Guest Posted May 28, 2003 Share Posted May 28, 2003 Hello all. I'm new to the board and wanted to ask a couple of questions. My mother was diagnosed with extensive sclc in March this year. She had several tumors on her lungs and small mets to liver and skull. She has been having weekly treatments of chemo for the past 3 months. (sorry, don't know the name of the drugs) She hasn't lost her hair and is thankful for that, but it probably wouldn't have bothered her anyway. At first she only had a little bit of nausea and it was controlled fairly well with medicine. Lately, thought it seems to have gotten worse and the medicine doesn't seem to help much. She is also finding that her energy is zapped. For about 3 days after her chemo treatment she just doesn't feel good at all and just as she's starting to feel better, she has to go again. What kind of remedies have you found that help with the side effects? I've seen the ads for procrit. Does anyone take it and does it work? Just looking for some answers. Also, are there other options of treatment that we should be looking into? The doctor was frank with us stating that generally the chemo works well with SCLC, but eventually it will all come back and won't respond so well. He's given her a two year prognosis with treatment. Not great, but better than a matter of months without. Is there ANY hope beyond that? We're trying to remain hopeful, but also realistic at the same time. Thanks, Jifner Quote Link to comment Share on other sites More sharing options...
KatieB Posted May 28, 2003 Share Posted May 28, 2003 Hello, There is hope and it sounds like your mom's doctor is a keeper....he gave your mom 2 years (whereas my dad has sclc, mets to liver) and his doctor gave him 4-6 months!! My point is you can't trust in numbers and no one really knows when our time is up or when a new L/C drug will be released or a new treatment becomes available, all we can do is live our lives one day at a time. Chemo is working for my dad right now. I pray that it continues to work each and ever time it is needed. In between those times, we live our life, we celebrate that we still have each other and keep our eyes and ears open for new things, new research, a list of options..just in case. Just FYI, he out lived that 4-6 month "expiration date" four months ago! There ARE long term survivors of sclc out there. I remember how important it was for me to know that in the beginning. This is a SURVIVABLE process. She can do it with your help. Hang in there and come here often, to talk, for a shoulder to lean on, keep us updated as we really do care here! God Bless Quote Link to comment Share on other sites More sharing options...
Candy Posted May 28, 2003 Share Posted May 28, 2003 Sorry you are having to deal with this nasty stuff! My husband also had SCLC and I agree with Katie 100 percent - don't listen to the numbers, new treatments are out there all the time. Being tired is part of it. Its a rollercoaster ride for sure. Have a treatment, feel lousy by the end of the week, and just get feeling better about the weekend before the next treatment is due. I've found from reading everyone's posts here and experience that the anti-nausea drugs prevent nausea but don't necessarily get rid of it once it starts. Hugh now takes them every 4-6 hours for the first week after a treatment whether he is sick or not. He has been doing really well with no nausea. If one drug doesn't work, ask your doctor for a different one. There are many different ones out there. I heard someone compare the fatigue during chemo to the feeling of being neck-deep in water and trying to run. I think you just have to give in to it and sleep as much as you need to. And everyone here will tell you: drink, drink, drink plenty of fluids! Best wishes to you and your mom! You have come to the right place. This board offers a wealth of information and support! Quote Link to comment Share on other sites More sharing options...
mainecoon Posted May 28, 2003 Share Posted May 28, 2003 My wife was diagnosed with SCLC in April. She's had two sessions of treatment with Carboplatin and Etoposide (VP-16), each session lasting for three days. Her nausea was well controlled by the medicine given her before each treatment. Yesterday she started getting dry heaves. She told me she'd forgotten to take her Phenergan, which was originally prescribed to help her control the nausea which sometimes accompanies opiate agnostics like Oxycontin or MSContin. As you may have read, the antiemetics should be taken on a schedule whether or not a person feels nauseous. They are intended to prevent nausea, and may be of limited value if taken once nausea begins. I've been told by staff in the adult Infusion clinic at the University of Michigan that Procrit can be very effective, but it's an uncomfortable shot. I'm told it stings quite a bit when administered. Many people choose to tolerate the fatigue rather than deal with the discomfort of a Procrit injection. Quote Link to comment Share on other sites More sharing options...
Guest bessb Posted May 28, 2003 Share Posted May 28, 2003 I also have been diagnosed with SCLC with mets to liver. I started chemo in mid march and at first had no nausea, just a little queasy feeling a couple of days after treatment. However the past three weeks I have gotten progressively worse after treatment. They explained to me that it is a cumulative effect of the chemo and towards the end nausea and fatigue get worse. I actually had vomiting this week for the first time since I started the chemo. Of course I hadn't taken any anti nausea medication because I never needed it before. In my case I have decided to forego the anti nausea meds because I don't like how they make me feel, dopey and depressed, that is unless this nausea gets worse. So far its manageable, just vomited once in the morning on 3 different days and then I was okay. Hang in there, thats what I keep telling myself Bess B Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted May 28, 2003 Share Posted May 28, 2003 Hi, Welcome to the group. I just finished my 4th round of chemo and slept for 18 hours a day for the 4 days following. Last night, 12 was enough. It is frustrating to be sure, but if that's what the body needs, then it's best to give in to it. It has seemed to get a little worse with each treatment. I just figure my priority right now is battling this cancer and everything else just has to wait. Good information above about Procrit. It is for low red blood cell counts and I haven't had a problem with that so far. I do get an injection of neulasta now for white blood cell counts because I had a problem with that. Doesn't help with the fatigue though. Be sure to check for elevated temperature, drink plenty of fluids, and know that the chemo is doing its job. One day I got sick while at the doctor's office and they gave me a Zofran to dissolve on my tongue. I do know that it's very expensive and my insurance probably wouldn't cover a perscription. The compazine has worked ok. Do ask for different anti nausea to take as a preventative and I hope you'll find something that works. Best of luck. Jenny Quote Link to comment Share on other sites More sharing options...
KatieB Posted May 28, 2003 Share Posted May 28, 2003 Maincoon, My dad takes an Arenesp shot, (similar to Procrit) and not only does it help his counts during each chemo, it isn't as bad as you have heard. It is a slow injection, but my dad hasn't had any reaction to it and according to him, the pain of the injection isn't any worse than when he has blood drawn. It makes him feel SO MUCH better and he doesn't get sick like before (He does not have a port - not because of any reason - he just has good veins. During the 1st cycle of chemo he got very ill and strongly considered the port and then got better before he got around to getting one. Now (fingers crossed) he hasn't the need for a port) Anyway, just wanted to post my 2 cents on the Arenesp / Procrit, it's an individual thing, but didn't want the negative feedback you previously heard scarring you guys into not doing it. Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted May 28, 2003 Share Posted May 28, 2003 Katie, Thanks for the info on the arenesp. I had seen you mention that before and I was wondering. What prompted them to give this to your father? Was it because of low red blood counts? Does it help with the fatigue as well? I think I'll ask about that. I hope things continue to go well for you and your father. Jenny Quote Link to comment Share on other sites More sharing options...
KatieB Posted May 29, 2003 Share Posted May 29, 2003 Jenny, Yes, it is something you should ask about! The first few shots made my dad alittle nauseas ( He has a very weak stomach anyway) but he is used to it now and it DOES give him much needed energy, and you know what, even in-between shots his blood counts keep getting better! >>>ARANESP http://www.aranesp.com/patient/anemia_c ... /boost.jsp Having developed the first recombinant human erthropoietin product, Amgen now ushers in a powerful option in the treatment of chemotherapy induced anemia. Your doctor may prescribe Aranesp® to stimulate your body's natural production of red blood cells. Specifically, Aranesp® works by stimulating your bone marrow to produce more red blood cells. And with more red blood cells in your body, you may have more energy Quote Link to comment Share on other sites More sharing options...
mainecoon Posted May 29, 2003 Share Posted May 29, 2003 Thanks for that info, Katie. My wife goes for her third round on June 11. We will definitely talk to the onc about Arenesp. Quote Link to comment Share on other sites More sharing options...
Candy Posted May 29, 2003 Share Posted May 29, 2003 Hugh is also now getting an Arenesp injection 1x/week. They started it when his red blood cell count got low. He says it burns slightly but nothing really bad. Hugh's blood counts have still been dropping and he had the transfusion last week, but the nurse said sometimes it takes up to 6 weeks before the injection starts working. I wonder why they don't give it sooner so its working by the time they need it? Quote Link to comment Share on other sites More sharing options...
KatieB Posted May 29, 2003 Share Posted May 29, 2003 Candy, Duh right!!?? That would be common sense! I wondered the same thing! My dad's counts didn't get better until January! But I'm thankful now they are stable and he gets these "bursts" of energy every few days. Quote Link to comment Share on other sites More sharing options...
Guest Jonathan Posted May 29, 2003 Share Posted May 29, 2003 yes, there is hope out there. Your mom's oncologist is just preparing you for the worst, but it can and has been beaten! Here is a list of drugs that are approved for the treatment of small cell lung cancer. cisplatin carboplatin etoposide (VP-16) (usually given with cisplatin or carboplatin) topotecan camptosar (CPT-11) (usually given with cisplain or as single agent) taxol (paclitaxol) cytoxin with vincristine and adriamycin methotrexate given with lomustine These drugs are investigational to a degree and are in clinical trials for small cell lung cancer. g3139 (no name yet) iressa (just began trials) RFA radio frequency ablation a drug called R(+)XK 469 (in phase I studies) gleevec You may want to ask your oncologist about gemzar, as i am getting mixed answers on whether it is used and or effective in small cell lung cancer. If you have any questions or just want to talk, email me at te11t@aol.com Best wishes for a cure to you and your family. Jonathan Quote Link to comment Share on other sites More sharing options...
Candy Posted May 29, 2003 Share Posted May 29, 2003 Geez, Jonathan - what would we do without you? Thanks! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 29, 2003 Share Posted May 29, 2003 Aranesp is a longer acting drug than Procrit so it works faster and better. Also if you are having problems with white cell counts, Neulasta works better than Neuprogen because you get it 24 hours after last chemo and it also works faster and is longer-acting. Instead of waiting until count low and getting Neuprogen the Neulasta is already working. Helped me alot. Quote Link to comment Share on other sites More sharing options...
Guest canuckwebgrrl Posted June 3, 2003 Share Posted June 3, 2003 Jonathan, I'm interested in learning more about Iressa being used in clinical trials for SCLC. Is this in the States? (I'm in Canada) I looked up the Iressa site, and they never mention SCLC treatment...could you tell me where to find this info? Thanks so much, Quote Link to comment Share on other sites More sharing options...
KatieB Posted June 3, 2003 Share Posted June 3, 2003 Chris, I asked my dad's Onc about Iressa last year when I read about a clinical trial. I was told that Iressa is ineffective and is not used for sclc. You can call the maker of that drug and ask them as well. I've included some info below. http://www.iressa-us.com/comingsoon/index.asp IRESSA Is the First In New Class of Drugs for the Treatment of Advanced Non-Small Cell Lung Cancer – Only FDA Approved Option for Third Line Patients If you would like additional information regarding AstraZeneca products, please contact the AZCSN in the U.S. at 1-866-99-AZ CSN or 1-866-992-9276, Monday through Friday, 9 am - 8 pm ET, excluding holidays. Quote Link to comment Share on other sites More sharing options...
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