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Everything posted by Beachmama

  1. Thanks again you all. My mom was admitted to the hospital last night. She has a bacteria on her lung that caused a fever and she has low oxygen levels. (This is her second time in the hospital for this in the past month!) Katie, I feel like you are right when you say that tthe doctor may not be offering more options for my mom because she is not doing her part but living a healthier lifestyle. We all feel that way, really.(my family) And maybe my mother is too weak to handle the harsh chemos, and that is why she didn't offer it. Now that we know it is a bacteria on her lung, how can we safely give more chemo when she cannot get well from THIS NEW problem. Mom has already had maximum radiation. They cannot operate. It's either chemo or nothing, (I assume.) Well, I will keep you posted. It looks like mom will be going home with an OXygen tank. She cannot breathe. All of this news is very grim to me. I feel like this is the beginning of the end.
  2. Thank you all so much for your replies. I am so grateful for this board. I feel so comforted by your words. Mom has Small cell LC, limited, on one lung. It is the size of a tangerine, and growing. The biggest problem with her is that she still smokes and surrounds herself with second hand smoke as well. Helping her seems impossible. And she is resistant to changing doctors. But I feel like we have no other choice. If there are more choices, why doesn't the doc recommend them? It's mind boggling. She did mention a possible clinical trail in Miami. But she didn't seem hopeful or confident when she nonchalantly mentioned it.... I was the one who mentioned trying the carboplatin/etopiside combo again, which she had first line. The doc casually said "we can try it". It's just so frustrating and leaves us feeling hopeless. Well, I will look into this clinical trail and seek out a new doc. Thank you all so much for your opinion and advice.
  3. Hi everyone. I am at a loss here. My mom has been receiving chemo (second line) for the past year and it has not been working. Her first line was Cystplatin and Vp 16 and her second line consisted of Topecatan then when that caused a blood clot, and the cancer grew more, they switched her to Taxotere. And her most recent scan showed the tumor had grown even more. The doctor really had nothing to offer. She said THIS was the standard treatments and were effective on others. I suggested more Cystplatin, since it worked the first time. (She was cancer "free" for 9mos) My questions to you are- Have you or your loved ones had this treatment plan? Did it work on anyone? Should we get a second opinion? (it's seems like alot of work to hear the same things) Would you get a second opinion? She is taking weekly chemo and the tumor is growing. 6mos ago the tumor was 3.3cms. Now it is 5.9cms. That is alot of growth WITH TREATMENT! My mom is getting very sick and tired. She is almost giving up. And I KNOW she doesn't want the platins.....But I donn't know what else to do or say. I feel so defeated. And how big can a tumor grow before it just takes her? I am so lost and confused. And I feel really alone. I hope you may have some insight for me. Thanks. Connie
  4. Hi there! My mom had 6 months of topecatan and did not have any itching. She had mild symptoms, the worst of which was nausea and fatigue. I hope you get some feedback from the onc this week. Good luck to you and your mom. You are in my prayers.
  5. Well, just wanted to update everyone on my mom. She just finished her last round of topecatan last week. (for now) She has had almost 20 treatments and the latest scan showed no marked improvement. But it hasn't grown either. Just stayed the same. Her hair is starting to thin again and she is very depressed. We are confused as to why the chemo isn't working. And she continues to smoke. So we don't know what to do or say to her. She is becoming very weak as well (gaining weight, fell down 4 times last week, losing her balance). I think the doc wants her to take a break over the holidays, but doesn't say what the plan is. I guess this is our journey with this disease. I hope you all are well and are having a nice holiday season. Any ideas or suggestions or experiences are welcome. Thanks. Connie
  6. Well, mom just had her third round of Topecetan. And so far so good. She feels mostly tired and sick to her stomach. But her WBC is high! And no hair loss yet. She is really strong and seems almost "energized" by the chemo. It's weird, but she is fighting it. I pray we can put it back into remission. She took a chest xray (waiting for results) and in 3 weeks will do another ct scan to see where we are. 6-9 rounds has been ordered, so she might be half way done. She said this drug is MUCH better than Cysplatin and Carboplatin. 100 times better. Thanks for all your prayers.
  7. My mom had a bad time with the first round of chemo. She was so sick, I came to this board and started screaming that I couldn't allow her to go on anymore....it was pretty emotional and painful for her and for US to see. But, I have to say, it got rid of the cancer for a while. It's almost two years since diagnosis. Unfortunately, it did come back and she's started chemo again. She seems to be tolerating it well for now. But, your question is funny to me. I think your friend could get some relief from hash or pot. I actually told my mom to try it, if she thought it would help with the nausea. She laughed. But she didn't But I though it was a fine idea. Your friend has to weigh his decisions. If he doesn't treat the small cell it WILL grow quite quickly. And that is scary. He can get thru this. I fhe wants to try some hash, I would think it couldn't hurt. Not doing the chemo might hurt more. I wish you and him the best of luck. Hang in there.
  8. Hi everyone, I wanted to ask you for any advice you have about the chemo Topotecan. My moms small cell has returned and this will be her new chemo. The doc actually told her that her hair will not fall out. However this is not what the paperwork shows. Mom's hair just grew back and now, aside from having cancer again, she's upset about losing her hair again. Well, anyway, we are just now processing the news. Disappointed of course, but I just want to give mom some advice from you all and maybe some good news. Thanks. Connie
  9. Thank you all for your wise words and support. Just to update, mom continues to smoke daily. But I do not mention it. I have NOT told the rest of the family about it either. It is not my wish to upset her. I am just so disgusted that she started smoking again after being free for a year!!! NOW, her cough is back with a vengeance, and she of course smells like the smoke and it ends up all over the baby when she is here, (which is daily). I AM happy that she she is ALIVE and HERE to be with us. But the thing about my mom is that RIGHT NOW she is CANCER-FREE!!! and she is just TEMPTING FATE. SHe absolutley cannot imagine going thru chemo again. And neither can I, frankly. I just shutter at the thought of it. ANd she just laughs in cancer's face. Like as if to say "bring it on!". And after allllllllllllllll the radiation, and alllllllllllllllllllllllllllllllllllllll the chemo. And being smoke-free for a year......it's just terrible. And I hate it. And she's so non-nonchalant about it. Lighting her cig while on the phone with me, taking drags./....It's like a BIG SLAP in my FACE. She can't even be discreet. She can't wait til we hang up. My sisters would totally FREAK OUT of they knew. I am the least of my mothers troubles. She better hope they don't find out. But, whatever happens you know and she knows that I'll be there for her. But I will be angry. And will never forgive her for smoking. BUt I will be strong for her and support her. It just seems like she's inviting the cancer back to her sore lungs after so much trauma. I almost cannot believe it.
  10. Thank you all for your support, except Ellen in PA. Who pointed out so rudely that I am the one with the problem, not my mother. Unfortunately, accepting her smoking is like forgiving an abusive spouse over and over again, making excuses for him. I know it must be sooooo hard to quit, I understand that. But I KNOW she did quit for a while. Maybe a year... But now she started back up. It's just crazy. I have always hated my mother smoking. I will never be okay with it. And luckily, I am the only one in the family who knows this info for sure. My sisters would REALLY give her a hard time. I will never tell them, because I don't mom to get upset. It is her business, and her life. And it doesn't directly affect me, except for the smell, which does. And the unknown future where I will taking care of her again, while she cries and cries. But I will try to sit here quietly while she gets punched. Cancer sucks and so does smoking. I don't smoke thanks to years of inhaling my mothers disgusting cigarettes for18 years. I guess that's something good.
  11. Thanks everyone for your insightful responses. I know where I stand on this topic, but I don't have to like it. I told mom I knew that she was smoking.(she didn't deny it) I told her that I hate the way it makes her smell. (she smokes indoors and in her car). She reeks! And that is the worst part of it. We smell after she hugs us (and my kids). It's just gross. But I do love her. I do. Just not the smoke. Oh well. Thanks again.
  12. I just found out that mom is still smoking. Someone close to me saw her puffing away in her car at a red light!!! I had a feeling she was smoking, but she would always deny it when I asked her. My questions to you all is what do I do??? I KNOW I cannot make her stop. Is she really making it worse by smoking, or is the 40 years worth of smoking just too hard to undue and it really won't matter if she quits or lites up? I am so angry right now. I want to say something to her, but what? She just got a clean bill of health and this is how she celebrates! What would you do? Connie
  13. Just wanted to let you all know the good news. Mom had a broncoscopsy last Thursday and we got the results back yesterday. NEGATIVE!!! The doctor could tell the minute he looked down there that it was not small cell. He said the lung is slightly inflamed and probably scarred from all the radiation. And that was what kept showing up on the scans. What a blessing! Thanks for all your prayers and support. I feel like we can all breathe a little now. And mom can get a nice hair cut and dye finally!!! Thought you all would like to know.
  14. Thanks Katie, I checked out that website, it's really great. SO, here is the UPDATE. Mom's latest scan (CT) showed the same shadow, or spot. It apparently "lit up". It's the size of a lima bean. The good news is that it could be anything, says the doc. It is located directly on the spot that was radiated. It needs to be biopsied to know for sure. The bad news is that it has doubled in size since May. (it has apparently been there that long). Mom was given antibiotics to clear up any infection and has referred her back to the lung specialist for the biopsy. If it is an infection or inflammation, is it common for it to change in size?? I didn't go with her to the appointment, so I still have unanswered questions. Just wanted to update you all.
  15. Your attitude is awesome Rob! You are an inspiration. I will keep you in my prayers. Cancer sucks. Keep yourself strong and just take one day at a time. You can do this.
  16. Yes, we are going to do another scan in 6 weeks to follow up. She was (is?) fighting some radiation pneumonitis. She has been taking steroids for a long time now. Maybe it's related to that. Maybe it's nothing. No one seems overly worried. BUt I guess this is just the way it is with LC. EVeryday is a fight and a blessing. My mom told me that she with kick it's butt, no matter what it is. I will keep you all updated. Thanks.
  17. What does this mean? Moms most recent PET scan showed a shadow in the lower portion of her lung. (the same lung with the first tumor.) It is small and they want to do another scan in 6 weeks to see what it's doing. No one seems too worried, but the onc did say that one big bag of cysplatin would take care of it if is anything. Does anyone know anything about shadows? Are they usually "something", rather than nothing? Could it be scarring from the radiation? For those of you with recurring tumors, is it usually clear what it is when they see it? Or is it always a mystery until a biopsy is done? She dropped this bomb at CHRISTMAS DINNER!! After lieing to us that everything was fine. My mother is a real character. Thanks in advance and hope you are all enjoying your long weekend.
  18. HI everyone. Just wanted to tell you all that Halloween is one year since mom had her first chemo. SHe has come a long way and she's doing great. I updated my profile info and wanted to see how it looked. And I added a pic. Hope it comes out. My mom's dog died and we all think it died of cancer.( Second hand smoke!) She was a cocker spaniel and was only 9years old. My mom didn't take very good care of her. Now she is feeling very depressed and sad. Mom's boyfriend smokes two packs a day--inside the house!! Never an open window. We think the poor dog just couldn't breathe anymore. Sad, huh? I'm glad I don't smoke. More trouble than it's worth. Well have fun this Halloween. Connie
  19. HI truematch. I am sorry your mom is feeling down. It is normal to go through a delayed effect from the radiation, and it's normal to not want to know about other people's cancer. I mostly come here for myself, as I have nothing else to offer my mom but my love and support. I did share stories with my mom but sparingly. I usually said things like how normal everything is she's going through. And how lucky she is to still be here fighting the fight. So many sclc patients don't get that chance. And my mom's onc was sure she could "cure" my mom. (She actually used those words). So, I would reassure her with some little anecdotes from here, and just tell her how great she is doing. This is a fight she can win. More and more people are winning it everyday. I hope you are doing well and keeping up with all your moms symptoms. Often times it's us, the daighters and sons who can see a problem coming.My mom calls me her "other doctor!". It's funny. I am glad I am good for something!!!!! BYW. Halloween is one year since mom's first chemo. And she's doing great. Hang in there. Connie
  20. That is awesome! Congratulations and good luck in the new year!
  21. Wow, I am so sorry. I hope you are hanging in there and I hope you find some peace in all this. Take care of yourself. Connie
  22. Just stopping by to see how your mom is doing?
  23. I just spoke with mom's oncologist and Pulmonary specialist yesterday about the cloudiss on her Pet scan, and wanted to clarify whether is was radiation pneumonitis or not. And I am very sad right now. The onc suspected radiation pneum, but she said she could not say 100% that it wasn't a return of the cancer. The pulm doc said that scan showed "hypermetabolic activity" on the left lung, where the original cancer was found. He said he doesn't like the looks of it and wants to do a broncoscopy. He thinks it's cancer. My mom must be in denail, because she refuses the bronc at this time. She has symptoms that could go either way. Coughing, and weight loss being the main ones. The onc prescribed 10 more days of steroids to see if that would help her symptoms. The pulm doc didn't like that. He said that it's not" good medicine" to prescribe drugs for an unknown condition. The onc seemed so sure that it was just inflammation. Hypermetabolic activity doesn't sound good. I wonder what happening inside there. I just wish someone knew, without the bronc. They will do another scan in 2 months to see if anything changed. I just wonder if that's too long to wait. I feel like a jerk right now. Like how could I believe that the cancer could be gone so easily? Like, it was too good to be true. I feel like we're starting all over again. And the worst part is that my mom lives in a very dirty house with a man who chain smokes right in her face. How can anyone heal in that environment? Any wise words or experiences would be appreciated. thanks!
  24. everything I am reading about pneumonitis fits my mom to a tee. The only thing that doesn't fit is the way we are being treated. There has only been one prescription given for the steroid, and that's it. Everything I read says there should be many rounds of steroids, over the course of months. And oxygen therapy as well as possible antibiotics and a few other drugs. I have made two calls today to the onc and the lung doc, now I wait for the call back.. I want more scripts and more info. Connie, thank you for responding. You said you had this too. Does it ever really go away? WHat did you do to get rid of it.
  25. Mom is still coughing and losing alot of weight. I am concerned. What should I expect with this pneumonitis? The steroids she's taking aren't really curbing the coughing at all. Her doc isn't in the office till tomorrow, but they never tell me everything I need to know. How many rounds of steriods should she have before seeing an improvement? How long do we fight this thing? And if we go through with the bronchoscopy, what will we really know about this? And why can't we do all minimally invasive treatments first, like medication. Any advice or personal experiences would be appreciated. Connie
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