Brain Mets Sisters
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Thanks illimae. We got the spinal tap and mri done yesterday. Still waiting for results and keeping fingers crossed.
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In your pocket for the results Concerned Daughter.
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here too Concerned Daughter. Praying it’s a false alarm. Did they tell you how soon you can expect results
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Thank you to everyone for your kind words. My mom's first spinal tap was negative for malignant cells; however, her doctor said that false negatives were common. She had a second "large volume" spinal tap done last week. As I understand, the entire sample will be used to look for malignant cells (the first one was also used to check csf protein, csf glucose and csf cell count). I think the results of this one will be used to guide her treatment.
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concerneddaughter, was a spine MRI negative as well? And do you know your moms HER2 status (+ or -)? Hopefully doctors discussed what options are available for each scenario. I wish you great luck.
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Illimae, the MRI of the spine was "unremarkable." She is her2lo (FISH +2) so I know her oncologist is considering enhertu. We have a consult today with the radiation oncologist followed by a consult with her regular oncologist.
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Concerneddaughter, it’s sounds a lot like what I just went through in May. Although suspicious, nothing was found/confirmed either and Enhertu would be the next step either way. You all seem to be in good hands and doing all the appropriate tests, etc.
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Thanks illimae, my mom loves her oncology team. The results of her second spinal tap were also negative for malignant cells. I think based on the clean mri and negative spinal taps, they are leaning toward targeted radiation to the dura. Will need to wait and see what the team ultimately decides on (whatever path they take also needs to consider systemic treatment for her liver mets).
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Great news, concerned_daughter!
Hugs, Susan
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Hi everyone, I thought I would just give an update on my mom incase it might ever help anyone else in a similar situation in the future. After two negative spinal taps and a negative spinal mri, they haven't conclusively stated whether or not my mom has leptomeningeal spread (apparently it can be diagnosed on radiological evidence alone... but my mom's isn't clear)...
Her doctor met with the tumor board and they are recommending that she start enhertu, because she is her 2+ low (2+ IHC) which they believe had good activity in CNS disease, with the added benefit of treating her systemically (she has extensive liver metastasis).
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Concerneddaughter, that sounds like the right decision by the docs. After my negative tests, I started Enhertu as well, which would have been the next step either way really. My first Brain MRI after showed 2 stable lesions and 5 that shrunk by 10-50% including one old spot previously treated with radiation in 2018.
Enhertu has been a bit more difficult than I expected, especially with nausea and vomiting. Please make sure your mom has some protein drinks, anti nausea meds and a puke bucket for the first infusion at least. My symptoms were the worst on days 3-10 after the infusion. Best of luck to you both.
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Had an MRI done last week and the results were given today, I am still clear for brain mets and she is not worried at all about the enhancement either. Going to have scans every 4 months instead of 3 months.
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Yayyyy for all clear, Mara!0
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Thank you monogram! ❤
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Great news Mara!
I also had a clear scan in August. My neuro onc now has me scanning 1x/year unless new symptoms emerge and/or any changes with my body scans or bloodwork. I continue to see my MO every 4 months and do body scans 1x/year.
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Good news mara !
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Yay, Mara!
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Thank you everyone, Goodie, I would love to be once a year. I may ask about once a year for the CT scan portion since nothing has shown up in 7 years. I convinced my RO to go with 4 months apart for the brain MRI. We will see.
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Hi everyone, I have been reading different post on here for 7 years since my mom was diagnosed with metastatic breast cancer and found so much strength and positivity. I am now in need of advice/support as she just had a worrisome MRI. My moms history is, she was diagnosed with invasive lobular er+ pr +/ HER- breast cancer in 2004. After a mastectomy and chemo she was "cancer free" until 2015 when back pain started and we found bone mets. She was on letrozole/femora combo with xgeva for 5 years until progression to her liver. She then was on piqray/faslodex and stopped xgeva until this june when she became confused and started having a lot more pain. She spent nearly a month in bed. We emailed her MO back and forth before finally bringing her in and finding her calcium level at 17.6. She spent 5 days in hospital scans showed bone progression so she then started Xeloda completing her first round last week. An MRI without contrast was completed due to her confusing which was clear and her confusion was said to be from the high calcium levels. She is slowly becoming more herself but still having pain. Her doctor wanted an MRI done of her spine and back to because of all the pain and staging for radiation to help with pain. Her spine came back unremarkable. The vertebra have a few pathological fractures but what is most concerning and worrisome to me is that the brain MRI shows extraosseous extension into the dural surface as well as intraorbital extension with possible involvement of the left lateral rectus muscle. Scattered enhancement concerning for leptomeningeal disease. I know this nasty disease will eventually take her from us but I am devastated as she has always done so well with her treatment. We meet with her MO on Thursday to go over results. Just reaching out if any of you have dealt with this and the treatment plan you have done.
Prayers to all you warriors
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Count me in as a new member of the brain mets club. I can now also lungs too. Had brain mri that showed a lot of involvement. 2 radiologists had read the mri and both say wbr is what will be called for as they seem to be pervasive in numerous areas. Have no idea of anything other than that. Am current moving from FL back to GA, where I bought a house, and hoping my son will join me there before too long. I am have a venous brain mri coming up this week, and next week I will finally get to see a neuro-oncologist to see what he has to say. I am asking both medical onc and neuro-onc to give me a referral to Emory, and mark it as urgent so I can be seen in 2 weeks, instead of going through 2-3 weeks of waiting between tests and referrals. Fingers crossed that I will be successful in getting treatment started soon. Meanwhile I'll read back in the thread to catch up on some of the situations.
Good luck and best wishes to all who have done so well!!!
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meg8000,
So sorry you are dealing with this but you have come to the right place. I had WBR more than eight years ago and still doing well. Originally had more than a dozen brain tumors and my rad onc thought there were probably more that were too small to see. I believe that she made the right call back then. A couple of tiny tumors came back a few years later and she zapped them with Gammaknife. Three years after that, she zapped a couple more. So far, all looks good.
Hugs, Susan
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I am posting for my mom. I think I have her history updated but here is a quick run down.
2004 dx with stage 2 invasive lobular carcinoma er+pr+/her2-. Total mastectomy and chemo therapy completed.
2015 back pain mri confirmed mets to bone tx letrozole and ibrance
2019 ct reveal progression to liver. tx piqray and falsodex
2022 bone progression. tx xeloda.
She has done well with treatment up until June when she fell and spent nearly a month in bed. Scans revealed bone progression which made treatment plan change. Been doing ok still having a lot of back pain. Did staging mri of back to start possible radiation for the pain. Found vertebra with pathological fx and extensive bone mets. This is where her reoccurrence was originally found. Head and Brain mri showed
Numerous osseous metastases involving the calvarium many of which demonstrate extraosseous extension into the dural surface. Osseous metastases involving the left inferior orbital rim with extraosseous extension along the left anterior temporal convexity as well as intraorbital extension with possible involvement of the left lateral rectus muscle. No evidence of an acute infarct. No acute intracranial process. Scattered enhancement involving the cerebellar sulci as well as along the right trigeminal nerve concerning for leptomeningeal disease.
Her spine MRI's all looked ok. She has had a brain MRI done in august at a different facility that did not show anything however that one was done without contrast. We go to her MO tomorrow to go over results. So nervous and anxious on what the next step is. Any advice or information is appreciated.
Thanks you!!
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Meg, if you have any questions I can help you with regarding the whole brain radiation and what to expect, let me know as I had it 6 years ago. It was a good treatment for me without lasting effects. I am sorry you had to meet us this way but a few of us have had the WBR and have gone on for years.
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mymomsvoice,
I'm no doctor but from the section of the report you copied, it looks like she's got skull mets with everything else a "possible" or "concerning for" situation. Hopefully, your doctor will be able to go over the scans with you. Sometimes, radiologists can overstate these other possible problems. They have done this many times with my scans.
Let us know how her appointment goes.
Hugs, Susan
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after her appointment today her MO set her up with a RO. They are recommending 10 doses of WBR. Definitely not whan we wanted to hear but they had her images pulled up and assured us her area is small and that they've seen them disappear after this treatment. It worries me that you can only do the WBR once. Just very anxious. Any info on how to prepare fir these treatments is appreciated. Prayers
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mymomsvoice,
First, they will make a mask that will keep her head firmly in place during the procedures. The tech told me to imagine that I was getting a facial. That totally worked since it feels like a facial treatment. The radiation treatments themselves are quick and painless. I had 20 days of treatments since I was getting my eye tumor zapped at the same time. I tried to think of the radiation beam as a healing light, which it is. She will probably lose all the hair on her head, but unlike chemo, will not lose her eyebrows or eyelashes. The hair should grow back quickly after treatment is over. The harder side effects are fatigue that peaks around a month after treatments are over and lack of taste that may affect her interest in eating. The lack of taste affected me during treatment and I lost a lot of weight. I wasn't fatigued during treatment and stayed physically active but a month after treatment I hit a wall and slept all day.
Seeing the results of the radiation may take some time so don't expect everything to be gone right away.
The doctor may not let her drive during treatment. Depends on whether or not she is symptomatic. She also may be put on steroids if she is symptomatic.
Like any other treatment, a lot depends on what her health is like before treatment.
Hoping it all goes smoothly and those brain mets are gone!
Hugs, Susan
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yes they made her mask today she's scheduled to start treatment next week. After reading this blog I'm now questioning why they went right to treatment without a lumbar puncture to check the spinal fluid. Im glad to start treatment my heads just spinning now with more questions. I appreciate your information susaninsf
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Well, I have become a brain mets sister after more than 7 years of mets in my bones followed by liver and spleen. The dura is affected, and I have several small tumors (4 or 5, if I remember correctly) in a couple areas of the brain. The largest is just 11mm, and the others are only about 5 mm. I will begin WBR tomorrow morning and continue it for 10 days. My only symptoms were headaches every morning in the same area. If they hadn’t continued on a daily basis for several weeks, I probably wouldn’t have reported it to my MO. He immediately ordered am MRI, and here we are.
Thank you for posting so much informative message to this thread. I have been a lurker for several years, and your posts have helped me through the whirlwind of my latest diagnosis, testing, mask fitting, and future treatments. Your have lessened my fear and given me realistic expectations.
Lynne
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Lynne, sucks that you have to join us here but glad that our experience has been helpful to let you know what you may expect. Susan and I are amongst the long term WBR people and I think that should be helpful for symptoms after and how to deal with it. Any questions, PM me or post here too. I did not experience pain, but much pressure and started having seizures though my met was 10 cm. I came out no worse than before. I don't find my memory any worse either. Treatment is so much better now.
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Mara, Thank you for your comforting words. I have to admit that I have been experiencing some degree of nervousness about all this,and it is good to know you are here for me.
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