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Medical Forum / Diseases and Disorders / Cancer / January 2006Mom has Small Cell Lung Cancer
Hello Everyone, I have read quite a few of the posts on this group regarding Small Cell Lung Cancer, and thought it was time I write! My 59 year-old mother was diagnosed with Small Cell Lung Cancer in late July '05. By the time they caught it, it had spread to her liver, making it Extensive Stage. She started on chemo in August - Cisplatin and Etoposide - 3 days on, then 3 weeks off for 4 rounds. After that, she had 15 radiation treatments to her brain (preventative - it has not spread there). The tumors in both her lung and liver shrunk significantly with chemo, but it was like the minute she finished chemo, they started growing again. She had a CT scan right before Christmas which showed the growth. Her oncologist is starting her on another chemo next week - Topotecan. She will do this one time per week; I'm not sure for how long. All in all, she's doing pretty well. She's going about her daily activities as best she can. She gets really tired, but I know that's to be expected. She quit smoking - finally. I wish she had done that a long time ago, but we can't turn back time. I know this is incurable. I know no one can predict how much time she has left. When I ask the dr. and nurses, they tell me, "every person is different..." I guess I'm wondering what to expect in the coming months. Will she start declining soon? Will it be rapid? Her dr. says he is starting her on Topotecan to keep the tumors "at bay". Has anyone had experience with this drug? How is it tolerated? How long, on average, before the tumors become resistent to it. She is in good spirits and remains determined. I worry about what this next round will do to her. She was petite to begin with, and is about 91 lbs now. She's maintained that weight all along, so that's good. It's just such a terrible thing...I'm trying really hard to deal with it, but I'm just not ready to lose her!! I am trying to be strong for her, and manage to do it most of the time. But boy, is it hard! I'm 36 and this is just not something I thought I would go through so soon, not that anyone ever "expects" to! We live about 8 hours apart, and I have been up to see her every month since we found out. It's sad to say, but we are closer now than ever... That's all for now. Thank you all for listening...all of you are in my prayers! It's a great community here!! Tara > Her oncologist is starting her on another chemo next week - Topotecan. > She will do this one time per week; I'm not sure for how long. [quoted text clipped - 15 lines] > next round will do to her. She was petite to begin with, and is about > 91 lbs now. She's maintained that weight all along, so that's good. Hello Tara, I'm sorry to hear about your mother. Welcome on board. Others will reply to you shortly, so please stay around. This is information about Topotecan and SCLC. I hope I'm interpreting it correctly in light of your mother's experience. http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Lung/6ManagementPolicie s/642SmallCellLungCancer/default.htm Recurrent SCLC cannot be retreated with curative intent. Patients that have tolerated initial chemotherapy poorly are likely to have worse toxicity with re-treatment. Disease progression within six months of completion of previous chemotherapy is usually resistant to chemotherapy. Patients with longer remissions, particularly those that are free from progression for more than six months may benefit from further chemotherapy. A number of new agents have been recommenced for recurrent SCLC including topotecan. Patients with refractory SCLC or tumors that relapse within less than three months of initial chemotherapy have resistant tumors and any chemotherapy (including topotecan) is associated with high toxicity and low response rates (<5%). A randomized trial of patients that were progression-free for at least 2 months compared topotecan to CAV. The results were poor and not significantly different between the arms. Since it is known that etoposide and cisplatin are more active than CAV in previously treated SCLC, the role of topotecan in the treatment of relapsed SCLC remains to be defined. The following PDF about Topotecan seems to have more recent results about SCLC - seems to compare 3 single arm studies to the above. Looks to me that your mother's fits in here - progressed before 90 days after completion of first line therapy. "median time to progression and median survival were similar in all 3 stuides and the comparative study". http://us.gsk.com/products/assets/us_hycamtin.pdf Single-Arm Studies: HYCAMTIN was also studied in 3 open-label, non-comparative trials in a total of 319 patients with recurrent or progressive small cell lung cancer after treatment with first-line chemotherapy. In all 3 studies, patients were stratified as either sensitive (responders who then subsequently progressed >90 days after completion of first-line therapy) or refractory (no response to first-line chemotherapy or who responded to first-line therapy and then progressed within 90 days of completing first-line therapy). Response rates ranged from 11% to 31% for sensitive patients and 2% to 7% for refractory patients. Median time to progression and median survival were similar in all 3 studies and the comparative study. /end quoted text/. She might want to abandon as Penny did (the clinical trial) and go for an assessment for radiation therapy, as required, which seems to have helped Penny quite a bit with her breathing, and quality of life. I could be wrong but I think your mother's came back much faster than Penny's. It's certainly more advanced, as Penny just had an x-ray and the tumor didn't even show up on it. Her blog is here. http://pensclc.blogspot.com/2005/11/june-6-2005.html I'll be back to welcome you properly. Hugs J > Hello Everyone, > [quoted text clipped - 44 lines] > > Tara Hi Tara, I was diagnosed in June of 2005 with SCLC and started chemo the first of July, on the same drugs that your mom is on and the same type of regime. My original tumor was 4.5 cm in diameter (with mets to the adrenal gland and 3 lymph nodes, making it extensive)and after chemo ended (Sept 30th) it had been reduced to 2cm (if I remember correctly). I was then put on a trial drug and after a month and another CT scan, the tumor and doubled in size in that month. The doctor then took me off the trial. Shortly after that I was having trouble with coughing and was given radiation the week before Christmas to reduce the tumor and ease the coughing. My oncologist did tell me that chemo would not be recommend again as SCLC usually becomes resistant to it and it does more harm than good. I was also told that they will not do radiation to that orignal tumor site again and the body will not tolerate it a second time. I have chosen not to have radiation to the brain - an informed decision. So now, whatever they may do will be strictly to give me a better quality of life. I was told in December that I may have a couple of months left. Now the oncologist has said he will see me at the end of March unless I get symptoms that require attention before that. Guess what I'm saying, is no one can really say how much time there is. Right now I feel so good it's hard to believe that I have cancer. Some side effects left over from the chemo are what bothers me more than anything else at the moment. Please feel free to read my blog at http://pensclc.blogspot.com/ if you like. I hope it might help answer some of your questions or maybe you will see some similarities. lots of hugs, Penny >Hi Tara, > [quoted text clipped - 28 lines] >lots of hugs, >Penny Thank you so much, J and Penny for your replies. They were most helpful! It sounds as though this new chemo is really a shot in the dark, given the fact that the tumors increased in size so quickly. After reading about your radiation, I am wondering why Mom wasn't given that option. Maybe it has to do with where the tumor is located in the lung? I have no idea exactly where hers is. Penny, I have read most of the entries on your blog...first, I must say thank you for sharing!!! It is very helpful for me, the daughter of someone going through this, to read what it is REALLY like for the person actually living with it. Mom is so strong on the outside, but I know she has to be scared. We have had our moments where we break down, that's for sure though. Sometimes it will hit me when I least expect it. I won't really even be thinking about it, and then a memory of something Mom did years ago will pop in my head. Then it's right there again. Mom is like you, Penny...except for getting fatigued easily, she feels good. That's why it's hard to grasp that she is really sick. I guess I wonder sometimes why it took so long for her to be diagnosed (sounds like the same deal with you, Penny). I mean, the doctors knew that she was a long-time smoker. Shouldn't that be a huge red flag to test for this? When they first noticed a "nodule" on Mom's lung on the chest xray, they told her it was probably nothing and that they would check again in 3 months. Looking back, I see the symptoms so clearly and wonder how they could have missed them: severe coughing, numerous bouts of bronchitis, weight loss, etc. etc. Why did they not test sooner? I have read so many posts from folks who went through the same things before they were diagnosed. I don't know that it would have changed anything, but maybe she would have more time. I have learned to let that go, and know that I just have to live day-to-day. It's hard sometimes. I am scared. I'm scared I won't be strong enough to help her through when things start getting bad. My parents are divorced, so it's basically my sister and I who are dealing with this. My mom's mom is in total denial over this and we can't really talk about it with her at all. We feel pretty alone a lot of the time and overwhelmed by the thoughts of what will eventually happen. My boyfriend, Nick, and I are going up to NC to see Mom next week. She has never met him, and I want her to. We'll stay Thursday - Sunday, and then I'll plan another trip in February. It's so easy to get caught up in day to day life..before you know, one day has faded into the next, and then another month has gone by. It is so easy to take all of this for granted and forget that each moment is precious! I will stop rambling now...thank you so much for listening and sharing. I'm so glad to be here with you! Take care and lots of hugs, Tara >> Hi Tara, >> [quoted text clipped - 86 lines] > > Tara Hi Tara, Glad that my blog could be of some help. I know that it is very common to be misdiagnosed with lung cancer. My GP and I looked at asthma, allergies, then it looked like pnuemonia from the x-ray, after two bouts of antibiotics, a CT scan was ordered and that's when we finally realized it was cancer. Actually my GP said after the second dose of antibiotics that she was concerned about cancer and ordered the CT scan. It's unfortunate but understandable. I believe my GP did the best that she could do. Please ramble all you want! :) I think most would agree that that is what this ng is for. :) Enjoy your visit and let us know how it went upon your return. My thoughts and prayers will be with you! hugs, Penny > Thank you so much, J and Penny for your replies. They were most > helpful! It sounds as though this new chemo is really a shot in the > dark, given the fact that the tumors increased in size so quickly. When I look back at that info I posted, it looks (to me) that's she refractory. It's hard to know since we don't have the details of her trial, but the words of the first website echo in my brain. That Province has the best cure rates or equal to all of North America and it was pretty clear about topotecan and SCLC. So really the benefits are ? advancing science and possibly extending her llife a bit by being in the trial with closer monitoring vs chemo outside a clinical trial, vs hospice care (help with symptooms from her doctor) and living her life in whatever way she would normally or travelling or finishing projects or however she wants to spend the rest of her life (ie how she defines quality of life). Perhaps when you visit you'll have a chance for such discussions. > After reading about your radiation, I am wondering why Mom wasn't given > that option. Maybe it has to do with where the tumor is located in the > lung? I have no idea exactly where hers is. Possibly - location can make a difference. You say "tumors" - perhaps it's not possible (would do more harm than good). or possibly she consulted an oncologist but not a radiation oncologist. Or possibly she has more confidence in chemo, a lot of people hear cancer and automatically think chemo. When you go, if she's coughing, tell her about Penny and ask her if she's consulted a radiation oncologist. > Penny, I have read most of the entries on your blog...first, I must say > thank you for sharing!!! It is very helpful for me, the daughter of [quoted text clipped - 4 lines] > it. I won't really even be thinking about it, and then a memory of > something Mom did years ago will pop in my head. Still happens to me sometimes, especially when replying to females about lung cancer. It was years ago now, but mom was diagnosed ~5 weeks before she died. She'd had a cough for years. She ate like a bird, for years, so some weight loss wasn't noticed. And her breathing troubles were attributed to the smoking. Doesn't matter anyway. I know (she had chronic pain problems and other health issues) she had a good and fairly long life and would never have been able to cope with treatments. It was for the best, but I still miss her at times. We never forget, do we? > Then it's right there again. > [quoted text clipped - 7 lines] > chest xray, they told her it was probably nothing and that they would > check again in 3 months. Somewhere in the archives is an article about the dilemna of a solitary nodule. If you use those two last words here http://groups-beta.google.com/advanced_search?q=&\ (by date) you'll see this post and probably a few others and will find the long article. > Looking back, I see the symptoms so clearly > and wonder how they could have missed them: severe coughing, numerous > bouts of bronchitis, weight loss, etc. etc. Why did they not test > sooner? I have read so many posts from folks who went through the same > things before they were diagnosed. I don't know that it would have > changed anything, but maybe she would have more time. Well, based on what you've told us, my prediction is she would have been on chemo longer and gotten sicker and her quality of life would have been worse. > I have learned to > let that go, and know that I just have to live day-to-day. It's hard [quoted text clipped - 3 lines] > is in total denial over this and we can't really talk about it with her > at all. Well, many of us have difficulty accepting that our loved one will die someday. Happened with me, many times, most recently with Dad. Even with pets, it's a battle of not wanting to let go and not wanting them to suffer. > We feel pretty alone a lot of the time and overwhelmed by the > thoughts of what will eventually happen. Well, you're not alone anymore, because most of us here understand. > My boyfriend, Nick, and I are going up to NC to see Mom next week. She > has never met him, and I want her to. We'll stay Thursday - Sunday, and > then I'll plan another trip in February. It's so easy to get caught up > in day to day life..before you know, one day has faded into the next, > and then another month has gone by. It is so easy to take all of this > for granted and forget that each moment is precious! So true. Good idea about the visits. Make memories to last a lifetime and take photos. > I will stop rambling now...thank you so much for listening and sharing. We'll be here, caring. Hugs J > Hello Everyone, > [quoted text clipped - 7 lines] > she had 15 radiation treatments to her brain (preventative - it has not > spread there). Question for Steph: Do they really do dxrt to the brain, or anywhere else for that matter, just on the off-chance there is some spread there? MIKE >> Hello Everyone, >> [quoted text clipped - 11 lines] > for that matter, just on the off-chance there is some spread there? > MIKE It's the "standard of care" in many parts of the world to do prophylactic whole brain RT after chemotherapy and radiotherapy to the lung for limited stage small cell lung cancer. It does reduce the subsequent incidence of brain mets. |
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