Patti62 Posted December 29, 2005 Share Posted December 29, 2005 My 46-year-old sister, who is developmentally disabled (slow), was diagnosed with SCLC (oat cell) in mid-September. The whole process of getting the diagnosis, consults, scans and biopsies, and port-a-cath insertion took much longer than I had expected, but that is another story. The oncologist, although a nice guy and good to his patients, is not very good at explaining or answering any questions. I did manage to get him to say she had limited stage and her scans did not show any mets outside of the chest but it was like pulling teeth. He wasn’t that concerned about staging, kinda vague really, as the treatment was the same. I was able to read the reports myself and have some medical background but not in cancer treatment. I am her court-appointed guardian and legal power of attorney for health care. Finally got chemo started which is 3 days a week every 3 weeks. She is getting Cisplatin and Etoposide. Her 4th (and final round according to the doc) starts this week. Although it is ideal to do radiation at the same time, he didn’t want to because her counts went down after the first treatment and he said it would knock her socks off and make her too sick. I understand that. A few days before Christmas we had an appointment and I had more questions but he just out right told me “no questions today”. I was offended but I think he didn’t want to be so serious and spoil our Christmas Holiday. His plan is to finish the chemo this week, do a chest scan and we see him again on January 23 and then we’ll talk he said. – which I find frustrating because I don’t know if waiting this long in-between things is too long or normal, especially since we haven’t started radiation yet. Although the wait and not knowing what to expect seems excessive to me, I also understand that her body needs time to recover from the chemo too. My big concern is that he is going to deviate from standard treatment with chemo and radiation because she is poor and disabled. At the beginning of this, he was talking about doing the radiation right after the chemo and now “we’ll talk” at the next visit. She has tolerated the chemo quite well and has even worked at her job except for the weeks she gets chemo. I know treatment needs to be individualized too but I can’t seem to find anything on the internet either in regards to how many cycles of chemo is standard. I noticed that many of you have received several rounds through the course of a year or 2. What is a normal cycle or round of chemo and radiation? We are doing 3 days a week every 3 weeks times 4 – which totals 21 days of receiving chemo Drugs. How often should scans be done? Is there a place to find the information? I have looked but can’t find anything specific. Basically, Sis wants to live and I want to make sure she gets the same care and treatment. I think the doc cares for his patients in his own way and he pays attention to quality of life (hence the delay on radiation) but I am not happy about not receiving the information I want. I do know that sclc – oatcell, is very aggressive and to me time matters. But one thing I have learned from this board is that there is hope after diagnosis. Any suggestions or bits of info would be appreciated. Thanks for listening. Patti 9/05 – Sister diagnosed sclc 10/05 – chemo started –Cisplatin and Etoposide Quote Link to comment Share on other sites More sharing options...
Ry Posted December 29, 2005 Share Posted December 29, 2005 Welcome to the site. I am glad your sister has you for an advocate. I work with individuals that are developmentally disabled and I know how difficult it is to get even the standard care for them (if you are lucky enough to find someone that will accept medicaid that is). There is a forum here called Ask the Experts where you can ask questions about the protocol for small cell. I wish you and your sister well and once again welcome to our family here. Quote Link to comment Share on other sites More sharing options...
bunny Posted December 29, 2005 Share Posted December 29, 2005 welcome, though I am so sorry you have to be here. your sister sounds like an amazing woman, working through all of that. and you are a great advocate for her, you just keep at it. I agree with Ry, get as much info for yourself as you can - then it's harder for them to dodge your inquiries. again, welcome. xoxo amie Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 30, 2005 Share Posted December 30, 2005 Patti,welcome to our support family,but sorry to hear of your sisters diagnosis.SCLC is reputed to be more aggressive than NSCLC,however it also seems to respond to treatments better.Hoping that upcoming scans will show good results. Quote Link to comment Share on other sites More sharing options...
Don M Posted December 30, 2005 Share Posted December 30, 2005 Welcome Patti: I am not an expert about the chemo, but it seems like she is getting a lot of it. Most people who have later stages of NSCLC have 6 rounds of chemo, with 3 weeks being a round, and 3 treatment days within each round, so that is 18 days of receiving treatment. As Ry said, you should ask the experts forum about standard prtotcol for SCLC. I don't know much about the standard for radiation treatment. I do know from what others have said that doing radiation and chemo at the same time can be very hard. Perhaps you could ask the experts about radiation too. Some people have a ct scan halfway through a chemo treatment to see if there is any response. For sure, I would expect that a ct scan at least, be done at the end of chemo. I am cancer free now, but I have 2 ct scans a year and 2 x-rays a year. I have my blood checked every 3 months. I don't think it is unusual to delay radiation treatment until after chemo. If there is very good reponse to the chemo, I don't know if you should pursue radiation or not. That is something else you should ask the experts about. Maybe the oncologist will suggest not doing radiation right away after chemo.. and it would be good if you had some input from an expert about that scenario if it arises at your next appointment this January. You appear to be a very good advocate for your sister. You are asking good questions. Also, if I was told by a doctor , "no questions today", I would be very put off. I guess you have to do the research and decide if your sister's oncologist is doing the right stuff. If you feel that he is on the right track, I guess you could overlook his somewhat overbearing and authoritarian manner. I hope your sister's scan shows great response to the chemo. Don M Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 30, 2005 Share Posted December 30, 2005 Welcome to our site, Patti. Glad you found us. Keep us posted,and let us know how we may support you. Don Quote Link to comment Share on other sites More sharing options...
icbn Posted December 30, 2005 Share Posted December 30, 2005 WElcome Patti. I'm glad you found us, but sorry you had to. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted December 30, 2005 Share Posted December 30, 2005 Welcome Patti, Glad you found us. Rich Quote Link to comment Share on other sites More sharing options...
Patti62 Posted December 30, 2005 Author Share Posted December 30, 2005 Thanks for responding. Just having some support from those who have been there means alot and I am glad to have joined. I will ask the expert for an opinion. I can deal with a doc who has an attitude as long as he does the right thing and gives me all the info I need. I am a strong advocate for the disabled as I have seen through the years that they have been treated as second class persons - not being "normal" you know. People think they are stupid and don't have feelings or needs as normal people do. I will say that it is much better these days than what it was 25 years ago. Still, people who don't have a strong advocate or guardian don't always get the same options. Thanks for listening to my soap box and have a happy new year! Patti Quote Link to comment Share on other sites More sharing options...
Donna G Posted December 30, 2005 Share Posted December 30, 2005 Patti welcome. I also feel your sister is blessed to have you as an advocate. In my personal opinion most all of those labeled "slow" are way ahead of most all of us "normal" people in kindness, love, caring, gentleness. I think their strengths are much more important to have. Donna G Quote Link to comment Share on other sites More sharing options...
icbn Posted December 30, 2005 Share Posted December 30, 2005 Welcome Patti. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted December 30, 2005 Share Posted December 30, 2005 Hi Pattie, Welcome here. Your sister is so lucky to have you at her side. Keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
jang Posted December 31, 2005 Share Posted December 31, 2005 Welcome Patti! Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 31, 2005 Share Posted December 31, 2005 Welcome Patti, Your sister has a good guardian. Don't know much about how many treatments she should heve, so will leave that to people that know more than me. Tell us how we can support you and your sister. Hugs to both Jackie Quote Link to comment Share on other sites More sharing options...
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