Brain Mets Sisters
Comments
-
susan- that statement is so true. Neratinib and tucatinib weren’t around when I was first diagnosed with brain Mets. Cyber knife has also vastly improved. Kadcyla also got sent approved for general use not to mention all the immunotherapies now available. Every day here is another day closer to a more effective treatment ( I tell myself
0 -
Half of my treatments weren't approved by the FDA when I was first diagnosed: Ibrance, Verzenio, Keytruda, Piqray, Trodelvy, ARX-788.
0 -
A friend from our Mets in the City support group posted this link to a new site focused on MBC brain mets including LM.
It's quite sparse right now but they expect to add more info over time.
0 -
Hello everyone. Just a short post to say I am still around. I believe my last post was in September last year which was the first anniversary of my WBR. Fast forward to February and I am happy to say that my latest MRI done a couple of days ago showed no progression and no new lesions. The enhancement on the right side of the pons which was noted in 2 of my previous MRIs was not mentioned in the latest report so I hope it has disappeared. I am still stable, Praise God🙏 May this give hope to everyone struggling right now and especially to the ones who are hesitant to undergo WBR. I was one of those who felt hopeless, helpless and scared. My recovery was not easy but I managed with a lot of encouragement from many of you ladies. Maria
0 -
Maria, so glad to hear you are stable. Thank you for checking in.
0 -
Maria,
So happy that the WBR worked for you! Thanks for letting us know.
Hugs, Susan
0 -
Now 4 weeks post WBR and I've seriously had my ass kicked. My vision is changing, not as active (may be the season), lost taste, vasovagal, and tinnitus. Honestly I'm feeling better but VERY slowly. It's been really hard. I was asymptomatic prior to this and asked for the MRI (multiple mets). Need some words of wisdom and a go grl! Intellectually I know it was the right decision, but it's hard to be 58 in an 80 year old body
memantine- I’d love thoughts- I don’t know whether this is helping or hurting. Been on this for 7 weeks and rad onc wants it for 6 months to preserve cognitive function, MO is like well if you’re fatigued stop it. What - I’ve had so much dhit thrown at me in the last few weeks I have no idea what’s causing what. Thoughts?
0 -
bmpntherd,
I think your symptoms are pretty typical post-WBR a month out. For most people, a month out is when you really hit a wall fatigue-wise. Soon after you should feel a lot better.
I took Mamentine for years. I figured, why not? I had no side effects, insurance paid for it. At some point, they cut me off. I think there are more recent studies disputing the efficacy of the drug for brain mets.
Congratulations on finishing your WBR and I hope will start feeling better soon.
Hugs, Susan
0 -
I second what Susan said. There is a peak in fatigue some weeks out and recovery comes soon after. I was not offered memantine but I do not feel like my brain suffered for this either.
0 -
.
0 -
I agree with Mara and Susan, fatigue sounds about right, should start getting better. I am almost a year out from WBR and still taking Memantine. I don't think it causes me any SE, that is all Xeloda. Hope you feel better soon.
0 -
bloodwirk, covid test, brain CT sll done. I’m ready for brain surgery on Wednesday. It’s been 7 years since my last one. I’m hoping they find this cyst to be radiation damage vs cancer but not expecting it. At least after 7 years I will have something to biopsy snd tell me if my brain cancer is something different than the Her2+ we’ve been treating. Might explain why I keep growing tiny lesions in my head.
So I am all set to go. Weirdly, I feel like I did upon initial diagnosis. I am doing what I’m told to do when I need to. Beyond that, I cannot go.
It’s been b a long 11 years.
0 -
Wow, in your pocket for support with the surgery. I will hope as well that it is radiation damage vs more cancer too. You've been going far longer than my own 7 years and while that is amazing, I can imagine how fatiguing it can be after so long.
0 -
Thinking of your leftfoot and praying for a cyst.
0 -
LFF,
11 years is a long time to be metastatic. You have remained so strong through all of it while taking good care of your family. Hoping that the surgery goes well and that they don't find any new cancer. If they do find anything, they should be able to surgically remove it.
You are my hero!
Love, Susan
0 -
News on LFF. She had some complications so has been in the ICU for the last week. She is doing much better and they expect she will be able to leave the ICU soon. For those of you who want to follow her progress, she has a CaringBridge site: https://www.caringbridge.org/visit/lizayore/journal. She is so brave and strong of will. I know she will do what it takes to be back at home with her kids.
Let's all send her positive vibes, energy, prayers or whatever your beliefs tell you will help Liza.
Hugs, Susan
0 -
Susan, I saw this about LFF in another thread, I was really worried but I do see that she is doing better and even hungry from the last update. Hope it continues to improve for her.
0 -
Yes! I was so happy to read the latest post. She is amazingly strong-willed.
Since my last posting she had a stroke and ended up back in ICU and things were looking pretty bad. As of today, she was much better.
Hugs, Susan
0 -
Hello, new to this thread though know some folks from other MBC threads, where you may have seen my most recent developments: Briefly, a flurry of tests in response to headaches that revealed Leptomeningeal Carciniomatosis, and have been in hospital getting follow up tests (also for new mets in liver) to confirm picture and figure out if new mets in liver and meninges is different than the ER+PR-HER2- I have been being treated for in my bones. Scary, but doctors are at least fairly impressed by my otherwise current good health and lack of neurological problems and think with proper therapy I might still last awhile (not specified, but outlying the usual prognoses for this). Anyway, my most urgent questions have to do with immediate decisions, especially about my current teaching term which lasts for another 4 weeks. Others took my classes while I have been in hospital starting WBR this week. Reading the recent advice to bmpntherd and others it seems the worst of fatigue and brain fog comes a few weeks after the 10 days of WBR, though others have described extreme fatigue by the end. I am therefore hoping to return to the class room for next week, to explain to students my absence and continued commitment to their learning but also that circumstances (chemo after WBR?) might require me to step away earlier. my immediate question is how realistic this is. I will be in my second week of WBR next week, teaching on days 6, 7, and 8 of treatment if this plan works. Will I still likely have the physical and cognitive strength for two 50-minute lectures and one 75 minute discussion class? Might I even after that if Chemo hasn't started? In the longer term, I am looking toward retirement (which until recently I'd hoped was 2-4 years ahead) by the end of 2022, taking advantage of a teaching leave in Fall to just rap things up as I can between any further treatment or debilitation. Aim is to hopefully extend my life enough that I have some retirement time to enjoy things; for that I think I probably need to start planning this retirement now. Thoughts?
0 -
prairiesea,
We are all so different and these are highly personal decisions. I can only share what I did. When I was first diagnosed metastatic with mets to my brain, eye, bone, lung, and nodes, I thought (based on Dr. Google) that I would only have six months to a year to live. I immediately went on leave and, eight years later, I have still not been able to return to work. My job was very stressful and mentally and physically taxing. I have noticed a direct correlation between stress and cancer progression. Moreover, I have so many appointments and spend so much time doing research about trials and treatments, I didn't have the bandwidth to do even a reduced version of my job. These days, staying healthy has become practically a full time job. I do believe that my efforts have helped me to find the right team to support me. And, my team has helped me to stay alive this long despite my widespread mets at initial diagnosis.
When I was getting WBR treatment, I felt physically well. Lost a lot of weight but that weight loss kind of helped me to remain active. I didn't try to do anything mentally taxing during treatment. I had 20 days of radiation to my brain and eye so the timing could be different from yours. I felt super fatigued a month after treatment. I have heard from others that this is pretty typical. I wouldn't have been up to giving lectures and lead discussions but it sounds like you have been doing this for a long time.
I am glad you are able to stay positive despite your recent LM and liver diagnoses. I hope you will be strong and able for many more years.
Hugs, Susan
0 -
I agree with Susan that we are all different. What is pretty consistent with WBR is that for a few weeks post treatment, cognition can will likely be impaired for the first couple of weeks at least. I am not sure it may be realistic to go back so soon. My advice is consider how you are feeling, are you able to read or follow a TV show. If you are able to follow a book or even TV show, you might be able to look into teaching. The brain is inflamed for a while and it can take time to settle down, if mobile, stay active to fight the fatigue part. It will not remove the issue, just make it better, lots of protein, can be regular or vegan options offer more nutrients that can help. Beans to keep up the red blood cells.
Having said the things I have to combat symptoms, may be more realistic to take a month off given what your brain has been through. I did regain all of my cognition and don't perceive any deficits regarding memory. Again, everyone is different. It took me about a month before I started to feel more normal.
0 -
Hi all... so I have been having this weird pain by the edge of my right temple... not a headache but a pain just in that spot that comes and goes. I tried motrin and it did nothing...whioch is making me wonder if its skull or brain mets? I am of course really scared. If I touch the spot it does hurt a little to touch.?
0 -
Hi Nicolerod, I read you post and didn’t think of brain mets, is an injury possible? Obviously worth getting checked out, please let us know.
0 -
Nicole,
Pressing down on your skull and feeling pain probably isn't a brain met but if you haven't had a brain MRI in awhile it might be a good idea anyway.
Hugs, Susan
0 -
Susan..I didn't presson my brain..it was on my temple area and I thought skull met....not brain met...but wasn't ruling out brain...
0 -
Nicole, I also have a tender area on my right temple and a headache on most of the right side of my head. Every time I have a follow up MRI I ask my RO to check that area. Nothing shows up. I have a tendency to clench my jaw when I am stressed or in pain in some other part of my body. I do it in my sleep without even realizing it. I think it inflames my joint at the back of my jaw (TMJ). Also there is a cluster of nerves above your ear called trigeminal nerve that can get irritated if you are clenching your jaw. I have found that lightly massaging the area from the temple down to the bottom of your jaw right at the bottom of your ear lobe can help.
I don’t know if that is what is causing your problem, but it’s worth a try
0 -
Thank you so much MyShadow! I will try it
0 -
it has been just over a year since I had WBR. The mri I had this week shows that there are new Mets and some have grown. So Tukysa is no longer working. Not sure if we can do gamma knife on some or not. Certainly can’t do it on all. Will know more later after I talk to local RO and MDA brain Mets team. Just putting this out ther. I will post updates as I get them.
0 -
Kikomoon..your profile says you are triple NEGATIVE...so why do you get herceptin???
0 -
Because my profile is screwed up since the website got all jacked up. Thank youfor pointing it out. I will attempt to fix it.
0
