Brain Mets Sisters
Comments
-
Hey mara,
I hope your WBR goes well. I certainly feel better after mine. I too wasn't offered anything else. (We seem to have fewer options re radiation and chemo here in NZ)
Mutherflush, how's your WBR going? I hope you're doing well.
I'll be thinking of you both, anyway.
I'm doing ok, the vinorelbine doesn't have too many se's, I just feel a bit more tired & have low grade nausea (find myself eating a lot to try & settle my stomach! - luckily haven't put on weight).
Go well everyone
0 -
Good luck Mara! Will be thinking of you
I had 5 days of fractionated SRS on a 2cm lesion and all and all it was easy but as I was saying I feel like it takes so long to get rid of "it"...
0 -
Thank you for your responses. My mom is on palbociclib this new drug approved to use in conjunction with anti hormone. Like I mentioned though she is triple negative so Herceptin wouldn't be an option and I think she had SRS a lot of radiation done to the two lesions so not sure what the next step is.
Her speech is every day slower....I'm worried. Its either radiation necrosis or this stubborn cancer is back.
I'm praying....praying for all
thank you for your responses she sees her Oncologist 9/12 and rad onc 9/15 so will know then.Have a blessed day all.....trying to keep mind distracted until its time to see the doctors...
0 -
nanita daughter-
How scary. I'm triple negative too.. Haven't had my follow up MRI yet. Nervous obviously that the tumor won't respond to treatment
my dr acted like that wasn't even a possibility...he said he expects my tumor to be gone and if not shrunk way down in 3 months. He's an RO in the nuero department at UCSF so I just have to trust in him and in my own body's capability. But I know there are these other chances of things not going in my favor. I ask the questions and get honest answers.Wishing the best for next weeks appointments for your mom! It's all we can do is hope for the best
0 -
Thanks KT. Glad not too many SE. I understand keeping something in your stomach, empty stomachs can make nausea worse in some cases. I found that during my chemo days too. Glad to hear the WBR has helped you out. Not looking forward to being bald again but will pick up a wig at my cancer clinic. Not interested in being bald all the time again. I sometimes get tired of people looking at me with pity. I don't want pity, just slogging through treatment. Outside of one breast, it is hard to tell I am sick. I look better than some of the healthy people I know.
Am ready to get the WBR started. Had a little cry for myself once I signed up but it is all offered to me. RO gave me 80 to 100 per cent chance of dying without it and 60 percent chance of surviving with it.
My gut feeling, whether I am fooling myself or not is that I feel like I will not all of a sudden start drooling or loosing myself as I did not have any cognitive issues before dx with the met. Surgery went amazing and sometimes tumours are not able to be removed for people. Most of mine was taken and it was not in a critical spot for me. Hoping this bodes well this time for the WBR not to take too much memory/function. I don't feel there is another choice and will knock it out next week. Am being put on 4mg of decadron a day during the radiation which is not too bad. If I can't sleep for couple weeks, will go back to napping. Not too concerned since I survived on an hour or two at a time for almost a month between dx, surgery and weaning off after surgery.
My best wishes for PageJ and Nanita_daughter. I know how scary waiting for scans is nowadays. I hope all will be made more clear for both of you.
0 -
Hi all,
Hoping to vent and hear some thoughts...
I'm struggling to stay positive when talking to my onc, it's like he hates to see me optimistic and I'm beginning to consider seeing someone else ( he's been my onc for 3 years and he has always had the same statistical, cold outlook).
So a bit of a back story:
I'm 30, stage 4 w/ mets to bone,lung and brain.
Just had a 3rd session of gamma knife in a year and a half for one 6mm nodule. Everything went well and I'm ready to move forward and stay positive. Awaiting approval for Ibrancesince I had the brain progression on Perjeta and Herceptin- it kept everything below the neck stable. Insurance denied once since I'm her2+ BUT I fit the other two requirements of er+ and pr+.So now onc filed another request. Has anyone had this happen? Crossing fingers!
Anyway, so as he is explaining all this to me he begins throwing out statistics of how most people don't make it a year with brain mets etc etc..I'm like whaaaaaat?! First of all I'm not in lala land and I know how serious this is. I've had plenty of time to ponder over this since the first brain met in 2014. I also know that there is plenty of women kicking butt out there even when faced with multiple large brain mets and I also know the sad reality of some women not making it. Here we are discussing treatment options, I'm feeling positive because there is options and he is cutting me down telling me how with a treatment other than femara and ibrance i might only have 6 months without progression, then things will probably start getting even worse where we might not be able to control it and too much gamma will effect me in serious ways ( cognitively, motor speech). It's a bit frustrating how he is jumping the gun in this way, it's like he doesn't realize how he is coming off.
I don't know, am I overreacting?
Also, if anyone could recommend a treatmental option that worked for them and their brain met(s), that would be great.
Thanks a lot everyone,
Isabela
0 -
Only thing I can say to try to encourage you is that a lot of times it is a crapshoot. Go with how you are feeling at the time and go from there. It is all you can do. Herceptin/Perjeta don't cross the BBB so progression on your brain mets don't mean they failed if they kept you stable/NED. Hopefully your insurance will approve the Femara. My fingers crossed on that.
How you do will somewhat depend on how your overall health is and also how you are cognitively. If your RO/MO are causing distress, perhaps a 2nd opinion or different onc is in order. I think that may be easier in the US but unsure. Sometimes they are so focused on the science, they forget we are simply people who could use some encouragement. He still cannot really predict how you will do or know it would be 6 months til progression. That is what scans are for.
Good luck. Glad you are here. Hopefully some of the vets will be back to set your mind at ease. I am new with mets myself.
0 -
mygodisvow-I've been on Xeloda. It's a big gun but had worked great. I am not hormone receptor positive so you might have more options before this. I had to go off Herceptin due to heart issues.
Hang in there
0 -
Mara,
If you don't have any symptoms from your brain mets you shouldn't have to be put on steroids. I didn't take them at all. My RO said that as long as I didn't have any brain mets symptoms I didn't need to take them. Worth asking.
Hugs, Susan
0 -
Thanks Susan, I will ask
0 -
6 week MRI showing major shrinkage!!!
0 -
Great news Bad!
0 -
OMG Bad!!!! That's amazing! What are you on now? Abemaciclib still kicking my butt with side effects.
0 -
that's awesome Bad! That radio surgery is some powerful stuff.
I hope I can say similar next week. (Praying).
0 -
hey Isabela, in my opinion, it's time to find a new onc. I saw that your profile says Chicago. Where are you? Are you getting treatment in the city? I lived there for 14 years and was treated there initially when I was stg 2. I adore my onc there. I have since moved and continued to drive 5 hours to Chicago every 90 days to see him after my treatment ended. Now that I was just dx'd stg 4 I'm treated elsewhere but he remains a part of my team and I email with him regularly. When we found my brain mets, the very first thing he did was to tell me about a patient he has alive 10 years out from brain mets (she is Ned now). Though that's extraordinarily rare, I appreciated that the first thing he did was to try and give me hope.
It's hard enough to keep yourself positive, which is so important, without your oncologist dragging you down. And there are plenty of reasons for being positive too...look at Bads latest post....and I'm being held stable by a new trial drug Abemaciclib. Your oncologist does have a responsibility to be realistic with you and present you with facts but that is possible to do and yet remain supportive and realistically optimistic.
Elizabeth
0 -
Leftfoot and Mara thank you for your response..im glad i am not overreacting. Elizabeth, i am in Bartlett IL but do not mind traveling to see an onc that I trust. I ised to see a doctor downtown but when i moved to the suburbs it was easier to travel for treatments closer by. At this point i have decided that im going to toss the convenience out the window because i am so unhappy with this onc. When i walked out of the office and sat in my car i could not believe how hopeless i felt and that is contrary to my nature. Would you possibly be able to recommend him to me so i can set up an appointment? ( i will also send u a private message of thats ok) i really feel like this current Onc is dragging me down instead of making me feel hopeful.
Bad,
what treatment are you on now?
Thank u guys lots
0 -
hi kt. Got one more session on monday 12th and then move on to chemo. I have been ok. The tiredness has been the main issue.
I did vinoralbine and had a about six months before haviing to move on. As long as we have an option we will be ok.
We need to remember that we are all different. I believe that when our time is up the big guy in the sky will take us anyway. While we are battling through this period in our life all we can do id try to help those that are helping us. Do what we can to keep strong(we need to be strong to fight this desease). We can live for today but remember we still have tomorrow to plan for.
I wish you all a painfree weekend.
0 -
great news. Get my scan at end of oct. Hope my resultss are as good.
0 -
oh my 10 yrs and NED, that's truly amazing!
We all deserve a dr who can plant that type of hope in us. My RO is extraordinarily optimistic and I appreciate that.
Especially so soon after being diagnosed things can really go either way, might as well believe they'll go right!
No reason we all can't strive to have the same outcome. I know that's my goal.
0 -
Hate to always be the one to deliver this kind of bad news but just found out that our brain mets sister, kebab, Kelleigh Busse, passed away.
I hope she is in a better place now.
- Susan
0 -
So we went to the Oncologist today. Appears the less than one centimeter tumor has now started to swell causing necrosis? versus tumor progression. Not 100% sure but moms symptoms of memory impairment are due to swelling from that. Tomorrow we see neurosurgeon and Thursday radiation oncologist.
Trying to stay positive....I don't like giving false hope, but when I was 10 years old my best friends mom was diagnosed with breast cancer that metastasized to her brain....(I am 32) ...She had WBR and resection.
22 years later she's still around...!! living life to fullest... She definitely has side effects from the WBR she received, like memory issues but she's alive after all these years.
Every time I get anxious and scare, I pray the same for my mom
and pray for everyone here on this forum!In any case, not many answers today from the Oncologist, but hoping to get more answers from the neurosurgeon and radiation oncologist coming up...
Thank you all!!!
0 -
Sorry to hear about the radiation necrosis. There are options for treating it that I am sure they will cover if it is indeed that. There are surgical options (assuming the risk of removing it is not too high), there is study of using avastin to treat as well as simply treating the pressure created. There is also hyperbaric oxygen treatments that may be helpful. It is good that you will be meeting the neurosurgeon and RO since they will certainly be able to provide answers.
Speaking from only my own experience, when my brain was swollen before my dx, I also was having some issues with memory as well. Once I was on the steroid and swelling eased up, memory improved. Good luck to you and your mom, be sure to update
Susan, I did not personally interact with Kebab but had seen some earlier posts when I lurked in the Stage IV forums pre my own stage IV dx. I am always sad to hear of another member's passing and send my thoughts and prayers to her family and friends, especially here at BCO.
0 -
ladies,
I hate to be joining this club but it looks like I am like it or not. i was diagnosed 2B in June 2013 and had surgery, chemo, and rads. Enjoyed a few years on tamoxifen before having so called tension headaches that seemed likely to be that i.e. responded to ice/heat, Advil, distressing techniques, massage etc since mid June And when I brought up the BC to my primary care doc it was a resounding no that the tension headaches needed to be checked by onc. Then was on a birthday trip with my mother (70th bd), boyfriend, and 4.5 yr old daughter to Venice and Florence in Italy just returned Saturday. It was an awesome trip until the last day and I had a raging headache and nausea day of flight I was bad and just wanted to go home! My mom or boyfriend massaged my head constantly the whole flight while I was throwing up pretty constantly too awful hellish flight but arrriving at the er they wanted to do a CT just to be safe and turned out I had a 2x2x1 cm tumor which they performed surgery on within 12 hours (compared to the BC waiting for weeks and weeks for surgery it was different to say the least process wise) surgery went well the doc thinks he got it all. Path report is still out could be a primary brain lesion or my path could have changed over time but I wont get the report for another week or so. Was originally er/pr+ and her2- And stage 2B. Pooped but feeling better everyday and nxiously awaiting gen plan forward. Any advice would be greatly appreciated especially about treatments/issues that may come up at the path report meeting. THis site was so awesome when I was going thru chemo and those ladies and I still talk. This site had so much information and I look forward to being supported and supporting again all you wonderful people.
0 -
Thanks for the iinfo Jo's girl. My computer won't spell your name right, sorry. I worry a lot about brain cancer because it scares me a lot. I have a lot of mild head symptoms that come and go. No pressure problem. Lots of memory trouble. I finally have the nerve to ask my primary doc about it.Thank you all for sharing which gives me courage.Love
0 -
Thanks for the iinfo Jo's girl. My computer won't spell your name right, sorry. I worry a lot about brain cancer because it scares me a lot. I have a lot of mild head symptoms that come and go. No pressure problem. Lots of memory trouble. I finally have the nerve to ask my primary doc about it.Thank you all for sharing which gives me courage.Love
0 -
Sorry you are having to join us. Glad the tumour was removed. Surgery plus whatever form of radiation given gives the most promising results when it can be removed. You will be presented with different option. Waiting is definitely the hardest part. I can speak for my case where it took about a month between my craniotomy to remove my tumour (most was removed except for tiny bit wrapped around a blood vessel) to planning for my treatment. Do let us know what is offered and what you may decide to do. There are other more verteran brain metsters that will pop in if you have more specific questions on their experience with treatment etc.
In my case I was offered whole brain radiation since I do have IBC, my RO felt t his would offer the most benefit. So far the treatments are OK, have 6 more to go. I will lose my hair. Doc upped my steroids since I did lose appetite and slept for most of two days. He felt my brain was getting swollen and was not on big enough dose of steroid so fingers crossed this will help.
It has been hard, but I have decided not to give up because I got a brain met. Will hope that the radiation will kill any that may have been too small and move on since I have no cancer from the neck down right now. The treatment is doable for sure. Hard but doable. Only sucky thing is going bald again but will go one day at a time when dealing with that.
0 -
Mara I will let you know.
Anxiously awaiting the results and plan forward as I am sure you call can relate to. I currently have a regular onc so am looking for some neuro program as while I expect full body scans I have no symptoms of other mets (wishful thinking insert here). Hopefully I will be outta here this weekend. Boredom I guess isn't the worst thing but bored and being anxious not so fun. I had a naturopath during treatment last time Andy hope to pick that up again. The complementary therapies were so helpful. Hopefully will be again.
Best wishes to all of you!
Josee
0 -
Hello there.
Thought I'd introduce myself to the 'undesirable club'. I've been reading the comments on here for a while and finally feel I can join in. Initially diagnosed with primary BC in December 2013, I went through the gruelling treatment and soon after felt I was almost fully recovered. Then I received my secondary diagnosis in October 2015 - left front side brain. I was totally shocked, scared and it was as though every ounce of control was stolen from me in a very short space of time! After my brain op (which was successful), I temporarily lost the use of my right arm - getting physio for that and is somewhat better now, experienced a multitude if seizures all in one day, have had SRS twice and am now on Kadcyla. Treatment is working so far but am waiting for scans and results soon. Trying to be optimistic and patient.
At present, I'm not looking for advice (although I don't mind any) as I've read lots but just want to say how encouraged and inspired I am by all of your stories, experiences and knowledge. It's taken me this long to find a 'sense of normality' - please add a huge jug of salt to that term. It's difficult accepting what life has thrown my way, and despite my super supportive family and friends, I realise that this can be a lonely journey as well as just how much I DID NOT know about MBC. Even many primary BC survivor friends don't understand MBC so explaining that my treatment will never end is frustrating. I'm learning to hold back my anger... they mean well.
I'll say goodnight for now. Fatigue is sending me to bed. Hope I sleep once I'm there, haha. Am sure most of you know how difficult it is to get a good night's sleep!
Wishing you all a pain-free, fatigue-free, side-effect-free evening / night / morning... wherever you are.
Peace.
Dx Stage I, IDC right side, Pr- Er+ HER+ Dec 2013 - lumpectomy, sentinel node biopsy, FEC-Taxotere (changed to Paclitaxol) chemotherapy, 4 weeks radiotherapy.
Dx Stage IV Brain mets Oct 2015 - craniotomy, CyberKnife radiosurgery, Kadcyla.
0 -
Jos- I completely understand the wanting out of there now there feeling of hospital. I was exactly the same both stays. I did manage to leave 3 days after craniotomy. For me, it was more about getting to be in my own bed. Even with the steroids, I slept better since nurses did not have to wake me to test my cognitive skills (ie do you peel a banana before you eat it) or to check my vitals every couple of hours. Was nice to be back at home listening to my meditation/baby music I use to sleep at night. Hope you're out soon. Once things get in place for any further treatment, you'll be in better shape too. Least, that's what I found.
Lissa mine- don't have much advice to give since you have been dealing with this a lot longer than myself but will say that for now, though we have the suckiest mets, in a way we are lucky as we are not currently dealing with issues from the neck down. I always find myself worried for the people dealing with mets in more than one place AND the brain and wonder how they keep all the treatments straight. Sounds like you have it all covered. I do completely understand you about people who don't understand MBC and what it means. For myself, I am lucky in that my family gets it. Treatments until I am no longer here/can't take them anymore. Close friends understand too. Less than close friends/facebook people who say "you can beat this" at this stage, I do not allow to add to what I am currently dealing with. At some point I may show them the Holley Kitchen youtube video which gives a lot of good info to people who do not know but not now. I choose to leave that to the side.
My current treatment of whole brain radiation is now half done. Hair still here for now, skin still same colour. Had to up my steroids. Was started on 4mg total per day when started but on day 4 asked to see a dr because I slept most of the previous day and lost appetite. I knew that was bad and brain was probably starting to swell. I did think steroids were the culprit but in talking out with onc, we decided to up me to 12mg per day. I can still sleep on that amount. Once more week to go. Managed to get out for a small walk today and did my stair stepper for 15 mins this morning.
I hope everyone else has a decent weekend. Hope to hear from some of the vets as well. Hoping their absence means they are not dealing with so many SE's and that they are busy with real life outside of cancer land.
0 -
Many thanks Mara51506. Verykind of you to respond. My immediate family and very close friends totally get it too. Outside of that it's a very different story. For me, Holley K's video is one of the best visual ways a person has described what people with MBC deal with but like you, I've chosen not to push it under everyone's nose. I also feel very lucky as there are those who haven't anybody to lean on. And yes, having only one kind of mets to deal with is definitely easier... this perspective has been very useful. BC runs in my family - five of us on my mother's side (though none of us have the BRCA gene mutation). Mum had two primary Dxs (almost 30 years apart) and is fine now, two of her sisters - one passed in 2001, the other Dx after me but sadly now Stage IV - and my cousin Dx soon after that and thankfully she's been given the all clear. Fatigue is a major issue, getting off the steroids eventually helped and things are improving slowly despite being on chemo again. Feeling optimistic because treatments seem to have come a long way in recent years, are possibly less harsh (just guessing, I really don't know) and I have hope for all of us
Best of luck with the remaining WBR sessions. Take it easy. Enjoy your weekend best way you can.
Dx Stage I, IDC right side, Pr- Er+ HER+ Dec 2013 - lumpectomy, sentinel node biopsy, FEC-Taxotere (changed to Paclitaxol) chemotherapy, 4 weeks radiotherapy.
Dx Stage IV Brain mets Oct 2015 - craniotomy, CyberKnife radiosurgery, Kadcyla.
0
