Brain Mets Sisters
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Had my first follow up MRI since starting Abemaciclib 6 weeks ago. MRI showed all tumors stable. So in comparing baseline scan done six weeks ago to yesterday's scan there was no change in my 12 tumors, no growth and no new tumors. I asked my oncologist if she could say definitively that this was due to the trial drug. She said that this was a short duration of time between measurements and we don't know how fast the tumors were growing so she can't say definitively, but she said she was leaning toward the belief that the trial drug was responsible. She said the definitive answer would come with the next MRI in six weeks. If I'm still stable at that time we can definitely say the trial drug is working. CT of body was still clear. So best possible news today. I neededthis bc man do the side effects of the drug suck.
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Kt1966. Thank you for your reply. I was hoping Taxol would keep working as long as it did for Shazzakelly.
How soon do they scan after the radiation to check for response.
You seem to have been dx with brain mets same week as me. It will be good to have someone going through the same treatment to compare progress.
Elizabeth2020. Is Abemaciclib a chemo therapy than can cross BBB. It seems in the Uk we have difficulty getting trials when you get brain mets. However i will google to see if they have any plans to trial the drug over here.
Take care all of you. Keep positive.
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Mutherflush, wow on timing, weird. Bummer taxol failed you too
I had another brain MRI nearly 2 weeks after the WBR finished. I don't know if that's standard, but I saw my oncologist privately & I guess he wanted a baseline again to decide treatment to the future. I'm having a CT as well tomorrow for a baseline for the rest of me I guess.
Vinorelbine starts Tuesday next week. I hope the MMM goes well for you.
Elizabeth, Abermaciclib was the trial drug here that I wasn't able to go on. I'm glad the scans show stable- hopefully regression soon to make se's worth it.
Take care all
(Edited for spelling!)
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MRI yesterday. The 4mm area in the cerebellum is 1mm bigger then it was 4 weeks ago. Will be put to Neuro MDT for Gamma Knife on Friday.
All the Dura disease has reduced dramatically since IT Herceptin was started.
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motherflush- Abemaciclib is not chemotherapy. It's a targeted treatment. While chemo can't distinguish between healthy and unhealthy cells-it just kills all rapidly dividing cells, a targeted therapy specifically targets the cancer cell itself. It's a CDK 4/6 inhibitor similar to Ibrance. However they know Ibrance does not cross the BBB. It's currently in clinical trial for breast cancer(ER+/PR+), melanoma and lung cancer brain mets. They believe it crosses the blood brain barrier so the study is looking at the three cancers that most commonly dev brain mets. I'm not sure why they are only using it in women in the trial who are hormone positive.
Kt-sorry you couldn't get into the trial. Apparently the qualifying criteria are hard to meet. I was almost excluded from the trial on two separate occasions. My MO said the trial has been open for over a year at many different cancersites and still hasn't reached the 200 participants they are trying to enroll. I was the first patient to qualify at my cancer center despite them having tried to get many others into the trial. The melanoma and lung cancer arms of the trial are closed as they have reached their particular quota.
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freekzilla- hope gamma knife kills that sucker and that IT herceptin keeps the rest at bay.
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Freakzilla, I'm glad the dura disease has reduced. I wish you well with the zapping on Friday.
Well done getting into the trial Elizabeth, sounds like you were lucky! I hope it works really well.
Take care all
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Thanks everyone, hopefully we get Gamma Knife approved without problem this time.
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Excellent Medscape article on young researcher exploring new approaches to MBC to the brain
Racing Against the Clock: The Life and Science of Priscilla K. Brastianos, MD
Free full text article, registration required.
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I called Mass General about seeing her (Dr Brastianos) as she practices as a Neuro-onc there. She doesn't take many insurance policies, I'm actually not sure she takes any insurance. A single dr visit with her (no testing, labs etc) is $2500. Kinda crazy.
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There's a lot of great neuro oncology programs in the country though, that would accept your insurance. I already go to one (Moffitt) and I'm happy with the way my situation is handled. However, if/when it becomes more complicated, I'm definitely going to look at a second opinion at a different center on this list:
http://abc2.org/guidance/find-care
BTW Elizabeth, I am thrilled for your good news!!!
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thanks bad, feel lucky it was stable but man the side effects are awful. Already so tired of the nonstop nausea
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Elizabeth, gentle hugs to you. I am angry that we get done something so promising but the side effects are so miserable. How's your counts holding up??
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Whydidit how could that be??? Bastards. Ask doc to beg, sometimes docs have to do a more work and ex[lain how did is important for you. It's called appeal. And even you could also write a fax to them. A lot of times it really helps. Good luck sweetie.
KT so far hate to tell you but I don't think it's working on Dani. But Dani has something, very aggressive and miserable. She is now having emergency Rads to the sacrum, bcs she had some numbness and they found there are 2 lesions right on top of her spinal cord.
She is now on Navelbine/Herceptin, I m afraid it's not doing anything. PET/CT a few days later. But her status is ER+PR+Her2+ so could i ask for the Abemaciclib? Would she be a candidate. I am so scare of what will appear in the MRI.Jen Becs makes a lot of sense. TM's were never indicative exactly of what was going on Dani. For the brain, they always rely on the MRI, then you will know more. You could ask for the report so you could read it yourself.
Becs so you are staying with Sloan? Who is your doc there? Are they nice? I heard over there it could go either way. But you seem happy.
Dani is scheduled next wk for the Brain MRI. She knows for sure the lesions in the skull are bigger and she feels them more. so right after MRI they will be doing raidation, but very limited. They seem so cautious. Bcs they say she has so many, they cannot radiate the whole skull.
You guys are the best!
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Hi kt1966. Were you given meds prior to wbr. I have been on low dose steroids and anti siezure drug.i have my first dose of radiation today. Not too worried about the treatment but the side effects. The meds im taking now already make me feel tired and unsteady.
Freakzilla hope everything went well on Friday. Good luck with the trial.
Elizabeth. Hang on in there.
Momallthetime. My thoughts and prayers are with you and Dani.
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Mutherflush, I hope radiation goes well today. The side effects don't show up for a while. I remember being told they build up over two weeks, then you start to recover. My se's weren't really too noticeable. Mainly fatigue. In fact I think rads helped me as I had more pain, nausea etc before them. I too was on dexamethasone & other meds (omeprazole & pain meds) for 2 weeks before I started WBR.
I'm now tapering off the steroids, down to 2mg/day instead of the12mg I started off on. Hooray.
I started vinorelbine (navelbine) so far so good. No premeds apart from domperidone & it's quick compared to taxol (6-10 minutes, plus about 45min for set up & flushes).
Momatt, I'm sorry it doesn't seem to be working for Dani. I hope they find something else that does.
Elizabeth, I hope you're feeling better.
Take care all
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Brain mets ladies, I have had 30 brain tumors zapped by the Gamma Knife. First, 2014 I had 4 tumors. Second, Dec. 23rd, I had 19 zapped, and April 2016 I had 6 brain tumors zapped all by Gamma Knife. I never did whole brain radiation.
My first rad oncologist said no when she saw 11 tumors, Sept 2015. I also had a lot of progression of cancer throughout my body. They didn't think I would make it, but I asked for a second opinion. I found a rad oncologist who had done Gamma Knife on eight tumors on someone so I met with him. He said no at first, but then I did a little research and sent him s letter with the research I had done. I followed the letter up with a phone call to him. He was reluctant, but said he would talk to a few other brain surgeons and or oncologist radiation doctors. I again called him, and I made a appointment with him. I said to him if he didn't do it I would die.
After meeting with him he said, a month earlier, he wouldn't have considered taking out so many tumors, but after more study he felt comfortable. Dec. 23rd, 2014, I went in for the Gamma Knife surgery and of course they did another mri (much more detail) and they found 19 tumors. He went ahead and zapped them. The next day, I felt great. No side effects!
April 2016, the rad oncologist found 6 more. It was worrisome to him in that a good size one was found in my brain stem. He was hesitant to zap it. I again said go for it.
I had a follow up brain mri a few weeks ago. No new brain tumors, and the one in the brain stem gone! My brain was clear of tumors!
Also, in April I began Kadcyla treatment for her2+ cancer. My last scan showed that all liver, lymph nodes, and most of the lung tumors have disappeared! In a week I have a PET scan. I hope the bones show remission. The skull tumors (I actually had lumps on my head) are just about gone.
So...no matter how much cancer is in your body don't give up. Keep fighting. Don't take no for an answer.
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Thanks for sharing Hindsfeet! You are an inspiration.
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Hindsfeet, This is inspirational.
So much can be done by Gamma Knife, it just shows all you need is a good specialist for SRS.
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You are an inspiration Hindsfeet. I plan to ask about Gamma Knife myself to get the rest of the tumour they could not take out via craniotomy. It was wrapped around a blood vessel. So small cannot be seen on MRI. I am very nervous about WBR though I am given to understand that it is being suggested due to it being same as breast which is IBC.
On a side note, all tests are in and I am NED from neck down. MO wants to have me on Herceptin as maintenance but she wants to make sure I can also get Perjeta in future. She mentioned that she may ask for Herceptin/Perjeta combo if my government will not allow Perjeta if giving Herceptin first. In my country and province, since we have free health care, it is not as simple as just adding a drug, it has to be approved by my gov't. If that fails, she will scan me every three months to make sure nothing shows up. She just wants to be sure I don't lose Perjeta as an option by simply giving me Herceptin. Fingers crossed I can have the drugs, am more comfortable with them coming in than nothing at all.
Still doing well from surgery. Only complaint is the water retention which is starting to abate a bit. Drinking lots of water and getting more exercise. I know with time that will subside. No issues from the craniotomy itself and we are not changing my anti-seizure drugs at this time either. Only if I have any more seizures going forward.
kt, am glad things are well with you.
I second that well wishes for Elizabeth to feel better and echo concern for Dani.
Hope everyone else is as well as possible and have a good week.
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Mara, my tumor situation was identical to yours....they couldn't remove some of it due to a blood vessel. The Gamma Knife zapped what remained and I've been NED since March 2015. I'm glad you are continuing to heal.
Sending lots of love to the rest of my sisters as we struggle thru treatments. You're never far from my thoughts.
Carrie.
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Thanks Goodie, I will be interested to see what RO has planned. My app't with him is Sept 8 and if it is not suggested, I will ask about Gamma Knife. I saw my followup MRI which does not even show the bit of tumour left. I will still need good reason to take WBR risk since it does frighten me to death and still no other lesions even though I know Susan in SF has done well and KT seems to be doing OK as well (from WBR at least). We will see.
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Hindsfeet so happy for you. Definitely we all have to be our own advocates. D's lesions feel exactly like you said "lumps" – today is MRI day! We'll know by Tuesday maybe, if the Navelbine did anything. D does not think so. She is usually right. Rad Onco already said she would not do Gamma, it's way too many lesions. Hindsfeel which state are you at? And thank you so much for giving everyone hope.
I know you are all wishing the best.
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Hi All,
Cant sleep because I am worried about my moms memory
Her recollection of words and her speech are slowly getting worse..She knows what she wants to say at times but cannot recall the word:(
I had posted a few weeks ago on the Ibrance thread wondering if this could be a side effect of chemotherapy.
Long story short, my mom has TNBC metastatic to the brain, lungs and bone. Last year in September she had a lesion to the Right temporal parietal area and small one a little off to the other side. The tumors were initially radiated with SRS, but in December, my mom lost motor strength on the Right and she basically had right sided paralysis as the bigger tumor in the right temporal/parietal area didn't respond to the initial SRS, caused massive edema and shifting of her brain...eventually my mom underwent craniotomy, spent almost a month int he hospital, went to acute rehab to learn to walk again, speak again..very difficult times, but by March she had recovered slowly and in April she was almost back to her usual self....
Things were going ok...
However, in last 1-2 months her memory, especially short term and her speech is deteriorating
I can notice it so much more as the days go by...She knows what she wants to say but can't remember the word, she's forgetting things...She can still walk, cook, takes the bus and is stubborn! but her memory, speech are not the same and getting worse day by day....
Her repeat MRI is this week and I am supper anxious and worried on whats going on...The MRI in June 2016 was ok....but since then is when the memory appears to have been getting worse...
She is Androgen Receptor positive so she's in a clinical trial with anti-androgen Bicalutimide and Palbociclib..
The oncologist thinks it could be from the radiation...
I was reading online that anti hormones can also do this...my obvious fear is brain tumors again...
If anyone has any input would love to hear....praying praying things are ok and her memory can get better
Thank you and God Bless
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Sorry about your mom's memory problems. She has been through a lot.
Unfortunately, cognitive problems can arise from all three things, chemo, anti hormonal or radiation. MRI could obviously rule out radiation necrosis or a new tumour causing problems. There can be later effects from the radiation coming to the forefront as now.
Here is a link to a site with some coping mechanisms and more causes of memory issues than I list. Obviously, consult all doctors to try to nail down a cause. Best of luck to you and your mom and I hope the memory stabilizes for her.
http://www.cancer.net/navigating-cancer-care/side-effects/attention-thinking-or-memory-problems
http://www.breastcancer.org/treatment/side_effects/memory_loss
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Thank you for this information I really appreciate it! thank you will update on what MRI shows and pray ...
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We got back the results of the Brain MRI, very disheartening. I honestly don't know where to start, it all got much worse. There are lesions large and small all over. Along ventricles. The Lamina, the C1 arch, C2, some are called Expansile/destructive lesions ( the words that they come up with), iccpital, the sphenoid, additional calvarium lesions, left cerebellar hemisphere,
Intracranial dural component. It got 10mm bigger from 6 wks ago.A dural nodule went up from 8/11 to 16x9, The left primary cortex,soft tissue scalp component (what does THAT mean??), and so on.
If I could ask you, where do we even start? We have an appointment 800AM tomorrow, so I have very little time to study this. But, I am afraid Rad Onco, will not want to do too much radiaton. She told us last time, she will try to zap some biggies. HOW do we stop this?? She is in talks with MO, I know that. I would like to push for some systemic treatment directed more towards the Brain. But which? Dani is on Herceptin, what is IT HERCEPTIN that I saw in this thread, is it different, how??
What else can I ask for. She will definitely do some simulation tomorrow, just that after this MRI I am not sure how much they will do. She mentioned SRS.
Any and all info is greatly appreciated. Hope you are all coming along.
Nanita I could feel your anxiety. It's extremely hard to see someone you love going through such a difficult time. Just keep hoping, keep the faith, let's hope for good scan results.
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IT herceptin is called intrathecal herceptin. It is basically herceptin injected through an Ommaya reservoir in the head directly to the brain.
From what I have found during my research, it is typically used for leptominingeal disease in Her2+.
Unfortunately Herceptin won't pass the blood brain barrier.
I wish I could tell you more about the other things found in her report. I feel for you both, from previous posts you both have been through so much. Hopefully when the RO and MO get together they can not only give you more information re the pathology on the latest scans and give more straightforward answers.
SRS is a good option for some lesions and they would probably want that done. There are chemos that will pass the blood/brain barrier as well for Her2+ including Tykerb. There are trials for Ont-380 and abemiciclib. Probably spelling it wrong. A couple of people on here have also had a couple of these drugs and should be able to chime in. SusaninSF also had LOTS of mets in her head and body and is doing well more than 2 years out. Treatments for brain mets have come a long way.
All my best to you both. I am still dealing with a new dx of a brain met myself. Meeting with my RO for the first time this Thursday so I will also post more as it comes along
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hello ladies
Did anyone else feel like even after 3 months post SRS for brain met, their body was just starting to detox the radiation? Any idea how long it really takes and if it ever really leaves our brain?
I do a lot of different herbs and tonics as well as lots of vitamin A in the form of paleo green powder and hope to help my body out some. I try to exercise 3-4 hours a week.. but some days I feel worse than I did a few weeks after rads.
My skin has been horrible too anyone else?
I know my brain is still healing and trying to rid itself of dead cancer cells. Would love them to be gone but my tumor was in eloquent area, so they are dying a slow death which I read is rather toxic to surrounding tissue and boy can I feel it
One day at a time- recent body scan shows I am still a brain only metster so there's something positive to hold on to.
Jenn
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I am also a brain only metster. Am hoping someone else who has done radiation can answer you.
My quick update.....will be getting 10 sessions of WBR hopefully starting next week.It was the only option offered so I will do it. Fi huggers crossed all goes well.
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