Brain Mets Sisters
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my wife have had a progression this week and lessons in lever have increased & around 6 to 8 new lessons are found in brain with largest being 3.5 cm I have few queries 1)The RO suggest WBR ,should Igo for WBR OR GAMMA KNIFE। 2) DOES THIS PROGRESSION MEAN THAT. THIS IS BEGINNING OF HER END
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Many, so sorry to hear of your wife's progression. I would not view as the end as there can be many progressions we go to. Brain mets are scary but do not mean the end. There are differences in the type of tumour, location is important and whether lesions (tumours) can be taken out. I would recommend to hold onto hope unless the doctor says otherwise or your wife says she cannot endure treatment.
I will give my two cents but in the end you must hear the Dr as I cannot obviously make a direct recommendation.
If the RO offers gamma knife to the tumours then go for it. Not all RO's give this as an option but if they do no reason not to. I say this because it is possible to go in multiple times to zap lesions as they show and preserve brain tissue. There is still risk necrosis swelling etc that RO will go over. There are people who have had gamma knife many times and they are still doing well. They don't post often as they are out living life. Read back through this thread for angess' posts. She has so much information she has shared as well.
The WBR (I had this myself) is also an acceptable option. My experience with it was hair loss, fatigue for a couple of months after. I was ONLY offered WBR since my cancer is so aggressive and fast growing it was felt that gamma knife would just mean many more tumours. WBR is often seen as very aggressive and is feared. The thing to know with any brain treatment is that side effects, memory loss etc are possible. However, what is not said often enough when it comes to WBR is that the after effects also depend a lot on what the person is suffering. IE if your wife has her cognitive abilities, it should not be assumed she would lose them. Namenda is a good medication to ask about, can help reduce the risk short term memory loss that can occur IE where did I put my keys, where did I park my car. Writing it down helps if that is a problem. Once my tumour was surgically removed, (it was 8 cm, grew in about 6 months) and radiation given, burden on my brain was eased and I felt better. There are quite a few of us that have had WBR and done well after. A lot of people may not post often but we are still going.
If you are only offered WBR, it is a viable option, she'll need to rest alot and it can deliver decent results. If you are offered gamma knife, it is also a good option. If you don't like an option, seek a second opinion. Ask the doc the reasons for whatever is offered. If her tumours are fast growing, he might feel the aggressive approach is better to try to avoid a tumour growing somewhere that could cause permanent damage. Good luck.
Good luck with what is decided. As far as her liver, I would recommend this link https://community.breastcancer.org/forum/8/topics/809420?page=136#idx_4071
This is the liver mets thread and they would know more if you have questions about drugs as I do not have mets to my body. You may want to also fill out the profile that details what kind of BC she has ie ER/PR + or -ve and HER2 also what chemo/drugs she has had.
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Here is a link with some good info on wbr vs gamma . Pease don't read if you are afraid of STATS. I know now that I am not a statistic so I am no longer afraid
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many- I was diagnosed with mets in both my brain and liveries dec 2012. I am still here and as of my last scans NED. It is overwhelming to get the progression news we all understand. Just wanted to let you know that there are options and that your wife could do very well while in them.
I had gamma knife to my 2 brain lesions. I am on Xeloda for my liver met
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hi leftie, just want you to know that your post came at just the right time for me. Thank you
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Many,
Sorry to hear about your wifes progression. I doubt many Onc's would treat the 3.5cm lesion with Gamma Knife. 3 Cm is generally the limit. WBRT might be the best option. If there are any remaining lesions after this, they can then be picked up by SRS.
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This is the last paragraph of the gamma knife link I left earlier. Every doctor will have a different opinion and you do have to trust yours.
The aggressive management of brain metastases with SRS has supplanted radiation therapy in an effort to maintain patient quality of life in an era of advancing systemic cancer options. Death from brain progression is now rare. SRS for patients with one or many brain metastases provides a high rate of tumor control, a low risk of adverse effects, and does not delay systemic cancer management. SRS is now the standard of care for patients with newly diagnosed brain metastases.
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Hi, I officially joined your ranks about 2 weeks ago, but it took a bit of processing to deal with. I knew that my cancer had not been eradicated since the end of November, but my MO sent me for a brain MRI after my PET scan came back worse than anticipated. Bless her. I've got three tumors (two >2cm) and 3 lesions. That threw us for a loop. I met the RO last Tuesday and I'm delighted to say that I'm in good hands. The MO sent me in asking for WBRT, something that I was NOT happy about and didn't see why it should be after the reading I did. Apparently I wasn't so far off. The RO doesn't see any reason for me to go that route. I'm going in this week to prep for Cyberknife some time next week. My sister-in-law is highly supportive of this, as she viewed it as something that was very beneficial for her husband several years ago.
I didn't have any physical indication that there was anything wrong in my head until after the scan two weeks ago. Since then I've developed low level headaches. Yesterday and today I had a really violent throbbing in my left side for several minutes. First time, it started at the top of my head, working it's way down to my thigh, and literally nodding my head for me. We thought maybe the music playing in the car set me off, but can't prove it. This morning I had it again, but it started in the thigh and worked up to the head, shaking me sideways. Suddenly it all came to a stop, jumped to my ankle, then vanished. I was standing still, having a quiet conversation with someone. What a life!!
Thank you to all those who share their wisdom and experience on this thread. It's been really helpful.
Raewyn
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Glad to hear you were able to get Cyberknife. As to your symptoms, brain swelling can certainly cause issues or even if the lesions are growing and their location. I am glad to hear that you are getting it next week. Brain symptoms can be wacky for sure. You should feel almost immediately better. You may feel extra tired for a bit too, though not as bad as the WBR fatigue. Naps are great. Good luck, keep us posted.
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hello sweet metsters, I have the winter blues really bad
not sure if this is the right place but I would really love to read some stories from you guys. I think we all have a unique view of life now, so any story....something funny at the hospital, something dumb someone said, something you've accomplished ( or tried to) that either brought you great joy or the biggest laugh, how you manage to create your art (cooking,painting,sculpture,needlework,..etc), funny bumps on the road of travel or bucket lists, how you found out, an Angel you met along the way, funny stuff you're kids or grandkids have said about you or your condition/treatment ....the topic isn't important, I would just love to get to know you all better and hopefully learn a lot in the process.Keep shining bright
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Hey Nancy,
I'm sorry you have the blues.. I wanted to write to tell you that I reviewed the link you sent and it really brightened my day, thanks so much!
I don't have time to write a story for you, except to tell you that i'v recently joined a Fitbit community and was invited to a steps challenge.. my legs and feet are so tired and I could have won but my sister said to me at one point... "Can't your big sister be better than you at one sport"... so I took my watch / Fitbit off... I had met my goals so it was a real lesson to me anyway.
Seriously though, if you are a little lacking in motivation to move, find out about friends using the Fitbit and join their community.. it's great fun and support.. and I'm so motivated by numbers so its really got me moving since Christmas.
Have a great evening!
Maybe you are also happy about Green Bay's win? I know they'renot in Michigan but so close!!
Goodnight all and pleasant dreams.
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thanks jo, spoken like a true big sis
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Nan812, you asked for something to combat your winter blues. Here's what I did over the weekend to keep me going.
I am the director of a Pathfinder Club for kids in grades 5 - 12. Pathfinders is a church youth group that can be somewhat equated to Scouts for a comparison, except that everyone is one club and it has a strong religious focus at heart. There is an Adventurer Club for grades K - 4. Anyway. Back before I knew my cancer was on the rampage, our club planned a lock-in for the 14-15th of January at our church. It's too cold to go camping this time of year, so we are allowed to count that toward our camping nights for the year (6 needed). No one had ever done one, so we weren't sure how it would go. The object was to spend time together having fun and learning something new, including something allowing us to be of service to others. We go to church on Saturday, so that's why it happens Saturday night into Sunday.
There are 10 kids in my club - 9 boys and 1 girl, so we invited the 3rd and 4th grade girls from Adventurers to join us and keep our one girl company. We started out by earning the Pizza Making Honor. That means they actually had to make a pizza from scratch - raise the dough and all that. While the dough was raising, they learned about the history of pizza. For example, the Margherita pizza. "According to popular tradition, in 1889, 28 years after the unification of Italy, during a visit to Naples of Queen Margherita of Savoy, wife of King Umberto I, chef Raffaele Esposito of Pizzeria Brandi and his wife created a pizza resembling the colors of the Italian flag, red (tomato), white (mozzarella) and green (basil). They named it after the Queen - Pizza Margherita." It probably already existed before then. It just got named then.
They made lots of pizza. We fed 22 people all they could eat and we had lots of pizzas left. There will be lots of pizza at church potluck lunch next week. It took hours of work and they didn't finish eating until 8:30, but no one was bored and they had great fun punching their dough.
Following the feast, one of my staff, a former army sergeant, started teaching them basic first aid. It is a requirement of their course for the year. Every year they build on it, so by the time the reach high school, they are encouraged to become properly certified by the Red Cross. One of the reasons for this is that we encourage outdoor activities, and they need to know what to do if they are out in the wilderness and don't have someone else to look to for help immediately. They continued with instruction after breakfast on Sunday. I told him to use me as example number one, so if anything happens to me, they have some idea of how to respond.
We gathered for family bedtime worship at 10 o'clock. There were 12 kids who spent the night, plus 5 adults (including me). I have two kids and I love them, but I'm not a "kid" person. This has been an amazing journey for me as a leader and learning to care about the kids. I sat there on the floor with them in a big circle and read the story of the Good Samaritan. It fit with our theme of service to others and First Aid. They are all very normal kids, but good kids that I'm absolutely proud of. None of the weekend would have happened without my fantastic staff who could have picked up in a moment without me.
Sunday morning my deputy and I cooked breakfast for everyone. Then he organized them all and they cleaned the entire church in one hour. They finished up on First Aid, and went home happy with having spent the night with their friends.
My 17-year-old got to do all the driving since I got removed from driving duty, so I came home in chauffeured style, happy as a lark and utterly exhausted. To me, this is life and living it abundantly. Four years ago I started the club with no staff and 7 uncooperative teenagers. The next year I got 6 brand new 5th graders and started over completely. That was during my first bout with bc. They were very tolerant of their bald director. If they thought anything about it, they kindly didn't tell me. The growth in the club has never been because of me, but I am so privileged to be a part of it all. I am sorry I missed out as a kid, but that was my choice.
Nan812, I hope this cheered you up.
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rgc, Thank you! I was a pioneer girl at my church when I was a kid and boy did you just bring the memories flooding back. My mom fought her battle at that time and I'm sure your kids have some struggles of their own. You will probably never really know how much of a blessing you are for them at that tender age. Thanks for giving yourself and your precious time.
Keep shining bright
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Today is much more mundane, but extremely important. I am trying to get my tax return done before the radiation next week. I usually dive in for three undiluted days of number crunching and get my thrill for the year. This is a little harder because of headaches and fatigue. Still, I'm getting the buzz. Back in college, I took accounting and loved the numbers. So, we started a business and I painted shirts for living!! It kept my husband close to home with me and the boys, rather than having him wandering the world for months at a time programming airline reservation systems. I'm so glad we made that choice. We've had many precious years happily working together as a family. Granted, we would have had more money the other way, but I wouldn't trade it for anything!
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Kathryn wow, that's really terrific news. What does it mean BC cell test?
Mamaray what you talked about of course goes through everyone's mind. Totally legit. Actually, thanks for putting it out there.
Tre4 that sound odd. Of course I don't even know a thing about your mom's situation. But did she use up all arsenal of systemic treatments? Why not be able to zap some more, if as he says she is done, then what's the fear? What type of cancer does she have? Are you at a large cancer center? Did you get another opinion? For sure, when someone says that's it, you have only to gain by going for another opinion. You doing the right thing. Hope mom feels better soon.
Pajeg so interesting, I had the same nagging when I was reading that. MRI is one of the safest modalities…hmm. I hate to say it, but docs unless they have first hand experience with a loved one, will tell you, oh the anxiety to have to wait for results, and false positive, it only happens when we are talking about YOU, but if it would be them, they would run to get info. Just saying. Don't you worry about me doc. I am a big girl. This is the influence of Insurances also. I don't trust that line at all.
Ann thank you so much for such detailed information. The bottom line it seems it's you gotta get good people behind you. Period. Hope you really enjoyed the time with family. Good for you. Ann so great to read of the good news of your scans. It gives hope to everyone.
Nanita bicalutamide is that a common drug for brain mets?
GCiriani how is going with your wife? Hope for a good year ahead.
Nicknack so happy for you. Wonderful. Fingers crossed.
Hernie, very interesting links.thx.
Nancy thanks for sharing. Good for you.
Hi Loving yep, how are you doing? Hope you could get answer soon for your brother.
Nan sometimes just looking at the computer under something funny or seeing bloopers, the cute ones, could make you smile. And it might boost you up. A walk? It has helped me somewhat. The nights are the worst. And then in the AM things get better.
Mara it's so heartening to see you being the MAMA here, and guiding everyone. Stay well.
Josee a hello to you.
Happy new year everyone! Dani had some ocular issues, so she had rads to the sphenoid. It was not pleasant, but it's done. Pet/CT was done last week, and I guess we should be glad, I'd say it's stable. It's just that there is so much stuff there still. Almost all the bones, just not higher FDG. Liver exactly the same. And, radiologist added, still multiple bilateral rib fractures! Huh? No one said a/t about it on the last scan. I went back to look it's not there. So that's weird. And I am a bit hmm p sd off with Onco, because after I emailed her to ask what's the results, she sends back barely a whole sentence. It's all good! Yeah, really?? Well, she sees it as an improvement, I, we understand that's how it goes with protocol, but it was a bit disapointing, that the tumor burden did not go down.
MRI of the Brain, prob only in Febr, bcs my daughter is planning a short skiing trip with the kids, so nothing happening b4 that. (Although fractures ribs and skiing...but I don't have the heart to stop her)
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Mom, I am so glad to see you again. I have missed you. Thank you for asking after all of us. I appreciate the way you check on our welfare when you do post.
Glad to hear that Dani is basically stable. I understand with all that was found in the scan why it may not seem like much of an improvement. If the onc is happy, I think you can breathe a little easier. I can understand concern re skiing and bone mets, especially with fractures. I can also see why you would not want to stop her. She goes through so much, fun with the family helps take so much pressure off. I hope she enjoys the trip. Keep us posted on her brain results.
I myself will be getting scanned between feb/march myself, CT to make sure my treatment is working from the neck down. I also asked my MO to arrange an MRI of my brain. Though I have no issues going on, I have not had a followup since I finished WBR in September. She agreed so that should be coming up as well. Fingers crossed. I feel good on the Herceptin/Perjeta combo. I am able to eat and exercise and function a lot closer to normal which is nice. Memory from the WBR is not impaired. Things are going well at the moment. I did make a resolution of no surgery for 2017 since 2015 and 2016 had major surgeries. We'll see how that works out.
Hope everyone else is doing well.
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Thanks all for the comments. Wish my brother luck today with his CT scan!
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Wishing him the best.
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Thank you leftfootforward. We got the results: No brain or skull abnormality! It showed some "sclerotic appearance" of the left jawbone. I'm not sure if that means there is metastasis to the jawbone. But we are thankful for no brain abnormality. Since this is just a CT, we are waiting on radiation oncology to see if an MRI is needed at this point.
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Glad to hear your brother's CT shows nothing in the brain. Hoping MRI not needed but if so, hope it does not show anything. Good luck.
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my wife had 4th session of WBR & today she had focal seizures in wrist which goes when she is given DEXA-4 .what is the solution? Do we need to increase Dexa
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Possibly since WBR increases inflammation. If this was an issue for her pre WBR then she may need a steroid increase. Either way it definitely should be reported to her dr. Good luck to her and you.
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she had first focal wrist seizure on the eve before starting wbr .i would like to know if she can be started on Boswelia serrated while undergoing WBR AND continuing even after WB
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Many, call your wife's doctor and ask about Boswelia. My neuro onc started me on it right after my craniotomy. I didn't have WBR, though, just GammaKnife to the surgical bed. I've continued to take Boswelia since then because I have found it be helpful with general inflammation and joint pain from my other meds.
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my wife had 5th session of WBR out of 12 and is experiencing heavy fatigue and needs my support to even get up from the bed .is this type of fatigue normal during WBR
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I got my call on Friday! I'm in for CyberKnife tomorrow, Wednesday and Friday this week. It's time, as symptoms have definitely been creeping up on me. My sister-in-law says to drink lots of watermelon juice. It's supposed to be very cooling and help with any after-effects of the radiation. It's a good Chinese remedy. She should know something about it since her husband went through it. It can't hurt, and anything that helps is welcome.
Watermelon in Indiana in January?? I saw some in the store the other day, so there's hope. DH is going for some today.
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Many, it's a tough go with WBR while it's going on, recovery is slow, but there is hope. Mara went through it not long ago and Josee. They will respond to you.
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Many, fatigue definitely is part of WBR but I would ask the doctor about having to help her out of bed. Unless this was part of her symptoms before WBR, she should not have this much trouble getting out of bed. WBR does not usually cause that much of a problem for people to get around. Please mention to your doc next appointment to make sure not any other causes. Keep us posted.
My fatigue did last a LONG time after WBR, but I was ambulatory. I could look after myself re bath, getting out of bed, moving around. I did not do extra exercise or go out much until after a couple of months. I did spend a lot of time sleeping and not much appetite.
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rgc, glad to hear you have your cyberknife. You should find an almost immediate relief from symptoms. Keep us posted.
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