Brain Mets Sisters
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Hi all. I've been lurking for some time after my wife got her first brain met in November 2015, which we treated successfully with SRS. Due to abdominal issues (liver/pancreatic mets have been persistent), her scans got bumped up. Long story short, we did not get the news we hoped for. One of her liver tumors decreased, but three increased, albeit less than 20%, so she didn't get booted from her A/A + ribociclib trial. However, we found out today that she's got a new brain lesion (still small at 4 mm) that wasn't there at the end of June, so now she's off the trial and starting Xeloda this week. We're meeting with the MO this week and will hopefully have something scheduled with the RO soon. Hoping we can just SRS this one like the last one. Can't help but be concerned that we push our luck with each new met.
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Hi Batfax. I'm sorry for the bad news you & your wife received.
Xeloda is good in that it crosses the blood/brain barrier so I hope it deals to the wee met. Is she staying on A/A & the trial? I hope your meetings go well & you can get something sorted out that you are all happy with. All the best.
Thank you ladies, for being here
It's so nice to not be alone, even for the small things like dexamethasone facial hair! I will have to go & peruse the pharmacy & see what I can find.0 -
Batfax, sorry to hear about another brain met. Every new one of course is scary. There are a few on here who have had many mets zapped, either by whole brain radiation (SusaninSF). There is also Hindsfeet who has had 30 mets zapped by Gamma knife so they can be very treatable, though I agree, more showing up can be very discouraging for sure. Hopefully, the new one is not causing her too many issues ie balance, swelling etc. I am sure your team will be on top of it. Zap it so she can keep going. As KT pointed out, Xeloda does cross the BBB as well so can be a helpful drug that way. You may want to ask about whether Gamma Knife would be appropriate or offered to your wife as it can open up the BBB as well to allow other chemo drugs in too. Hindsfeet may know more about that as well. Best of luck to you and your wife.
I have only had the one so far but I expect at some point will have more to deal with. All I can hope is that they don't cause too many neurological issues and I stay intact and stable from the whole brain radiation (my only treatment option offered to me). I am still building strength. Seeing my MO on where we go from here since NED from the neck down.
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KT and Mara, thanks for the encouragement. So far no symptoms--both were discovered prior to any issues appearing. I'm hopeful that this new met can be zapped like the last.
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Batfax, so sorry for the new met.Interestingly, Dani also has mets to the liver, and mets to the so called a whole skull, of course pretty much all bones, and now it actually entered the cerebellum. I don't quite understand how we had 2 official visits with a top RO and they wanted to procrastinate Radiation.
The feeling I got, is that oh she has so much going on the don't wanna mess and Radiate the brain also. But the tumors seem to have a life of their own, and just growing and growing.
She was added today to Xeloda, awaiting approval. But, the Batfax so many ladies with Her2- are on Ibrance/Letrozole, did they ever discuss adding that also? Many seem to have a great response.
The numbers don't seem better and she knows she's got more stuff. And after seeing a top NEURO ONCO and having him discuss the situation with RO, today in kind of an urgent matter, they did the simulation, and they gonna radiate a bunch of lesions. Some are painful, some are pushing against the skin the head, some are pushing into the Dura. So NeuroOnco wanted WBRT, but RO is very hesitant, and it was decided it's gonna be SRS, 10 treatments. In a way I am glad, I remembering reading what Mara says she is going through. Now with so much SRS going on, I am just thinking what will be the SE's. When she had Gamma in like 10 different small areas, she did not have SE.
I think it's for sure wise to zap it as you go, I think they allowed many of the lesions to grow, because they felt bad for her being so young, and they kept stressing about loosing the hair. Today, at the visit, I said I wanna make it very clear, that she does not care, and Dani agreed, she said she has a gorgeous wig, she wants her life. Period. I am very concerned for the liver, so was Onco. The only way would be new scanning, too soon.
Mutherfl you are a doll. Thanks.
Mara how are you coming along? I sure hope we are doing the right thing by choosing SRS, the WBRT would make more sense, but I'll be honest if they don't feel comfortable doing it, i feel we will have less SE. I hope.
Warm hugs to all
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Momallthetime-
Xeloda was the drug that cleared the cancer from my liver. My brain followed suit.
I will be envisioning it doing the same for Dani. The same goes for her SRS treatments.
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Momatt, I am still here. Still exhausted but able to run my errands. I am working on not second guessing my WBR because it is done. Given that I also have inflammatory breast cancer with grade 3 tumouir, it is extremely aggressive and grows fast. I can understand why that was the only thing offered at this point. I was not willing to chance surgery only. I will go day by day and hope I do not lose too much memory etc. I will choose to hope to recover as well as say SusaninSF or other ladies who have done it and done well. I believe there is someone on this site, MemaSue who did well too it seems.
As far as my own treatment goes, I am getting scanned from the neck down again and a treatment plan will be put in place. Since my government has to approve the drugs used. My onc wants to use Herceptin since it was still working for me. That would be first option. She is worried that government may not approve herceptin only or take away the option to use Herception/Perjeta later if we just go with Herceptin. So will be one of three options. 1. Herceptin only. 2. Herceptin/Perjeta/ and Taxol for 6 cycles or 3. Scan every three months ( don't like this option ). I should find out later in November.
Still not working, probably will take time off til Feb since I am not prepared to take on stressload of taking customer service calls where people scream at me due to their cell phones. If I can't go back by Feb, will likely just quit at that point. If my treatment and recovery from WBR allows for it, I can always go back sooner or I may choose to leave. Not sure yet.
I still think about you and Dani. Do try to remember with the WBR that there is not always a terrible result. Google searches on people who have gone through it will usually yield terrible results. I also know there are people here dead set against it due to some of the late effects that can happen. I still fear those but since there was no other option offered, I chose to take it. Remember that when things are going well for people, you won't hear from them since they are out living life. I fully respect everyone's view but if WBR is offered and nothing else, it can have a good result too. I also understand the SRS and Gamma Knife preferences since they target only the lesion. Good luck with everything and hope whatever Dani decides, it works as long as possible.
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Momatt, I am still hanging in. Not back to work yet, may not go back. Still waiting to find out how MO wants to treat me from the neck down. Could continue on Herceptin or she may move to the Herceptin/Perjeta with Taxol for about 6 wks. Depends on what my government approves since it is free health care. Won't have any brain scans for a while yet since it may not show anything yet. Will definitely be asking if nothing done by the time I see RO in december. Still exhausted, never feel hungry but do eat. Things taste fine once I am eating. GI issues are settling down. Exercise is a challenge. I know it is good for me but hard to find the energy. Have never been so exhausted, even during my chemo days. I still go out though, cannot stay in bed.
Hope things settle down for you and Dani soon and that Xeloda kicks the cancer's butt. Since it does cross BBB, it can definitely help keep the brain clear. Good luck, my thoughts are with you.
KT1966, hope you are feeling better from the 2nd round of rads and that they improve your balance and that your exhaustion is starting to lift.
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Also momatt, in my case WBR was given as treatment since my cancer is inflammatory breat cancer, Her 2+ and grade 3. Since it is s o aggressive, the prevailing thought of my RO was that this would give me the best chance at a longer time before progression. Would be nice not to have to deal with any other brain lesions but I don't expect that.
I am scared about the late effects ie memory loss etc but don't want to get brain damage from a bunch of tumours. I am gradually making peace. I was not offered another option either due to the aggressiveness of the cancer. Best of luck for Dani.
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Mara - Dani is also HER2+ and grade 3, and the Luminal B, the whole 9 yrds. I don't quite understand how they let the tumors in the skull, brain go on for so long, they were constantly pushing it off. They were so concerned about her hair loss. Finally on this last meeting on Thursday, i used plain English, and I said: let's be clear we appreciate all concerns about her big patches of hair loss, but her life is more important and she has a beautiful wig waiting for her blah blah. Really?? Im telling you,of course I want empathy, but i really feel that her age kept them from going ahead with it. Drama solved, she will have what they call IMRT. FINALLY!!! she has lesions all over her skull, so....And yes, thank you, let's hope the Xeloda with Ixempra does something. She had Xeloda a long time ago, but by itself and it did not have an effect then.
Leftfoot thanks!
So your secrets about Xeloda? Any good tips?? Friday I spent begging Ins to get going and approve this thing, so she could start the therapy. Six pm, they called that they will deliver it!
Jos do you know what you are dealing with already? Batfax? KT what's up?
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Hi everyone.
Momatt, I'm so glad they are finally doing something new for Dani! I hope it goes well & does the job. I had xeloda for a while. Make sure she takes it with something to eat. Hand and foot syndrome is a possibility (red, cracked skin etc) but keep it regularly moistured with something like Udderly Smooth.
I hope you continue to improve too Mara. My appetite has started to come back, I have to watch I don't get too greedy! Thankfully I'm weaning off the steroids so that should help (it's still going to take over 3 weeks). I managed a walk (1/2hour) on a windswept beach today, exhausted now.
Still get double vision and occasional wobbles etc. Worried about brain function/memory like you too, know I'm not up to my usual speed. (Btw, that was my 3rd lot of rads! No more I think) Back to chemo on Tuesday.
Take care
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Aww KT you are such a sweetie, thank you. Yes, I am glad too. You are having all these symptoms from SRS? I wonder if she will too? She is having something called IMRT, similar, but from what I gathered, they could play around more with the strength, who knows. It seems the treatment plan is 10 times. No steroids, she said she does not want it, they seemed ok with it. And she has to have stuff to the mandibular area also.
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Not sure what the symptoms are from.... I may ask at my assessment. I'm hoping they do go away.
My treatment seemed pretty basic- not targeted just aimed at first my whole brain, then T9 to sacrum, then T8 to base of my head. Maybe there are floaters drifting around or the mets are still shrinking etc affecting nerves???
Targeted radiation sounds better to me.
I hope it all goes well
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ladies,
Been catching up on all the posts. momallthetime I am so glad they are starting something for Dani. I am 38 and they are being very thorough for me and aggressive. They should not be worried about hair loss I agree with you. Sometimes you need to be very clear. They say patients hear what they want but docs do too (we are all human) so being clear is best. Wish you all the luck with the new treatments. Dani is lucky to have you advocating for her and taking on some of the exhausting items (fighting ins).
KT and Mara. I am glad the side effects are subsiding. You've been thru a lot - I've got lots of admiration for you both.
As for me still not on any treatment and anxious! I have a meeting with the breast onc at mass general (Boston) to talk clinical trials and then hopefully be put on something! I start 3D conformal radiation to the tumor bed area on Thursday as well for 12 treatments. There is a tiny area on my most recent MRI that they think is surgical inflammation but could be residual /reoccurrence so the radiation will obliterate that if the latter I hope. Otherwise more like insurance to prevent reoccurrence in same area. They talked to me about all the types (great docs - spent hours between the two describing it all to me and answering my questions) SRS, gamma, cyber, IMRT, 3D and ultimately due to the tumor bed size and desire to preserve as much neuro function went with the 3D. This is the same type I got on my breast after the lumpectomy. Seems odd but after they explained it seemed the most beneficial both for reoccurrence and preservation of normal tissue but still comes with a ton of side effects. My bone met is starting to give me more pain than aches now so pretty sure rads for that spot will be needed. I really wanted to wait and see if the systemic treatment would make it better (help emotionally as well to know it's working) instead of doing rads. What do you all think?
Also I'm not eligible for any of the brain met clinical trials because no active brain mets but they are doing a targeted gene test on the tumor (can't remember the exact word for the test) so that if they come back that will be done and maybe narrow down the 'ideal' treatment. Takes 6 weeks or so.
I have to say my first go round with this I went through 4 MOs before I found someone I liked / trusted. This time the team at MGH combined with my local MO are just awesome and thorough. They are fitting me in everywhere which scares me but also tells me they are taking me very seriously. I have a lot of confidence in them and that is reassuring in this whole mess. The doctor/apt fatigue is pooping me out though and I will be glad to get a steady treatment program initiated. Pretty sure they are looking at lupron to put me into menopause before they can start an AI and not excited for that!
Josee
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Momatt, I agree with KT. If SRS is what is on the table, I am glad Dani is going to take it. I would have had no hesitation in accepting that forum if I had been offered. When SRS is done, it will target the lesion, leaving the other brain matter alone which is always best. WBR is always out there if she should ever need it in future. My thoughts go with her.
Josgirl I understand wanting to see if systemic will stabilize the brain vs radiation. Personally, only speaking for myself, I would be more comfortable with radiation just due to how fast some of these things grow. You are also going to have something that preserves your brain as well, so if ever needed ,WBR can also be on the table for later.
I am gradually feeling better, back to eating too much. (Can't blame it on steroids either since I dropped them Sept 26.) Still really tired but I am going out regularly running errands. Sleeping well at night. Won't be going back to work Nov 1st though. Have to see what next stage of treatment is for the neck down. Getting CT scan/bone scan to make sure am still NED. Will get treatment plan from there. Hoping can just do Herceptin still, it kept me NED before but depends on what my government will approve since now I am stage IV. Will find out shortly. Working on trying to exercise, is still hard to find the stamina.
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Josee, it sounds like you will be getting great treatment. I hope it goes well. I know it's hard waiting though. Once rads are done I guess you'll get that systemic treatment, which will be good.
(I wish we had more of your treatment options here)
Mara, I'm glad you're starting to feel better. I hope your CT scan is good. I hear you on eating & exercising
I'm still not sleeping great thanks to the steroids though. Saw my onc yesterday. Spent about 45 min with while he looked for trials & rang around etc- nothing- all closed or not suitable
So I'm starting methotrexate with cyclophosphamide on Wednesday. It's oral this time, so I'll have to hope my brain is up to remembering which med when etc.... At least I don't have to drive an hour each way to chemo (or be driven as I'm not allowed to drive) I'll be having another baseline CT to see where I'm at. My onc feels that vinorelbine failed me as I had progression in the short time I was on it, will be interesting to see what's going on elsewhere.....Thinking of you all, Momatt, Dani, Mutherflush, Batfax and everyone else
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Kt, I am glad to hear you can at least avoid having to drive such a long way for chemo. May the methotrexate/cyclophosphamide do some good for a longer time and beat back any other mets. Hopefully, without the drive, that can help the radiation energy drain.
I am not having a great day today. My left ear kept plugging up and could not hear. I have had a cold, so I more blame that than the radiation. It does not make it less annoying. Still super tired but that is too be expected I know.
Good news for me is I did get approved for my Canada Pension Plan disability. I am still awaiting the Disability through my province which which should shore up the shortfall in the CPP. My disability claim on my bank loan is approved as well. Will have have doctors fill out another form come January. Thank goodness I got that insurance on the loan pre sickness. Never would have thought would have to take something like that out.
I honestly don't see myself getting back to work but won't fully quit yet. Extending my leave to Feb 1st. If I cannot get back by then, will let the job go. We will see, working is not my priority right now. Just want to feel human again.
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Mara, so sorry, you will have this ear business checked out if it does not get better. Take good care.
Jos I don't understand what 3D means? She was approved first for WBRT and doc did not want, and it took them a whole week to approve the IMRT. Never mentioned 3D. She also has to hve Rads to the mandibular area (not the first time), but that needed a separate approval, so she had to go in again just for that scan. But they won't radiate the rest of her bones, it's so many lesions, they will only do when is terrible painful or as in the case of a few weeks ago when she was getting numbness of the leg, and after emergency scan it showed that the sacrum was being crushed or something like that. So she had 10 treatments of Rads for that. And of course she is coping with the liver mets, which did not seem to get better yet! So now she was added on Xeloda, Herceptin (when they don't forget to give her) and Ixempra (Xgeva every 4 wks).
KT glad that at least they gave you something. You should know, even here, Ins person as I said told me that i am not sure how and if they will Insure future treatments. It's insane! And no paying for Clinical trials? Is that true? She did have a blood test for Genome done, FoundationACT, and it showed a new Genomic Alteration that did not show on the other Genome test, it's the KRAS mutation, yucks, doc said that ppl with pancreatic cancer have this, hmm, did not explain more. But the clinical trials for that specific type is closed, at least in NY. SO she started her on Xeloda.
I think there is much that I don't know, I need some time to think, it's that my brain is mush at this point and it's so hard for me to get all the info. I would love to speak to an Onco that would literally explain and guide me. This Onco is fine, she is on top of things for Dani, but she has no time to explain it all, and certainly not to hold my hand. So it goes...
Hugs and more hugs to all
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Hi momatt, I am feeling better. Cold is behind me, ears are not plugging up anymore. Getting more exercise so it helps to feel a bit better overall. I would say I am recovering as well as can be expected after the brain radiation. I am able to run errands, have appointments as well without much trouble. Eating is still going better too. GI system forgiving me after such a long time on the steroids.
I still have a bone scan and CT scan next week to get through. MO wants to make sure am still NED from the neck down. She will then see me to let me know what treatment she wants to give. I have 3 options she mentioned. She wants to do Herceptin only since last scans showed it was successful from neck down. If government will not allow that as first line treatment, she will give me Herceptin/Perjeta/Taxol instead. She was worried my government would not approve Herceptin only without taking the Perjeta off the table. For anyone not familiar, Perjeta targets not just the Her2 protein but Her1 through 4 as well. Her 3rd option offered was doing nothing but scanning me every 3 months, though I don't like the idea of just waiting for mets to show up. Which I am sure they would since there were brain mets, I am sure they can travel throughout my body. The brain was bad enough, I would like to hold off the ones in the body as long as possible.
Thinking about you and Dani all the time. She has so much going on at the same time, surprised you can keep it all straight. Glad to hear she has Xeloda in there too. Hope SE's are not too bad. How is the Ixempra, other threads seem to show it being a pretty tough chemo. Hope it is not too tough on her. Keep us updated where you can.
KT, motherflush, Batfax, everyone, hope to hear updates soon. I am also concerned about agness as well.
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momallthetime you have every right to be frustrated and overwhelmed. MBC is such a different ballgame than lower stage due to few good / too many lets try this options and in many cases a lack of decades of research so it is very confusing and overwhelming. But we hang in there and this site has always been so helpful both for comfort and information. From my understanding (and I am pretty overwhelmed myself) IMRT and 3D are Lowe dose radiation (for those who had rads to their breast after a lumpectomy it was likely 3D. SRS and the "knife" tykes are high dose. The IMRT I believe is a little more precise if you're doing a smaller are but not sure. My tumor bed was pretty big (radiation wise) so they'd opted for 3D (I think it may also be faster in terms of mapping). I was recommended to do xgeva too but need to see my dentist before I start. I will be doing 12 sessions of rads (2 complete) then start femara and ibrance. Got my lupron shot yesterday and last period for the rest of my life today so I am crampy and irritable and who knows what else. But glad systemic treatment has started. I'm not her2+ so no experience with those options. Thinking of you al Dani.
Mara glad you're feeling better! Little steps...
Kt glad you don't have to make that drive so often. I know the trips take a lot out of me and add to my fatigue. I've heard good things about methotrexate se being pretty tolerable.
Hugs
Josgirl
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Momatt, I hope Dani does well on the xeloda (I found that reasonably doable) I can understand the confusion & brain mush! Thinking of you both.
Mara, I'm glad you're feeling a bit better. Good luck with the scans.
I hope your cramps settle Josgirl- just think no more after this
Great feeling to be in treatment too, keep on top of those nasty little cells. It's a long weekend here, I can't believe it's actually been lovely sunny spring weather for the first 2 days! It has been raining mostly for weeks. It's so lovely that I'm not going to spoil it to ring about something that's happened a couple of times in the last few days- the right side of my faces pulls up, just for a minute or 2 & I've been getting more double vision. I really don't want to have to go in to hospital, so I'll wait till Tuesday to let them know.
The chemo seems ok so far, tho I'm quite tired. No nausea or anything.
Have a good weekend, kt
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Kt, glad the weather is nice for you. Can't blame you for not wanting to call the hospital when you are enjoying the weather. I am sure you know when an emergency would be and if you are not having an emergency situation, of course you should enjoy your weather.
Hopefully the symptoms you describe have more to do with inflammation than with any new mets. Perhaps that's all it will be. You have had a LOT of radiation last little while so who knows. I hope the symptoms don't keep troubling you or are controlled with steroids. Good luck. My best to you for sure.
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KT how are you feeling today? I hope you will get better by Tuesday for sure. Who has time to go to the ER, you are so right. But maybe, you could go in on Monday so you could tell them about it? Dani, had something similar, of course one cannot know if it's the same thing just through this writing, she had an MRI, and after RO and surgeon had a real closeup of images, they found that the Trigeminal nerve was being touched, so she had GammaKnife and at the time it was resolved, now she has a bit of numbness on the side of her face, but it's a year after that episode.
Hey Mara, so glad for you. It's a long road, but your patience is paying off. I agree, that if at all possible to be on something. Herceptin, is supposed to be very good. Interestingly, Onco does not wanna add Perjeta to Dani's protocol. I even asked the last time and she said no. About the Ixempra, no it has not been too hard. The Xeloda is a real biggie, it better work.
Josgirl, Dani had an oophorectomy/hystero she just did not wanna deal with it. At the beginning, she did the Lupron, but at mets that is what she choose. Yes, in a perfect world, she did wanna have more kids, but she was told she would have dif choices if she did this, and the Lupron/Tamoxifen after chemos, itself obviously did not work for her, she got mets. For me it was devastating, and I was very worried with all the menopausal stuff, she had it done laparoscopically. Menopause symptoms got a little worse, but she did it. (I am not advertising for it, just telling you what she did)
After thinking of your explanation of each tx, even after I had looked at it in the internet, but I started thinking, and lo and behold I spoke to Dani today and she tells me that the day they started tx, I was not there, they told her she will have the 3 very large lesions done and the mandibular, but not the rest. They feel they want to get to these other places when and if it gets bigger, or painful. She does feel pressure on her whole skull. Is that is so many, and RO really did not want to do WBRT. I agree that is tough, even more after reading what Mara says she is going through, and Dani having to take care of her children, but I am disappointed they are not doing more.
She had Gamma done in the past. And you say about understanding this whole thing, you are right, because she does have a large tumor bed as you said, so I gotta wait till some time this week and I will try to ask RO what's up, in a way they are so concerned with her QOL.
There is a great thread of Ibrance, you will love it. I've been there too, Dani was on it already. It's good stuff this combo, best of luck.
Take care everyone,
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Hi all.
I hope you're all doing well.
I rang the oncology clinic about my symptoms yesterday & they asked me to come in today. I had a neurological exam (no scans or anything) & a chat about it all. I'm thinking inflammation too (weaning off steroids) or floaters in my CSF irritating nerves or something like that. They were quite happy that nothing was too off & let me go after a couple of hours, but then did ring me later to see if I wanted an antiseizure med because it may have been a localised seizure. I don't want more drugs at this stage... If things suddenly worsen I have to go back in.
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KT, glad to hear there was nothing else found. I don't blame you for not wanting any more drugs. I can see from your updated profile that you ahve a couple of new chemos added. Hope they deal with your mets further. Many hopes that your symptoms subside some soon.
I am doing OK at this point, get the odd headache but nothing too bad. I would think surgery/radiation would be enough to do that. Appetite is getting better and getting some exercise each day. I am presently being scanned bone/CT to make sure I am still NED from neck down. I certainly hope so. After scans, I will then find out what kind of treatment I may get later.
Hope everyone else is doing well. Worried about agness, hoping she is just taking a BCO board break. Have not seen others either. I can understand taking a break from the boards here and there though. Take the mind of cancer or just busy living life.
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KT i don't quite understand them not doing any scans to see if something is pushing into the wrong area and giving you the choice if you wanna use steroids or not? maybe a seizure? Just wish you feel better soon.
Mara i guess so much is always going on, I actually have anxiety when I cannot get to the boards, but of course I have just been away a few days, I only have access at my computer, so I actually have to be sitting down, and that's another story. It turns out they are radiating less areas than I wished for, but they are very conservative and only those that are very large so gotta hope for the best.
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momatt, I hope all goes well for Dani's radiation. I can understand them focusing on the large ones since they can cause the most swelling/problem if pushing another part of the brain. Best of luck to her and to you too. Good to hear from you.
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Hi all,
I hope everyone is having peaceful, pain free weekends. As I was catching up on some threads on BCO today, it occurred to me that we haven't heard from Ann (agness) in awhile. I pray all is well with her. Has anyone heard from her?
Much love to all.
Carrie
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I hope she is just taking a board break myself, but I have not heard from her either. Had asked about her earlier but not heard anything.
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Hello kt1966,
I have been following the posts with interest but often am too tired to post. Finished wbr 2 months ago and felt sleepy a lot as well as loss of appetite
which I understand may be the expected SE. A lumbar puncture showed few atypical suspicious cells for which MO wants to do intrathecal MTX, Was your MTX oral, IV or IT?
How did you tolerate? Thanks for your reply since this is all new to me. Also my platelets are in the 60-70,000 range so I cannot get chemo. Anyone know to raise platelets?
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