Brain Mets Sisters
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Hey ladies, hope everyone is doing well. Thinking of all of you, trying to keep up with where everyone is at these days. Bad, good luck with the new drug and with your search for an onc. Agness, glad you are finished with your rads, sending best wishes with the IT chemo, I can only imagine how hard that is. Becs - thinking of you, I was sorry to hear about your brain mets. Bosco - best wishes to you too with both the IT chemo and erubulin. Did your platelets bounce back? Did you end up getting a transfusion? For what it is worth, I had a great run on Erubulin, very low side effect and it kept me stable for nearly a year.
I'm hitting a new chapter I think - apologies in advance for rambling as I think through this. I'm overdue for a brain scan, but I don't think I'm going to have it...I think I'm done. My liver mets are huge, I think they're getting worse, and I'm out of treatment options (aside from a hail Mary clinical trial, which doesn't sound too appealing), so what's the point in even looking at my brain now? I'm not sure I'd do additional brain rads if they found something, and most likely, they will find something.
On the other hand, maybe I'm being overly gloomy about how much time I have left. I need to have a heart to heart with my onc to get her assessment because, in spite of my massive liver mets, my liver function continues to be miraculously normal. If I continue to live for another 3 months or more, I'd hate to develop worsening brain symptoms that would decrease my quality of life, especially at the very end. If there are little buggers up there now, which there probably are, we could possibly zap them and keep them quiet versus allowing them to get bigger and cause trouble.
Regarding the clinical trial, as I said it does not sound too appealing right now, but maybe I shouldn't write it off. We ladies with brain mets have such a difficult time meeting eligibility criteria, so maybe I should give it a shot for the greater good, knowing it might help someone else down the line. The trial is at Seattle Cancer Care Alliance, which is local for me. It doesn't open until April, so I obviously have to still be alive by then, but it involves some sort of immune therapy. It is phase 1 clinical trial so they will only enroll 3 breast cancer patients. Frankly, they'll only enroll patients like me who are at the end of the line and have no options because the trial might kill me sooner than the cancer. I'd be pretty sick from the trial protocol before I'd get any potential benefit and even then, it is a long shot at best.
Thanks for letting me ramble. If anyone has thoughts or opinions, I'm all ears.
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hugs Nancy
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Nancy, have you examined this trial? My impression is it is still open:
This is one participant's report:
https://www.inspire.com/groups/advanced-breast-cancer/discussion/holding-out-for-ned/
Hugs, Nancy...
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Well crap. I hate hearing this news. I don't mean to sound like a creepy stalker, especially since I'm new to the mets board, but I have followed your story since I feel like we have a lot in common (initial Dx at a very young age when still really wanting to have a family). I was really happy that you seemed to be getting a response from Abraxane.
Anyway, I don't have liver mets and have been lucky to so far be pain free. what you are going through sounds so painful. This sort of stuff is really such a personal decision, especially once you are talking about the sort of pain you are having,so I certainly don't want to overstep, but these are just some ideas off the top of my head.
1) I remember you mentioned once that insurance didn't approve you for Doxil and you ended up retrying Adriamycin. Could you take another run at your insurance to try and get approval? Or are Adriamycin and Doxil too similar to try so close together?
2) Would there be any point of trying to see a liver specialist and trying a drug for liver cancer? I have no idea if that sort of stuff works on liver mets and liver cancer itself is a bit of an orphan cancer,but I know melanoma and lung cancer drugs have been used for MBC. Just trying to think outside the box here.
Hugs to you
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Nancy - hugs. Maybe you can try Opdivo off-label. They have been using it off-label for primary brain cancer and it has been showing results. The PD-1 immunotherapy options are also showing results better than expected in late stage disease.
It would have to be compassionate use, unless you can get them to agree to off-label.
There's a gal on inspire who was sent to hospice with liver mets and the drugs they switched to worked and it is four years later. Until you have uncontrollable ascites I'm not giving up on you, and even some can go a long time managing that
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Hi All. Hugs and positive thoughts to everyone. I will read through all of your updates tonight/tomorrow and try and respond to everyone. The last few days have been a total whirlwind, so I haven't gotten a chance yet. It is not an easy road that we travel on, but while strangers, I now consider you my friends and potential lifesavers.
Yesterday I had a pet/ct (that was previously scheduled) to see what else was going on in my body and then went right to meet with the radiology oncology team. They were able to read the scans right then and there, and everything from the neck down is NED!! So that was awesome to hear and actually helped form the treatment plan. Originally since I had 6 lesions they wanted to do WBR, but after really looking at my case, they changed it up and scheduled me for SRS. I went today and got a detailed MRI and fitted for the mask, and then have the procedure next Thursday. It is amazing that in a course of 48 hours I went from total doom and gloom to totally optimistic. My MO actually called me directly after getting the final read of my scans and started crying tears of joy for me. I feel like I can actually sleep tonight (despite the insane steroids I have been on).
Interesting note: The doctors noticed that while scattered, all 6 lesions are the exact same size. They speculated that it means that they all migrated upwards during the same time frame. I had switched treatments in August from TDM1 (Kadcyla) to herceptin in August and the docs think the treatment switch lines up with when the lesions might have moved up. So they think that it was just a weird fluke thing and that the SRS should be able to zap them.
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Fist pump here Becs. Sooooo happy you can do SRS and that you are NED below da head
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Thanks, ladies. I had a really good talk with my onc today. More than anything I'm coming to grips with the bigger question of when and if I might stop treatment, even though my immediate focus is my overdue brain scan. I've been in the scan/treat/repeat mode for so long it is hard to shift gears and deliberately not have a scan. Anyway, she agreed there is no pressing need. We're staying the course for now with my current chemo, probably run markers next week to see how things look and we'll carry on from there. I've been incredibly fortunate - over 6 years with extensive liver mets plus 4 with brain mets - so I'm truly one of the lucky ones. Thanks again for your support, you gals are awesome.
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huge huge hugs Nancyh. I also see you as an amazing example of how to live well with this & I've learned a lot from you during my two years - thank you for helping me.
you are an exceptional responder & I can't help but think that stacks the odds more in your favor. I love Agness' story of the woman who's at 4yrs & counting since going on hospice and while stories like that are the exception, we know it does happen. hmmm, another recent incredible turnaround good response comes to mind.... (I'm looking at you, Becs.
you just made my day!) nancyh, it appears you're examining all of your options - not easy & I can't imagine how much more difficult it must be after all of these years. sending you more hugs. I'm relieved you had a good visit w/ your onc - seems invaluable. sounds like you are keeping an open mind and making a thorough, realistic assessment of your options. I don't think there's a better way to go about making a decision & am in awe of your ability to remain objective. you're really phenomenal & a great role model.
I know you know all of this, but in case it's helpful, I think this would be my read re brain scan: whatever you decide, is the right choice for you - not very helpful, but I think true. I've been doing better w/ more information, so for me at this time (and I'm sure this'll keep changing), not getting the scan would be worse than getting it. you know what's best for you & you're doing all the right things to best make that determination.
thank you for sharing your thoughts & experiences here. I'm sorry to hear how difficult things are for you - sending my best thoughts & wishes for peace and comfort....
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feeling like it's been kinda 'quieter' here lately... which is totally fine!
thinking of y'all & hoping everyone's doing alright & are focused on enjoying the day & looking forward to a lovely weekend.next week's neuro psych & neuro OT - I'll report back if I hear anything that sounds useful. other fun: seems my port is looking for early retirement - getting the dye study.
hard to believe it's already mid-February. time is flying... anyone got a trick to slow it down a smidge? TGIF!
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February is already starting to bloom in Seattle. We had a downpour this morning but it is lovely this afternoon. My crocuses and daphnes look and smell great.
I resumed T Herceptin today, 100 mg once a week. Until we get the brain scan and some time passes we won't know what we are dealing with so we are doing this treatment to be judicious. I am supposed to resume systemic therapy, in the hopes that it passes through the BBB but who knows. It might be Tykerb/Xeloda (lap/cap) or maybe compassionate use. I really want to do immunotherapy ASAP.
I asked my neuro-onc if the fact that I had atypical early progression to the LM factors into having me allowed into clinical trials that otherwise exclude patients with LM. She said it was political and discrimination that they are even alllowed to exclude LM patients -- because some of the therapies might even work. Damn. She said I would have to negotiate with the PI about being included, so at least there's a maybe in there.
She told me a horrendous story though about doing a compassionate use application with a GBM (gliblastoma) patient. The patient's tumor was tested by Foundation One and showed a mutation that was identified as an appropriate target by a certain drug. She spent 20 hours working on the request and the drug company first said yes, then they said the drug had to be accessed through a trial site.She got two colleagues at two different clinical trial sites to say yes to include the patient. Then the drug company said no. They said the patient didn't have the mutation. So now they are stuck and goodness knows what the drug company is thinking or how high their testing bar is that a patient can suddenly not have a tumor mutation. Argh!
My neuro-onc said that I'm going to feel quite rough at times and that my brain rads "injury" is going to be an issue for three months probably. Damn. My symptoms are still just muscle twitching, some fatigue, no wanting to run up the stairs, and blurriness when reading the screen too long. Not too bad but enough evidence that I need to let myself heal.
I realized today that really, when you think about it, I am NED basically everywhere except for the outside of the cerebellum. That's something. And maybe rads was enough.Hope you are hanging in there. Be strong.
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Thinking of all of you today.
Today's the 1 year anniversary of my craniotomy. I've had lots of memories and thoughts running thru my mind today.
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congrats Goldie. My year anniversary is next week. I am rally happy to have people like you in my world. Really makes s difference
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Agness the fatigue gets worse before it gets better unfortunately. It didn't hit me until the rads were over.
I've had vertigo for a week that no one has any clue why. Grrr so aggravating. Made me so depressed. Really can't I catch a break ?
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Leftfoot, your posts were some of the first I remembered reading on here after I joined last year. Congrats on your fast approaching anniversary too!!!
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Tired today. Did IV vitamin C plus minerals. Still doing keto diet, 2-1/2 months in. MIL is useless to help her son out and can only think of her own comfort; she didn't even make it two weeks after my rads was done before she decided to head home. It is wasting my energy to think about it.
Tomorrow I see another neuro-onc, don't know what I will learn. I just hope he isn't an asshole. I finally am scheduled to see my MO next week, I am going to sees about meeting another gal someone recommended to me at another hospital. I just want people who want to try and don't just go for the standard of care.
Right to Try in WA is being blocked by Sen Andy Hill on the basis that he had a full recovery due to a clinical trial and thinks that everyone should do clinical trials. I guess he missed the memo where having central nervous system disease complicated things, especially when having LM is the most common exclusionary criteria for brain tumor clinical trials. Doh! The state medical association, hospital association, and even one health insurer all support Right to Try -- but Sen Hill? Read his story and feel free to contact him about SB 6550 and tell him what he is missing
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New research showing craniotomies increase the risk of LM in breast cancer. They advocate WBR but that is ridiculous. The better option is to anticipate the occurrence and to treat the region. We don't irradiate the torso if there's BC in the left breast only. Cancer is sneaky and weird but it isn't totally random, you don't need to treat it where it isn't. For HER2+ you could even start IT Herceptin to stop disease spread as they do for lesser risk of disease spread from brain mets like melanoma
Surgical Resection of Brain Metastases and the Risk of Leptomeningeal Recurrence in Patients Treated With Stereotactic Radiosurgery
http://www.redjournal.org/article/S0360-3016(15)26760-0/abstract
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How is everyone feeling today? Hopefully we all can relax and have a little fun this weekend!
Agness- how'd it go with the new doc? Any new information?
I had my SRS session yesterday. They had found a 7th super tiny lesion that was missed on the first MRI, but didn't change anything. Everything went pretty smoothly until about 1/2 through. I guess the Ativan wasn't strong enough and I had a very intense panic attack, which was super scary. They were able to finish the pass and then gave me more drugs and about a half hour later I was ok to continue.
Doing well today, just relaxing at home. Fatigued but no headaches or seizures. I have my follow-up appointment and MRI in mid April.
I also am meeting with my MO this coming Monday to discuss everything and pick back up with chemo. My pet/ct last week showed NED from the neck down so they don't want to keep me off of it for too long! Although I did take advantage of higher blood counts and splurged on a mani yesterday before going to Sloane!
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Becs -- totally cute nails. I'm glad you were able to splurge on a little fun. I just noticed that you also had leukemia as a kid? Oh boy, how much can one body take. I have never found any connection between leukemia and HER2, other than having a genetic mutation in my Foundation One report that is normally associated with leukemia. From what I recall childhood cancers are thought to be associated with paternal sperm issues -- but I'm sure it isn't definitive. It just came up when I was looking into infertility stuff for myself years ago.
I met the new neuro-onc two days ago and I liked him. He tends to be more comfortable with research-based approaches but is totally willing to think outside of the box and try off-label things if we (he and I and anyone on the team) can find good reason to try them. He was very interested in hearing about my physical responses to IT Herceptin, how my facial nerve symptoms went away within a week of starting treatment and that myoclonus (muscle twitching) in my lower right leg and leg foot (matches the pattern of the cancer on my cerebellum) went away after we bumped up to 100 mg once a week instead of 30 mg twice a week. Yes, learn from me. He has intellectual curiosity the other neuro-onc at SCCA didn't have.
I'm going to continue IT Herceptin at the other hospital where I have been treated as that is much more convenient and easy to schedule and it is fine. The new neuro-onc was glad I am getting IT Herceptin as the leptomeningeal spread was concerning to him as it means that cancer could potentially spread throughout the CNS. There isn't evidence of that though since my CSF studies have all been clear and the spinal MRI at the beginning of January was also clear.
I will also continue to have my brain MRIs at that same hospital as all the others have been there as well, my RO suggested that it serves as a better constant when trying to assess changes. The differences in my care now are that I have added new players at different facilities and they are willing to think outside of the box. I have more people who are going to read my brain MRIs and I am also attuned to the importance of reading the radiology report myself and not letting "group think" jeopardize my health.
I got IV vitamin C on Tuesday then yesterday I had craniosacral massage and acupuncture. I continue to take my supplements. Today I'll get my second post-rads IT Herceptin. Then my brain scan the first week in March and we are going to do another CSF draw (totally easy with the Ommaya port, way easier than a lumbar puncture), and another spinal MRI some weeks out.I'm a bit fatigued but I appear to have leveled off in symptoms emergence and it isn't getting worse. I can pass a neuro exam just fine, just don't make me balance on one foot for a long time. Amazing considering that my last treatment was two weeks ago. Its going to take another 2-4 weeks of the trauma to go away and than three months before I start to feel more normal I've been told. I'm hoping to get back to HBOT in a couple weeks when I'm a little more certain my ear drugs can handle the stress of the pressure.
How's by you?
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Cute nails, Beccs! I love splurging on the occasional mani. My BFF is great about giving me a call and taking me for pedicures and lunch too. She always seems to know just when I need a day with her
Agness - I'm glad to hear you are happy with your new docs and it seems your treatment is progressing well. Continued prayers for that!
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Does all the fine motor coordination and nuerological symptoms go away after Gamma knife to brain ( 7mm brain met in cerebellum) or they just get reduced ( the lesion in brain shrinks in a new MRI -3 months after GK) but doesn't disappear )?
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many- I recommend getting a physical therapy referral to help with recivery. It really aided me after my brain procedures. My lesions weren't in the cerebellum so I can't speak to that
There may always be evidence of your lesion on your future MRIs. Necrotic tissue will show up on scans. And it takes several months to heal. I can still see where one of my lesions was on My MRI even after 3 years. It's fine as long as it doesn't get bigger.
Hope that help
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many - what type of neurological symptoms? What type of fine motor coordination issues? I had LINAC SRS to my tumor bed in my cerebellum in September and bounced back until I started having facial nerve involvement in October. I just had my posterior fossa irradiated and it caused my eyes to be more tired especially when looking at a computer screen but not any difference in an neuro exam (diploplia), balance to be less adept (slight ataxia?, symptom of body wanting no running up the stairs), I didn't like having someone kick my foot under the table in a way that was very new to me the level of irritation it caused (proprioception altered?), and then muscle twitching (myoclonus) happening minutely at odd times and locations all over. I think my personality was a little flattened by treatment too -- but maybe its just me. Thankfully things are not getting worse now that I'm more than 2-1/2 weeks out from treatment.
I was told the initial healing period of acute symptoms was about a month, knowing that things would get worse before they got better. Then the longer first stretch of healing was a good three months after treatment ended. While they don't tell you it, nor do they give care instructions beyond acute stuff, getting brain rads of any kind causes brain trauma and we need to heal from that. If we had a concussion it would still take a good three months for our brain to recover and so we need to be gentle with ourselves. Drink lots of fluids, take daily naps if we can, don't over challenge the brain to do too much, sleep on your left side (I saw that it aids CSF flow), and get good nutrition. I have specific supplements I'm taking under guidance of my FABNO naturopathic onc plus I also get craniosacral massage from someone also gifted in lymphatic drainage -- I don't want to take any chances and evidently there can be swelling and pressure built up in the posterior fossa so I wanted to keep things open and draining well.
I hope this is helpful to you. Feel better.
Ann
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My wife had a follow-up MRI today, two full months after the end of WBR and the radiation oncologist said things look good. Next MRI in three months.
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gciriani,
Congrats. Good to hear. I lurk here a lot and post infrequently. On Dec. 22, my wife had SRS on a .6 cm lesion on her left superior frontal gyrus and we go in tomorrow for an MRI, with the results to follow immediately.
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Happy to hear it gciriani.
I have my first follow up brain MRI amd body CT today. The Aberciclib clinical trial requires frequent scans and I could not be happier about that.
If Aberciclib is working, continue on. If not, SRS and new plan
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Always wonderful to hear good news around these parts- gciriani.
Good luck today, BAU! I'll be thinking about you and keeping my fingers crossed. Do you anticipate getting your results right away? Please report back as soon as you hear.
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Thinking of you today, Bad! Good luck.
Great news gciriani.
I had a routine appointment at my onc's yesterday. All looks good. TMs remain low and the lupron shots have started lowering my estrogen nicely. We'll probably start AIs within the month. My next brain MRI is at the end of March.
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