Lesli Posted May 7, 2004 Share Posted May 7, 2004 This is my first visit to this forum. I have serached for a support site for family members, and I am very glad to have found this one. My mother, age 66, just received a definative diagnosis of SCLC. She was told she had a "problem" about a month ago. She was having some chest pain, which was initially thought to be pleurisy. Chest Xray showed a mass in the left lower lobe, and a suspicious spot on her liver. She did have a large left pleural effusion, which was resolved with a thoracentesis. Now, 30 something days later, she has had a bone scan, a brain scan, a liver scan, a PET scan and an MRI (full body). All of the scans are fairly clear, except for what appears to be an hemangioma in the liver. This past Wednesday, she had an endoscopic thoracostomy and is still hospitalized. She has a chect tube and a pleur-evac. Her surgeon dissected a large portion of the tumor in her lung, and removed some of the hilar nodes, which he feels have metastatic disease. He is 99% certain that this is a SCLC, but the final path won't be back until Monday. He spoke with me on Wednesday, saying that further surgery will not help, and that the next step will be chemo and possibly radiation. Do I sound knowledgeable? Sure I do. I am a nurse, and this whole thing scares the CRAP out of me. Mom lives in LA, and I am in Chicago. My family is looking to me to be the strong one, and I don't want to be. This is my MOTHER, not a patient. Do you folks have any suggestions for me? Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted May 7, 2004 Share Posted May 7, 2004 Welcome to the "I don't want to be here" club. It sounds as if the doctor is on top of things, having ordered all those tests. And thank goodness most of them came out clean. Share with your family exactly what you said to us - it'll take all of you to get through this ordeal. The folks on this board are likely to become like second family to you, and I know that by the end of today, you and your Mom are bound to be feeling a little stronger, cause there will be many, many, many of us praying for you both. Blessings, TeeTaa Quote Link to comment Share on other sites More sharing options...
Donna G Posted May 7, 2004 Share Posted May 7, 2004 Welcome . I am sorry your Mom has lung cancer. I am a nurse and believe me it is not easy to hear from the patients side either. When I was told I "knew" I was going to die. Here it is going on 7 yrs later and I am so blessed to have no evidence of disease. Now however I have knowledge and understanding from having gone through all this, and believe me now I am very aware of those coming in the hospital for a thoracentesis. I know the stress they are under and their families. I hope we can help you and your family deal with this dreadful illness. Donna G PS Keep up the good work, I also have a friend with Polycystic Kidney Disease , who needs a transplant donor. Quote Link to comment Share on other sites More sharing options...
S. Jane Posted May 7, 2004 Share Posted May 7, 2004 Welcome. You've found a great place to be. I'm sorry your Mom has SCLC (my Dad also has it). You probably know at this point that SCLC reacts well to combined chemo and radiation. While it is a tough battle, I hope your Mom achieves remission as my dad did. With you being in Indiana and your Mom being in California, the distance can be frustrating. Your knowledge can help your siblings understand the disease. Does your Mom have a lot of support in California? Will you be able to be out there some time? The hardest thing about this happening in my life, is that you take on a different role. I REALLY like being a daughter.. Jane Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted May 7, 2004 Share Posted May 7, 2004 so sorry that you needed to find us. Yeah your mom having cancer really sucks big time. I know you don't believe we understand but boy do we all. we have all worn the newcomer to cancer hat once or in some cases even twice. Personally I lost my mom last august to NSCLC and now my dad has SCLC. I guess you could say I can't get enough of the roller coaster ride were on so I bought another ticket. sick humor but its true. I like a few other people here are living it twice. Chemo and radiation does work. It kept my mom here for 6 months sadly though she developed infections and lost her battle. Dad...well he says he isn't doing treatment becuase he knows what will happen and wants to be in charge of his final departure. I have argued till I turned purple but some very very wise people here have enlightened me that its not about me but about my dad and HIS life. so welcome but sorry your here. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 7, 2004 Share Posted May 7, 2004 Welcome to the family. As has been said there will be many prayers offered for you Mom and your family. I have sclc also and am 11 months from dx. I have mets to the liver also. It does sound like your Mom's medical team is aggressive and that helps, alot! Chemo and radiation done TOGETHER seem to work better than one at a time. They have harsher side effects (fatigue, weight loss, etc) but it does seem to work better. The main thing is she needs to know there are people who have baten this beast for years! DO NOT go by statistics because they are wrong and she is NOT a statistic! God Bles, MO Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 7, 2004 Share Posted May 7, 2004 Welcome, Ms. Nurse! Yep, we are a family here, with much info and support. We are survivors as well as caregivers. Glad you found us. You being a nurse, perhaps you can help with info, too. Let us know how we can help you. Don Quote Link to comment Share on other sites More sharing options...
jamie Posted May 7, 2004 Share Posted May 7, 2004 Hope the best for you guys. Stick with this board, you will be glad you did. Everyone really cares here. If you ever have any questions... dont hesitate. Welcome again. Jamie Quote Link to comment Share on other sites More sharing options...
Lesli Posted May 7, 2004 Author Share Posted May 7, 2004 I was really suprised to see all of the replies to my post so soon. We feel really bereft right now. My family lost my grandmother 2 years ago this month, to complications from Parkinsons Disease. Then, last July, we lost my baby sister, age 36 to a sudden cardiorespiratory arrest. She had cerebral anoxia, and was brain dead. Trying to have a positive attitude about this horrible tragedy, we made her an organ/tissue donor, so that some sort of good could come out of all of this. That is precisley why I do what I do now. Now this with Mom. Up until now, I was certain that God knew what he was doing with our lives. I am not so certain now. My Gramma used to always say that "God will not give you more than you can handle." OH YEAH? How did HE decide? I guess that the good thing is that there are really no discernable mets, other than a few hilar nodes. She did have a thoracentesis about three weeks ago, and during the surgical procedure on Wednesday, he did put some talc in the lung, so hopefully this will not return. Mom. has a fabulous attitude about all of this. It's her CHILDREN that aren't coping too well! Quote Link to comment Share on other sites More sharing options...
Lesli Posted May 8, 2004 Author Share Posted May 8, 2004 I am "looking forward" to becoming a regular. Additionally, seeking guidance and support to get through this new nightmare. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 8, 2004 Share Posted May 8, 2004 Hi! and Welcome! Sorry I'm late in posting to you, but I've had an incredibly busy week and haven't been here much. I'm so glad you found this site, but so, so sorry that your mom has this frightening disease. You will find very quickly that there are a lot of folks here who will hold you up when you're down and cheer for you when things are going well. They are a great group and soon will become your friends. Once again, welcome, God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Melinda Posted May 8, 2004 Share Posted May 8, 2004 I am so sorry to read about your mom--but very glad you found this site. Distance makes a hard situation even harder. Geoff's mom came down here from New Hampshire when she was dx'd, but my mom (with breast cancer) is in North Carolina. Welcome. Let us know how we may help. Please log on (or lurk) often! Melinda Quote Link to comment Share on other sites More sharing options...
Nancy B Posted May 8, 2004 Share Posted May 8, 2004 Welcome and sorry you have to be here. My parents live in Florida and when they have medical issues it is soooo hard. Does your Mom have some family or support in the LA area? I live in the LA area also and there are many support groups and great docs and hospitals around here. Please let me know if there is anything I can do. My heart goes out to you as well as my prayers. Love and hugs, Nancy Quote Link to comment Share on other sites More sharing options...
Lesli Posted May 8, 2004 Author Share Posted May 8, 2004 My folks have a fairly strong support system in California, but her FAMILY is all East. My brother and I in Indiana and two sisters in Tennessee. My job is so supportive, that some of my colleagues have offered to "donate" vacation days so I can eturn to California as needed. It is hard to determine how often I need to be out there, without being a pest. Additionally, it's hard to know WHEN I should be there. Expedia.com makes it easy to make flight arrangements, but you need a certain amount of time, in order not to be spending a fortune on airfare! I called the hospital to day, to try to get an update. Some bozo lost the HIPPA release letter that we had specifically formulated for the hospital and all of her doctors. No one would talk with me. Mom was asleep, so they couldn't get her permission. She was horribly nauseated, and they had "given her something", but no one would even give me any info on why she felt so illl. It is terribly frustrating! We should have the final pathology back on Monday, and will know what the next course of action is. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 8, 2004 Share Posted May 8, 2004 I hate that you had to join us. I too am a nurse. I have been in your same shoes 10 yrs ago. My mom was dx with nsclc in 10/92. She went thru chemo and radiation. after about 18 mos she died. I had the whole family looking to me to make decisions. It was very hard. Now 10 yrs after she died I too have lc. Except mine is sclc and is extensive. I have am now 3 yrs and 3 mos since dx. I am doing fairly well. Hopefully your mom will too. Please pm me if you need. Love Cindy Quote Link to comment Share on other sites More sharing options...
Lesli Posted May 18, 2004 Author Share Posted May 18, 2004 Good evening, all! Thought I would "introduce" you to my Mom. That is her avitar below my name; her and two of her 11 baby furbies. She says they make her laugh, and lighten her mood, so who am I to object? I have 6 of them myself. ANYWAY, this week we got more information. The final pathology is back on the pleural fluid and the tumor itself. "Large cell variant of un-differentiated small cell malignancy with a Class 4 designator." Even being a nurse, the classification scares me!!! She will start chemo on Wednesday. She will be receiving carboplatin and VP-16. I told her to STAY OFF of the Internet, as she tends to look too far into things, and will develop any possible side effects through the theory of suggestion! I'm anxious to hear from any of you who have gone through this specific protocol, either as a patient or as the lovedone. Thanks! Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 18, 2004 Share Posted May 18, 2004 My first go around was with cisplatin and camptosar for 9 mos. Then 1 yr remission. It came back and they used the carboplatin and VP-16. This time I have been in remission for 10 mos. YIPPEE!! I did have radiation the second go around with chemo. I did fairly well. Lost my hair, oh well I wore the cutest scarves I made from material bought at Wal-Mart. Different ones for holidays and seasonal ones. I had problems with diahrea but the imodium and lots of cheese (ha) helped. Make sure she gets rest and does not overdo. I always did and I paid for it! Cindy Quote Link to comment Share on other sites More sharing options...
jamie Posted May 18, 2004 Share Posted May 18, 2004 Lesli, I forgot to mention in my last post to you that Im right by you in Chicago...if you ever need to talk, feel free to pm me Jamie Quote Link to comment Share on other sites More sharing options...
char1048 Posted May 18, 2004 Share Posted May 18, 2004 Hello and welcome sorry about your mom keep posting here this is a great group support site and you will get all kinds of support and answers to all your questions, I love your sweat shirt you have on, great driver along with his team mate Number 8. so again welcome. Charolette Quote Link to comment Share on other sites More sharing options...
Lesli Posted May 21, 2004 Author Share Posted May 21, 2004 Well, Mom had her first dose of chemo yesterday, and another this morning. She says she has not even had ONE SECOND of nausea. My aunt flew out from Tennessee yesterday, so hopefully, that will keep her distracted. So far so good! Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 21, 2004 Share Posted May 21, 2004 Hi again, Leslie. I didn't see you subsequent posts until tonight and hadn't noticed you are from Indiana. I'm also from Indiana (Indianapolis/Brownsburg area). Where are you located? Peggy Quote Link to comment Share on other sites More sharing options...
Lesli Posted May 21, 2004 Author Share Posted May 21, 2004 Up North in Lake County........Merrillville to be specific. But, I work in Elmhurst, Illinois; about 8 miles from O'Hare. Quote Link to comment Share on other sites More sharing options...
Lesli Posted June 10, 2004 Author Share Posted June 10, 2004 Mom started Round 2 of her chemo yesterday. So far, she has not had a single second of nausea! Syhe does refer to her rapidly declining "hair supply" as "molting"! LOL! She seems to be doing so well, at this point! The plans are chemo this week x 3, Neupogen every day next week, a weeks rest, then Round Three of the same protocol. Then scans, and a decision will be made concerning radiation. Please continue to keep her in your prayers! Lesli Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 10, 2004 Share Posted June 10, 2004 Lesli, I hope she continues to handle treatments this well.praying she will continue to do so. Quote Link to comment Share on other sites More sharing options...
pecola Posted June 10, 2004 Share Posted June 10, 2004 Lesli, your Mom sounds like she has an awesome spirit! I love that picture. I'm saying a prayer for her now and one for you too. I know when my Mom was going through chemo, I could barely sleep or eat sometimes - nothing compared to her battle - but I know it's hard for you too. Gina Quote Link to comment Share on other sites More sharing options...
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