connie

Thanks everyone. It really means alot that you care enough to reply. I agree with you all that my mom needs to wait for the meds to work (for her depression), and that she needs to eat. She has never been a healthy eater. I try to help her, but aside from force-feeding her, I can't make her eat. She has been eating a little lately though, and she has been feeling a noticeably better lately. I think there is a big depression that happens after such an ordeal. While she was having her treatments she would eagerly get up and go to all of her appointments. Even when she was sick. Now that everything is done, I think she misses having somewhere to "go". I try to get her to come over, she says no. I ask her to run errands with me and the kids, she says no. I offered to buy her a ladies gym membership for something to do. She says no. I don't know what to do. She is so stubbirn. And the worst part is that I have three small kids and I cannot go with her to all the appointments. So she has no advocate and is probably not asking the right questions or telling the whole truth. I think she is so scared of them finding more cancer. She is coughing alot lately. I think it may be from the second hand smoke from her chain-smoking boyfriend, but I can't be sure. She is scheduled for another ct scan soon. We are preparing to get her port out. I wish she would seek some therapy. Medicare might cover it. But my mom would only lie to a therapist. She nevber wants to seem vulnerable or weak. She 's a tough lady. And I don't think she would go. But I may look into it anyway. Well, thanks again. You are all so inspiring. Connie (I don't have a history with a timeline, i really must do that) Mom was diagnosed with sclc, limited in 9-07 2rounds of cystplatin then 4 carboplatin and etopiside 3 weeks of concurrent radiation to chest 4 weeks of PCI ending April 08. No cancer as of today 7-08

It's been two months since mom is done PCI. She is in remission as of now thankfully. But she is now suffering from depression. She is really tired all the time and has aches all over her body. She has no appetite and has lost 30lbs. Its really weird, does anyone have any experience with this? She is taking an antidepressant since last week. We're hoping she'll bounce back. And about her hair, it's not growing back. At least not yet. Did anyone here who's had PCI get their hair back? I think this is the one thing that's really getting her down. Hope you all are hanging in there and enjoying your summer. Looking forward to yoour replies. Connie

Well she went to the ENT and it was good. He cleaned out the wax from her ears with a tube and a machine, and told her to pop her ears "every 20 minutes". Because they are closed. She says her hearing is a little better and one ear feels a little better. She is scheduled for a hearing test on Monday. What a mess! Brain radiation is no joke. We are all just glad she is feeling better and glad she can hear at all. Hope this helps someone. Have a good week everyone. Connie

Thanks alot ladies. I got ahold if the radiologist doc and she referred us to an ear nose and throat doctor. Apparently they are the ones we need. She mentioned that they may be able to drain the ears, or do a through cleaning to get the wax out. So we are going on Monday. I just hate to see her suffer and this has to be better than doing nothing. I will keep you all posted. I will look for the radiadress and biofine, thanks for the tip. Connie

Thanks Lori, I am glad to hear you're doing well. PCI was for my mom the worst part of the treatment. I know the facts and stats are there, and it's really hard on the body, but the results are undeniable. I just wish there was more we could offer for the side effects. We are going to call the doc today to ask her for some suggestions. Thanks for the hot compress suggestion, that seems like a no-brainer, but I didn't even think of it!! Her ears are so bad it's crazy. They are bright red/purple with scabs and blotches inside. It's so irritated. And she says everything is muffled and that they pop sometimes, offering momentary relief. But then clogs back up. Is this all normal? Could there be an infection? I hope her radiation doc can help her, otherwise we have to go find another doctor, which isn't ideal right now. Thanks again for any suggestions. COnnie

Hi Again. Mom still feels yucky. Her ears and scalp are giving her the biggest problem. Does anyone know when this will stop? Her ears are "plugged" and her hearing is affected. And her scalp is so itchy and irritated still. Do you think her hair will ever grow back? Does anyone have any experience with this? (we are going to call the doc tomorrow to get some answers from her, but I really feel like they just abandoned her. She said "see you in a month". I am very disappointed with that. Is this just the kind of thing that NOTHING can be done for? Like just time will heal it, and nothing more?? ) Thanks for any suggestions. Connie

Thank God this day has come. It has been a long month. Mom gets her last dose tomorrow and she is so ready to run that mask over. (I will get pics/video) She is suffering right now. Her head is burnt and her ears are practically twice the size. She complains of severe nausea and ear popping and wax build-up. We didn't know that the ears would be so affected by this. It has been a looooong week for her. She really pushed through and she is so proud of herself. This process is so hard on the family who have to watch this stuff happening to their loved ones. There is little I could do for her to make it better. I bought her some nice lidocain aloe gel stuff for her head, which she loved. And I rubbed it on for her, which she loved. And I bought her some roses for tomorrow that she also love. I wouldn't wish this kind of thing on my worst enemy. I am so glad it's over. I hope we never have to go through this again. They are supposed to take her port out next. The process is almost complete. 7mos of fighting cancer, now onto the rest of our days where we will constantly worry. Thanks for listening everyone. Take care. Connie

Just an update. Mom is 3 weeks into PCI. She feels very tired, has a cold with a cough, her hair is falling out and scalp is very itchy. She has decided to push through till the end, which is one more week. She absolutely hates the mask but the radiology team is very good with her, they have made all the difference, I think. Plus the fact that mom doesn't want brain cancer! She wants the mask for afterwards. She says she's going to "run it over with her car"!!! (She's not kidding.) She is such an inspiration. She is really making this look easy. God Bless her and all of you who are going through this. Connie

Hi everyone. I have posted here before looking for support and info on my mom who is currently receiving PCI. This is her second week, and she is starting to feel it. Here's what's going on. She is in remission from the lung cancer, and the pci is preventative. She is into her second week of pci. She is running a low fever, has a sick stomach and headache and is very tired. She told this to the doctor today, and they told her it's NOT from the radiation. I just cannot believe they told her that. We have been so compliant with all the treatment they have recommended for her, but I am trying to talk her out of completing the 20 days they want from her. Part of me really feels like they are "cashing in" on her. And then we can barely get listened to when we tell the docs how she is feeling. They did give her some nausea meds today, finally. I would really like her to stop after this week. (that would be 10 doses) I think that is enough. I just don't think she needs it, and I especially don't think she needs 20 days worth. (it's just preventative, ya know) In the beginning the doc said something different. Like only 8 days for 8 seconds....now it's 20 days for 3 minutes. And the mask really freaks her out. Now the original doc is gone, and she has a new doc that speaks down to her. (and me) I know I'm not a doctor, but I feel really strongly about this. What do you all think? Thanks, Connie

HI I just wanted to wish you luck. My mom just finished her 6th round of chemo and has come out clean. No more cancer for now. SHe had a rough first round, but did pretty good considering. The chemo was a bit strong for her, she was having numbness in her fingers, low wbc count and her scalp was "burned". After her second round of the cystplatin, they changed her to carboplatin, which was alot better. (seemed like every other round was 'bad') Some people handle the chemo surprisingly well, and other end up in the hospital for fluids and pain meds. My mom's lowest wbc count was a 2, and she went through a round of shots to boost it back up. (after round one). But she never got "sick" (like flu or colds). She was just nausous, and had a bad taste in her mouth. And of course, tired and achey. SHe cried a few times that she didn't want to do it anymore, but she pushed through. I think that first round was the hardest, then she really sailed through it. We were very surprised how well she did. I wish you the best of luck. Hang in there. You can beat this thing. Keep your fluids up and get rest. Take Care! Connie

HI Allie, I just wanted to tell you that my mom just finished her 6th round of chemo and there is no cancer to be seen! She had 2 rounds of cystplatin and episitope (sp) and 4 rounds of carboplatin and episitope. (3days in a row then 3-4 weeks off depending) Plus 7 weeks of radiation. She had some rough days, but she got through it. We are all so proud of her. She had a 3 inch tumor on her right lung. Small cell Lung cancer. Limited. SHe is going to have PCI (preventative brain radiation ) starting monday. Just to be sure it doesn't spread to the brain, which it loves to do. We are all very hopeful and you should be too. She can beat this. If my mom did, your mom can. I am glad they are keeping her in the hospital for that first round, it's a hard thing to do at home alone. She will need lots of fluids and anti-nausea meds. But you'll see. In 4-6 months you will be here telling someone about how well your mom did. Keep a positive outlook. It will help your mom do this. Connie

Thanks everyone, you are all such an inspiration and a light in such a dark time. Nicole, I am LMAO at the "condom on the brain" statement. That is GOOD! What a comedian your mom is!!! Tell her to write a book. I'll buy it. Connie

Hey slobberdog68, I am really sorry about your mom. That is just lousy timing. I hope you cam find peace this New Year. Thank you for the articles. I did read the same info and I know what it says. I think it's a good thing overall. I just wonder what the reports AREN't telling us about brain radiation. I just can't help but think the worst. I'm a bit of a skeptic in this way. My mom seems okay with the decision. I just thought 20 days is alot. 2 more months and this all should be over with and hopefully we won't have to deal with it again. EVER. That's my hope. I hope it's a small price to pay to be cancer-free. I'll keep in touch. Thanks again.

Mom saw the radiation doc today and he wants to do 20 days of PCI. I thought that was alot, but he said it was a low dose. (I was not there). What does that mean, a low dose? I am very uneasy with this. I keep reading about memory loss and vertigo and lots of other permanent damage this can cause. I am so confused and feel so completely uneducated and vulnerable. My mom is like their lab rat. No one can know what will happen in these situations, and it bugs me when they try to tell me what will happen and what to expect. They really just guess. Does anyone have any words of wisdom for me? I tried re-reading all these posts for encouragement. It helps some. I really don't need my mom being even more forgetful than she already is. UG! SO Frustrating!!!!!

Hi Dragonfly, my mom has a similiar story. Sclc, limited. Age 66. 4 rounds of chemo plus 7 weeks of radiation down. We are planning the PCI in about 6 weeks. I wanted to ask you some questions if you don't mind. How many rounds of chemo did your mom have? How many days of PCI did she get? What kind of chemo did she get? ANd how long after the chemo did they start the PCI? I am so worried that this is going to happen to my mom. She did 2 rounds of Cystplatin and another chemo begins with an E. Now she is doing Carboplatin and the E chemo, 3 days every 3 weeks. We are planning 6 rounds all together then PCI right away( I think) . I really hope it works. It just seems so unfair to go through all this and still end up with it spreading. I hope you had a wonderful Christmas and New Year! And I appreciate any info you can give. Connie

My moms doc had her on cystplatin & Another one starts with an E. for the first 2 rounds, and it was harsh!!! Then changed to carbo/E for the former two rounds. She had 7 weeks of radiation already and is showing no cancer anywhere at this time. It was sc on the lung limited. The doc originally wanted to do 8 rounds of chemo, but we'll see. We may only do 6. And she will have the preventive brain radiation as a precaution. All the studies say it's really helping and I like the sound of that. And you also know about the the alternative treatments we have her on (I think we discussed it before). Anyway, she is doing really good, like you!! I am very happy to see how well you are doing. Keep up the good work!! Connie

I think it's the cisplatin. It's a really harsh chemo. My mom had it for two rounds and was really sick so they switched her to carboplatin. She is on the same schedule as you. I think the side effects get a bit worse with each round. But you will be okay. It just takes time. Try to keep fluids coming and try to rest alot. And tell your doc how you feel. Maybe they can switch your meds too. Are you going to have the preventative braion radiation, btw? I am just comparing notes... \Connie

Hi, I have another question for anyone who knows. My mom is going to have preventative brain radiation, and she is worried about it. Has anyone here had it and what should we expect? If you had it can you tell me exactly how many days you had also. My mom is worried that she'll lose memories and basic brain memory in general. (The onc told her that, but the radiation doctor hasn't said anything about it yet.) And a quick update on mom. She is scheduled for her 4th round of carbo/epis after Christmas and the doctor increased the dose just like we were worried she would do. I swear, they treat her like a lab rat they are experimenting on. But, otherwise she is doing fabulously and we truely cannot complain. I will try to upload a pic soon of all of us. We managed to get a family photo done yesterday. Thanks, Connie

Starr, it really sounds like you are on the right track. Your mindset is terrific and you at least have the desire to try changing your diet and lifestyle to be that of a healthy person. I really hope you looked at the info I sent you and like I said, anything I can do to help or add to the info that you saw, I am here. I am a believer in alternative. I am not going on what the onc says. I just do not trust them completely. There is too much at risk and the numbers don't lie. Someone is missing something somewhere. Connie