AshStar Posted February 6, 2005 Share Posted February 6, 2005 My mother was diagnosed with SCLC stage I in Nov 2002. She was in remisison until 3 weeks ago. She is now Stage IV metastatic (sp?) SCLC. It has spread to her lymph nodes, adrenal glands, and liver. The liver biopsy confirmed 8 lesions that are SC. The brain scan is negative. The Dr. said my mother has 4-6 months with Chemo. She would not give us a time if my mother choses to not do the chemo. She is already showing signs of weakness. Dr. suspects that its been back undiagnosed for around 5 months. Any thoughts on a time span if she does not do the chemo. Right now, she does not want to do it again. She is having trouble walking, driving, and remembering things....she has no yellowing yet. Other than mother skills and memory, she seems to be doing ok. Also, any thoughts on what to look for? Her dr doesn't seem to be that informative or concerned...won't even give her cough meds for a cough she has right now. I guess what I am really asking is what is your story and what did you decide to do and how did it work for you and if you could go back and do it again, would you have made the same decisions? I just don't know what to do at this point...I am scared out of my mind. Thank you, Ash Quote Link to comment Share on other sites More sharing options...
betplace Posted February 6, 2005 Share Posted February 6, 2005 Ash, If it was me I would run, not walk to find a new Oncologist that would be willing to fight with me. SCLC is usually very responsive to chemotherapy. Now only your Mom can ultimatly decide how hard she want's to fight, but let her make that decision based on knowledge, not fear. The field of chemotherapy has come a long way in the last 5 years, so she may want to give it a try and see how well she handles it. She can always stop treatment if it becomes to much for her to deal with. As to how long will she make it without treatment, that is unanswerable. I asked that question when I was first Dx and told 6 to 8 weeks, but I have since come to realize there are no hard and fast answers to how long any of us will make it. I'm not a statistic so until I have run my course I don't have to pay attention to statistics (and then I won't care ) Please seriously consider getting another opinion on this, good luck to your Mom and yourself. Welcome to our site we are glad you found us, though sorry for the reasons why. Blessings Betty Quote Link to comment Share on other sites More sharing options...
Addie Posted February 6, 2005 Share Posted February 6, 2005 Oh my....yes.....DO get another opinion. Find an onc that isn't going to give up so easily!! Your mom has already survived this disease for over two years. The fact that the cancer is back does not have to mean that all is grim! Bet is right....how much your mom is willing to fight is up to her....but I wouldn't want to start out with an oncologist who's already got a shovel in her hands!! There is always hope....so find a doctor who will join you with a more hopeful outlook! We have people here who have survived an initial dx of small cell, extensive for more than three years. Like I said.....there is ALWAYS hope. How the doctor can "know" she has 4-6 months WITH more chemo is beyond me. Wishing you and your mom the best...but I'd sure hightail it to another oncologist for a second opinion. Please let us know how things go..... Quote Link to comment Share on other sites More sharing options...
Justakid Posted February 6, 2005 Share Posted February 6, 2005 Ditto, find someone else! Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted February 6, 2005 Share Posted February 6, 2005 Please look for another Dr. right away. There may be many options for your Mother but you won't find out with the dr. you have now. I don't understand why even her cough is not addressed. She should not have to suffer. Please keep us posted. Joanie (SCLC survivor for almost 36 months) Quote Link to comment Share on other sites More sharing options...
stand4hope Posted February 6, 2005 Share Posted February 6, 2005 Hi Ash and WELCOME! Is her doctor an oncologist? I always feel so sad when we hear stories like this. I can't believe that she won't even give your mom a prescription for something for the cough. That is totally unacceptable. Please find another doctor - a good oncologist. Listen to Betty and the others about SCLC. They know what they are talking about. SCLC is very responsive to chemo, but it also spreads very quickly, so she needs to do something ASAP. Hang in there, Ash. We are here to support you in any way we can. Ask questions, cry, scream - we will listen. There is also a forum called Just for Laughs which is guaranteed to help remove some of the depression. And remember, many of the people posting on that forum are lung cancer patients themselves who take time to make us all laugh. Stay in touch, and once again WELCOME! Love, Peggy Quote Link to comment Share on other sites More sharing options...
AshStar Posted February 6, 2005 Author Share Posted February 6, 2005 Its not that she didn't give my mom anything for her cough (sorry, it was late last night when i posted) she gave her tesslon pearls, but they don't work imediate to stop the coughing...it takes like 3-4 days to work and it has been 6 days and they are still not helping. She is complaining about pain when she coughs (that is what made her go the dr and found out the cancer is back) but it has been 3 weeks and she still has this cold/cough. They said that because the cough is from a cold, they don't want to give her "cough syrup"...and yes, she is an ONCO. One of the only ones in the area she lives and supposedly is the best that we have here. I just don't like her. I have BEGGED my mother to travel down the road a bit to get another opinion. She absolutely refuses. So now I don't know what to do....We were also told that once SCLC moves into the liver that there is no amount of chemo in the world that will help. It might buy her 2-3 weeks at best. I haven't found any information that says anything, either to confirm or deny its truth. I am going insane here!!!! I want my mom to make the best decison. She said she doesn't want to go through the chemo if all its going to do is "make her sick, lose her hair, and kill her anyway"....and I can't say that I blame her. On another note, as far as humor, we have been having alot of that lately in our family...oddly enough we are finding humor in things that most people would think we are insane for...LOL...Like the fact that even though my mother had all of her teeth pulled over 4 years ago and has false teeth, she still carries dental insurance....(and no, the dental insurance does not cover her false teeth)...LOL.... Thank yall so much for responding....I really appreciate the different perspectives and the information. Quote Link to comment Share on other sites More sharing options...
deruo Posted February 7, 2005 Share Posted February 7, 2005 Ashstar, my heart goes out to you! I think I know how you're feeling. I live in an area where "going to another oncologist" is just not possible. Getting a second opinion could mean at least a 3 week wait. The only thing I can suggest is that ultimately, it IS your moms decision whether or not to go for chemo, but she should know that SC is VERY responsive to chemo. The one thing all the nurses mentioned to me is that positive attitude is 80% of the battle. Hang in there! Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted February 7, 2005 Share Posted February 7, 2005 I MUST agree!!!! Find a new Dr-Please tell your mom I have had sclc with mets to the adrenal gland, vessels of the heart mediastinal area etc. Mine was found in Feb 2001!! I went thru 9 mos of chemo, had a year of remission and then it relapsed in the other lung. I did 6 weeks of radiation and then 6 mos of chemo -I have been off the chemo now since Aug 2003!! My main concern is how long it took them to find your moms new tumors. I get a CT every 2-3 mos. so if it does spread-and it almost always does!-they can start treatment imediatly!!! I have now been around for 4 yrs since it was orig. found. Good luck, please pm me if you need someone to talk with your mom. Love Cindy Quote Link to comment Share on other sites More sharing options...
Mouse Posted February 7, 2005 Share Posted February 7, 2005 AshStar! I agree with the others. Find another Oncologist. In addition to the lung tumor my first Pet scan found cancer in my liver; one larger tumor and others "too many to count." My first round of chemo destroyed the small ones and shrunk the larger one. That chemo was Carboplatin and Etoposide. I am now on a round of CPT 11, hoping that will further shrink the liver tumor enough to destroy it with ablation. Info about ablation can be found on the Internet! Wishing you and your Mom good luck! Keep the spirits up! Marge Quote Link to comment Share on other sites More sharing options...
Mouse Posted February 7, 2005 Share Posted February 7, 2005 AshStar! I agree with the others. Find another Oncologist. In addition to the lung tumor my first Pet scan found cancer in my liver; one larger tumor and others "too many to count." My first round of chemo destroyed the small ones and shrunk the larger one. That chemo was Carboplatin and Etoposide. I am now on a round of CPT 11, hoping that will further shrink the liver tumor enough to destroy it with ablation. Info about ablation can be found on the Internet! Wishing you and your Mom good luck! Keep the spirits up! Marge Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted February 7, 2005 Share Posted February 7, 2005 My first thought is ditto what Betty said. Then you posted more. Chemo can get the liver mets. ESPECIALLY WITH SCLC, which responds really well to chemo! there are living examples of that on this board! Maybe if you print all of these responses off and have your mother read them it will help? keep us posted! Karen C Quote Link to comment Share on other sites More sharing options...
Roseymac Posted February 7, 2005 Share Posted February 7, 2005 Ashstar, I would really seek another Dr. Seems like your Mom responded to Chemo well the first time, and the Dr. should be starting a plan for a second line. Small Cell responds very well to chemo and radiation. Without chemo it also grows very fast !!!! My husband was diagnosed extensive 17 months ago with Mets to the liver, Chemo took care of the liver mets and the lung medistianal masses. We have had a couple bumps in the road with it returning, but so far has responded well again to chemo and radiation. no sooner he had been done with the thyroid, and now we have a small spinal met also, (along with 4 ruptured disks Not C related). Your Dr. should also have given her Cough med, that helps so much especially at night, I don't want to be rude but it sounds like he is not a very caring Dr. what if she were in pain, would eh be willing to give ehr pain meds? I would really think about all this, Please have her speak with someone else. Rosemary Quote Link to comment Share on other sites More sharing options...
AshStar Posted February 8, 2005 Author Share Posted February 8, 2005 Today, she was supposed to go in to start her chemo, when she got there, she told the dr nevermind and decided against it. When my mom was first diagnosed 2 years ago, she was very healthy and active, aside from the obvious cancer. This time is different. She is not strong. She has lost alot of her mobility. She also forgets alot. She can no longer drive. She is VERY weak, like she can't get herself out the bathtub with out assistance. Our first thought was that it was in her brain, they did a scan and its not. Dr told us that the problems she is having is from the cancer being in her adrenal glands and that even with Chemo, she would never regain the strength she once had. The chemo she was going to start my mom on is (forgive the spelling, I will probably butcher this) topecan, or something like that...I have it written down, but its in the car and its late, will go get it in the morning...(mom lives 2 hrs from me, the driving back and forth is harsh)...I think the reason she is not wanting the chemo is she is afraid that she is not going to be strong enough to handle it. Dr seems to think that could be a possibility. I just think that if the dr thought there was hope she would be more persistant in my mom going for the chemo. Its not that we are giving up hope, its a quality of life over quantity of life. I am going to research the chemo in question and hopefully my mom can make a better informed decision from that. Then to top it off today, My hubby, my 4 yr old daughter, and I have the flu. This has been a day from hell and I am ready for it to be over....get up and try again tomorrow.. Oh, and I did, again, beg my mom to get 2nd opinion....she said no, she just wants to leave we enough alone and live out the rest of her days in peace...she said she has 5 daughters and 12 grand children she wants to enjoy some time with before God calls her home.... So, as hard as it may be, I will accept whatever decision she makes and but it in God's hands...I know that he will make sure that the right decisions are made.... Quote Link to comment Share on other sites More sharing options...
stand4hope Posted February 8, 2005 Share Posted February 8, 2005 Dear Ash, Bless your heart! From the tone of your post, I can tell you are having a really hard time with this. Nothing about cancer or any other disease is easy, is it? I can understand where your mom is coming from. Chemo does take everything out of a person, and if she doesn't want to go through that, then she doesn't, and you are right to say that you will support that. I just wanted to come back and tell you that my heart is aching for you. Just try to love your mom, have as much fun with her as you can, respect her decisions, and trust God for the rest. Love and hugs, Peggy Quote Link to comment Share on other sites More sharing options...
Kel M Posted February 8, 2005 Share Posted February 8, 2005 My thoughts and prayers are with you and your family. Kel Quote Link to comment Share on other sites More sharing options...
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