Leslie Posted May 2, 2007 Share Posted May 2, 2007 We received really bad news tonight (just when you thought it couldn't get worse...). The PET scan revealed that in fact, my dad does not have Stage IIIB Adenocarcinoma lung cancer. It is Stage IV. It has spread to both lungs and they found two nodules on the brain (in the cerebellum). Chemo is now being postponed and my dad is meeting with a neurosurgeon on Friday to discuss radiation. I am so sad and so upset right now that I can barely move. Does anyone have experience with this? Can someone please give me a reason to be hopeful? Leslie Quote Link to comment Share on other sites More sharing options...
missyk Posted May 2, 2007 Share Posted May 2, 2007 Leslie... First, let me say how sorry I am that you didn't get better news. That just stinks! As far as the brain goes...there are many, many, many people who have/are controlling mets to the brain with radiation therapy!! Mom had a tumor in her brain when she was diagnosed and she used SRS (stereotactic radiosurgery or Cyberknife), when more showed up, SRS again, then we switched to whole brain radiation (WBR), and back to SRS again for the last time she had treatment. She suffered no side effects other than some fatigue for a while that went away and hairloss from the WBR that regrew. There are different types of radiation treatments that can be used and I pray that whichever is used on your dad is effective and "zaps" those buggers GONE! Much love and many prayers... Quote Link to comment Share on other sites More sharing options...
daddyslittlegirl Posted May 2, 2007 Share Posted May 2, 2007 Well, I just sent my post and now I read yours. It looks like we are in similar boats. I just got the call tonight also from my mom telling me my dad has 2 small lesions on his brain. I totally understand how you feel about not being able to move. Let's just pray together that our dad's have success with the radiation. Hang in there! Quote Link to comment Share on other sites More sharing options...
dchurchi Posted May 2, 2007 Share Posted May 2, 2007 Leslie, first off I am very sorry the learn of your news. My husband Alan had a met to his brain that was 3.0cm x 3.5 cm crushing his brain stem. Alan had 10 WBR treatments and 15 IMRT treatments to the tumor itself. That was almost 2 years ago. All Alan's MRI's since have been clear. Alan lives an active life with good quality of life. His cancer has returned to other parts of the body, but his brain is clear. Please read Alan's profile to know there is always hope even when the situation appears to be at it's very worst. My prayers to your Dad and your family Quote Link to comment Share on other sites More sharing options...
dscherer Posted May 2, 2007 Share Posted May 2, 2007 I have no experience but I do have prayers so I will send them your way!!! Dana Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 2, 2007 Share Posted May 2, 2007 Hi, Leslie and Adrian: It's a bummer that this complication had to crop up right now, just as you were getting a handle on some of your lung cancer and chemotherapy concerns, replacing the unknown with solid information and first-hand experiences of others who have been there. If I had received a finding of brain mets before starting my first-line chemo program, I'm sure my confidence and attitude would have become quite frayed at the edges -- it would have been a big unknown that I hadn't prepared myself for. If I got such a diagnosis now, I would see it as a setback but not necessarily a disastrous one. I know a lot more about the subject now than I did last September. I know that mets to the brain are a very common complication, perhaps the most common complication, of lung cancer. I know that about 50 percent of all adenocarcinoma patients will have brain mets at some point. I know that effective treatments are available now, and even better ones are in the works. And from my reading here, I know that many people have overcome the brain mets obstacle with success. The presence of the brain mets might change the planned chemo program (i.e., eliminate the avastin component), but the involvement of two lungs vs. one may not be particularly significant in terms of treatment options. The current staging system has been described as outmoded, but I guess it's the best we have for now. Please spend some time on Dr. West's site at onctalk.com. It's a marvelous resource and might help you deal with this unwelcome turn of events. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
trish2418 Posted May 2, 2007 Share Posted May 2, 2007 So sorry, Leslie. I'm sending prayers for all of you. Trish Quote Link to comment Share on other sites More sharing options...
wondermom Posted May 2, 2007 Share Posted May 2, 2007 I am sorry for what you are going through. My mom also had a couple brain mets but I am happy to tell you that the WBR took care of them completely. She had one other met that did show up but she had it surgically removed and her brain is now clear. Stay hopefull! Quote Link to comment Share on other sites More sharing options...
ztweb Posted May 2, 2007 Share Posted May 2, 2007 Oh Leslie, Please keep hope. I am sure there are people here who can give you stories of encouragment. While my dad's cancer is totally different, I want you to know that you have my prayers. Stay strong and know we are here for you! Jen Quote Link to comment Share on other sites More sharing options...
fillise Posted May 2, 2007 Share Posted May 2, 2007 Leslie and Adrian--So sorry that you got this news on top of everything else. Like the first wave, you will find that once the shock wears off and you begin to learn more about the treatments that you will feel more empowered to help your Dad. As you can see there are several folks here who have successfully fought the brain mets. I'm betting your Dad can too. ((((Hugs)))) Susan Quote Link to comment Share on other sites More sharing options...
Leslie Posted May 2, 2007 Author Share Posted May 2, 2007 Thank you all for your thoughtful words. My dad goes for a second opinion today. We are going to stay strong. I have to believe that we will be a lucky family in an unlucky situation. Your support is enormously helpful. Best, Leslie Quote Link to comment Share on other sites More sharing options...
Adrian Posted May 2, 2007 Share Posted May 2, 2007 thank you all. ned, you nailed it: just as we were coming to terms with the initial "problem" we get knocked down such that we have to look up just to see the initial problem. but im feeling ok today. we have a family that is united and full of love. a dad who is the sweetest and most morally good person ive ever known---not to mention intelligent. (growing up, my sister and I used to often talk about how lucky we were to have our parents.) We've taken some shots, and more might be down the road. As for now, my feeling is that if brain mets had to happen, I'm ok that it occurred before he started treatment. That way, we dont have to deal with that setback (for the first time) after he started treatment and have to directly face the fact that cancer is moving forward despite his treatment. as of now, we're just giving this disease a head start before we start taking back some major territory. We havent even started fighting yet. Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 2, 2007 Share Posted May 2, 2007 Adrian: About an hour ago I sent Leslie a PM in response to hers earlier. You seem to be in different locations, probably with different schedules, so I'll send you a duplicate. Check "My Mail" at the top. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Don M Posted May 2, 2007 Share Posted May 2, 2007 Leslie: I am sure that news of brain mets would be very upsetting to me too, but I know they can be easily managed these days. I have not to had to deal with brain mets and hope I don't have to. but if I did, I would consider cyberknife to treat them. You can visit the cyberknife site and ask radiation oncologists questions about possible treatments. I think many cyberknife centers have a neurosurgeon on staff. http://www.cyberknifesupport.org/forum/ Don M Quote Link to comment Share on other sites More sharing options...
Leslie Posted May 5, 2007 Author Share Posted May 5, 2007 We got some (relatively) good news yesterday. My dad met with the neurosurgeon and he thinks that there are 3 not four nodules. He thinks we can do stereostatic surgery. It will take 6 hours to "plant the quadrants" and 20 minutes of radiation...and the doctor thinks my dad can teach class the next day! (My dad is a professor.) Not only that, but he thinks that my dad can start taking the Avastin right away so chemo will not need to be postponed as we had previously feared... The neurosurgeon said that the nodules in the brain are very small--had we not done the MRI we never would have caught them until too late! Just a reminder of the importance of MRIs with this LC--because of the tendency to head for the brain. To everyone that wrote this week with such comforting words, many thanks. Let's pray that this works. Leslie Quote Link to comment Share on other sites More sharing options...
daddyslittlegirl Posted May 6, 2007 Share Posted May 6, 2007 Leslie, Thank you for sharing the update. I'm glad to hear the positive news. It also helps me. I told you before that my dad's situation sounds similar to your dad's. It's interesting to see the various opinions. My dad has 2 small nodules that he has begun 13 rounds of WBR for. I told my mom to ask about SRS. She said they wanted to do the WBR in case there are some "hidden" cells and because there is less likely recurrences. I was kind of concerned about WBR because I have read some negative things about it. However, Dr. West put some of those fears at ease. So I pray that both our dad's have much success with their treatment. Hang in there. Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 6, 2007 Share Posted May 6, 2007 Leslie and Adrian: I'm delighted to hear the good news. And if in fact your dad is able to start the taxol/carbo/avastin shortly after the SRS, I'd upgrade that to VERY good news. Traditionally (albeit a short tradition since things are moving so fast these days), avastin was not given to patients with a history of brain mets. But recent studies and clinical trials have led many oncologists to believe it is safe under certain conditions. That's encouraging, because avastin has been very beneficial to many patients. Here's a recent quote from Dr. West on the issue: With regard to the question about brain metastases, many of us in the lung cancer community think it may well be generally safe to give avastin to patients with treated brain metastases, whether after radiation or surgery. It's being tested in trials now, but right now we don't have evidence to show safety in patients with brain metastases. There have been rare cases of bleeding into the brain in patients who developed metastases while getting treated with chemo and avastin after previously having a negative brain MRI, so it's still something to be careful thinking about. That said, I also know of patients who have received avastin after getting treated for brain metastases, including by lung cancer experts. At the very least, I would want to have a very careful discussion about the potential risks and benefits with a patient. I think you'll agree that things are looking a lot brighter now than a week ago. Pretty soon I might be willing to trade places, but your dad has to move to Hawaii first! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fillise Posted May 6, 2007 Share Posted May 6, 2007 Leslieand Adrian--I'm glad you've got better news today! Susan Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 7, 2007 Share Posted May 7, 2007 Leslie, it was good to read some good news today. I pray all works out for him and he is back to work the next day. Good luck, will be sending prayers his way. Maryanne Quote Link to comment Share on other sites More sharing options...
Adrian Posted May 7, 2007 Share Posted May 7, 2007 Thank you all. Just to modify what my sister is saying---I think our updated understanding is that the chemo will have to wait 2 to 3 weeks post this Wednesday's radiation. We are very hopeful that our primary onc. will aggree with the neuro onc's assessment that Avastin is still in play despite the brain mets. Who else watched Koppel's "living with cancer" special last night? My parent's TIVO'd it---I think it will be very beneficial for them to watch and won't be "too scary" for them as my mom feared. On a another side note: This news marks the first little victory (i.e. remotely good news) we've had since our new lives began last month. It felt very good to have our first win after a long string of bad knocks. And was worthy of tempered celebration with a very nice Cabernet. Our toast "Here's to more good days to come, and to taking back precious territory." Quote Link to comment Share on other sites More sharing options...
fillise Posted May 7, 2007 Share Posted May 7, 2007 Adrian, my mom watched the Koppel special last night and thought it was interesting. It didn't seem to depress her at all. Glad you got to break out that Cabernet! Susan Quote Link to comment Share on other sites More sharing options...
daddyslittlegirl Posted May 7, 2007 Share Posted May 7, 2007 Adrian, I'll drink to that! Cheers!!! Quote Link to comment Share on other sites More sharing options...
karen335 Posted May 8, 2007 Share Posted May 8, 2007 Leslie, I had open surgery 2004 2006. Had Cyberknife in Oct 2006. Tumor was in the Cerebellum 6.5CM. Went to San Diego Cyberknife for 5 fractionated treatments. Went to UCLA last week for MRI and Pet scan of head. They said tumor is gone and deader than a doornail... Just stay positive and keep the faith. You will beat this thing. Have no fear, we are here for you... Sending lots' of prayers and strength... Karen Quote Link to comment Share on other sites More sharing options...
Adrian Posted May 8, 2007 Share Posted May 8, 2007 updated update. Our oncologist has suggested a clinical trial that would allow dad to begin full chemo+avastin one week post this wednesday's SRS. trial is called "passport"---but I have no substantive details as this is fresh off the email press. Quote Link to comment Share on other sites More sharing options...
Adrian Posted May 9, 2007 Share Posted May 9, 2007 Bad news. Dad just went in to get srs on 3 brain nodules. They found several more forming nodules and they have decided that he will need WBR in addition to todays treatment. I think the worst part is that this will delay his beginning chemo about 3 weeks. Trying to be strong but keep getting sucker punched. Quote Link to comment Share on other sites More sharing options...
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