|
Help! Brain mets besides lung mets
Hi, everyone,
Yesterday I had a brain MRI, and today I received a call from my doctor's office that I have brain mets now, besides the 3 lung mets, and they want me to start on steroid. I'm lost, devastated, sad, etc., I'm not thinking straight, and I do not know what to do or where to go for the radiation. I live in LA, California, and the radiation facility they are sending me does not have gammaknife or cyberknife, so I guess they will suggest WBR. According to the information I received today, I have 3 brain mets, the biggest 2.5 cm, so I think I qualify for Cyberknife. Has anybody here been treated at Cidar Sinai, UCLA or Stanford? Does anybody take boswellia serrata instead of steroid? Is the steroid extremely necessary? What are the side effects of the procedures by your experience? There are so many decisions to make, so much research to do. Today I called Dr. Keith Blake office to make an appointment, but he does not take any insurance. I think I will see him for a second opinion. Tomorrow I will have some friends over to celebrate the New Year. I do not feel like celebrating anymore, but I do want to keep busy and don't think too much, so it will be nice to have my friends over, and it will help my family not to think too much about this news as well. I wish you all a Healthy and Happy New Year, and may in 2011 we find the CURE. Thanks. God bless you all. KarlaV. |
Re: Help! Brain mets besides lung mets
I'm sorry I have no advice to offer but I do send my warmest wishes for an enjoyable new year celebration with your family and friends and I hope you get the best treatment available. I am hopeful that these brain mets can be contained.
Trish |
Re: Help! Brain mets besides lung mets
Karla - I can relate to your feeling of desperation at learning this news of brain mets and the feeling of not knowing where to go or what to do with yourself, I am so sorry you are facing this news and having to make more tx decisions. I can't offer any advice to your on the type of radiation but encourage you to seek the best possible. There must me good choices in the LA area - even if you have to travel to get the recommended treatment. It sounds like you are already seeking out best options. So many people on this site have had tx for brain mets I'm sure they'll offer more help than I can. I just want to tell you I'm thinking of you and praying that these met will soon disappear altogether with radiation. And yes, I pray that 2011 can be the year of the Cure!
|
Re: Help! Brain mets besides lung mets
Karla
Hoping one of our resident brain mets experts will chime in...Steph from Seattle or Brenda....Brenda has had this more than once...also Courtney i believe just went through it...from all I've read, gamma or cyber knife and not WBR is the way to go...I know they give you the steroids to prevent any swelling....if I remember, Steph was on them...sending hope and many prayers your way that this will be dealt with quickly and easily..... May 2011 bring new hope to you! |
Re: Help! Brain mets besides lung mets
HI Karla,
It will be 7 years this May that i progressed to Stage 4 and was diagnosed with a 3cm tumor to my prefrontal cortex. I had surgery and stereotactic radiation. At that time they wanted to follow up with WBR and I refused. I am currently NED and on Tykerb and Hereptin. I work full time as a 5th grade teacher and live my life. I am sending this message to you because I want you to have hope. You will have to take steroids, and for me that was the worst part of the experience. My thoughts are with you. You are doing the right thing by having friends over tonight. Barbara H. |
Re: Help! Brain mets besides lung mets
Hi Karla,
I understand your feelings and I experienced the same in July this year when I heard my cancer went to my brain (I also have lung mets, plus liver mets). I was given no choice but WBR, since my tumors were more than a dozen. I fought my best not to have WBR, but gave in at the last minute. During the WBR, I didn't take steroid, but boswellia and it went well. Now, right before Christmas, they told me 3 tumors grows back and they will schedule Gamma Knife for me. I have not talked to me doctor yet and don't know what to expect for Gamma Knife; I guess you have to take steroid as Barbara mentioned. Barbara, your story is very encouraging. Happy New Year everyone! Grace |
Re: Help! Brain mets besides lung mets
It is time to make sure you get a second and maybe even third opinion. You want to find a Radiation Oncologist who will treat you with targeted radiation (IMRT - <Intensity Modulated Radiation Therapy>, Cyberknife, or Gammaknife) and not WBR, if it can be avoided... but also sometimes it is the only choice. With pretty small mets, I refused it and went to my docs with the Tykerb/Xeloda plan and regular MRIs to monitor, and the idea to attack them with targeted radiation when needed. I also told them that if my idea didn't work, that I would reconsider WBR. So far it has not been necessary and my Radiation Oncologist says we have probably avoided it altogether.
IMRT, Cyber and Gamma are all similar technology but pretty much just differently branded machines... with minor differences in which is better for various needs. IMRT is given over a few days (in my case 5 days, 15 min appts each day), Cyber is usually a one day visit, but you are in the machine for an hour or longer which would have tested my limits... and Gamma I am less familiar with, but many here have had it. I am pretty sure that Courtney has had Gamma on multiple brain mets with good results. Hopefully she will check in here. My Rads Onc here in Austin TX is amazing. He has Varian IMRT machines. I don't know how the size of the tumor affects the best choice of machine, as mine were all pretty small (so far 6 in total have been zapped with IMRT, the largest was 9mm). Kaiser Permanente in LA has IMRT/Varian machines... http://xnet.kp.org/scal/losangeles/s...radiation.html Google/ask around for recommendations of Radiation Oncologists, Cyber or Gamma centers, too. Ask your doctor if they can start you on Tykeb/Xeloda pretty quick. I got lucky and Tykerb/Xeloda shrunk my brain mets quite a bit and put them to sleep for about 18 months without any initial radiation (we MRIed every month for 3 months to be careful). Then 6 of them woke up and needed to be radiated, so we targeted them and poof they were gone. Haven't seen them since, and that has been almost 3 years now. |
Re: Help! Brain mets besides lung mets
|
Re: Help! Brain mets besides lung mets
Dear Karla,
I just read your post. I am so sorry to hear of your new diagnosis. I too live in the LA area. I know a woman who heads a non-profit organization for cancer patients and she knows all the top doctors and has fought cancer herself three times. She has personal contact with these great doctors. I am so grateful for the doctors I have thanks to her. I have seen doctors at USC, Cedar's Sinai and St. John's in Santa Monica. I highly recommend to you Dr. Paul Song for your radiation. I had radiation in 2008 and also this year. He has facilities in West Hills, at St. John's in Santa Monica, and another in the Reseda area. I have had treatment at the first two. I like the technicians and facility best in West Hills. If you ask to speak to him and they do not do gamma knife (I don't know if they do or not) he will tell you where to go. I do know his facility has the most updated machines in the world. His phone number in West Hills is (818) 884-1683. I wish you the best, Elizabeth |
Re: Help! Brain mets besides lung mets
This link is to another current thread where Courtney has been talking about her Gammaknife treatments. She lives in San Francisco and has had 19 (!!) treated with Gammaknife... please read it. It might hold many answers for you!
http://her2support.org/vbulletin/showthread.php?t=48241 You can also send her a private message and see where she goes in San Fran for Gammaknife treatment! Best wishes... |
Re: Help! Brain mets besides lung mets
Courtney is treated by Dr Penny Sneed at USFC. Dr Sneed is from Stanford and is very aggressive using focalized treatment.
I have had 11 lesions treated with Cyberknife. The first "batch" was 8 in 09/08 and in 06/09 three more showed up and were cybered. Wishing you the best info and treatment options as you work your way through this. Darlene |
Re: Help! Brain mets besides lung mets
Thanks everyone for your support, prayers, and information, they are very helpful. Thanks for sharing your experiences as well, they are very encouraging and give me hope. You guys are awsome, God bless you all.
Yesterday I had a great time with my family and friends, I hope you did too. I totally blocked this news from my mind, and it worked.Today reality kicked in, and I'm putting my fighting gloves to get ready for this big fight. Today I'm dizzy, but no pain, I have been dizzy for a few days now. Does the steroid help the dizziness too, or it is for pain and swelling? I haven't taken it yet. Does anybody have experience with Temador? Again, thanks so much for your help, I will keep you all updated. Love, KarlaV. Grace, I'm so sorry you are going through this again. I hope the gamma knife will make these mets disappear for good. Sending healing prayers. Brenda, thank you for all the info. I have been on Herceptin/Tykerb for about a year now. I had Tykerb/Xeloda last year, and it did nothing for my lung mets. I wonder if it would work for the brain. Elizabeth, thanks for Dr. Song's number. Could you PM me the name and phone number of this person who knows top doctors? |
Re: Help! Brain mets besides lung mets
Kavy, I don't have specific recommendations for you, but I do remember something that my onc said to me when she recommended that I get a 2nd opinion. She said that my insurance (kaiser) will only pay for treatment at their own facilities. However, if I go for a second opinion, and that 2nd opinion recommends a treatment that kaiser cannot offer me, they must pay for an outside provider to provide it for me. I don't know if this will help any in your case, but I noticed you said that your ins. company did not have the radiation type you wanted and the doc you went to does not accept any insurances. Maybe you can ask your insurance about what I was told???
|
Re: Help! Brain mets besides lung mets
My daughter had 2 rounds of Temodar along with Avastin for her brain mets. Unfortunately, she is experiencing progression on that treatment plan so they are now putting her on Tykerb. We are pushing for Tykerb AND Xeloda but so far her onc won't do the Xeloda unless the liver mets progress. A second opinion we sought out agreed with his. She tolerated Temodar fairly well and had nausea and fatigue with it. However she only did 2 rounds of 5 days each and then was off of it for 23 days each time, but had Avastin every other week via IV. My best to you
Joyce |
Re: Help! Brain mets besides lung mets
Karla,
Brenda who has a lot of experience with brain mets pretty much said it all. But I'd like to add that my single 2.6 cm tumor was treated with surgery and then Varian IMRT. I had five dosages to the tumor bed about six weeks after surgery. My tumor was considered medium-sized, and the doctors said I would get better control with surgery followed by radiation. I was very disappointed because I was hoping for just one radiation shot to the tumor. I had the surgery in October 2008 which was followed by radiation in December and all has been well since. However, because you have more than one tumor, and since I never had radiation-only treatment, I'm not sure what the size limitation is for such single-shot radiation to a tumor. Also, except after my brain surgery, I was not given a steroid during radiation. The radiation oncologist suggested that I try radiation without a steroid, and it worked okay. You should probably be in a larger facility if you use IMRT, as this radiation equipment is much more complicated than Gamma Knife, and requires constant monitoring of the treatment program by doctors who do it a lot. Good luck. Joan |
Re: Help! Brain mets besides lung mets
Hi, everone,
Thank you for your help. Here is a fast update. I'm trying to do Gamma knife, probably at Cidars Cinai ( any experience there?), but they suggested surgery to remove the cerebellum tumor that is 2.8cm, and can cause me problems if I do not have it removed first. Surgery probably with Dr. John S. Yu (have any of you heard about him?). One radiation oncologist there said if I did not do surgery I woul playing a russian rullet, and that if it was his brain, he would have surgery. Wow, brain surgery!!!1Went for an appointment at UCLA for SRS ( Novalis), I did not feel impressed by the radiation oncologist over there, and that got me very frustrated. Today I got a call from Stanford in Palo Alto, Cyberknife place, and they want to see my CD record to see if I really qualify for the procedure, apparently I do. But that is the question, all this burning in the cerebellum, either Gamma Knife, Novalis, Cyberknife without removal of the tumor might create scar tissue. How often this happen? do you know anybody who had problems later on for not having the tumor removed first? Thank you so much for your help. I will keep you all updated. God bless you. KarlaV. |
Re: Help! Brain mets besides lung mets
Dear kavy -
Glad you are persuing a radio-surgery of some kind rather than WBR. Don't let them scare you with that "Russian roulette" talk. This is breast cancer mets and are in treatable areas. I had 2 brain area tumors. The largest was 3cm in my left cerebellum. I had Gamma Knife for both. They did talk to me about "splitting the baby" (having a surgeon remove that one and hitting the other small one with GK). They left final decision to me and I said Gamma them both. I did not care if they are trying to spread around the "work" - I just wanted it done and over. I did need the steroid as the cerebellar tumor was causing inflammation which was impinging on a ventrical. (Yes, brains have ventricals as well as hearts.) Let them treat ALL the tumors with whatever form of radiosurgery you can. The best thing about Gamma Knife is that it is all done in one day, with one treatment to each area. No going back day after day. I felt just fine the next day and was out driving and living normally. SCAR TISSUE - YES, I have it. But it does not cause me any symptoms or side effects. My surgeon actually called the cerebellum "a redundant part of the brain." It does serve some functions, but not the main ones that are in higher and deeper centers. Praying that a good decision that you are comfortable with will appear. I have heard good things about Sinai from members here in the past. |
Re: Help! Brain mets besides lung mets
My daughter will probably be having Novalis LINAC. Short for Linear Accelerator. It is in the Gamma, Cyber Knife family of SRS Stereostatic Radio Surgery. They say they can kill her tumors w/it and I pray they are right! I hope you find the right procedure for yourself very soon. I know all this is so confusing but hang in there and it'll become clear what you want to do. My best to you.
Joyce |
Re: Help! Brain mets besides lung mets
Just sending along good wishes for a speedy resolution. Sorry I do not have any advice on this, but you certainly have received many helpful comments from our Her2 experts. May God Bless. Ceesun
|
Re: Help! Brain mets besides lung mets
Well we now find out that they don't want to do the SRS LINAC procedure until they see how the tumors react to the Tykerb and he doesn't believe all 7 should be done! This is AFTER the one dr. (the SRS surgeon himself) told us he could do all 7 tumors in two sessions and that all should be fine!! I just don't understand how he could've said that and then his team member tells us differently. Right now we are so disappointed and confused, not to mention angry! Any suggestions? My best to you all
Joyce |
Re: Help! Brain mets besides lung mets
OK, I understand how confusing this would be... but if it helps, a similar plan is how I approached it... successfully for 18 months. I did Tykerb/Xeloda first with very close monitoring. (MRI at month one, then when that one looked good, an MRI 2 months later, then when that one showed shrinkage, an MRI 3 months later showing that they were no longer active, and then continued every 3 months for 18 months... until my TMs started to rise and my 3 month MRIs showed 5 of them had woken up again). I started with 7 mets of varying size between punctate size and 9mm.
At the point that 5 of them woke up and showed activity on MRI, we went in and did sterotactic IMRT on them and zapped them into oblivion. A year later, one more woke up, and we zapped it. I switched from Tykerb/Xeloda to Tykerb/Herceptin. Just make sure you push for the Xeloda w/ the Tykerb if they want you to try this plan, and make absolutely certain that they MRI/monitor her brain extremely closely at the 1 month interval, until it shows positive results from the Tykerb/Xeloda, and then cautiously move to 2 or 3 month MRIs. |
Re: Help! Brain mets besides lung mets
Brenda - so you feel the Xeloda is the secret to success in the Tykerb/Xeloda combo rather than the Tykerb alone? My best to you
Joyce |
Re: Help! Brain mets besides lung mets
Not necessarily, but I think it's the best starting point with Tykerb. I don't know that it's the key, and I am not qualified to say, but I know that Tykerb was approved in combo with Xeloda first, so that's what years of trials yielded as a very synergistic combination... and Xeloda works to keep the rest of the body in check as well.
|
Re: Help! Brain mets besides lung mets
I know that Tykerb was approved in combo with Xeloda for brain mets but I can't seem to find out WHY it had to be in combo w/Xeloda. Does anyone here know? Is it because the Xeloda seems to boost the Tykerb to make the Tykerb work better on the brain or is it because it is metastatic disease and they wanted something to work on both the body and the brain? My best to you all
Joyce |
Re: Help! Brain mets besides lung mets
Karla,
Dr. Yu has a very impressive resume according to the information provided by the hospital. http://www.cedars-sinai.edu/Bios---P...n-S-Yu-MD.aspx Novalis TX is a new technology of SRS and is more precise and focused (with less side effect) than either Cyberknife or Gammaknife. Joyce, Tykerb has always been given along with Xeloda. There are some trials going on right now on giving Tykerb without Xeloda (such as the one combining Herceptin and Tykerb) But physicians are not going to change the protocol until getting those trial results confirmed. |
Re: Help! Brain mets besides lung mets
Hi Jackie - My daughter's onc has just prescribed Tykerb WITHOUT Xeloda! That's one reason I was asking the question b/c I too have always read Tykerb was prescribed WITH Xeloda, but I can't find out WHY and if Tykerb by itself will work on brain mets such as my daughter has. I hate to see her waste time on Tykerb alone if it isn't going to work without Xeloda! It such a scary situation. My best to you
Joyce |
Re: Help! Brain mets besides lung mets
Kavy -
Sorry I am a bit behind reading on the site and just saw this. I am hoping you are doing okay --- haven't seen an update for what you are doing for sure - only questions on the doctors on the proceedures .... When you can give us an update. Thanks - and hang in there! Karen |
Re: Help! Brain mets besides lung mets
Hi, everyone,
Sorry for taking so long to update. I got a call from Stanford, and they said i have to remove the tumor before I do Cyberknife. What a disapointment. I saw a neurosurgeon yesterday, and he said he will remove both tumors (cerebellum and occiptal lobe), so I will have a craniotomy next week, I don't know the date yet, then Gamma Knife a few weeks later to zap the tumor beds and another small tumor. I'm still getting used to the idea. I know that Joan, Barbara, Stephen and Christine know how I feel. Any advices, suggestions for before or after the surgery? Thanks again for your help. I feel blessed to be part of this beautiful family. Joyce, I'm sorry your daughter couldn't get Xeloda with Tykerb. I can't believe her doctor didn't give to her. Can't you change oncologists? What about Temador? Praying that she gets the right treatment to help her. Grace, how are you doing after the Gamma Knife? Love to all, Karla V. |
Re: Help! Brain mets besides lung mets
Sorry Carla -
But I do NOT understand why they have to remove those tumors BEFORE they do Gamma Knife. I had ONLY Gamma Knife to the tumors. My tumor in my cerebellum was 3 cm, so size was not an issue here. CourtneyL has had something like 18 spots treated with targeted radio surgery now. Never any open surgery. It would be nice to have a more complete answer as to why you can't just have the Gamma Knife. This is much less disturbing to the rest of your brain, and easier on you altogether! Brenda has also only treated the spots without any open surgery. What is different about your tumors? P.S. A friend of mine here just had cyberknife on 4 spots in her brain and that is the end of it. No GK to tumor bed or whatever. |
Re: Help! Brain mets besides lung mets
Karla,
I've had a brain tumor surgery in 1990 that took 23 hours and three 'shots' of Gamma-knife radiosurgery in 2001, so I'm generally not worried too much about surgeries involving the brain. It will take some time to recover, but recover you will. However, a surgery involving the cerebellum can be risky sometimes because the area is the 'life center' responsible for regulating our breathing and other 'vital' functions. Your neurosurgeon sounded like an experienced veteran in this particular area. I remember how anxious I was waiting for my 'craniotomy'. I hope you have plenty of support at home. Remember to get plenty of rest (take a deep breath whenever you are feeling anxious) and eat well. Sending you good vibes. |
Re: Help! Brain mets besides lung mets
Hi Karla - Lots of people here are pulling for you so hang in there. I'm sure things will work out. As to my daughter not getting the Xeloda w/the tykerb - she was denied the Tykerb b/c it wasn't written with the Xeloda!! (I had to laugh to myself on this one.) So now the onc is going to write it with the Xeloda (can you imagine?). She did try Temodar previously with Avastin but it didn't work unfortunately. If the Tykerb doesn't work then she will have SRS. I pray the Tykerb works so that we have another option for the future. Let us know how everything turns out for you. My best to you
Joyce |
Re: Help! Brain mets besides lung mets
Hi Karla,
I understand how anxious you are and I would be the same. However, I read so many good stories about craniotomy on this and another site; plus, I know a lady who had craniotomy on Jan. 11 and she was up and walking by Jan. 12. She recovered so well and were sent home right after post-surgery MRI. Joyce, I am happy to know your daughter's doctor finally agreed to give her X/T. Similarly, my doctor reluctants to give me Tykerb. I will ask him again when I see him on 26th. My Gamma knife went well. I updated my info on my old thread. My rad onc said no steroid needed; so, I am taking some Bosewalli just in case. I have been feeling good and all three tumors were treated. Grace |
Re: Help! Brain mets besides lung mets
Grace that's great! Glad the SRS went well. Hope you can get the Tykerb too! My best to you
Joyce |
Re: Help! Brain mets besides lung mets
Hi Joyce... so glad the doc is being forced to write the Tykerb w/ Xeloda. I talked to an onc today who I really respect and he was concerned about the way I described your daughter's situation... he said there is a synergy in the combo that is necessary for the best possible result.
Very good news Grace... please keep us posted Karla! |
Re: Help! Brain mets besides lung mets
Brenda - Thanks for doing that. What I'm tryng figure out is if they recommend the Tykerb/Xeloda combo because it works good on the brain or b/c it works good on the body mets? Supposedly tykerb works on the brain but I see no indication that Xeloda does. Anyone know? My best to you
Joyce |
Re: Help! Brain mets besides lung mets
I think it is supposed to be good for brain in combination with Tykerb. Rich posted a really good review article about brain mets last year which has a section on chemos as well as radiation and surgery. I think I found it when I searched "whole brain radiation" but I think "brain metastases" will bring it up too. Hope the combination works for your daughter.
Trish |
Re: Help! Brain mets besides lung mets
RICH if you see this post could you send me the link to what Trish is referring to? Thanks! Trish thank you too. My best to you
Joyce |
Re: Help! Brain mets besides lung mets
Joyce,
I think this might be the one Trish's talking about: http://her2support.org/vbulletin/sho...asis+radiation |
Re: Help! Brain mets besides lung mets
Miscellaneous info I have been able to drum up:
http://cpharm.vetmed.vt.edu/VM9096/handout.htm under anti-metabolites (fluorouracil is the infusion/Xeloda is the pill... they are the same drug) ...................................... In chemistry, weights are measured, not in kilograms, but in Daltons. In fact, it turns out that only molecules that have a molecular weight smaller than 500 Daltons can reliably get through the Blood Brain Barrier. Now a molecular weight of 500 Daltons is not very big. Water has a molecular weight of 18 Daltons, while insulin is up around 5,000 Daltons. Viruses (with molecular weights in the millions and billions) are a heck of a lot bigger than this, and bacteria are much bigger again. So in general it's rare for big chemicals, viruses and bacteria to be able to cross the Blood Brain Barrier and get into the brain. xeloda (Capecitabine) molecular weight - 359.35 ............................................. http://professional.cancerconsultant....aspx?id=41058 Study participants had previously been treated with Herceptin, cranial radiotherapy, and Tykerb monotherapy. All patients in the current analysis received treatment with Tykerb plus Xeloda after experiencing cancer progression on Tykerb monotherapy.
|
Re: Help! Brain mets besides lung mets
Jackie and Brenda - Thank you for the info! My best to you
Joyce |
| All times are GMT -7. The time now is 05:51 AM. |
Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021