Brain Mets Sisters
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mae, your words are always so encouraging. My most recent MRI did NOT show brain mets, but they're always on my mind (pardon the pun). There was a note of calvarial and skull base lesions, but those are bone, not brain. Will see my MO on 4/3 and will discuss my recent tests.
Carol
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That’s good news sunshine, thanks for sharing 🙂
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I had an MRI today of my brain and the news wasn't good. I've had a progression of leptomeningeal disease in the medulla. The other results were mixed. Some of the mets have decreased in size, a couple in the cerebellum are bigger and some are stable. There isn't anything new in the brain which is good news. I'm a little shell shocked right now. I know this isn't good news. I haven't spoken to my oncologist yet so I'm not sure what options I have. He might have me stay on the Enhertu or not. I am ER+ Her2 low so I don't even know what options I have at this point. Anyone else here fighting leptomeningeal disease? I just got the news about an hour ago so I'm still spinning.
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We are very sorry to hear about this, @emac877. The news can be very overwhelming. We know of one member in our groups that was diagnosed with leptomeningeal disease a few months ago, but she's been busy with treatments so we have not seen in her group as much. @kbl, do you think you could check in with that group member to see if she would be open to speaking to @emac877 when you hear from her again?
We found one of the more recently published articles on systemic treatment for it, though it is blocked by a paywall. Maybe @cure-ious would be able to access it and share it with you though?
We're thinking of you and please keep us in the loop as you find out more. ❤️
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@emac877 I’m so sorry you’ve been diagnosed with leptomeningeal disease. I would be happy to contact my friend Debbie in the morning and ask her if she is up to talk to you about her path so far. In the meantime, if you’re on Facebook, there is a leptomeningeal group where you can go and look at the information they have there. You would have to join, as it’s a private group. It’s titled “Leptomeningeal (LMD) Community and Support.” It’s not only for those with breast cancer. If Debbie isn’t up for talking, I will ask her any questions you have, but I will write you as soon as I speak with her first. Sometimes it takes her a little bit to respond. Can I ask if you’ve got any mutations or if you’ve had a blood biopsy recently? I am sending you hugs and will get back with you as quick as I can.
Also, @illimae has had scares of leptomeningeal disease that were false on an MRI, and I can only hope maybe that’s the case for you. I would think your oncologist may want to have a spinal tap done to be sure, but I’m not as familiar with how accurate MRIs are or not.
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@moderators Thank you. I will write Deb tomorrow.
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Thank you all for the support and Irish I appreciate the prayers. KBL I have not had any blood work done. I know that I have the PIK3 mutation but I have not had another biopsy since my initial diagnosis. I see the radiation oncologist tomorrow and will hopefully gain some more information. I will ask about a blood biopsy. That hasn't been mentioned. I can hope that this is a false positive. I don't know how accurate MRI's are with this. I don't have an appointment with my oncologist until May 2nd unless he wants to see me sooner or calls with information.
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@emac877 I think the spinal tap is critical in confirming it, along with the MRI. Can't recall the numbers, but oh yes there are false positives. I had a spinal tap, and it was fairly easy looking for cancer in the spinal chord. They had already reviewed a brain MRI, so mu hunch is they really need to see results of spinal tap. Prayers ongoing that this is false. And I sure wouldn't wait to see MO till May.
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Emac, erased previous comment due to putting too much info in there that is not what you need now. I am hoping for a false positive as well. Hope you see RO soon and scans reveal it for you. In you pocket lending support.
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The appointment I had yesterday with the RO was pretty depressing. He seemed very sure just based on an MRI. I had an appointment for the 11th with my MO's PA and the cancer center switched it to my MO so I will ask him about a spinal tap to confirm. I am set to start WBR on 3/17 which at this point I would do anyway since some of the mets that were already there grew significantly. It looks like Enhertu failed me as I have progression of "multiple" mets to the liver. So not great news but I'm not ready to give up either.
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Emac, I know I have said as much elsewhere but push for the spinal tap to confirm and look or ask about Clinical Trials, meds have changed a lot but you need confirmation at least for yourself before accepting such a dire diagnosis, if you get told they won't give one, get super stubborn and demand politely or find out about second opinions that would include that. In your pocket as always.
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Thank you Mara, I have an appointment on Thursday and I will ask my oncologist for a spinal tap to confirm.
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Emac, glad to hear you are asking about other options, in your pocket all the way.
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I asked about the spinal tap for the leptomeningeal mets. We caught it early and I only have two small spots in the meninges around the brain so since I am set to have WBR anyway my MO thought doing a spinal tap was not worth the risk since the MRI didn't show signs and I am also not having symptoms of intracranial pressure.
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emac you and I are on the same situation, I have met in bone and lungs, and lmd. I had 10 session wbr, I’m doing taxol once a week and Xeloda 7 off 7 on now. My bone met is not bothering but my lungs is. My lungs feels numb and my right arm.. I’m catching my breath and having a hard going up stairs.
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Emac, glad to hear that the lepto has been found early and that they think the WBR can be helpful as well. Still in pocket of course.
anx, I am concerned about the shortness of breath, did you doc address this for you I hope? In your pocket for a solution for that for you.
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yes Mara, that’s why he started Taxol right away. Thank you.
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Anx789 - I have mets to the lining of the lungs and was on Taxol to get my breathing under control. I don't get short of breath too often now but am on oxygen still. I've had some dizziness that comes and goes and I don't feel as sharp as I used to be but other than that I notice no real symptoms from the LMD or brain mets.
AJ - I will update about the WBR. I'm not really sure when to expect side effects to start. I was told to expect mainly fatigue and skin irritation. I start Wednesday.
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Emac, still wishing you luck for the WBR as well.
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I thought that I was handling WBR fairly well but this week things have gotten harder mainly cognitively. I am having a hard time with memory and hanging on to thoughts or coming up with words. I used to be a very patterned person and organized in my processes and now I can't seem to remember what I was doing or wanted to do. I have become dependent on lists and taking someone with me to appointments so I can remember and understand what was said. Does this sound normal and will get better? I have session 5 of 10 today so I'm halfway there. I am a little off kilter and feel slightly dizzy when I walk but not enough to fall. Just not steady like I used to be. I also have mets to the cerebellum and that could be part of it. I don't know. My egg just feels a little fried this week.
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@emac877 I have no advice, but my heart goes out to you.
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Over the last 10 years I have moved from one thread to another on this journey, thru lumpectomy to chemo to radiation to arimidex. Now it looks like I'll be joining you ladies.
I have been an active 72 year old living independentlyin a 55+ community. For 4 years I have maintained the 30 perennial flower beds on the property. Before his death Lew and traveled and tent camped adding bird species to our life list, spending a month in Australia and even camping in Hawaii for 3 weeks. I've been a volunteer for FindAGrave for 17 years and have taken over 33,000 tombstone photos. I maintain the family genealogy.
The end of March I returned from a Caribbean cruise where a friend and I had hired guides on each island to take us birding. I hiked mountain trails to see parrots fly through the valley below us. A week later I couldn't hit my laptop keys hard enough with my right hand to type accurately, and couldn't legibly sign my name. An MRI showed a tumor deep in my brain in the thalamus on the left side - too deep for surgical removal and in too complicated a spot to do a biopsy.
So far MRI has shown no spinal tumors, CT has shown no tumors in chest, abdomen or pelvis. Lumbar puncture contained no malignant cells to test. Mammogram is normal. The going theory is this is mets from my breast cancer 10 years ago.
I have had my mask made for linear acceleration radiation, scheduled for Tuesday. However, I'm weaker and clumpsier every day and hoping we can move up the date to Monday. Last night I had an asthma/panic attack that sent me back to ER this morning. I'm taking a 4mg decadron pill every 8 hours which is causing some sleep issues.
I'm getting Home Health OT and PT, trying to use my right hand when possible with adaptive foam so I grip better but hand tires quickly.
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