Brain Mets Sisters
Comments
-
rwhite, I am in the same boat when it comes to a particular area not being treated with rads again. If I do get another met, I would also be looking at another craniotomy in the same location if I recur there. Yes there are drugs that cross the BBB and you should certainly ask you onc about them. Also keep checking brainmetsbc.org as well for other treatments coming down the pipe as well.
0 -
got my scan results. One spot left and RO thinks what is seen is scar tissue. I will be rescanned in 4 months. Such a relief. RO thinks it’s the best scan I’ve had in years.
Hoping my body tolerates kadcyla and tucatinib as it seems to be working. Cyber knife took care of what they had seen.
It was a good day.
ThAnks for the support
0 -
So glad to hear the good news LFF, may it continue.
0 -
Wonderful news!!
0 -
LFF,
Doing the happy dance because of your wonderful news!!!
Big hugs, Susan
0 -
Anyone using the combination of Tukysa.Xeloda and Herceptin? I am going to start this new treatment in August. If anyone can share their experience, that will be really helpful please. I have my worries about side effect
0 -
I’m on Tukysa and kadcyla. Similar treatment and working well
0 -
thank you for your response. How is the side effect from tukysa?I heard it’s bad .
0 -
Malinda- I am still evaluating. I will be honest and say I haven’t felt this bad in as long as I can remember. Now is it the tukysa or is it the fact I’ve been on treatment for almost 10 years. I will say I have tyy hi e most fatigue I’ve ever felt and I have been struggling with anemia. It coujd be the combination of drugs, the kadcyla, the tukysa or a lot of other things.
It has knocked back my brain Mets so at this point I am in I will make it work mode no matter what. I have no real other options.
I’ve been in it since April I think. Don’t let my experience scare you. I am one person with a very long treatment history. It is doing its job on my brain Mets and for that I am thankful.
0 -
Hi, I hope everyone’s fine! After having had my brain and spine checked and had a spinal tap in April and all came back clear 2 weeks ago I started to have a constant flackering in the outer Upper corner of my left eye. My radiologist I called last week wasn't too concerned as the images showed nothing somewhere close the area which is responsible for eye stuff. ( I am dealing with necrosis where my met has been)
A few days ago I started to feel stomach sick which could be because of a chronic gastritis so I am hoping for that but I am very afraid about something serious going on in my brain causing the flackering sensations.
Has anyone experienced something similar?
0 -
I'm sorry if this came up earlier but I could not read every post to get an answer.
What is whole brain radiation like?
I have 10 day radiation planned but I'm not too sure what it's going to be like. My dr says there aren't many side effects, my personality should not change, I wont feel much different. He seemed unclear about the long term effects. I already had a craniotomy and gamma knife so I am concerned that I will have more memory problems than I am already having right now.
0 -
My main side effects were fatigue and lack of appetite. I was also really depressed about my brain met dx so I think it took me longer to recover. My personality did not change though I found things like reading hard for a few weeks. Did not lose cognition that i am aware of as chemo assisted in affecting my short term memory
1 -
admitted to hospital for suspected hemolytic anemia due to medication. I sure hope the meds aren’t the cause as it sure has knocked back my brain Mets.
0 -
Oh, I am so sorry to hear you are in hospital. Hope they get a handle on it for it and that it is not related to treatment. Keep us posted and I will be thinking of you.
0 -
LFF - So sorry to hear you are in the hospital. I hope they get to the bottom of things quickly and you can stay on the meds.
Seilien - I am also starting WBR (tomorrow). I am very nervous as well. I asked a friend/oncology nurse about it and she said to expect to feel foggy and have some memory issues (like needing a list when going to the store). She said that the fatigue is quite pronounced especially for the first month. I'm not looking forward to this!
I think I am one of the only people on this thread who is not HER2+, except maybe Susan. I'm feeling like I have a significant disadvantage since everything I read about brain mets is only for HER2.
0 -
Sary- good luck snd May treatment treat you gently.
0 -
Seilien and Sary,
I found the actual WBR treatments to be easy to tolerate. The main SE I experienced was a loss of taste which resulted in a loss of appetite and significant, rapid weight loss. I had some extra pounds to lose so it wasn't catastrophic but if you are already thin you will have to be very careful to eat enough. Lost my hair but it grew back quickly. About a month out I became very fatigued. Didn't last for long but don't make any big plans a month out.
Six years later, my short-term memory is pretty bad but I rely on my iPhone to remember appointments, take notes etc. so I'm able to function well. Honestly, my husbands short-term memory is about as bad as mine and he hasn't had WBR! A lot of it is just age. Haven't lost any higher brain function or my personality (for better or worse).
After WBR, I had two bouts of Gamma Knife, a few years later and last October. So far so good (knock on wood). Radiation whether WBR or Gamma Knife seem to be very effective so I haven't relied on chemo or other treatments to keep my brain mets under control. However, there are limits to how many times you can radiate the same spot. I have heard that after three treatments the risk of necrosis becomes too high.
When I was first diagnosed, most trials excluded patients with brain mets. These days they seem to be inclusive so long as your brain mets are under control. So I'm hopeful they will find more treatments that can cross the blood brain barrier. I have also heard that, right after WBR, you blood brain barrier is more porous and some treatments will be able to make it through. You should ask your MO about that.
Wishing you both the best!
Hugs, Susan
0 -
LFF - thinking of you! I hope the get to the bottom of it and get you on the mend soon.
Sary - good luck with WBR. I'm HER2- too but have only had GammaKnife radiation.
0 -
I am new here to this thread. I have had a met in my left sacrum and hip for the past year (actually 2 but only diagnosed a year ago) I also have liver mets. Todays PET scan found a new lesion in C7 and I am Panicked. She called me at home to go over results since there is a new tumor...she also said the one in the sacrum looks like a fracture might be there. I did have 3 sharp pains in the sacrum like a few days ago but that was it. then just the normal constant uncomfortable - ness of it. She said she wants a MRI of Thorasic and Cervical... and she mentioned about talking to the tumor board thursday morning (before my appt) to see if we should radiate it...and something about being worried about future... spinal cord involvement I am freaking out...can anyone talk to me about this area?? Gonna cross post in Liver for my liver friends.
Thanks,
Nicole
0 -
Nicole, everything kinda depends on what the docs suspect when they say spinal cord. If they think tumors could put pressure on the spinal cord, I’d think they’d recommend radiation or systemic treatments. If they think cancer may get into the spinal fluid, that is different and a neurologist and/or neuro radiation onc would be involved in the next course of action. It’s hard to answer at the mobut we’re here if you need us.
0 -
Thanks all for your supportive comments and thanks Susan for the details of your experience. I am now 4 treatments in and feeling pretty bad. I could hardly hold my head up yesterday afternoon. I guess I've been pretty fortunate to escape the worst side effects of my other treatments so far. I'm not used to feeling like this. I had to start on steroids already, so that might contribute to the general crappy feeling. I don't want to discourage others, just thought I'd report my experience so far.
I also have a bad feeling that my lung and liver mets might be getting out of control during this month off treatment (well, I'm on Tamoxifen, but doubt that will do anything). I guess it is a game of prioritization at this point!
0 -
Sary,
So sorry to hear that you are already feeling bad. How many days of treatment do you have? Because my eye was done at the same time, she had to space my treatments out to 20 days. Perhaps that's why I never felt bad, lower dosages over a longer period. Also, I didn't need steroids since I have never had any symptoms.
I see that you are relatively young. If you can manage it, try to stay as active as possible. I continued to go to dance (4x/week) and yoga classes (2x/week) through treatment and I think that really helped. Of course, don't over do it.
Wishing you the best.
Hugs, Susan
0 -
Thanks Susan! My treatment is spread over 10 days, so that could definitely make a difference. I can't imagine doing 20 treatments though. Good advice about staying active. About all I can muster right now are short walks, but I will try to at least keep that up.
0 -
Just an update. I've done 5 of the 10 WBRT and I am feeling my mental and emotional limit. The side effects are mild but I cannot eat. Food has a weird, sweet taste. I want to throw up but there is nothing in my stomach. I'm not a thin person so maybe I can just get through it?
I'm tired, laying around, nothing extraordinarily painful but the constant stress and mild symptoms grate on my nerves. I hope this passes because my toddler has started to wonder why I'm always resting. I also think the steroids 4x a day and other drugs to prevent nausea make me feel more nauseous which cant be right, right?
0 -
Seilien,
I'm sorry to hear you are having such a rough time. The steroids can make you nauseous. You can ask for more anti-nausea meds. When I had my gammaknife radiation done, I noticed a metallic taste in my mouth for a few days, so the sweet taste you are noticing might be a SE of your WBR. Can you try some of the protein shakes, like Ensure? See if you can tolerate those better.
With your toddler...if you have the energy try to make a game out of your resting. Get sleeping bags and pretend you are camping on the living room floor or building a tent out of sheets and furniture. It's ok to give him/her more screentime than you usually would too.Hang in there!!
0 -
can someone just tell me that I'll get through this in X amount of time? I'm about to start tucatinib, xeloda, herceptin and I am way more mentally and emotionally drained going through this a 2nd time.
I don't feel as strong as I did the 1st time, especially 4 surgeries later with more to come.
Is it common to feel so defeated? Will a time come where I'll just get over it? I am losing my hair again, any possibility of breast reconstruction, my brain, and my life. Please let me know if things have looked up for anyone, it would help me get through this tough time.
0 -
Silien- you can do it. I know it’s hard the second time around as I’m in my 3rd, 4th, snd 5th rounds of brain treatment. tucatinib has a great record although it might not be right for me.
hang in there. I think great results are just around the corner for you.0 -
I’m having one of those hopeless days.. hoping someone can share their good stories. Going on my 5th TDM1 treatment, things are going well. I feel okay, going for an MRI next week to see if SRS did its job. It’s been 12 weeks. I’m so afraid of recurrence happening again so soon. This year has been so hard overall, not only personally but with everything else happening around the world.
0 -
Roro, I can understand how hopeless it can all seem, especially when scan day comes up to find out treatment is working. Glad to hear TDMI is going well and you feel OK. I am still here 5 years after the worst BC dx you can have, IBC, grade 3 and HER2+. Somehow my cancer responded to the chemo and Herceptin and I am still NED. I did have a brain tumour grow to 10 cm the next year so had brain surgery and WBR. Took a long time to recover but I did. Had some growth in original spot so got local treatment. Every time something happens to me, I somehow manage to get back up. Bad digestion, digestive enzymes, way less nausea. I still feel like a truck hit me the first few days post Herceptin but I still get up and make myself walk. I feel better after and it helps my mental state immensely. If I do nothing, all I can do is sleep all day.
What it boils down to is that after 5 years of being Stage IV, I am still alive and doing pretty well, strong enough to carry on my life by myself. Haul heavy groceries home in super hot weather which means I have a lot of stamina. My qol is good and I enjoy my life even after all the crap I have been through. You will find your stride in dealing with this and I will hope nothing but the best. There are also people on this thread and other threads who have lived a long time after a brain met dx and living good lives. You only need to check their profiles.
Allow yourself to process your feelings on a hopeless day. Feeling the emotions and being able to cry out stress or however it goes for you is the bodys way of releasing pent up stress. Don't ignore, if it is a hopeless day, give yourself time to feel it and your mind will help. If it lasts more than a day or two, find other ways of distracting yourself, meditation music playing, tons of it on youtube, exercise, watch shows or movies you enjoy. It will get better for you.
0 -
mata- you are a greatvv BBC example of so my wine living her life. Hang in theee ROro.. we are there for you.
I am just existing BBC a rather hard period of time myself but can tell you it can be done. These are amazing people full of so much advise and supplier.
May today becc xx a little better
0
