Brain Mets Sisters
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Just wanted to share some good news! I had my first petscan since starting Xeolda in June (currently on my 4th cycle) and my doctor just called on a Sunday! with the initial read. Everything is stable! Before I started Xeolda, besides brain mets, I had an increase in the size of my breast mass, as well as a swollen lymph node, which is why I switched from Carbo/Gemzar to Xedola. The scan showed a no swollen lymph nodes, a slight decrease in the mass itself, and nothing anywhere else! Now I just need to get those pesky brain mets under control and I'll be good to go for a while! I have my next follow up brain MRI the first week of October.
Despite having an appointment with her tomorrow, my MO wanted me to have the good results today so I can relax tonight and go into the appointment with her knowing it is is going to be positive. She is truly a special person!
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Glad to hear your results Becs! Good news for sure.
Myself am struggling, halfway thru WBR, struggling with steroids, BAD mood swings and stomach issues. Hope this passes soon. Hate decadron.
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KT1966Great to hear that you are doing well.
Mara how are you doing with WBR now? I am following how it's been difficult. Mara what type of surgery did you have? What did they operate?
Page wishing you the best.
Oh Isabela, I am just getting myself together to post again. You are so young. My daughter is your age. She has mets to the bones,(all), to the skull, brain, and liver. They keep trying to tell us how serious it is. But I try not to go there. They don't really tell her, they tell me. Interestingly, in NY, they really don't wanna do much Gamma, she had twice, and they would not do it again. Which part of the brain do you have the mets? Do you have it in the skull also? Is this doc in a large Center? Great idea to make the change. For sure you gotta have confidence in your doc. My daughter is triple positive too, she did take Ibrance and Letrozole, just a couple of mos ago, but then there was progression to the liver, so they got her off it. She is now on Ixempra/Herceptin pretty tough.
Bad as user that is just fantastic!! Which tx are you on now?
Josgirl so sorry to hear what you've went through. Where in the brain was the lesion? How long were you at the Hospital?
Becs first you look radiant. That's really so nice, and so great that you are sharing the good news with us
I have been AOL. It's been a rough ride. So we had the appointment with the neurosurgeon, and to our astonishment he said that the lesions in the cerebellum have been there awhile, (but not on the reports and we were not told), AND besides of the extensive skull lesions, the big ones in the frontal area, cannot be radiated!! WHAT?? Rad Onco kept telling us, for 2 monts, it's ok to wait to see if systemic therapy will help, she kept stressing that hair will come off, we said fine, Dani was already looking into wigs, she bought 2 beautiful very expensive wigs. AND Neurosurgeon called it brain tumors. I kept understanding from the Rad Onco and the Onco that she had bone tumors in the skull, no one told us before it was brain tumors.
So I would like to ask, your brain tumors, in what part of the skull was it. I would like to get a better understanding.She has in the sphenoid area also. Mandibular. etc...
Also, he is talking about resection, and then having a plastic surgeon come into the surgery, because he might need to fix the skull. He is quite young, I'd say late 30's, yes good pedigree, but what is the opinion here of a youngish surgeon as oppose to a more seasoned one. My hubby says maybe they are more in tuned with newer "ways". I'll probably look for another opinion anyway, but would like to get your opinions on it.
She is on Ixempra for 2 wks now. It's been very hard on her tummy, and much fatigue. But let's hope she could continue taking it.
Eager to hear what y'all have to say about it.
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Momatt, thanks for asking about me. My tumour was in the parietal lobe it turned out. Big lesion, most taken out. Little tiny bit left since wrapped around blood vessel. It was in the dura, not brain tissue. Halfway done rads. Feel bad to complain with all Dani is going through. She has my thoughts just as you do. Once I get off the steroids, I should be better.
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Mara sweetie, thanks a lot. how long was the surgery? How long were you at the hospital? They kept telling us is not consider brain mets per se, I thought only now that it is in the cerebellum, but it seems that they do consider the dura (she also has there), and in the parietal, why did they keep telling us it's not brain mets. I will ask tomorrow for the notes of the Rad Onco I wonder what she wrote there.
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My surgery took about 6 hours. I only spent 3 days in total. Surgery Aug 12 (friday) out Aug 15 (monday). I was lucky since there was no cognitive damage so as soon as I showed could walk around, answer all the neurological questions (what hospital am i in, the date, do you peel banana before eatting) etc, they let me go. Not sure why they would not call it brain mets even in dura. My Rad Onc always confirmed is brain met for me. Just was lucky not all the way in the brain so no muscle weakness, problems walking etc. I did have some seizures before but this was due to the brain swelling before dx, not the tumour location.
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Thanks so much for the info. They told her probably 2 days. Very hard. Her little girls are not aware about the dx at all. So the logistics will be hard. Also, btw did you have a bandage on the head? I didn't ask doc that question. If they would have told us that it was Brain mets, i probably would have or should have gone to a Neuro earlier, maybe he would have pushed for these large lesions to be radiated earlier.
They kept telling us, QOL and like feeling sorry that she would have a bald patch. I kept telling them, yeah, but we'll get a wig. I hope i didn't screwed this up by waiting. And what are the chances of Ixempra having an effect on those lesions anyway?
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Not sure about Ixempra, not familiar with that particular chemo
I had a turban type of dressing for the day of/day after surgery. Came off on the Sunday. Was uncomfortable and hot but kept the incision protected. Then I had staples afterword. Very doable. Only ever took Tylenol (acetaminophen) for the pain around surgical site. Was still on steroids so not too much headache, just a dull ache. Not hard for me. These rads are harder than the surgery and recovery were for me anyhow.
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Mara why are the rads harder?
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momallthetime you are going through it all that is for sure and it seems doctors aren't consistent with terms and plans which makes it just so much harder. To answer you're question I had a 2x2x1 ish cm tumor in my lower cerebellum (where all the motor function is - yay). I had to have a drain put in which they slowly have reduced me off of but that's why I have Been here in the hospital so long (I should go home Monday/today day 10 after coming to ER). They removed what they think was all the tumor but will likely have rads of some type to the tumor bed (that plan From surgeon). I am anxiously awaiting my path report as it seems my original tumor type had to have mutated for it to go to the brain first. Obviously I am in The throes of anxiety without this report and have no idea what I will ultimately let be dealing with. It seems like a lot of standard of care elements are around for some stage iv but not too much or brain. It's hard to be your best advocate under these circumstances but that's why I love this site- everyone here knows and shares what they can and provides comfort as well as research. Thinking of you and Dani and everyone.
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I find rads harder due to going everyday, losing hair again, GI problems and mood swings from steroids. Not sleeping properly is not helping either.
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Mara I hear you. Interesting that there are GI issues from rads to the Brain? Hmm, why aren't they addressing this with her. She is on this new tx IXEMPRA, which in itself it's said that it's very hard on the stomach, she has major cramping and Gas, and diarrhea but doc doesn't say it has anything to do with rads, so we just keep thinking it's just the tx.
Josgirl so precious that little one of yours. She is with Mom now? I hate to tell you, but it could be that in the Brain is the one that had an effect on you, but maybe it's really someplace else also. A PET/CT would show that. And then you'd understand that it's not like a new thing, but it traveled there. It could not be causing pain anywhere else? Just saying, from experience. Definitely great that they are sending it to Pathology, but it's not so usual that it suddenly just show up in the Brain. Jos are you expected to rest at home or you could drive etc..
Dani also has in the cerebellum, one was radiated, the other one they say it's too close to everything (like in the center), they don't wanna touch it if they could. Not even radiate.
I really think I should be looking at another opinion also, but this is a major Hospital. Anybody has a problem with Surgeon treating the Brain is under 40. Anybody knows how to get the info of how many such surgeries have a surgeon done?
LissaM it's really tough to get a dx again. Every time for us it's like, here we go again. And btw, my daughter did not tell a soul aside from her sibs, no in laws no one after Mets,it's a long process and people just don't get it. You are right about Holley's video, she was great. With her it's been one thing after another, very hard to explain to ppl that you could look just fine on the outside, but inside everything is in chaos. And forget about the pity parties, she could not stand it. We try our best to be there for her. And always pray for the best. Take good care
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Momallthetime,
I am 37 and my daughter in the (albeit older pic) is now 4 1/2. My desperate fear is for her not me. I have no other symptoms but certainly mets could be lurking. I'm sure I'll have many follow up scans as the days weeks go by. Hopefully getting my path report Wednesday which at least will tell me what I am dealing with. And hopefully I go home today so excited to see my girl and get some cuddle time. It will be more healing than anything I can think of at the moment. Best of luck to Dani and everyone on here.
AlsoI can't drive on my own until the sutchers are removed and my neck stiffness gets better but where the tumor was I had no seizures just horrible headaches and nausea (just...). But so much more will come with this path report that I don't even feel like I know anything.
Josee
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Josgirl - the path report and followup info on treatment will be helpful. I do know it is frightening no matter what (even with a treatment plan) BUT without, there is so much unknown.
Momatt - The GI problems may not be the rads. I tend to lump all SE together. It may very well be the steroid which I hope I can come off soon (provided no brain swelling from rads) to see what leaves. I did have a meltdown because I got the aftercare form for the whole brain radiation which listed the common side effects. One of which was short term memory damage. I knew this was possible when having treatment but it opened up my fears AGAIN and cried a lot. I just want this portion to be done with so I can see what else am dealing with. My hats off to you and Dani, you both have so much more going on than me, yet you mention she is not having pity parties. I need some of that spunk if you wanna call it that. I barely hang on during treatment. I was the same during chemo last year before I was dx Stage 4.
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Aghh I know Mara, so sorry. I tell you, that is what scares us all. What kind of support you have around you? At the lease someone that could understand what you are going through and empathize with you. YOU ARE GOING THROUGH HELL. I honestly don't get more than 3 hrs sleep at night, thinking of every detail, what I missed what needs to be done. The stress is unbearable. When I go out in the street, no one knows. Not even my close sibs, it's too much for people to carry around.
And I do know, that we have to show a good face at the docs also, they don't have the time or patience to really devote to your sense of loss. You do need someone that will make things better at the moment. You'll get through this.
Jossie, what a dream, this little one. She will keep you on your toes. My daughter is in her early 30's, been dealing with this for awhile. She has 2 little ones, one just 10 and one 8. They don't know. She's always managed. We say she has a migraine. She does the docs visits early in the AM, or Pet/Ct very late at night. It's been a job in itself to keep things as smooth as possible for the kids. But in a way, she pushes herself because of them.
Hope to hear you are home real soon.
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Mom att, thanks for your words of comfort. I do have excellent family and friends. It's still hard but am trying to go day by day. I am a monster on the steroids but can't be off them yet. If I cannot come off them for some reason (ie swelling after radiation done) then I will get mood stabilizers but for now, since on track to wean off in about a week and a half, am not going to get them yet. I agree as well, I show a better face at the doctors, family know what I am really like.
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I wanted to let Lori's brain mets sisters know that Lori (Bourscheid) passed away last night. I met her through Wind River, a cancer retreat that we both attended. We spoke by text message a couple of weeks ago. She was scheduled to start chemo again. She was optimistic about the treatment. It had worked beautifully for her in the past. Things did not go well this time. She was surrounded by her family when she died. No more treatments for beautiful Lori. May she rest in peace.
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We're so sorry to hear this... Rest in peace Lori. Our sincerest condolences to her family and friends.
The Mods
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I'm sorry about your friend Ronda. I'm glad she was with family.
Mara, rads are hard- I'm finding they are catching up with me now. I'm shaky when walking, have double vision often, nothing smells or tastes right, have no energy (walk slowly & not very far) as well as increased pain (?swelling) in my head/upper back & shoulders.
I had an onc assessment on Monday and my tumour markers are coming down (from over1200 to 1100's) so my onc is happy the vinorelbine is working - he says the symptoms I'm having are probably from the WBR. The se's peak around 2 months before you see improvement (mine ended 1 August & spinal rads on 18 August) I hope he's right & I will feel better soon.
Sorry haven't addressed you all - I'm finding it hard to concentrate...
I hope you all are going well
kt
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Sorry your SE's are still with you kt. My SE's are twofold. I have the depression/not sleeping from the steroids and then the radiation has affected my ability to eat as well. I am eating toast but that is all I can stomach right now.
I am starting to wean down from the steroid with my rad onc's permission since I did not have swelling issues right before the WBR. My surgery took care of that. I was completely off steroids a couple of weeks after surgery before the WBR started. The SE (mood disorder, no sleep) outweighs any benefit the steroid may have had now.
I wonder if part of your SE's peaking could also be related to the secondary radiation you had as well. Your poor body has been through so much, not suprisingly it is staging a revolt. I understand that I may have issues for a couple of months too. Was disappointed to hear that but nothing to be done now if this is the same case for me.
I hope you do as well as you can, keep in touch with us.
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kt - your poor body has also been through so much for a number of years that I would not be surpised if it is not just the WBR having an effect but the chemos you've had, spine rads as well right after the WBR. I think at this point, your body is just tired too. I am sending all the energy to you I can, I do feel bad complaining since I have not had a harsh chemo since Sept 2015. Had only been having Herceptin, which was never a problem for me. I am rare to be brain mets only, but at this stage, am almost grateful. You ladies with multiple mets throughout the body, enduring chemo/targeted/hormonal therapies on top of brain treatments really do amaze me.
I know you don't particularly need my amazement but you do have it for just continuing on despite everything. I will need that. I have to remind myself, I have been dx Stage IV only two months, but know I will have to change my mindset about a lot of things too.
kt - I am hoping for the best results for the new chemo as well as the WBR effects lifting. Have they mentioned a steroid if you are possibly having swelling, or do they not think it is related to your brain mets?
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so I got my path report and was surprised to find all it said was metastatic bc spread. No hormone or her 2 info done. I have my oncology apt on Monday with my reg onc so will have the full staging workup done then. They took me off tamoxifen in the hospital so need to find out the status with that too. I have my neuro oncology apt October 11th so hopefully I'm not waiting too long for these answers. The neurosurgeon said very favorable prognosis which made my parents very relieved but I have no idea what that means. I had the one 2x2x1cm tumor And nothing else was seen on the MRI so that is good I guess. The interesting thing the neurosurgeon said was only 50% of people that have a brain tumor have it return. I would have thought the numbers higher but not sure what patient pop he is talking about. Feeling better each day although the forced dehydration from surgery Is still tough. That's to control swelling and give my brain more time to level (I had a lot of brain swelling due to the tumor). But I am able to drink water instead of fruit juice only so feeling so much better. I am so happy to not have the headaches anymore. They were looking back such an interference with my life and feeling good. The surgery lifted all those symptoms and I feel such relief I didn't realize how badly I was feeling. I was sucking it up working full time taking care of my preschooler and doing all the regular stuff. Looking back I'm pissed I didn't go to the oncologist earlier (headaches started end of June) but my primary care was sure it was stress related tension headaches and in May I had just moved into a new house (my bf and I moved everything ourselves) -and ran a half marathon so thought the headaches and fatigue were reasonable for over pushing myself. But outside of being miserable for a few months I am not sure if finding it earlier would have changed anything. I am so grateful for feeling better now and astonished all the wonderful family and friends I have that have stepped up. Not just for me but for my parents when I was in the hospital. Just thankful. Will keep you ladies updated and you're all in my thoughts
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Well, I finished 10 treatments of WBR and besides feeling sick and nauseous constantly (even with dex), am depressed that I will not feel better for months. I am angry at RO for not having been more upfront about the common cognitive side effects that come with WBR.
I am extremely unhappy that I did WBR and regretting it and worried that I will never get out of this dark cloud of regret and feeling so damn sick. I don't so much care about the hair but just am not the sort of person who is good at rallying when I am so ill. I certainly am not patient to feel a little more human either. I am forcing eating but it is a struggle. I force myself to go out and about too since I do not find am able to rest well at all. I feel like I can somewhat encourage my recovery by being a little active.
SusaninSF, I pray to have a result similar to yours, I know that you had a good experience and are still NED in the head. I hope to be that as well. My current goal is just to have a day where I do not spend it in bed crying the whole day. I blame the dex for that. I am done dex as of today per my RO so hoping this will tone down some.
Just feeling dejected and sick of being sick and hardly spent anytime ill. Don't know how to handle the next couple of months.
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I hear you Mara. I too am tired of feeling like I do.
My mo believes steroids are evil, so I'm glad I've only got 3 days before I'm totally weaned off them. I'm tired of things not smelling or tasting right. I try & eat but nothing is nice. Constipation doesn't help (thanks ondansetron & pain relief, not).
I see my ro on Wednesday, it will be interesting to see what he says about the se's & how long they're going to last... Both my WBR & spinal rads happened so fast I feel I didn't get my head around it before it happened. So much for informed consent! Well, it's done now, so I will have to just deal with it.
I hope you feel better really soon, Mara (& I hope I do too!)
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KT, I hear you. I think of you too, having to deal with so much all at the same time. My steroid is done as of this morning. My sister in law got me some marijuana infused gummy bears to try and help with sleep. I tried one last night and managed about 5 hours which did help. I also went to my brother's to celebrate my nephews birthday, and surprisingly managed to eat quite a bit and it is not sitting too badly now. I took it easy (was mexican so did not go too spicy).
I really hope you can catch a break on your SE's too, sooner as opposed to later so you can feel human again. I will keep plugging away at my end. Now that I am off the steroid and hopefully sleeping at night in a few days, I will see how I feel. If I am still super depressed, or second guessing my WBR, I may have to look into antidepressants. I will wait too see how I am off the steroids. I had similar issues during the chemo when I had to be on them a few days. They day I was off them was always a black, crying fit all day kind of a day then couple of days later when out of my system, I did a bit better.
I am still scared shitless of the after effects, but am trying to tell myself to stop second guessing myself, I did the WBR, it's done. Hopefully I will have a good result.
Hoping we both can catch a break with our SE's and get back to the land of the living.
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Just learned that our brain mets sister Bourscheid, Lori Bourscheid, died on September 19th. 48 years old with two adult children. May she rest in peace.
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First brain MRI since radio surgery shows some significant shrinkage and signs of being less dense i.e cell death! More importantly no new spots, he will see me in 4-6 months. RO said everything looks as expected at 4 months. Feels like I can breath again. Whew
Hope everyone is feeling well today
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Great news Pagej!
Mara and KT, I hope your SEs subside soon. It's awful when you don't feel good on top of everything else.
I had my 6 month brain scan yesterday. It was NED. My neuro onc was amazed at how well my brain has healed from my craniotomy and Gammaknife. We spent a lot of time comparing scans from the past 18 months. He asked permission to use my scans in his teachings. I readily agreed. Next scan is scheduled for March 2017. If it's clear, that will be 2 years of clean scans and he said we can discuss going out to 1 year for future scans.
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Great news Goodie. You and SusaninSF give me some hope.
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Wow, great news Pagej & Goodie! Congrats
I'm seeing the RO today. I hope I get good news- no scans to look at tho
I can't wait to feel better. It feels like a long way off yet..0
