Guest cd1213 Posted November 9, 2003 Share Posted November 9, 2003 Hi To All, My mom was just dx'd this week (11/06/03) with sclc. She has pain in her back that has moved around to behind the breast. Found sclc in both lungs. Pulmonlogist diagnosed and assumes it has spread to bones because of pain. She has had pain for 1 month. We meet with oncol. on wed. (11/12/03). Seeking advice on what questions to ask and any info I need to know before going in. Any specific centers we should look at? She is an otherwise healthy young 70 year old. My sister died of extensive sclc 6 years ago 8 DAYS after dx at 39 yrs old! She didn't have a prayer. Hoping Mom has more of a chance. Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted November 9, 2003 Share Posted November 9, 2003 Hello, I'm really sorry to hear about your mother but hopefully you will find hope and support here. I don't have personal experience but I understand that the Vanderbilt-Ingram Cancer Center right there in Nashville has an excellent LC program. Is the oncologist that she is seeing affiliated with them? If not, I'd at least think about a second opinion there. ES-SCLC is a tough one but certainly treatable. The most widely used treatment today is probably combination chemotherapy with cisplatin and CPT-11 (aka irinotecan or Camptosar) along with possible radiation to bone mets and brain mets, if any. What tests has she had so far? It may be OK to assume that she has bone mets causing pain but I'd want a bone scan to be sure and I'd want an MRI of the brain to check for brain mets if it hasn't been done. A PET/CT would give the best picture. Your mother has a hard fight ahead but if she's an otherwise young healthy 70 she should go for it IMHO. Hate you have to be here but welcome. Sam http://www.mc.vanderbilt.edu/vicc/showcontent.php?id=278 Quote Link to comment Share on other sites More sharing options...
Guest cd1213 Posted November 10, 2003 Share Posted November 10, 2003 Thanks Sam, She is scheduled to see an ocologist from Sarah Cannon Cancer Center at Tennessee Oncology Assoc. Clinic. The pulmonary dr. referred her there but this drs. special interest is breast cancer! I have been looking at Vandy also and I have a message in to them for an appointment. We are stressed about the time that has gone by. We want to get her going ASAP so waiting for Vandy may not work out. Other family members have to agree on coarse. She had a ct first then an inconclusive broncialscope, sorry about spelling, then she had a ct with a needle biopsy for the final diagnosis. We will be having more tests with the oncologist. I am taking notes on every bit of info I can, including meds. Thanks for helping. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted November 10, 2003 Share Posted November 10, 2003 Sam is right. Check out the website he put up. Also the chemo combo he mentioned is the same I had almost 3 yrs ago. Good luck! Cindy Quote Link to comment Share on other sites More sharing options...
Guest cd1213 Posted November 10, 2003 Share Posted November 10, 2003 Thank you both. I am hoping more people from this site respond. It's so time consuming reading through all the posts, I know there is good info here and I am trying to get through as much as I can. As you both know, this discovery phaze takes time and caring for her needs right now is time consuming. We are going to look for a wig today and get her out of the house. Yesterday was a bad day, she has more pain. She is living on hydrocodone. I am going to call the Dr today and get something stronger. Cristi Quote Link to comment Share on other sites More sharing options...
OhioKat Posted November 10, 2003 Share Posted November 10, 2003 definetly more tests, I hate when Drs (or anyone) assume anything. I had pain like you described with your Mom, although mine was after I was done with treatment, they thought it was a bone mets because the bone scan showed some small spots but they didn't show up on the PET scan. My Chemo Doc is thinking now that the pain was an inflamation in the spaces between the ribs. Had we just gone with the bone scan then they would have missed the mass in my pevlis. So make sure they test throughly. Hope everything turns out ok Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted November 10, 2003 Share Posted November 10, 2003 I agree that starting treatment ASAP is important, like this week. She could have the bone scan, MRI and PET scans after starting therapy. It looks like the diagnosis of ES-SCLC is established if she has tumor in both lungs. She can also go for second opinion after starting therapy. The oncologist she is planning to see may be excellent and perfectly capable of treating her but a second opinion at Vandy couldn't hurt and she may be a great candidate for a clinical trial there. One more thing. Combination chemo with cisplatin and etoposide is probably the current "standard" treatment of ES-SCLC. It's been around longer than the cisplatin/CPT-11 regimen and has an established track record. But the cisplatin/CPT-11 regimen has slightly better outcome data and that would be my choice. Oh, and one more thing. It should go without saying that smoking will significantly worsen her prognosis. If she hasn't stopped already, she absolutely must! God bless us all Sam Quote Link to comment Share on other sites More sharing options...
kimd Posted November 10, 2003 Share Posted November 10, 2003 Just wanted to let you know that you are not alone here. My dad was also very recently diagnosed w/ext SCLC after quitting smoking over 20 years ago and he was very healthy and active! Once we got over the initial shock, I wanted to know everything. Thank goodness I found this website -- has been great resource to me. Also, push the doctors ASAP for treatments for the pain. My dad has mets to shoulder and was in terrible pain. He's a former Army sargent, so he can take a lot. Once they started radiation, he was much better w/pain. After 16 treatments (ended approx 2 weeks ago), he hasn't taken a pain pill in over a week. Our docs kept saying we had to wait to see of SCLC or NSCLC for treatment. After diagnosed SCLS I asked why so long for radiation since it works for both. I didn't get a really good answer, but I think it had to do with scheduling. Hang in there! Right now my dad's in cycle 2 of 4 of chemo treatments and other than being tired is resuming normal activities. He has a positive attitude right now and is a fighter! We take one day at a time! It helps to share with others -- great therapy! Quote Link to comment Share on other sites More sharing options...
Guest cd1213 Posted November 11, 2003 Share Posted November 11, 2003 So you think she can start one treatment and then maybe change over to another with another dr? Seems like I read somewhere that you should follow through with a drug coarse. I could be wrong, I have read so much lately my head is swimming! That would take a bit of the pressure off. I found out today that Vandy may not be able to get her in for another 2 weeks. I don't want to wait that long to start treatment. Sam is there a good site to get info on the different drugs? Kimd, I guess we will hang in this together. How old is your Dad? Best to him and you. I know how you are feeling. I hope Mom is still here 3 years from now like Cindy is. What do you all think about sharing info with her. In your experience, do you think she should know all the gory details of the treatments before she goes in? And all the "survival" stories? I don't want to discourage her and I don't want to give her false hope. She is computer illiterate so she hasn't access on her own to much info. Good Advice and Info from you all Thank you Cristi Quote Link to comment Share on other sites More sharing options...
mittlers Posted November 11, 2003 Share Posted November 11, 2003 Cristi, You need to get your mother into a doc this week. Two weeks is entirely two long for a patient with SCLC. Her cancer could grow significantly in two weeks. SCLC typically responds very well to chemo. My mother felt better within 3 days of getting her first round of chemo. Please try to get her into a oncologist this week if possible. Take care and I will keep your family in my prayers. Susan M. Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted November 11, 2003 Share Posted November 11, 2003 Hi Cristi, Generally speaking, you would not change a chemotherapy plan once it's started unless there are serious complications or side effects of the medication, or there an obvious failure in treatment like obvious progression of cancer while on the chemo. You might see one oncologist recommend a change if another's plan is way off base and out of line with current practice but that's going to be very rare. There's probably a 98% chance that any oncologist is going to start with cisplatin/irinotecan or cisplatin/etoposide and either is OK. Some substitute carboplatin for cisplatin because it's supposed to be a little less toxic. I don't know of any great source of cancer drug info. The link below is fair but a little out of date. The best way to find info is probably just do a search on the individual drugs you are interested in. http://www.fda.gov/cder/cancer/druglistframe.htm Finally, you say your Mom is a young 70 which I assume means she is quite mentally competent. If that is the case, then all treatment decisions, including what docs to see or not see and what treatments to take or not take, are her decisions to make, not yours or any other family members. Why would you not want her to have all useful information in making those decisions? Please don't take this personally but I see this so often. I know you love and only want the very best for your Mom but just because she is physically ill, she is not mentally incompetent and no one should treat her as such. That doesn't mean that you can't assist, advise, support, care for and love her. Do all those things. And certainly share the survival stories with her. It's been said on this board more than once "There is no such thing as false hope, there is only hope." Sam Quote Link to comment Share on other sites More sharing options...
kimd Posted November 11, 2003 Share Posted November 11, 2003 Cristi: My dad is 69 years old and very healthy. Also, he has a lot of willpower (a redhead!). He is doing very well with his chemo and the Drs. are pleased with his progress. I wouldn't switch in the middle of chemo treatment and I agree time is of the essence w/SCLC. Your mom needs to start treatment ASAP as it will also help with pain. I was with my parents through every Dr. diagnosis from the beginning. Was very difficult but we have all been very open about his condition and have agreed to remain open. He was in the hospital 12 tough days and ended up in ICU due to an overdose of pain meds. Glad they finally got that straightened out. He is not an Oxycontin man -- didn't have good reaction to it! My dad is making his own decisions but always asks our advice. We try to talk decisions over (quickly) as a family. We are blessed with a big, loving family who is very supportive. My dad is keeping his appetite which is good because I have an aunt who sends over homemade apple pie about every other day. My dad knows his attitude has a lot to do with the way he's going to feel. He gets depressed and has generally YUCKY days, but seems to rebound. He had a tough past weekend, but was out raking leaves yesterday! Hang in there and we'll keep each other updated. As you can see from the responses to your message, you'll get a lot of first-hand great advice from these folks! Take care! Quote Link to comment Share on other sites More sharing options...
Lisa Posted November 11, 2003 Share Posted November 11, 2003 I ran into a pretty good chemotherapy drug site yesterday.... Maybe this will help you. http://www.chemocare.com/ Quote Link to comment Share on other sites More sharing options...
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