Brain Mets Sisters
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Hello Brain Mets Sisters,
I admire your approach to this dx. The positive outlook and help for each other says a lot about those who are here. The treatments and SEs are quite a journey from what I have read.
Just got a call from my neuro-oncologist indicating a shadow along a cranial nerve showing up in an MRI. I've had some weird crawling sensations, quick stabbing sensations and balance issues. I know it's early and ILC doesn't present with solid tumors. Has anyone had a similar experience. There is very little available from Dr. Google from what I can tell. I'll go back through this thread to learn more.
Hi Mom ATT - Hope Dani is able to overcome the numb arm! She has had more than enough!
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Sorry to see you here lwrite.
Brain mets symptoms are varied but can be subtle. Your symptoms are ones that should be checked out being Stage 4. That is NOT to automatically say you have mets. The balance issues, skin sensations may be benign ie vertigo, drugs you have been on etc. I am sure neuro onc is following up as we do have to worry about the brain too.
I hope that you get answers soon. Keep us posted whether benign or not. Be careful looking up stuff, brain mets online can be scary ie survival, treatments etc. Like with Stage 4, treatment and drugs have come a long way and our survival has improved a lot. Hugs to you.
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Hi all,
Not too much to report though we have started backing off of treatment a bit. Instead of IT treatment weekly it's going to be every other week, IT Herceptin (100mg) and IT Topotecan. I also talked to my neurology-onc today and we are stopping Avastin. Nothing has stopped working g and it will still be in my system for another week or two but my body is starting to react to treatment and so since we didn't see progression in December we are going to follow my body. My neuro-onc too knows that there are no double-blind studies to guide us, we are just using the empirical method mostly.
I'm a little excited but also nervous. My next scan isn't for another 2-4 weeks. Fingers crossed that my brain lesions are gone.
-Ann
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JoJoTO - I've got HER2+/HR- leptomeningeal disease. There is a non-standard treatment protocol that is working -- the fact that I'm here posting this to you is evidence of that.
Check out this article:
"Magic happened!" A husband tells the story of his wife's success with a treatment for HER2+ leptomeningeal and brain metastases
http://www.brainmetsbc.org/en/content/magic-happen...
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Ann, we are also rooting for no lesions. Good luck! 😁
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Ann, we are also rooting for no lesions. Good luck! 😁
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hi Ann!
Good luck on your scans, but most of all I'm very excited to have read your story... it is late here and i'v just finished my 2nd of 5 WBR so I am getting a little tired right at this time of night..
I'm going to review what you sent in detail tomorrow and bring my summary for my radiation onc to pass on to my medical onc..
Thank you so much for giving me some hope.. I had even started looking at the Rick Simpson cannibis oil cure that i'v heard of four people going into remission.. but all different cancers..
Regardless, I will work hard to understand all that you speak about in your story and in the link provided tomorrw
Thank you so much! I really really thank you!
JoJo
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Good luck Ann!
I had an appointment with my MO last week. I mentioned the ringing in my ears that started over a few months ago and has gotten progressively worse. I've had ringing before (pre-cancer) that was work related. I did read that it could be a SE of Arimidex. My MO wants me seen by an ENT to rule out hearing issues. My next brain scan is on March 13th. I see the ENT this Friday. Hopefully, I will get some answers and find out it's not related to any progression. Tumor markers have always been reliable for me and they remain low at 16.
I plan to further discuss this with my neuro onc in March too.
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I wanted to let this thread know that my wife passed Sunday morning, 2/12/17. Her obit is here and a nice video put together by our daughter is here.
For the survival statistics, she was diagnosed with brain mets on November 18, 2015, she received WBR, and two different kinds of chemo (more details below in the signature). She was professionally active as a marriage and family therapist until two weeks ago. To be able to work and positively affect the lives of others, almost till the end, gave her a significant quality of life.
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much love to you and your family Gcirani. Thank you for letting us know. And thank you for sharing your stiry
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I want to give you my sincere condolences and let you know I'm sending big love right now too. The video demonstrates what looked to be a full life with many people around her... I hold all of your family with deep respect during this difficult time.
With love,
Joanne (JoJo
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I also want to say how sorry I am to hear this. My thoughts go out to you and your family. I am also glad she was able to keep helping others, glad that it did make her happy.
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CCirani
My deepest condolences on the loss of your beautiful wife. You daughter put together a heck of a tribute. May Debra rest in peace. . Maureen
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Much love to you and your family, Gcirani. I'm so terribly sorry to hear of your wife's passing.
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Gcirani, Sending my deepest sympathies to you and your family with your wife's passing. So good to hear that she was able to continue living and doing what she loved. I'm sure that meant a lot to her. Thank you for letting us know.
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I am so sorry to hear that gcirani. Much love to you a and your daughter
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Gcirani so sad to hear of your wife's passing. I don't think we realized it was so eminent. You demonstrated so much love and warmth towards her, it's beyond words. the tribute, aww so sweet, such a life. You've got these wonderful memories. You tried what you could, she was so special, she lived a full life. Take good care and thank you for letting us know.
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Gciriani, my deepest sympathies to you and your daughter at this time. Thank you for sharing the tribute video of your wife. What a beautiful lady and such a full life. I will keep you and your family in prayer at this time.
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Susan someone just mentioned that site to me, I thought I recognized your name when I clicked on it. The poem. Wow so deep. And you breathed so much life into it. Thanks so much for sharing such warmth. The thing with Wisdo, I didn't get, they don't have convo like in this site right? It's more like tidbits?
Hopeful34 there is a long way to go. There are many options and radiation. So don't see yourself as in a limited situation. And I must say, a 2nd opinion could be very helpful.
Becs you look awesome, you really made me laugh with the humor of finding your man! A girl is gotta do what a girl is gotta do. Keep at it. Sorry they found that lesion, but great that they are taking care of it.
Jojo hope to hear good news soon.
Kathryn wow that must have really scared you.
Ann good luck on your scans.
Lilon you are absolutely right how one has to be a on top of their care. It's a full time job. I am also there for my daughter, she is very young a mother of 2 little children. It's been insane. And it's a constant researching and making sure meds are correct and scans are done and are correct.
Aproppos, it's been a messy few weeks with Dani. Re: that numbness in the arm, so after MRI, report came back that it is a herniated disk protrusion, so Onco sent her to see a Neuro that would do Kyphoplasty, so she tought. He was a bit bored, because he said he cannot do Kypholasty for her, and told her to go see a Neurosurgeon to operate, do Fusion.
So we kinda freaked out, and I asked him can't we possible radiate it, he said no, but we begged him to present it to RO and let her decide.
We walked over to RO, she is across the street, and NP gave her to read the report, and RO said surgery.
I was devastated, because it's not just the surgery, but it's the effects what such surgery would have in her day to day, which she is managing on her own.
So we were lucky and were directed for a 2nd opinion to an RO at a different large Center. He gave one look at the scans, and voila! He said this is not a herniated disk, but a lesion bellow T1 between T2 and it's pushing into that area, and making that endplate touch the nerves that is causing her numbness. I asked him to call D's RO, he did, early the next day, and RO could not believe it, the report WAS WRONG!!! Mirsread by radiologist. Yes, It could be radiated. No surgery.
Problem is, she got radiation to exactly the same place, 2 yrs ago to the date. So RO is hesitant, but with the pain and numbness, she has no choice, but to proceed, and gonna try very hard to get rads to the area, but it will be of lesser strength.
So all of us, could learn from it, this is not the first time, that a doc looks at a scan and sees it in a different light. From what I have read, there is a joke out there, that you put 3 Radiologists in one room to check on a scan, and you get 5 opinions. In a perfect world, all scans should be seen by 2 radiologists.
So now, they are scrambling to get all the physics worked out to get this started, but with the Holiday on Monday..., she went for simulation already.
To make things more difficult, she's had her blood numbers tank to just a touch of zero, and it has been a difficult time.
Just 2 months ago, Lilon, they stopped ONE of her treatments, she is on 3 – Herceptin/Xeloda/Ixempra, due to an error in writing from Onco. I happen to ask her what she was taking that particular day. YEP!! She had to stay longer the next time, and have it done like a first dosage.
How is everyone else?
I was so shocked about Cgirani, I don't think I realized it was so grave the situation.
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Giovanni,
Such devastating news. You have been such a stalwart supporter of not just your wife but all of us here on the boards. I know it's hard to believe at this point but you will find happiness again. I know it because you are such a giving and loving person. We will miss your sage and caring advice.
Hugs, Susan
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Thanks momallthetime! Yes. Wisdo is more about posting and commenting, kind of like Facebook. I've been trying to get them to improve the way you find advice. I can't even find my own posts without the links.
Hugs, Susan
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I wanted to let this thread know that my wife passed yesterday due to cardiac arrest after a long. Battle with cancer for 6 years and MBC FOR 18 months.she deafeated cancer and did not let cancer win .I AM SHATTERED BEYOND LIMIT BUT WE WE HAVE WON AGAINST CANCE
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Thank you momallthetime,I am in a holding pattern it seems for a few days... MRI of spine, Tuesday, Medical Oncologist on Wednesday who will provide options and hopefully give me a picture of what this all looks like.
I have always been a strong positive forward thinker but feeling a little sad these days.
I did check into the Intrathecal Administartion of herceptin and I found out my doc may have done that before as well... I also know that my MO has been trying to get a clinical study started that would administer herceptin to the brain... they figured a way to break through the blood brain barrier at Sunnybrook but now they are just waiting for the machine parts to get it done... i'v been on her about it since they announced it in Nov 2015.
And so, I am confident I'll get good care and options but won't find out anything till Wednesday next week.
Big hugs and best wishes for everyone.
JoJo
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my sincere condolences Many.
Thinking of you.
Jojo
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many-
So sorry for your loss. Thank you for sharing your story and your wife with us. You and your family are in my thoughts.
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Many
So sorry to hear about your wife's passing. My deepest condolences. Maureen
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Hi Ladies
I'm about 8 weeks out from PCI. The fatigue is hitting me worse now for the past week. Getting lots of sleep, making sure to keep my protien up. Can anyone share their experience that's had WBR? When did you start feeling a bit more energetic? I know I've read some posts along the way but honestly too tired to go back through all of the posts LOL.
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I found that the fatigue was it's worst about 2 months out from WBR. This seems to be common from what I've seen from earlier posts. I started feeling less fatigued 2 to 3 months after finishing. If you're getting Herceptin and/or Perjeta, that will slow down the recovery from the fatigue. Exercise and lots of protein helped me out. Good luck, you will feel better soon since you are two months out. I am sure you are napping too, if not, try to find time if you can.
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Hi Mara
Well that makes sense I'm 2 months out. Makes me feel better. Not doing Herceptin or Perjeta though. I was actually out for a nice walk with the dog vs napping LOL. Hopefully it the fatigue will start to abate soon.
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Funny Mara. As soon as you said nap and I responded, I went for one. 2.5 blissful hours.
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