SharKats Posted October 26, 2004 Share Posted October 26, 2004 If this has been discussed before - PLEASE forgive me. I would just like to know how many of you have had gamma knife surgery for brain mets. Don is the one who brought this up to me and since whole brain radiation was discussesd briefly with my 2nd opinion onc, I am anxious to know if this is relatively common with brain mets or if most onc's are saying WBR. I do NOT want the side effects caused by WBR and from the info shown on Memorial Hermann's web site, this seems to be a much more preferable way to go if the chemo doesn't shrink the brain tumors. I was truly excited to know there was an "out" and WBR was NOT my only option. Sure would like to know if anyone has had it done and their experience with the procedure. Quote Link to comment Share on other sites More sharing options...
john Posted October 26, 2004 Share Posted October 26, 2004 Gamma knife can only be used with fewer than 4 mets or so. The link below says up to 12 has been treated with gamma knife. And I think the mets can not be too big (around 3.5 cm). If you think about the number of mets it makes sense logically that this is a limitation. Too many mets and gamma knife almost becomes WBR (maybe worse since each beam is more intense). Alot of times WBR will be done first and then gamma knife or visa-versa. This is to insure that all the tumor is attacked versus just the visable lesions. So even if Gamma knife or SRS are used, it may be beneficial to due WBR to prevent recurrence. I am not a Dr so you have to discuss this with a specialist and then get a 2nd opinion You could ask about Temodar (temozolomide) http://www.temodar.com/ Also you might want to ask about radiosensitizers. This may allow a reduced amount of radiation. Both this and Temodar are still experimental (I believe) http://www.cancerguide.org/rcc_metbrain.html Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 26, 2004 Author Share Posted October 26, 2004 John, The Temodar page says I do not have permission to access it. So......... I feel really upset that those 4 mets in my brain are just sitting there and I'm hoping the chemo I'm receiving will kill them. I just wish I could find ONE person who had chemo either shrink or excise their brain tumors. It makes me wonder if my main onc is being realistic enough. Thanks anyway. Quote Link to comment Share on other sites More sharing options...
Don Posted October 27, 2004 Share Posted October 27, 2004 Hey Sharlene, I think you need a appointment with a neurosurgeon to really explain the gamma knife cause it can be used to do 4 at a time and can be repeated again. I have a excellent report that Dr Mark Kinskey who is a surgical neuro-oncologist at the University of Arkansas in Little Rock wrote that Radio surgery is now the primary treatment for metastatic brain tumors and plays an evergrowing role in the treatment of other neurological disorders. That is his quote. Gamma Knife can be used for one to four lesions in patients who are doing well functionally in controlling their primary cancer Dr Linskey estimates that description fits about more than 500 of the estimated 1,000 new metastatic brain tumor patients diagnosed in Arkansas every year. WBR can still be used at a later date if needed but the question that most of the neurosurgeon ask is why radiate the whole brain when they now have a way to kill just the tumor. All I can say is that I had Gamma Knife and now they cant find any evidence that I ever had one and the chances of another one forming there is extremly low if not zero unless it comes back in my lungs first. I say check out all the options first. God Bless Don Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 27, 2004 Author Share Posted October 27, 2004 Thank you Don. I'm printing this out and taking it with me when I see my main oncologist Monday. I'm also going to fax it to my 2nd opinion onc as he mentioned whole brain radiation. Thanks again!! Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 27, 2004 Share Posted October 27, 2004 Sharlene, I understand the treatment for SCLC is quite a bit different from NSCLC, but I have repeatedly heard both here and from three different oncologists that it is very difficult for chemo to cross the blood brain barrier to prevent or shrink brain mets. One oncologist told us that some of it gets through, but not enough to impact the mets. I agree with the others that the standard number of brain mets that are usually treated with gamma knife is 4 or less. I've also heard that it depends on the location of the mets if gamma knife can be used. My husband started with 8 brain mets, 2 disappeared with WBR, and 6 were treated with Novalis (similar to gamma knife). It took from 6:00 a.m. to 6:30 p.m. to get it all done, but they did it and two more mets disappeared. The 4 remaining mets were shrunk by 30%. The WBR was done last fall (Aug. 2003) and the Novalis was done a year ago (Nov. 2003). He has no ill effects from the WBR or Novalis and, even though 4 mets are still there, they were sufficiently stymied to prevent any further symptoms to this date. I understand that SCLC is quite a bit different and grows a lot faster. Since your lung tumor has begun to grow again, my vote would be to get the WBR and then follow up with gamma knife. I guess I feel that way since you have 4 mets now, and if it's true that SCLC grows rapidly, there's a good chance there are other critters up there waiting to make their presence known. WBR does a good job of destroying small ones that can be seen and ones that are so small that they can't be seen. Just my two cents! You have to do what is right for you. Love, Peggy Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 27, 2004 Author Share Posted October 27, 2004 Thank you SO much for the info Peggy! I really, really appreciate it. This is also going to be printed out and taken along to my oncology visit Monday. I really appreciate everyone taking the time to respond. God Bless Us Each and Every One Quote Link to comment Share on other sites More sharing options...
john Posted October 27, 2004 Share Posted October 27, 2004 Iressa has been reported to help with brain mets in a few cases. Though the research is still very new. Also Topotecan is supposed to help with brain mets. http://theoncologist.alphamedpress.org/ ... ull/9/1/68 The article above says CPT-11 and Temodar has shown beneficial synergistic effects in preclinical studies (i.e. studies with mice). Brain metastases from chemosensitive primary tumors Brain metastases from primary tumors that are chemosensitive, such as SCLC, choriocarcinoma, and breast cancer, may be responsive to systemic therapy. Single drugs or drug combinations should be selected based on their expected activity against the primary tumor This contains info on Temodar, Xcytrin, and RSR13. Temodar is a d http://www.lungcanceronline.org/treatme ... brain.html We report two cases of patients with lung cancer and recurrent brain metastases after treatment with chemotherapy and WBRT, each treated with temozolomide in combination with etoposide or gemcitabine. In both cases, the regimens were efficacious and well tolerated. One patient had SCLC and was treated with temozolomide and oral etoposide in a dosing schedule based on the results of a phase I study of patients with recurrent malignant gliomas [13]. A second patient was treated with temozolomide and gemcitabine. This is the first report for both regimens in the treatment of patients with brain metastases from lung cancer. In both patients, the brain metastases responded more dramatically than the thoracic lesions. There are multiple possible explanations for this finding. It is possible that the brain metastases were more sensitive to chemotherapy than systemic lesions because the CNS tumors did not develop resistance to previous chemotherapy regimens due to the blood-brain barrier. Alternatively, the brain metastases in these patients may be inherently more sensitive to the temozolomide-containing regimens than the primary disease, or the systemic lesions could be inherently more resistant. Previous exposure to radiation may have sensitized the lesions to chemotherapy, although radiation was completed several months before starting chemotherapy. Traditionally, treatment of recurrent brain metastases is very similar to the primary treatment of brain metastases [10]. Isolated brain metastases may be treated with surgery and stereotactic radiosurgery. The majority of patients, however, have multiple lesions. Once a patient has been treated with WBRT, retreatment is not recommended. Systemic chemotherapy can also be effective for the treatment of brain metastases, and is therefore an option for recurrent brain metastases [3, 15]. Many chemotherapeutic regimens have been used in phase II trials for the treatment of brain metastases arising from both SCLC (Table 1) and NSCLC (Table 2). Activity in the treatment of systemic disease correlates well with activity against brain metastases from lung cancer. Many of these regimens are toxic, with treatment-related mortality and dramatic effects on quality of life in these patients who have been heavily pretreated with chemotherapy and radiation. Among trials of patients treated for brain metastases from lung cancer, treatment-related mortality was observed in 7 of 13 patients treated with high-dose etoposide [16], in 8 of 80 patients treated with teniposide [17], and in 2 of 14 patients treated with cyclophosphamide, doxorubicin, vincristine, and etoposide [18]. The combination of temozolomide (TMZ) with whole-brain radiotherapy (WBRT) was better than WBRT alone for the treatment of lung cancer with brain metastases, according to a presentation at the 10th World Conference on Lung Cancer in Vancouver, British Columbia, Canada. "Radiation treatment (RT) in patients with brain metastases has limited activity. We thought that combining RT with TMZ, this new alkylating agent that crosses the blood-brain barrier, might enhance the efficacy," lead author Dosia Antonadou, MD, a radiation oncologist at Metaxas Cancer Hospital in Pireus and Athens, Greece, told Medscape. "We conducted a phase II randomized study and the results were promising. Based on our previous experience we conducted this phase III study to confirm our previous findings." Of 108 evaluable patients with histologically or cytologically proven lung cancer enrolled in this multicenter trial, 103 patients were evaluated for response by radiological assessment. Subjects were randomized to receive WBRT, 3 Gy for five days per week (total dose 30 Gy), alone or with treatment with TMZ 75 mg/m2 per day during WBRT, followed by 200 mg/m2 TMZ per day for five consecutive days every 28 days for six cycles, beginning one month post-WBRT. The primary endpoint was radiological response determined by computed tomography or magnetic resonance imaging at three months after WBRT. Median follow-up was 5.56 months (range, 0.426 - 20.79). Complete and partial response occurred in 48.0% of the TMZ plus WBRT group and in 27.5% of the WBRT alone group (P = .031). Time to progression was significantly longer in the combined arm (7.54 months vs. 5.99 months; P = .011). Patients in the TMZ plus WBRT group also fared better in terms of median survival (7.9 months vs. 4.3 months; P = .06), median survival in patients with multiple lesions (7.3 months vs. 4 months; P = .1248), median survival in patients first diagnosed with brain metastases and then with lung cancer (7.4 months vs. 4 months; P = .013), and median survival in patients with recursive partitioning analysis (RPA) Class II (3.8 months vs. 3.31 months; P = .05). "Patients under the age of 60 years and in good neurologic status did significantly better in the combined treatment group," Dr. Antonadou said. "In the subgroup analysis, chemotherapy-naive patients did better, as well as patients in RPA Class II." Median survival in patients in RPA Class I was eight months in both groups (P = .78). No grade 3 toxicities were noted. "There was no significant difference in survival concerning the number of brain [metastases]," Dr. Antonadou concluded. "We think that survival data have to be confirmed in a larger randomized trial having survival as an endpoint." This study was not sponsored, and none of the authors has a financial agreement with the pharmaceutical company that makes temozolomide. 10th WCLC: Abstract O-67. Presented Aug. 11, 2003. Reviewed by Gary D. Vogin, MD Quality-of-life benefits and evidence of antitumour activity for patients with brain metastases treated with gefitinib. Katz A, Zalewski P. Centro Paulista de Oncologia and Department of Oncology, Albert Einstein Hospital, Sao Paulo, Brazil. artkatz@uol.com.br Brain metastases are a common complication of non-small-cell lung cancer (NSCLC). The role of chemotherapy in the treatment of brain metastases has not been clearly defined. Emerging case reports of patients with recurrent NSCLC treated as part of the Expanded Access Programme reveal that gefitinib ("Iressa", ZD1839) has clinical activity in some patients with brain metastases. Here, we describe a number of case studies documenting the response of patients with brain metastases to treatment with gefitinib. Many of these patients had quality-of-life benefits with improvement of neurological and systemic symptoms; some had a partial response of their brain metastases and even complete responses have been seen in a few patients. One case report also describes a durable long-term response with concurrent treatment with gefitinib and radiotherapy. Such results call for larger trials designed to evaluate and define the role of gefitinib in the treatment of brain metastases in NSCLC patients, either as a single agent or in combination with radiation therapy. Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 27, 2004 Author Share Posted October 27, 2004 Wow - John, thank you so much for taking the time to copy/paste this info for me! I really, really appreciate it!! I don't like reading anything of length on the screen so I'm printing this out also. My main onc is going to spend more time with me at my next appointment (Monday) than she's ever spent with me. I need answers, and I just feel something else needs to be done for these brain mets. Thanks again!!! Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 28, 2004 Author Share Posted October 28, 2004 Hi everyone! Just wanted to let you know that I have an appt w/my previous radiation oncologist tomorrow AM to obtain her recommendations. I have a Monday appt w/my oncologist who does not know I have scheduled this appt. Tuesday I have chemo, Wednesday I see my pulmanolgist(?) and Thursday I have a 9:00 AM appt w/ the neuro-surgeon at Memorial Hermann to obtain info as to my being a good candidate for gamma knife. I have become pro-active and I am so proud of myself. Up until now I've been intimidated into taking only action that was recommended by my main oncologist and verified by my 2nd opinion onc. But when my cancer returned w/ mets to my brain and my 2nd opinion onc expressed surprise and some dismay that I wasn't receiving brain radiation - only chemo, I decided no more just following along blindly since the chances of this chemo reaching my brain are 50/50. That's just not good enough. I even have a list of questions typed out for my first radiologist onc. Wish me luck. I don't like having to make medical decisions if they conflict because how the heck do you know what is the right road to take?? But guess I better try to assimilate all the info I'm going to receive and attempt to do whatever gives me the best chance at living a little longer and hope I made the right decisions. Quote Link to comment Share on other sites More sharing options...
Addie Posted October 28, 2004 Share Posted October 28, 2004 Way to go, Shar....that's the spirit!! I'm so glad you're taking a more proactive and positive attitude....as it will serve you well. Not being medical professionals, it's hard to know what's best....I understand that. But making decisions re: tx depends on trusting our medical pros....compiling as much info as we can...and going with our gut. It sounds like you're on track for doing just that. It's about the best any of us CAN do, Shar. You have my very best wishes for luck and excellent results! I'm just so glad to see you moving forward, positively...instead of how you were feeling initially! You go, girl. And know you've got all of us right behind you, cheering you on, wishing you well and vibing you to beat the %#$#* out of the cancer!! Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 28, 2004 Author Share Posted October 28, 2004 Thank you Addie - you made me cry - but it's a good cry. Words cannot express how much the support the people here give means to so many people. (I didn't say that quite right but you know what I meant) Will keep you posted on what happens. Thanks again! Hugs, Quote Link to comment Share on other sites More sharing options...
Bonnie Posted October 28, 2004 Share Posted October 28, 2004 You are so right about Dr. Lindsky being top notch! He did Howard's Gamma Knife procedue last December. What a wonder man he and the others at UAMS are. Howard had excellent results from the procedure! The only sad note is that Dr. Lindsky is no longer with UAMS. In fact, Howard was his last patient he had in the Gamma Knife room. We were both sorry to hear that he moved to Southern California, but he told us should we ever need his services again we know where he is! If you would like I will try and find the information you will need to use him. Prayers, Bonnie and Howard Quote Link to comment Share on other sites More sharing options...
Addie Posted October 28, 2004 Share Posted October 28, 2004 Glad it was the "good kind" of cry, Shar! I'm just happy to hear some fighting spirit again, in the sound of your words. I know this all knocked you back a step or two, in the beginning...but I'm just really glad to know you worked through that and now are up and ready to forge ahead on a new attack!! We can't deny our feelings, especially the fear or sadness....but most of us realize too, that we need to hang on to our fight...to our will to beat this thing. So...I'm just glad you worked thru the fear and now are gearing up for the fight!! We'll be here....so keep us posted all along the way. I expect to be hearing good things!! Quote Link to comment Share on other sites More sharing options...
SharKats Posted October 28, 2004 Author Share Posted October 28, 2004 According to the National Cancer Institute: Extensive-Stage Small Cell Lung Cancer Chest irradiation is sometimes given for superior vena cava syndrome, but chemotherapy alone (with irradiation reserved for nonresponding patients) is appropriate initial treatment. (Refer to the PDQ summary on Superior Vena Cava Syndrome for more information.) Brain metastases are appropriately treated with whole-brain radiation therapy. However, intracranial metastases from small cell carcinoma may respond to chemotherapy as readily as metastases in other organs.[11,12] Quote Link to comment Share on other sites More sharing options...
Don Posted October 29, 2004 Share Posted October 29, 2004 Hey Sharlene, Am so glad you have taken control of the cancer and your life. Only you know whats best for you and we all go down different roads but we meet up sooner or later. God Bless Don Quote Link to comment Share on other sites More sharing options...
SDianneB Posted October 29, 2004 Share Posted October 29, 2004 Sharlene, you and I are going through somewhat similar circumstances now, having to shuffle between physicians just to find out what's going on! I know how very frustrating that can be, and echo the rest here in their congrats that you are taking charge and holding everyone's feet to the fire. I have thought a LOT lately about my relationships with the physicians and others where I entrust my care, partially to make sure that I'm not going off the deep end and being unreasonable, or that I'm not trying to treat myself or direct my own care. I feel confident I've not done that, as everything -- and I mean everything -- starts with what THEY tell me. One doc will say something, then another doc will do something that contradicts it, so that is when I start digging up info on my own and intervene. Had these things been isolated incidents, it would be one thing, but I've unfortunately had a pattern of such problems since I was diagnosed back in June. All that, just to say that my only other advice to you would be to stop and think now and then, and analyze everything -- even writing down who told you what and when -- just to make double sure. I do this often mostly to assure myself, but have had occasion to use it in other ways as well. You're taking really important steps, I think, and I am very happy for you, as are we all. It's an incredible feeling to take charge and feel like you're actively doing something, and I bet you will benefit from it greatly. My best to you. Di Quote Link to comment Share on other sites More sharing options...
SDianneB Posted October 29, 2004 Share Posted October 29, 2004 Sharlene, you and I are going through somewhat similar circumstances now, having to shuffle between physicians just to find out what's going on! I know how very frustrating that can be, and echo the rest here in their congrats that you are taking charge and holding everyone's feet to the fire. I have thought a LOT lately about my relationships with the physicians and others where I entrust my care, partially to make sure that I'm not going off the deep end and being unreasonable, or that I'm not trying to treat myself or direct my own care. I feel confident I've not done that, as everything -- and I mean everything -- starts with what THEY tell me. One doc will say something, then another doc will do something that contradicts it, so that is when I start digging up info on my own and intervene. Had these things been isolated incidents, it would be one thing, but I've unfortunately had a pattern of such problems since I was diagnosed back in June. All that, just to say that my only other advice to you would be to stop and think now and then, and analyze everything -- even writing down who told you what and when -- just to make double sure. I do this often mostly to assure myself, but have had occasion to use it in other ways as well. You're taking really important steps, I think, and I am very happy for you, as are we all. It's an incredible feeling to take charge and feel like you're actively doing something, and I bet you will benefit from it greatly. My best to you. Di Quote Link to comment Share on other sites More sharing options...
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