Brain Mets Sisters
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Tre good for you.
Dani has been doing MRI this past year, every 6 to 8 weeks. And yes, it showed edema after the last brain rads, RO is gonna watch it, but nothing to be done right now. I don't know that there is a so called sign, maybe the scans will be best proof.
PET/CT was of course quite mixed bag. Some lesions overall stayed the same, so to my surprise Onco is keeping her on the trial. We are comfortable with that, although anxious, due to all new things or larger. But, we are willing to give it one more shot. Now my concern is she is due to have the brain mri, it's gonna be 8 weeks, but I don't want a/t to show that might alarm this trial docs, and also she was planning to take some time off with the kids, so again if you play stupid it's stupid, if you check it out and stuff shows than she ruins her plans again. I so would like to just not talk about it with her for a few days, but it's always something. So it goes. Let you know what she decides.
Hugs to all.
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tre4, wonderful news about your mom and we are neighbors! Thank you for your nice reach out.
MomATT, my heart goes out to you and the burden you take on so Dani doesn't need to know. I'm hoping for improvement everywhere for her!
My mom has had 6 days straight of a ten day cycle of brain rads and learned she will be starting her first chemo... Doxyl in a few weeks. She is not looking forward to losing her hair but I am going to help with the cost of the best possible wig.
As for me, 3 months until my preventative double mascectemy. Oh man.
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Thank you mara.
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Oy. Some tough news around these parts. I'm so sorry to see new fold here. Hugs.
This past Monday was the 2-year anniversary of my craniotomy, after which I was told that as a high-function breast cancer. Rain mets patient that I had half a chance of living longer than two years. Still here.
Then I had leptomeningeal spread twice after that -- that is more in the range of 3-6 months until death -- but then I'm still here 19 months later.
I had a brain MRI this week, just regular monitoring, and it's still stable. A temporal lobe lesion I had zapped in November is actually gone.
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If you have LM you need to get a port in your head.
For you newbies, I've written much of my story here:
http://her2support.org/vbulletin/showthread.php?t=...
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Good morning ladies...I am new to this discussion board but not this web site. Experienced headaches and nausea last week...finally went to ER. MRI showed 8 mets to cerebellum. I started WBR this past Thursday, so only two treatments so far, will do 14 then another scan. Was due to start a new trial August 7 for a new vaccine that was created from the tumor they removed from my lung nodule....Trial on hold to see how I respond to WBR. Physically if you didn't know me you wouldn't even know I have cancer....still living life to fullest. I know I will have questions for you.
Hugs to you all!
Julie
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Julie, I recognize you from some of the other forums I follow though cannot post in. I am so sorry you are joining us here, but glad you did. If you have any questions on what to expect or advice needed on recovery from WBR, I'm happy to help.
It's been almost a year since my craniotomy and 10 sessions of WBR and though the recovery was long, it has been worth it. Yielded good results so far, have another MRI to make sure the one spot left was part of my original tumour that could not be removed surgically. QOL is normal for me and enjoy hitting the gym. Please be sure to stick with this site or http://www.brainmetsbc.org/. One mistake I made when searching for WBR information is that I kept hitting the glioblastoma forums which would not immediately apply to us and usually was a pretty bleak place. If you were in good shape cognitively, then you should look to have good results afterword with possibly some short term memory issue. Even that usually improves over time. It would not be much different than chemo brain.
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Agness, so good to hear from you. LM is what I truly fear myself but am glad you have been able to treat it so well. Two years is amazing too for sure. So happy for you and your family as well.
Momatt, all I have are hugs for you and Dani.
Daughter Love, hope the best for the surgery and good wishes to your mom as well while she undergoes the radiation.
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Agness thanks so much for sharing, it gives hope to all. Keep telling us good stuff.
Julie it's so interesting about the vaccine. What do they expect with it? Are you at a big Center, I am curious where they would come up with something avant garde like this, I've read about it, but never had contact with someone that actually has this prospect. And if it does work would take care of the other mets? Read up on Mara's experience with WBR. Good luck for you.
DaughterL it won't be easy, supporting mom and going through the mastectomy, hope you have support. Did you test positive for genes? What made you think about the mastectomy? Interestingly, Dani's surgeon (in her case after diagnosed) discouraged mastectomy years back, saying it's not proven that mastectomy really keeps BC away, he was more enthusiastic about hysteo/oophorectomy. And that's what she did. In her situation, i am not sure what difference it made.
Dani has now a protruding something below her eyebrow, she's freaking out. But RO prefers to wait for end of the month to get the brain MRI, but RO is going away, so she said she could wait for when she's back. More anxiety, i don't even know what's like to live w/t anxiety.
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Momall,
I've had a little swelling on my left eye brow (opposite side from the lesion). Mine is from the steroid.
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Kaption hers is really like a protrusion not a swelling. So worried.
Agness i spent a long while reading your story. First of all it's fantastic, how you put it all down. To even have the head (pardon the pun
) for it! It's so informational. Kudos to you for being so proactive, active. Now, I feel that i'm not doing enough. I feel RO is always trying to protect Dani so she is very conservative. Dani has multiple calvarial lesions some go into chanels that they don't belong, she has 2 in the cerebelum, one was radiated the other they are watching. With every scan, someone else reads it, so it's hard to get 2 scans that they are actually comparing the same issues. For instance the last scan did not even mention the cerebelum, how is that possible? And so on. Now she feels that protrusion below the eyebrow but Onco wants to wait till the end of the month for the MRI. it will be the longest she's gone w/t scans. Also she is not seeing neuro onco at this time, the one she did go, he wanted to do WBR a yr ago, and RO (she is chief from the Cancer Center) said oh no it's not necessary, because if you do WBR you can't go back to those areas in case things happen, she has mandibular mets, sphenoid, in the C's area and T1 is much compression, they are watching it. And of course a lot more. Just so nervous to wait till the end of the month.
Great work on that writing, and thank you for letting us know.
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And Ann reading what you wrote about HER2, D's new liver biopsy showed she is HER2+ still, but RO never speaks of targeting with a different tx the brain or all the skull mets, RO just leaves it to MO, even my question about this new issue, she was like ask MO, and I emailed back to her, MO defers to you so YOU gotta make the decision. What does the MO know about brain mets, nada. It's so frustrating. Like you said over and over, THEY don't know anything, i hate to tell you it's just sheer luck!! They throw all the sht in the hopes that something hits, there is no real facts.
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Agness- Thank you for all the information on your experience with this to date. New here and this provides some great complementary approaches while waiting on doctors.
Mom att- sending hugs to you and Dani! This doesn't get easier.
Has anyone had their neuro onc order a spinal tap as a first test after the MRI?
Just curious.
Sending good thoughts to all!
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hello every one....i had my first MRI since brain surgery and saw my doc today.....nothing to be seen at the tumor site that was removed and i still have a tumor from back in 2015 that is stable and now looks like a deflated ball instead of big and round....doc kept saying "can you believe that was over 2 years ago" and "your doing so good" ....none of my other 6 tumors are showing up anymore....so good news there although i will have to scan again in 7 weeks just to be safe i guess.....CT scan on friday to see how the rest of me is responding to chemo and this parp-inhibitor...
iwrite, i've never had a spinal tap even though my bone mets are in my spine....maybe there is useful info in the fluid but i dont envy you that test....good luck and try to be brave, let us know what they are looking for and what they find...i'm clueless
big hugs!!!
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iwrite,
I asked about the fluid tap test since they are positive about which layer my lesion is in. (That is a poorly constructed sentence, but it's 6:00am and I have my first Abraxane today- so forgive me! Lol)
Anyway, MO said, " not until you have more symptoms." I first read it's a very painful test, but later read it can be no big deal. May depend on where and how it's done. Let us know what happens.
(Hugs)
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Wonderful news Nan!!! I'm so happy for you.
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Great news, Nan!
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Nan it is truly wonderful. So happy for you.
Kathryn what I do know is if they suspect LM in the images, then they do the TAP test...let us know, take care
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Nan congrats that is great news
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Nan- Congrats on the good news!
Thank you all for the information on taps. It helps!The MO and Neuro Onc haven't said the words brain mets yet and we are already on to spinal tap. I sent my some questions since I was stunned at the appt. Will let you know how things go.
Sheesh...Cancer is like having a terrifying Stephen King character stop by every day :-/
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today I was told I have brain mets. Up to now I was the poster child for living with stage IV bc. I wa diagnosed 6 years ago and have been NED since completing treatment. I am scared out of my mind. I am supposed to begin rads tomorrow after meeting with the team to discuss my treatment plan. Any advice/positive thoughts/experiences would be very much appreciated
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Greetings to all you wonderful people! I am delighted to say I am still in the land of the living with all my mental faculties in place. Four weeks have flown by. We drove 4,335 miles between Northern Indiana and Eastern Oregon. We had a fantastic visit with my brother, which was the whole point of the trip. We also enjoyed the Tetons and Yellowstone. Two things on my wish list got covered.
Following are pictures of our trip and some wonderful things that happened right after we got home.
Supper with my brother's son and daughter. It was serendipitous that they were visiting at the same time.
My 80-year-old uncle and his wife drove 8 hours across Oregon just to see us. It was wonderful.
After spending two days visiting in prison, we headed off to the Tetons. We spent one night in a cabin. It was so nice to settle down and rest for a bit. We did our own food and just relaxed. My husband loves photography and is very good. He took three hours from dawn and just drove and took pictures to his heart's content. This is outside the cabin, about 2 miles south of Yellowstone.
Just a sample of his work.
Old Faithful obliged us during lunch.
My one walk was out to the Fountain Paint Pot and its friends. 8,000 feet and I didn't get on really well. I like breathing! The sun was really bright, hence the less than cheerful aspects.
i came home to another amazing experience. I've been working on my Master Guide for my Pathfinder Club. It's the highest level that can be reached and it takes a lot of reading and other time to get done. I haven't finished the material, but they Invested me anyway. It's such an honor.
After I got home that day, the best of all came to me. My sister, with some assistance from our mother, rapidly finished a quilt she had started for me. I saw all the bits and pieces before I left for Oregon. We were gone 10 days. The whole thing was completed by the time we got back!
This is with my mother, showing off the back a little. It is all quilted with notes and treble clefs. Because of the way it got done, it is completely reversible.
Myself, my sister, and our mother.
The title of the quilt is "The Music in Me". There couldn't be a more appropriate title for me.
Detail of quilt.
Just wanted you all to know how I'm doing and to encourage you. We take one day at a time, but we look ahead and set small goals of things we want to do. That's how we keep going in good health and cheerfulness. Blessings on each of you.
Raewyn
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raewyn,
So glad to hear from you and see your pics. It is wonderful to see your family and see them coming around you. Much love.
Iwillwinthisbattle, the diagnosis is knock you down to the ground and keep kicking while you're down painful but eventually you do dust yourself off and get up and walk. I am 11 months out and don't think of it every moment anymore and my normal stresses are taking over. But it is always there especially when wind blows along my scar under my hair. But hang in there it will get steadier. Much love to you too
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Hi All, just learned today I have lesions in the brain. This came as quite a shock. I had been so successful with treatment of my bone mets with no progression in six months. Started noticing left arm and leg weakness with loss of balance. Went to MO who ordered MRI of the brain. Results see several very small lesions on my brain. All of labs were good with TM being 15.1. I am in total shock. Does this mean imminent death. So scared. I have fought so hard to stay above water. Now I am drowning
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Wleeky, I am sorry you find yourself here, but I think you will find comfort in the knowledge of the ladies on this board. Brain lesions do not mean that the end is sight. It's just another speed bump on your journey. The initial days/weeks after a met discovery are the worst. Once you have a treatment plan in place, you'll feel some better. Ask your onc for a referral to a neuro oncologist. Then you can discuss treatment. Gammaknife is one option and Whole Brain Radiation (WBR) is another.
Much love to you.
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Thank you so much for your reply. I do agree it's just another bump and when they told me I had stage 4, didn't think I would make it then and here I am 3 yrs later. I have cyber knife in the Morning @ 8:30 am. I had already thought about neuro/onc. That's so much again for your support and Insight
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wleeky- I will think if you tomorrow.
I had gamma knife done on two brain lesions in Dec 2012. I am still NED in my brain since then. There is hope.-
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wlleeky there is many options out there, You should find out where the lesions are, how many etc...it makes a difference also. Did they discuss what treatment you are on? Would they do a Ct or PET/CT to see if there is spread anywhere else? People live and live well for a long time with these mets.
iwillwin...the same for you. How cray is that, two ladies with no progression and then bam.
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Raewyn-The trip looks wonderful and the time together means so much. Your husband's photo is amazing. Sending wishes for more rich family time in the days ahead!
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My wife has NED from the neck down since may 2016. Dec 2016 MRI finds 15 sub centimeter spots in her cerebellum. We have a successful gamma knive procedure. June 2017 they find 13 new sub centimeter spots spread out in her brain. There is a little discussion of leptominigeal disease but our rad doc doesn't think so. We discuss WBR but opt for gamma again, mostly becasue it's so tolerable. Our rad doc told us about using Xeloda plus Tykerb to slow down brain mets. We told our oncologist and at first he said there is no evidence that it works but then he decided to present her cas to a national tumor board he was attending last week. It looks like we are going to try it but we need to sit down and talk about the pros and cons. As you all say and we believe it 100% quality of life is the most important part. I do think it is contingent on the June 2017 gamma procedure being successful which we won't have the follow up MRI until the end of this month.
Have any of you heard of this combo being used for brain mets? Always interested in this communities thoughts.....thanks in advance!
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I can only speak for the radiation side of things, though am aware both xeloda and tykerb cross the blood-brain barrier as well. If they will gamma knife the spots, so much the better to leave undamaged tissue alone. I know that improves recovery time.
I will speak to WBR though. IF it is suggested she have that and she is in good cognitive shape and can walk, talk etc, WBR is a viable option as well. I received it almost a year ago and am not suffering any lingering ill effects. I already some memory issues LONG BEFORE the brain met from the chemo I received. Just wanted to add that remark in case they will not gamma knife that many. It should not be feared as I am still NED going on almost a year. I have really good quality of life as well. Gamma knife would have been my choice BUT in my case not an option due to being inflammatory breast cancer. Would have grown too fast to zap all the time.
In short, sounds like a good treatment plan and glad you are being offered gamma knife again. If you are not offered and she needs more work, WBR is an OK option, mostly just takes longer to recover from the fatigue. Physical activity and lots of protein can help with that as well. Best of luck to you both.
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