Brain Mets Sisters
Comments
-
I'm sorry Paula, I hope you have someone or something to help provide some normalcy. I hate to think of anyone being alone through this. I will say though, from what I've read here, there are many having wbr, feeling better and getting back to their lives. I get where you're coming from though, we're both less than a year in, have been through a lot so far and now brains mets. As everyone has said, we can do this, I believe it, I hope you can too
0 -
Paula, I sent you a PM
Wand
0 -
illiame, I hope we can go though this to. his Have 2 kids but both fat away. Friends help but don't what this game S like . I am so scared
Hugs to you,
Paula
0 -
Wand,
Good to see you!
L
0 -
Thanks for the trial tip Deanna, unfortunately, I Maryland is too far for me but I'll be following this and similar trials and will share what I learn.
Paula, I hope you're feeling better this morning
0 -
Head MRI results from last week. All 19 lesions treated by Gamma Knife over the past 18 months have gone. No new Mets. There has never been any systemic disease. Now over 2 years on from initial solitary 4cm brain met.
Scan again in 3 months. So happy!
0 -
Great news Freakzilla!!! I"m so happy for you
0 -
Such wonderfu news Freakzilla! Time to celebrate!
0 -
Wonderful, Freakzilla! Celebration!
0 -
Wonderful news Freakzilla, gives me hope that I could possibly be ned in the brain too. Glad to hear it.
0 -
0 -
freakzilla YES!!!!!!!! Awesome news!
0 -
freakzilla - that is awesome news. I'm so glad for our family.
People on this thread were complaining about dex — have you tried taking Boswellia Serreta?
I have had my Yahoo account, which was hooked up to this site, for so long that it was impossible to use as it requires me to have it text a code to my mobile phone to access it; I couldn’ even use their app. I finally switched it to a new account so I shouldn't be such a stranger.
An
0 -
Thanks everyone.
It's been a struggle. My Wife is on Letrozole, Kadcyla and IT Herceptin. We are moving the IT Herceptin to every 3 weeks now. So Kadcyla and IT Herceptin will be done the same day. She still has a cutaneous lesion on her skull, but it's been stable for the past 6 months and causes no problems.
We have learnt to look into every avenue. We see multiple neuro-oncologists and a neurosuegeon. My wife's medical oncologist is amazon, very helpful, and doesn't mind me getting involved with care. If we hadn't gone against some vastly experienced doctors my wife wouldn't be here now.
Agness, great to hear from you. How are you doing?
0 -
hi Mara lots of lesions in brain but small starting wbr this week.
Paula
0 -
Thinking of you Paula ❤️
Just finished my neurosurgeon consultation, which went well. Overall, the few, tiny lesions mean very low risk of side effects and no steroids. I should come out of Friday's treatment feeling normal and without any working, driving or activity restrictions. I was told the gamma knife success rate is 95% when they're this small, so that makes DH and feel better about it.
0 -
Freakzilla first of all we are so happy for you. fight on!!
To all my friends hi.
What if i tell you we spent time twice in the ER in the last 3 weeks, either place was a war zone. She had Hematuria caused by clots in the bladder, Onco said they never heard of it. Hmm urologist says they think it's from past chemo. The horrors that she had to endure. They did a cystoscopy, cleared it, there were 2 hemangiomas, and her fear is that it could be back at any time, and these docs don't seem to know.
On top of e/t, we were lucky enough to change Oncologists. He acted quite fast, we met him one day and 3 days later, she was their ER for the 2nd time of misery. The other Onco literally dropped her like a hot potato. She could not get Rads because she was on a trial, but in the midst of it all her CT Urogram showed progression in the liver, and the former Onco would not order PET (which she always took), and or a Brain MRI to know where things are holding, and they took more than 2 weeks to even give an idea what she should be on next.
Her PET/CT showed progression in the liver,bones all over. Then her Brain MRI showed all the calvarium which we knew, the cerebellum is a tiny one, then there is bilateral orbital lesions, which for sure on one side she is having numbness by her cheek and chin area, the other not so much, a nodule on the Hypothalamus, the clivus, sphenois, and lateral planum sphenodiale with a dural tail.
Onco is acting quick, i am fielding phone calls with appointments all day. She started Neratiib/Faslodex i hope it means something, this Thursday she has an appointment with new RO and she has a list for her from here to the moon. Next week is appointment with new Neuro. And now they just called for ophtamologist appointment. I don't think she's gonna go, it's too much.
She has an appointment with Intervention radiologist to do something for the liver, Y90 or something, also Thursday, how we gonna do i don't know.
I'm telling you, former Onco really messed up. After i wrote a rant letter to the Director of the Center, all of a sudden they are calling. Sickening.
Illimae so glad you are holding in a ok place, jos how are you??? paula so sorry for this shock good luck.
Lita, mara, lwrite, goodie, agness all of you waving at ya. If i overlooked someone please forgive me.
I really hope it only gets better from here on....this is not pretty.
0 -
Momatt, sorry for Dani's progression but glad to hear new onco is so quick to be on top of everything. That schedule does sound packed for sure.
0 -
Agness glad hear from you. I second the boswellia vote. I used it more for joints but am well aware it can reduce brain swelling and inflammation. My onc did not mind this post WBR.
0 -
Guys how much of the Boswella is normal to take?
0 -
MomATT,
I was wondering about you and Dani as I kept you in my prayers.
I'm so sorry to hear about all the progression and bladder trauma Dani is experiencing.
I hear that Y90 can help liver lesions, but you might still want to do some research on it.
It will be interesting to see what the neurologist says about the brain mets...have they suggested Whole Brain Rads yet? Everybody responds differently. I was very apprehensive at first, but I finished my 10 sessions on 9/20, and I can still walk, talk, and the short-term memory loss isn't too bad. Of course they have me on Namenda/Memantine (an Alzheimer's drug to help with any neurological deficits), and I'm taking CBD tincture to ward off possible seizures. So far, it's working, knock on wood. But next month? Who knows? Everything can change in a matter of days, as you well know.
All we can do is hope and pray.
I also hope you and Dani get some answers and a definitive Tx plan in place soon.
As you said, this ain't pretty at all. It's amazing how rapidly things can get out of hand. You need some competent docs to pull things back in line again.
How is Dani holding up emotionally? This must be tough on her AND you.
(((Hugs)))
L
0 -
I'm another newbie to brain mets - just found out today from a brain MRI that I have nerve root thickening, indicating "meningeal involvement" by metastatic breast cancer spread. Below the neck I'm stable, but the brain was vulnerable, I gather, because drugs can't cross the blood-brain barrier to find cancer in the brain. For the last couple of months I had increasing dizziness, then vertigo, accompanied by headaches, fading hearing from time to time, and progressive leg weakness.
My primary concern at the moment is that I seem to have meningeal cancer as there is not tumour visible to remove. I've read that "leptomeningeal" cancer is a bad one with a year or less of survival. Not sure if this is what I have. I started steroids today and see a radiation oncologist tomorrow to discuss a round of treatments.
Any information or guidance would be deeply appreciated; I feel at sea and not even sure how scared to be!
Mary-Evelyn
0 -
Mary-Evelyn,
They may want to do other tests to CONFIRM that it is indeed lepto involvement.
They can put in an Ommaya (sp?) reservoir and pump meds directly into the CSF (cerebrospinal fluid). That is one of the ways to help with lepto mets.
You should get more clarity from your rad/onco appt tomorrow.
Sorry I couldn't be of more help.
L
0 -
momall and Dani I am so sorry but hope this is the bottom and it is up from here. You certainly have been thru the ringer and could use some time to pause the mess and just live. Thinking of you both.
Mary- Evelyn we do feel at sea as you put it at diagnosis but before treatment is in place. I think so much of this is what the genes are of your cancer and how it responds to treatment - there are option for brain mets and they are doable. Take some deep breaths and listen to the docs and do your own research and I hope a treatment plan is in place and you can feel anchored again
0 -
Josie just live, that's all she wants, be busy with the kids. How is your little one??
Lita thanks sweetie, you've been going through so much, but you show them. She's upset, and does not understand why is this happening, and this misery with the Hematuria the clots, it just adds and these docs don't even have answers. But she puts on a magic mask and moves on, she tries so hard not to let the world know of what she is going through. And we still laugh!!
Let's see what RO will say on Thursday. Thanks so much for just being there, it helps so much.
0 -
Mom- I so feel for you and worry and think about Dani. I know this sounds like a bit weird advice but, I would say to the new MO - “please try to save my child! Call all your oncologist friends, see if anybody has any ideas, had a similar patient etc”. Make it personal for this MO. I also read a letter to the editor in Economy magazine recently where the doc says that there are so many treatments and not enough patients to do all these trials and that a lot of MOs are doing all sorts of treatments on their patients ( trial of one patient so to speak) and not really sharing the results so the rest of the MOs don’t learn from this trial of one. I love your advocacy for her. Take care of yourself too Mom.
0 -
NKB - yeah, i try to personalize it, and how can we not. Thanks for the push, i'll let you know
0 -
You are an amazing support system for Dani, I hope there is someone that remarkable taking care of you too momatt.
0 -
Hi everyone! To update you, I had a craniectomy on Monday, and it seems to have gone well. The surgeon was able to get to all the tumor material that he could see. I'm going to check out the NIH study that dlb823 recommended.
Thank you everyone for the updates. It's good to know that I am not alone. Mom and Lita, you are amazing. Paula, all these changes take time to catch up to. I try to breathe through it, but I also see a therapist and I know that a lot of people take anti-anxiety medication. I take melatonin at bedtime, meditate regularly, and am a big fan of the book How to Meditate by Pema Chodron. Everyone on this thread is smart and brave, and we are living life as much as (or more than!) anyone else. Be gentle on yourself and remember that you are handling all of this.
0 -
Illimae- Sending hugs today! Hope the treatment works for you!
Momatt- no words to describe how much we love and want to protect our daughters...sending love to you and Dani
Hope you have a sunny day Lita!
Off to the neuro onc in Denver for second opinion. Will let you know how it goes
Good mojo to the gang today!!
0
