Brain Mets Sisters
Comments
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Thank you so much, monax5!
It's so encouraging to read of people with LM who have been doing well for years, rather than weeks or months!!
You have given me a ray of hope today x
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Susan - thanks for the update, too sad.
update on me
I saw my RO for a follow up, he said the new spots don't look like the way necrosis does. They were pushing the limit of tissue tolerance so except for maybe gamma knife more rads wouldn't be used. He said we should just keep watching in the absence of symptoms, suggesting the next scan in 2 months. The only symptom I have is tingling and numbness in one cheek, which might emanate from a facial nerve but the new lesions are away from the nerve. Its possible that my nerve is just irritated and healing. I gave him contact info for a researcher to see if pseudoprogression is being seen with it herceptin.
Then I randomly ran into my naturopathic onc and his resident and was able to give him an update. They agreed that hyperbaric oxygen should only help if theres tissue damage. I intended to do more already but my ears were in the rads field and I didnt want to put them under the pressure while they were damaged. Then I had the flu and sphenoid infection and then with the kids out of school and the camp schedule it just didnt fit well (hello life of a mom). I'll start going again this week. Evidently if prescribed to treat radiation necrosis insurance should pay for it. I'm trying to see what my neuro onc thinks and then if I can get the best price and patient experience.
I still need to speak to a couple more docs on my team.
I feel like there isnt a good map for patients of the recovery from rads induced brain trauma for treating larger areas. Maybe I'll put one together. About six months in and still stuff is unfolding in the treated area.
Hang in there,
Ann
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Yesterday was my wife's second brain MRI follow up, and the radiation oncologist said it looks even better than the first follow up. Evidently more scar tissue/necrosis have been absorbed.
To give you a full picture, she keeps undergoing Doxil chemotherapy for the rest of the body every four weeks (cycle four): it's a mixed bag because she's tolerating it well, however, pain has increased all over the rest of her body (she had to start oxycodone), but the various bone and CT scans show the cancer is in status quo (the MO is surprised by the conflicting info).
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Agness - do you have any fasting advice for my upcoming five days of SRS? I'm also taking a investigational drug for three cycles (TPI 287, a taxane) starting my first day of rads. Which is tomorrow!!!
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Hi Ann,
Are the areas of enhancement where the original lesion was or where the LM was? Are you able to raise the IT Herceptin dosage or add a chemo to it?
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Bad - I had three days one week and two days the next when I had my LINAC SRS last September, that helped break it up a bit. What I would do was start fasting the night before and then take a ton of water or plain tea. I made sure that if I was feeling like I needed a little energy that I would have a little coconut oil, butter, or avocado -- but only like a teaspoon or so. My energy level was a bit lower and I was cold a lot more but I made it through. I couldn't keep that up earlier this year so instead I did intermittent fasting -- I stayed in ketosis (low-carb, high fat diet) and just took all my calories in between 12pm and 6pm or so. This also limits how much glucose is available to the cancer cell line and during the hours when you aren't taking food your body will burn fat (ketones) which the cancer is less adapted to.
Hey Freakzilla - They are in new areas not where there was bulky disease I don't think. I need to meet with my other neuro-onc (I know I'm fancy, I have two) to review and discuss. I honestly think it is scar tissue. I know that MRI will show scar tissue the same as tumor based on my post neoadjuvant chemo imaging. Subsequent surgery showed that what lit up was devoid of disease and was just scar tissue.
I'm just super disappointed to not have the scan be stable or clearer. I wanted things to be clearer dammit! Well sometimes things aren't very clear and we are all learning to live with that uncertainty. My body was upset by the news, separately from any feelings I had about things.My back started going into knots over this vague uncertainty. I go for a lomi-lomi massage tonight which should help a lot. Right now I'm off to acupunture, tomorrow HBOT, and Friday craniosacral work. I'm just going to keep working on healing as there isn't much else to try right now. I'm still on the modified ketogenic diet, since December. Go body go!0 -
News releases on options for brain tumors/mets
International Study Finds Effective, Less Toxic Way to Treat Brain Tumors
/PRNewswire-USNewswire/ -- Physicians from Carolinas HealthCare
System's Neurosciences Institute and Levine Cancer Institute are among the
authors of a study that was accepted for publication by the Journal of the
American Medical Association (JAMA). The study, released on July 26, 2016,
shows that patients with the most common form of brain tumor can be treated
in an effective and substantially less toxic way by omitting a widely used
portion of radiation therapy. These results will allow tens of thousands of
patients with brain tumors to experience a better quality of life while
maintaining the same length of life. ( Journal of the American Medical
Association )
--Carolinas Healthcare Systemhttp://www.newswise.com/articles/view/657943/?sc=sptn
BideV - Study from Carolinas HealthCare System Finds More Effective, Less Toxic Way to Treat Brain Tumors -
Stereotactic Radiosurgery May Be Best for Patients with Metastatic Brain
Tumors
ROCHESTER, Minn. -- Patients with three or fewer metastatic brain
tumors who received treatment with stereotactic radiosurgery (SRS) had less
cognitive deterioration three months after treatment than patients who
received SRS combined with whole brain radiation therapy (WBRT). These
findings are according to the results of a federally funded, Mayo
Clinic-led, multi-institution research study published today in the Journal
of the American Medical Association.
--Mayo Clinic
http://www.newswise.com/articles/view/657941/?sc=sptn0 -
Surgery tomorrow to do a total hyster. I'm anxious and hoping that the endometriosis is really just endo and not cancer. I'll be so glad to have this behind me.
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thinking of you Goodi
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Good luck Goodie.
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I went for hyperbaric oxygen treatment this morning. They gave me a nasal cannula (tube that goes across the nostrils and delivers oxygen directly) to use as well during the time I was under compression. My RO and naturopathic onc said that it sounded like a good idea. My one neuro-onc thinks the new areas of uptake are new tumor and she wouldn't recommend it. It is times like this when I research the heck out of stuff and make my own determination about which is the right way to go. For me it mostly seems obvious. I have seen over and over the limitations of oncology training and the human-ness of doctors and so I bravely go where they are worried about their training. The thing is though that standard of care for brain mets is you die. They have been doing the same thing over and over for some 30 years and the patients all die. I've even seen that they are still unfamiliar with how immunotherapy agents work in the body, even something relatively commonly prescribed such as Herceptin. I'm not surprised that the possibility of pseudoprogression isn't better understood, even contextually -- such as immunotherapy increases the likelihood of pseudoprogression and Herceptin is an immunotherapy agent, plus IT Herceptin is a newer thing hence the plausibility that IT Herceptin might increase the risk of pseudoprogression.
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Agness Can you explain what you mentioned about Herceptin. Dani is on it. And there is progression. And they wanna continue, so I would like to understand better what did you mean? TIA
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HI Momalltheitme, Is Dani on IT Herceptin or IV Herceptin?
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Momallthetime - I have been getting intrathecal Herceptin, aka IT Herceptin which is an infusion into the spinal fluid. They do this off-label treatment only in the case of cancerous spread to the outside of the brain, which happened to me after my solitary metastatic tumor to the cerebellum was found last summer. There aren't really any standards yet.
Herceptin, Perjeta and most other drugs are too large to pass through into the central nervous system due to what is known as the blood-brain-barrier (BBB) -- tight junctures in the blood vessels that are there to protect us from meningitis and other external pathogens that might enter our bodies. The percentage of Herceptin that might enter in is minuscule normally, like water to the cancer cells, compared to how potent it can be when treating the rest of the body.
Some drugs can pass through the BBB in some quantities such as Carboplatin, Tykerb might have some effect in some patients when accompanying Xeloda, Kadcyla might help control brain mets even though it is Herceptin bound with a cytotoxic agent (how does it get smaller? I don't know). The medication under development, ONT-380, recently given FDA fast-track status, appears to be helping against HER2+ brain mets.
Elsewise standard practices seem to be:
• radiation to control existing lesions
• surgery (craniotomy) for bulky, symptomatic, questionable lesions and tumors, followed by radiation to the treated area
• no chemo or targeted drugs until there is definite progression - this depends on your practitioner but it is the standard
• watch for progression outside of the central nervous system as breast cancer brain mets can migrate back out into the rest of the body. Sometimes drugs are given to protect from this happening such as using Kadcyla in HER2+ patients.
• lots of watchful waiting
The reality is that the current standard for brain mets patients -- irregardless of past response to chemo agents or whether the brain is the first or last site of progression -- is you die. The most skilled oncologist's are still stymied by the fact that they can't get drugs into the brain and that they only seem to work (consistently) against spread on the surface of the brain (leptomeningeal disease).
But, many of us are defying the odds, participating in drug trials, doing complementary strategies. The best we can do is to do better than standard of care -- and to go down in flames trying if that's what it takes
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Hey Guys- I know it's been a long-time since I posted, but I have been reading about what has been going on with you.
Goodie- Hope everything went well and you aren't too sore.
BAU- How did day 1 of rads go?
Here is an update on me: I have been having some slight dizzy spells, that led to me having a fall at work on Monday. I called my neuro doc right away, and he said lets wait and see what my previously (thankfully) scheduled second follow-up brain MRI showed yesterday. And it was a mixed bag of results. I started off with 7 previous legions. 4 showed as stable and 3 (included my largest lesion) showed significant necrosis. They put me on steriods to try and bring down the swelling, which the doc said should help reduce my symptoms.
The bad news is the found an 8th legion, which apparently had been there all along since February, but was so super small to be seen. But since it was left untreated it started to grow enough to show up. Still very small, only 8mm. So my RO and MO talked about it yesterday and are trying to decide between doing gamma knife or putting me on Tykerb. They are also presenting my case to the tumor board tomorrow morning. I am glad they are doing that so a whole team of the most experienced docs will also be weighing in. Part of me wishes that they chose to do gamma knife. I just don't want to take any more pills. I am on so many already, xeldoda (6 pills a day during my week on), 2 anti-seizure meds (for a total of 8.5 pills a day), steroids (2 a day), and some other drugs, whose name I forgot, to protect my organs from long-term steroids (1 pill 3 times a week).
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Hey Becs, thanks for asking! Two days down and no symptoms so far. Four more to go. I got TPI 287, the investigational drug yesterday as well, and no symptoms from that, aside from the pre-infusion Benedrayl knocking me out. I slept through my first SRS after that. Then at night I went out to a dive bar with the hubs and played pool. Then I went to radiation #2 this morning and then to work. So I'm doing really well. I wish I could've stayed on the full dose of Abemaciclib and not have had progression, but I gotta admit my quality of life is much better off the drug. It's so nice to not have to swallow Imodium and Zofran by the handful just to get through the day.
Speaking of Abemaciclib, Elizabeth how are you doing
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Becs - Dani had gamma knife, it did help, it's doable, the worst part is when they screw the mask on. Best of luck.
Badas user - what made your doc give you abemaciclib. I just started hearing about it.
Agness you write so eloquently. How do you know so much? The Herceptin she is getting is IV only at this time.
I would very much appreciate you guys giving me an opinion on the following descriptions, a bit summarized:
At present she does not have mets to the brain.But yesterday's MRI of the Brain, is not good. All the lesions on the skull grew in just 4 weeks. In particular the left frontal bone lesion grew exponentially, it grew from 1.4 to 2.7, which Radiologist told me it's quite large, there is enlarging dural based mets,
There is asymetric dural thickening and enhancement along the left frontoparietal convexity as well as enchancing dural nodularity along left anterior temporal lobe convexity.
Additionally, there is a lesion centered in the greater wing of the left sphenoid bone which now slightly extends into the left orbit.
I spoke to the NP of Rad Onco today, so the plan would be to give about 4 wks to Navelbine/Herceptin IV to do something, then thye would not radiate. He told me he feels it should be radiated, particularly the one in the left frontal but being that its a large patch, and they don't think the hair will grow back, there is hesitancy on Dani's part. We all know, including her, that life and a good QOL is more important than any outside looks, yes, so the question IS, what would you do? They seem to be very competent, and professional. They really feel bad for her. They told me they think it would be allright to wait till the next scan and see if tx works. She sstarted it this morning. Now, should we chance it. If i really scare her, she will listen to me, i think. She understands the balance. WHAT TO DO???
Tomorrow I speak with RAD ONCO, but they wanna be cautious that it does not get too big, like it should not get to the brain itself.
She was on tykerb and they took her off it, they thought it was not working. Now, they don't wanna put her back on it.
What say you?? Thanks a bunch.
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oncologists are weird when it comes to not putting you back in tykerb. I had been on it for almost 2 years when I got a solitary liver tumor. They immediately took me off of it. They really don't want me to go back in it. I have been off of it now for a year so think I have a small chance of going back in it if I need to. Herceptin therapy has been hard on my heart so tykerb would be better from that standpoint.
I wonder what they aren't telling us as it seems many docs don't seem inclined to try tykerb more than once.
Hugs to you Momallgetime. Go with your gut.
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So the tumor board this morning to discuss my case and decided against further radiation, which is good, cause after 2.5 hours of SRS in February, I def. didn't want to go through that again. They are now trying to decide between tykerb and avastin, but need my MO to help make the decision, but she is on vacation until Tuesday. The RO said that both drugs can go with the Xeloda that I am currently on. So I have half a treatment plan in place...
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This is interesting about Tykerb, patients on Tykerb/Xeloda had a poor survival at one year based on early stage treatment. I was told that in a previously heavily pre-treated brain mets population that there was a 40% chance of Tykerb/Xeloda prolonging survival -- mind you they are looking at months in our cases as signs of success. This makes me think that this combo is bunk.I was offered it a few times over the past year, until my LM took over as a concern.
https://ww5.komen.org/BreastCancer/Table51Lapatini...0 -
that is the combo I was on from dec 2012 until June 2015. I had gamma knife in December 2012 to my two lesions and then went on that combo. I was NED until my solitary liver tumor in July 2015. So I guess I am an exception to that rule. I would try it again if I could. Counting my blessings.
Side note: I was put on tykerb because herceptin lowered my heart EF during my initial treatment in 2011 and I had to stop treatment early. Tykerb isn't Cardiotoxic like Herceptin.
After they took me off tykerb in July 2015 they tried herceptin again. I made it 9 months before it made my heart tank again and it was discontinued. I have not been on a targeted therapy since March 2016, just Xeloda. Crossing my fingers that I continue to be stable and my brain stays clear.
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hey Bad
I've been on the Abemaciclib for two weeks now. It's going ok. I'm def having the nausea and diarrhea but it's been managable and not as bad as I thought it was going to be. Sounds like your GI system took a hard hit from this drug. So that has me wondering if my symptoms will get worse over time? Did you have problems from the get go or did it get worse for you? I'm also wondering what dose you were on? I'm on 200mg 2x a day.
As I'm new to mets, waiting for my next scan is hard. My next brain MRI is in 4 weeks. Which will be six weeks from start day of Abemaciclib. God I hope it helps. Hope those little jerks aren't growing.
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Elizabeth, my system actually got used to Abemaciclib after about two months. But whenever I got pulled off for a two-week break, the stomach ickies would restart when I would restart the drug. I started on your dosage. The last few weeks before we discovered the progression, I got knocked down to 150mg 2x a day.
I wish TDM1 crossed the BBB. It was such an easy drug for me in comparison
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Bad- were you pulled off for two week breaks for WBC issues? How long were you on Abemaciclib before your first break?
Thanks for answering all my questions.
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I'm happy to answer! I'll simplify things with a timeline.
Jan 7: Brain mets dx
Jan 15ish: Start first cycle of Abemaciclib (no side effects this round)
Jan 25: Surgery
Feb 10: Restart Abemaciclib @ 200mg 2x/day (nausea, diarrhea and stomach cramps start pretty quickly)
April 5: Awesome brain MRI showing regression on the left side
Mid April: N/D finally start tapering off
First week of May: WBC count @ 1.90, hemoglobin low too. Onc insists on a two- week break.
Mid-May: Restart and the N/D restarts with it
End of May: Shady brain MRI showing areas of enhancement but not enough to be called progression
Mid June: WBC low again as well as platllets. Onc says 2-week break and then restart at 150mg 2x/day.
End of June: Restart at 150mg 2x/day. N/D restart as well.
July 3: Spasms sent me to ER which found progression. By the end off the week officially off trial.
Honestly, I saw the writing on the wall after I had to take my first break and after the May MRI, I was actively researching Plan B...
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Really afraid right now
Huge tumour found behind right ear. 8 by 3 CMS. Just had MRI to get more details than the initial CT found. Dealing with vertigo thanks to either brain tumour or swelling. Not sure of I have Mets elsewhere
I will give any info I get as I go along. You guys definitely are an inspiration.
Edited to add that MRI found only one tumour in the dura and they have alreadyentioned WBR. Are there any questions I should ask when there are no other lesions. Should there not be a chemo then scans before jumping the gun on WBR. I had no other problem that discovered it except for brain swelling causing vertigo. I feel like if I am not cognitively impacted yet then should we not hold off and chemo/zap as they come up?
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Bad- thanks for the detailed post. Super helpful. So disappointing that it dropped your WBC. Thought it wasn't suppose to do that like other cdk4/6 inhibitor Ibrance. Feeling really nauseated today and yesterday.
Mara- what were the Drs rationale for wanting to d WBR as opposed to gamma?
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Yay- I finished WBR yesterday. Felt so good to walk out of there.
Hasn't been too bad se wise- mainly fatigue, although last evenings headache wasn't nice. Paracetamol usually is enough (along with the Dex of course). Sleeping is a real problem, but managed 5 hours last night- it will be good to be able to start weaning off the Dex in a week.
I see my med onc in a week, so we can make a plan of where to from here.
I hope everyone else is going well
kt
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Based on the fact it is IBC. My hope is a more cautious approach and save it for later. I fear cognitive rosk. There are no other Mets. The tour I have is only in the dura. I don't think WBR will stop them from showing up. If I use it now, I can't use it later. I would like to save for when there are more Mets or gamma knife any that show up. Try a chemo even that would slow progression. I want to wait until later before risking it. I will get them anyway even if I do WBR. One lesion in the brainalese think it is too risky early on. The only issue I have now is the brain swelling
Thanks so much for listening, I can't discuss it with family, too fresh and they can't cope.
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Sorry about the nausea Elizabeth. I remember it vividly and it sucks! Do you think you might be able to talk to a palliative care specialist about managing the symptoms? One thing I keep hearing is a lot of people confuse palliative care with hospice, but palliative is actually about relieving the symptoms of either the cancer or the treatments.
Congrats on finishing WBR kt!
Sorry that you had to join us Mara and I agree that WBR doesn't seem appropriate for one lesion, even if it's large.
5/5 right side SRS done today, 5/6 overall (we are zapping the little left side dude tomorrow)
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Hope everyone is doing well!
Yay for being done with WBR, KT. That's great and hopefully you will start to feel better.
BAU- I am sure SRS is nothing compared to what you have already been through, although it isn't exactly a party. Good luck with the last one today.
Mara- I am sorry you have to join us, but this is a great, informative, and caring place. You will find a lot of advice and support.
So I was supposed to find out which drug they chose for me today, but apparently my RO got the date wrong and my MO is out of the country on vacation until NEXT Tuesday (plus now my RO is out), so I have to keep waiting I guess, which is the worst part. I am still on my Xeloda and Herceptin, so that's something I guess. I am waiting to hear back from my RO's Fellow, who I have met, about if he wants me to keep on the steroids (I was supposed to start tapering off tomorrow since a treatment plan was supposed to be in place by now). I have a feeling he will want to keep me on them, which means I am currently taking 16.5 pills a day....
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