Brain Mets Sisters
Comments
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I second that being a caregiver is harder since I recently went through that myself. Healing thoughts for both you and your wife.
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Wow, mara51506, you first paragraph describes my wife's condition pretty accurately. Because she's been off chemo, close to 4 months now, and has multiple bone mets her MO wants to start the chemo right away, which he has. I guess it's just a wait it out type thing. Thanks for the info. Stay healthy.
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All my best to you both Mike. PM if you have any questions.
I will also say I still struggle with energy. My treadmill helps but I went to the grocery store by foot which should not tire me out but I was exhausted when I got home. I sometimes use sheer will to function sometimes. It is not like this everyday but forcing it helps me feel better about my situation. I don't walk fast but can do 10 minutes several times in a day. I can live with that.
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Dorimak,
I had WBR and gamma knife a few years later and didn't need to take steroids either time. If you don't have symptoms, my RO said, you do not need steroids.
Hugs, Susan
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new therapies and combinations emerging for brain mets
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To give you the short version. My wife's ER/PR+ turned TNBC after Xeloda failed, result extensive bone mets. On Halaven and it worked great, even NED. Given 3 months no chemo. Cancer went to the brain, the dura. She had seizures then had brain surgery, major portion of cancerous dura removed and titanium mesh installed. Next she 11 days of WBR. She's back on Halaven. Patients when given WBR, the Blood Brain Barrier (BBB) gets messed up allowing Halaven to enter.
The point is my wife extremely tired all of the time. She hardly gets out of bed anymore. It's been this way for about a month after her WBR. Won't eat much but will drink Boost protein though. She gets confused and doesn't know what day it is. Sometimes mumbles and makes wild motions with her arms and legs. She's fallen a number of times but doesn't remember it. Is this normal, extreme tired, this behavior?
As the caregiver I'm depressed. Okay she's had her brain surgery, then WBR. Don't you at some time start to get better?
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hi Mike. I do not have particular knowledge of brain metastasis. However both operation of that scale and WBR are major events. Let alone cancer and chemo on the background. She may not get better. She may get better in time.
My sympathies to you as a carer. Hope you have support - friends, charities , relief carers.
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Mike, I am sorry your wife and you are going through so much. So very difficult on you both.
I was exhausted for about 3 months and low to no appetite for much of that. Boost was about all I could manage as well. The chemo is not helping either.
I am more concerned about the arms and legs moving about like that and the memory issues as well as the falling down. I can say for myself it was the exhaustion, depression and lack of appetite for those months for me that were bad. I did not have confusion, balance issues or anything like that. I would definitely if not already done report to MO. Unless she already had confusion, balance and speaking problems before, WBR should not have caused problems to this extent. Report this right away to your MO. This is not right. She may need steroids or something to help. If this behaviour was present, it may be worse now as her brain is inflamed but you should still report everything right away.
As stated by me, I had extreme exhaustion, depressive issues (not getting out of bed or off couch or self care like bathing). No issues with falling, confusion, or any of that. Keep us posted, PM me if you need anything else.
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Mike, WBR takes a while to recover from.
Don't worry about the memory issues...I have those too. I use Post It notes and put them in places where I can easily see them, "Today is FRIDAY, August 17, 2019." Even w/the notes, I'm always a day ahead or a day behind.
Names are REALLY hard for me now. I'm always exhausted and tend to fall asleep in the recliner, but that's okay. I'm on permanent disability now, so I don't have to worry about making it to work on time.
I do the stuff with the arms and legs sometimes, but let's not forget, my RO said, "You have MORE than 20 brain tumors in your head, what do you expect?" And I'm part Italian, so I attribute it to having to use my hands more to communicate. At times, I just have to say out loud, "Slow down! Find your words," and it takes a while, very annoying and distressing.
I have to be careful about getting up too quickly as I've already gotten really dizzy and had a couple of face plants. I'm on new meds now, and it will exacerbate the the problem...YIPPEE!
Take care, and I'll keep you in my prayers.
L
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Thanks all of you. She's only done that waving arms etc a couple times. Now mostly complete exhaustion. I forgot to mention her last blood test was almost perfect on all scores. Maybe that's why her MO isn't worried. Also, she's constantly going to the bathroom like about a dozen times per hour. She takes immodium and says she doesn't have diarrhea. Maybe it's some sort of a repetitive response or something like that.
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One more thing, Mike, the fatigue and exhaustion takes FOREVER to dissipate.
Heck, I'm tired ALL the time now, as I said, but it's par for the course. They've got me on a new pain mgmt regimen, so that's not helping with the fatigue...it just makes me even sleepier. (Hopefully I'll get better sleep at night, but we'll see.) I'm still happy to be around despite all the pain I'm in. I just hope this new stuff works, but it's too soon to tell.
Oh, and with me along with the arm stuff, my hands start trembling uncontrollably. Weird...just one more thing I gotta live with.
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hello all,
I just wanted to say how much you ladies have lifted me and my mom up during this difficult diagnosis. Hearing your stories and actually talking to people who've have brain Mets for a while or WBR and function enough to live a decent life gives us so much hope.
Mom (Bonny) has her brain and spine MRI tomorrow (Aug 29) at 1:45 pm mountain time. She’s got lots of people praying for her!The results of this will probably tell us if it's leptomeningeal vs in the dura of just the head vs in the dura of spine and brain.
Mom was originally diagnosed as stage 2 in 2002 ER PR+, HER2 -,then was “in remission" for 13 years until it came back in her bones and has progressed from there, but they haven't re tested? How hard should I fight for this?
Thanks so much,
Chloe
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bonnysgirl, sorry to hear your mom has progressed. If there is a tumor with a size and location that is accessible for biopsy, I would push for it but sometimes options are limited and docs must proceed with suspicions vs proof. Good luck.
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Hello brain mets pals.
Maybe this has been reported already, but we lost another sister. Anne Donovan passed a couple weeks ago. I cannot remember her user name, and it's been a while since she posted. She was a wealth of knowledge and will be missed.
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kkrenz, thank you. I saw it on FB but wasn’t sure if she was the same person that posted here as Agness. This is a big loss, I consider her a brain mets patient pioneer, fighting so hard for new and innovative options. RIP Ann
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I am so sorry to hear about agness. She definitely was a fountain of information for us here and an inspiration as he dealt with leptomingeal disease for years. My condolences to her family, friends (on this site and in real life) and anyone else who cared for her.
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I am so saddened to hear of Agness' passing. I learned so much from her posts.
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Hi, Ladies,
My younger sister (37 yo) is in limbo waiting for a call from her ONC, but we read the MRI report online last night and it doesn't sound good. All brain tumors growing and the ones in the cerebellum are growing quickly it noted. When she was diagnosed with brain mets 22 months ago she did WBR treatment which was followed by Kadcyla for 7 months or so and most recently Tykerb with Xeloda. We should probably wait to hear from him, but we're nervous. At the last appointment we went to the doctor said the HER2Climb trial was currently not accepting patients. Her docs have never been interested in SRS/gamma, so I'm left wondering what other treatment options we have. Thank you!
I'm heartbroken to hear about Agness. She was kind and always so willing to share her wealth of knowledge and personal experiences with me and so many others. RIP.
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Eribulin has work well for my wife in the past against her numerous bone mets. She is TNBC and recently had 4 violent seizures because of breast cancer going to the brain lining, the dura. She had a brain operation and a portion of the dura was removed then a titanium mesh was installed. After that she had WBR. Her Onc said (and I've also checked on this as well) that if you have WBR it messes up your Blood Brain Barrier and allows eribulin to pass into the brain. That would be great.
From what I understand Xeloda also gets through the BBB; Xeloda totally failed my wife and her then ER/PR+ turned TNBC. Carboplatin goes through the BBB, but I think Carboplatin is for TNBC. Maybe an Ommya? Why not SRS Gamma? Maybe too many lesions?
I have noticed with some oncologists that they kind of give up and keep recommending the same treatment that is obviously not working. Lack of imagination, stubborn or afraid to ask other oncologists for some ideas.
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Mike, the WBR does indeed open up the BBB so drugs can cross. Apparently this effect lasts over many months.
I agree with you other treatments would be nice, I would love to have an ommya port if I progressed myself. Fingers crossed that things are still shrinking from last radiation to the brain in 2018.
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Hi Friends-
I had a CT brain scan early this week. Here are results which were posted to my portal:
Small area of parenchymal enhancement in the right occipital lobe measuring
3 mm. Recommend MRI for further characterization. Although metastasis could
not be excluded, a small developmental venous anomaly would also be in the
differential.I am unable to have an MRI due to the presence of a pacemaker/defibrillator. No word from Onc on this scan. Is this anything to be concerned about? I truly have no idea what it means.
Thanks for your input.
Angie (masonsmawmaw)
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Angie- if you can’t have an NRI then I’d say that that finding is small enough they could wait and rescan it in 3 months. I say that if it is not effecting you or producing SE. I had 6 spots show up on my last MRI and we decided to watch them and rescan in 3 months. to se what happens.
I think this could be an option for you.
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My wife and I had a talk with the Head Nurse (stand in for her oncologist). It was "The Talk," tests are scheduled but her oncologists feels the eribulin is failing her. Also she's getting progression to the brain. Her MO feels there isn't much time now, she'll slip into a coma and never come out. We cried all the way home.
My wife has often been incoherent, she's had a dramatic loss of weight and she shakes and trembles all of the time. Just lately though she's been doing a bit better and eating more. Maybe, just maybe, all the above symptoms are due to her not eating hardly anything. She's agreed to eat more. We'll see how that goes. No more chemo until the brain MRI and body PET scan results come back.
I hope none of you dear ladies have to go through "The talk." It was awful, the full reality of it all hits you. Forty nine years of marriage come to a close. I have such a deep pain in my heart right now. Probably the worst day of my life.
MikeW.
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mike- I have no words as I can only I
Shine it was the worst day you have had. I wish you quality time with your wife in the coming days. You are in my prayers.
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Mike, you and your wife are in my prayers. Much love to both of you.
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Mike, my thoughts are with you and your wife.
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Mike...
You, your wife, and your family are all in our prayers. Never, never give up hope! We serve a mighty God who is still in the healing business.
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Literally stopped by to check on Agness
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repeat brain scan Friday. Anxiety building. Last one showed 6 spots. I have no idea what this one will bring. If only s few new ones or stable, I stay in current treatment. If there are lots of new ones, the hunt begins for compassionate use of a drug or something else.
Friday can’t cone soon enough.
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Thinking of you leftfoot, and praying for clear scans.
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