Brain Mets Sisters
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Waving right back.
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bless her.
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Great news, LFF!!
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Hello everyone
Thanks all for your advice and support!
Update on my mothers status: She was feeling better after manitol injections and has been tapering off her steroids every week (starting with 2 mg and now she's at 0.5). Doctors were still not sure whether the swelling was a tumor or radiation necrosis and get regular MRIs as biopsy in India is a bit risky. She underwent physiotherapy and regained some movement in her hands and legs. But last few weeks things have deteriorated and she has been experiencing headaches and unable to sleep. Yesterday she was showing early symptoms of aphasia and was not able to form words properly. We are very worried, doctor has advised us to get an MRI with contrast + perfusion + spectroscopy as her headache is still not going away. Has anyone had a similar experience and can share some advice on what to do?
Thanks a lot everyone!
SonamBackground:
2/13/2018: Diagnosed with ER-negative, PR-negative, HER2-positive breast cancer.
8/16/2018: Finished chemo. Neo Adjuvant Chemotherapy (Epirubicin + Cyclophosphamide) every 3 weeks for 4 cycle. Post that, Paclitaxel and Trastuzumab was given weekly for 12 cycles.
8/30/2018: Left wide local excision with axillary clearance followed by radiation was performed after surgery (3D CRT)
4/1/2019: Diagnosed with brain mets (6 lesions). Gamma knife surgery and put on Lapatinib and Capecitabine
8/1/2020: Diagnosed with 3 new lesions. Gamma knife surgery but no reduction in tumor. Put on steroids (Dexa)
3/3/2021: 3 lesions still there and increased in size to 7.7mm, 21.4mm, 14mm. Issue with mobility in legs and hands. Doctor thinks its necrosis and prescribed mannitol injections.0 -
I finished the WBR. Wasn't too bad. But now I have this weird taste when I eat (anything) that is really gross. The texture of all food makes it difficult to eat anything. Did others have this? How long does it last? I'd like to enjoy eating again at some point. Other side effects of WBR are also weird and disturbing. When does it end? I almost wish I never started. This is the longest period of feeling really bad in my life.
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Jaycee
I still have weird taste. Like everything is dust. I can't eat anything like bread crackers etc. They are all too dry. Not sure if it is from radiation or my new meds. But I still have watery eyes. And two weeks ago an ear infection that I am sure is from radiation. Still dealing with both. I agree these symptoms suck. And everyone denies that it's from radiation. I too want to feel somewhat normal. It would be nice to be able to enjoy dinner with my family.
Julie
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Of course radiation affects taste and causes other weird things. The brain is affected, I believe prolonged steroid use had an effect. It took me about 4 weeks after my taste and other effects to start going away.
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hi everyone!
It’s been about 6 weeks since mama was diagnosed with brain Mets. She completed 3 rounds of STS radiation and started her new chemo regimen (tucatinib, herceptin, and xeloda (I think those are the only ones)) she’s also taking keppra and dex but at a lower dosage - yay!
she has an MRI on Friday, we’d love prayers and good thoughts sent our way. Emotionally, she’s doing really well. She has a great routine and enjoys being retired. Physically, she hasn’t had a seizure since the first one in early May and has some unsteady hands, but her balance and walking is getting so much better!Thank you for all the hope and kind words. They are everything.
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Sending my best wishes and healing thoughts to your mother. Keep us posted on the MRI results.
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LFF,
Great news on the scans!
Hugs, Susan
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hello all,
I’m new here posting on behalf of my wife (37, stage IV with brain mets - assumed to have leptomeningeal involvement). First brain met (near brain stem) was found in oct 2020 and treated with SRS with good results. Further disease progression found in a follow up mri in Jan 2021 and she was put on herceptin, capecitabine and tucatinanib. She’s had a pretty rough go lately with a couple of hospital stays (one in April where she presented with disseminated intravascular coagulopathy and was given hours to live at one point. A second stay a little over a week ago where they found a staph infection) and has been off treatment since April.
She has lost her hearing in both ears and is paralyzed on the left side of the face due to tumours on the vistibular nerves and a recent mri found a tumour on the right eye optic nerve with a possible second one on the left so blindness or at least blurry vision (already occurring when tired) is a possibility and the qol goes to effectively 0
We’re currently considering WBR in hopes to at least keep things stable for a period of time but I was wondering if others could chime in on their experience with side effects from the treatment. Reading through this post history, it seems like fatigue and nausea seem to be the common side effects. Her RO said that she would likely be very tired for a while and I’m struggling a bit with if she’ll see some improvement in either the symptoms or side effects before the disease progresses further
thanks - happy to provide more info.0 -
essp3, I don’t have words other than 4 letter ones. I’m sorry you’re both in such an awful place. I haven’t had WBR but I so sincerely hope it improves things for your wife.
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Essp3- I am sorry that you are enduring this. I too have not had WBR but have had lots of cyber and gamma knife radiation treatments to my brain. Others on this board can speak to the effectiveness of WBR and relieving some symptoms.
Hugs to you snd your family
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Essp3,
I am so sorry to read all that your wife has had to endure. To be honest, I've never heard of anyone having mets on the vistibular nerves or the optic nerve. I had a tumor in my eye on the retina. I had my eye tumor done concurrently with my whole brain radiation. The eye tumor took a while to die and left me with a detached retina. I did a couple of other procedures such as having chemo injected into my eye and having the blood supply to my tumor zapped. Not sure what worked. I have two brilliant Ocular Oncologists. One of them moved back to the UK. Where are you located?
Are they unable to pinpoint where in the brain the problem lies so that she can have SBRT instead? WBR would be done if she had many tiny tumors too small to see with scans. If she is already weak, WBR may be too much. I did well on WBR but I did it right after my Stage IV diagnosis so I was still healthy and strong. Does she have a Radiation Oncologist who specializes in brain mets from BC? My Radiation Oncologist, Penny Sneed at UCSF, had that specialization and I think she did a fantastic job.
Do the doctors know why she experienced disseminated intravascular coagulopathy? So glad she was able to get over that.
I wish I had more helpful information. My heart breaks for you and your wife.
- Susan
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thanks for the reply Susan (and the others with messages of support - it’s been a long road). We’re located in Calgary, Alberta, Canada.
There’s numerous tumours in the brain and along the lining which prevents SRS from really being an effective option. We had originally planned to go with SRS on the vistibular nerves to try and at least prevent the one good side of the face from being paralyzed but with the optic nerve issue my wife is more inclined to go with WBR to try and salvage some quality of life.
The RO (not sure what if they specialize in BC brain Mets) was planning on doing just the vestibular nerves with the potential option to treat the optic nerves at a later time if they became a problem (this convo happened Wednesday). On Thursday she had issues with her vision going black in the right eye for a few seconds periodically throughout the day.
As far as physical condition goes - she’s far from her previous self but still wants to walk around the house (with a walker - the dex has really impacted her legs) and do outings. She’s weak yes but not bed ridden.
As far as the DIC goes - the MO mentioned it may have been drug induced as it slowly improved the further away from stopping the drugs she was. I think she still has a chronic form of it - platelets continue to be low and are being monitored twice a week though lately they’re higher than they have been since April.
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Essp3, I’m so sorry you and your wife find yourselves here and are dealing with so much. I’m 3 months out from WBR which I needed due to “numerous” small mets. Fortunately they never caused any symptoms so I can’t speak to the relief of them. I will say the side effects (fatigue and nausea) at least in my case, are much better at 3 months out. I really hope you and your wife are able to find some relief.
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I know I haven’t had WBR but have had brain radiation and a craniotomy. I found the worst thing are the SE from the steroids and anti seizure meds they put you on. I hated feeling fuzzy heafe and having insomnia.
Just thought I would mention these Side effects as well.
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Kikomoon - how bad was your fatigue? Were you able to do anything while you were up or no?
leftfoot - somewhat thankfully she's already on kepra and dex so we're able to manage both without much issue (apart from the leg weakness)
Today the vision in the right eye is very blurry. Obviously my concern about losing the ability to communicate with her is growing day by day. I'm sure that the WBR will be difficult but at this point what option is there really? I guess the one saving grace is that she's been approved for medical assistance in dying so we can pre plan that for a potential situation where she completely loses her vision0 -
Essp3, in my case the fatigue was enough to stop working (office job), but I was still able to do things. Lots of sleeping in late and naps for the first month. That is just my experience though. I have heard some people have a delayed fatigue about a month in. I’m not sure this helps but I am thinking of you two often and hoping for healing and comfort
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Essp3,
My worry would be that WBR may make her very weak and wouldn't be the source of any of her symptoms. I didn't have any symptoms from my brain mets. Hoping she can regain her hearing by zapping the vestibular nerve and save her vision by doing the same to her optic nerve. What about systemic treatments? Since she is triple positive, she has lots of options. Many have done well on Enhertu. Can you get second and third opinions?
WBR does effectively kill tumors. The brain seems to be very receptive to radiation so if that is the source of her facial paralysis, it may work.
Glad you have right to die laws where you live. Having that kind of control can give her some comfort, I hope. I spoke to my Palliative Care doctor about it recently.
Holding you both in my heart.
Hugs, Susan
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Hi everyone!
Just wanted to update you all on my mom's latest MRI result. This was the first one she had done since her 3 SRS radiation treatments and it's thankfully, great news! No new tumors and her previous lesions have all shrunk or disappeared! She's still on her cocktail of meds (Herceptin, Tucatinib, and one more but I can't remember) and will do a follow-up MRI in October. Our family is so grateful to all you women and your families. Thank you for all your words, prayers, and stories of hope. I'll be on here periodically to share updates and to read your stories.
Thank you, thank you, thank you!!
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Hi Susan - spoke with her RO today. He ultimately recommended against WBR as he figured it would fatigue her severely for whatever time she has left. So my wife is now considering the targeted treatment. Definitely a blow to her either way - another option taken from her.
As far as systemic treatments go - she's only her2+ at this point at the cape/herceptin/tucatinib combo is what she was on when she presented with acute DIC in April. Since then her platelet counts have recovered slightly and are stable but they're still far to low to restart any systemic treatment (they're even too low for her to get her ascites drained without a platelet transfusion). Even if it were an option, I don't think she'd go for it at this point
She definitely felt better after successfully going through the assessments for medical assistance in dying. Thankful we have that ready if she wants it.
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Dear Essp3,
Good Morning. I have been following your wife's saga since you first started posting. First off, I am so sorry that you are both going through this. I and my fellow cancer warriors here know exactly how you both must be feeling. I am also HER2+ and fully expecting to deal with brain mets at some point. I had a scare in April, but it turned out to be nothing serious.
I know things are pretty dire and scary for you both, but please try to hang on. I've been and HER2+ MBC warrior since February of 2016. I was on the edge when I was first diagnosed, but my medical team brought me back.
As for WBR, I know that fatigue is a serious side effect, but perhaps her medical team can find some way to lessen this. She should be able to have whatever treatments she can bear at this point. Can she do it as an in-patient? I had radiation as an in-patient because of my fragile health and it certainly helped to have that care when I was on the precipice of life.
Perhaps I missed this, but have you sought any second/third/fourth opinions? Are you near any major research hospitals or cancer centers? Oncologist recommendations can vary widely from one provider to another and some may be more astute to the unique treatments available for your beloved. Palliative care can be a wonderful addition as they helped me so much when I was in such dire straits. It certainly helps one to feel more in control when one's life is careening out of control. Anyway, I wish I could offer you some better advice or solid guidance, but please know that I am keeping you both in my heart and sending positive vibes.
Sending you all good wished, positive thoughts and lots of love for your continued struggle.
Nancy
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Essp, if you and your wife want to push the issue of WBR, up to you. It depends on where she is at, her wishes too. I can understand that if she only had a couple of weeks to a month, making her feel as well as possible would be the best and I don't know enough about where she is at healthwise either. I suppose a second opinion could be in order. I hope whatever happens, you can feel our support at our end.
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Hi brain mets sisters. Thank you for the answers you've already given me on my journey with brain mets
As some of you may remember, I had WBR nearly seven weeks ago now. Up until now I've been going ok, tapering down steroids slowly until I was on 1mg a day this week, and energy levels gradually improving. I was planning to go off them completely next week. The last few days, I've started having headaches again - sort of intermittent dull headaches, with occasional postural headaches when I stand up or cough. I've also felt a lot more tired all of a sudden. I thought it might be from chemo (I'm on Taxol and Avastin) but the postural headache element worries me. I told my breast cancer nurse and radiation oncologist yesterday and they didn't seem worried - they thought it might be from chemo and/or said that the WBR can still be working. But they also know I want to be scanned earlier (the MRI is planned in three weeks time) and I think were trying to talk me down from a panic about that.
Others who have gone through WBR, does this sound at all familiar? I know it can take a long time to recover but I guess I'm surprised I was improving all the time and now I feel like I've gone backwards.
Deep down I'm also terrified this suggests the radiation isn't working. I hoped to come off the steroids by now and not have symptoms, meaning I could have felt more confident things were good in there. Instead I'm back in the dark headspace, worried the tumours are growing and increasing the pressure in my head. I really hate this
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Your brain has been through a lot with the WBR. It is correct that the radiation works in the brain for months afterward. Your brain is still inflamed, not necessarily swollen or whatever the issue was before, but just getting itself situated after what it has been through. A headache, though scary, is not something to be feared unless it feels like someone is squishing your head in a nutscracker ie. a pressure in your head. If you not having other symptoms like seizure, balance issues, sudden forgetfulness or aphasia, a regular pain reliever like tylenol if you can take it would not hurt. Dex may not be needed unless it has improved the headachey issue. If they are willing to give an MRI then of course take it but keep in mind that there is a lot your brain has put up with a lot.
I would also like to let you know that although you have had WBR, your brain can still be treated again should the need arise. Not necessarily another WBR but treating spots as they come up.
In my case, I had WBR and one other radiation to my original tumour bed. The tumour bed can no longer be treated with radiation but if mets showed up elsewhere in the brain, the rest of the brain is still open to be radiated. Nothing has shown up after the treatment in 2018 so I feel pretty confident.
I hope the MRI eases your mind and that as time goes on, it is less of a dark place for you.
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Essp3,
Have they discussed giving your wife a blood or platelet transfusion? Perhaps this would allow her to get back onto systemic treatments or receive radiation. At the very least, she should feel better after a transfusion. I haven't had one but a couple of women in my support group said they were amazed how much better they felt after a transfusion.
Have you read "Dying to be Me" by Anita Moorjani or "Radical Remission" by Kelly A. Turner? It's possible to have hope in even the darkest times when dealing with cancer.
Sending love and positive energy your way, Susan
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Thank you Mara for your very reassuring words
I decided to go back to 2mg of dex for a week, and the headaches almost completely disappeared. So whatever it is, the steroids are keeping it under control a bit. It's helpful to think it can be inflammation in the brain from the WBR still, and not necessarily the cancer growing or refusing to shrink! I really hope that is the case. And perhaps soon I'll be able to get the dex right down and eventually get off it. I actually don't feel I suffer side effects too much from dex - except weight gain and puffy face! and I'll take that over feeling symptomatic - so I'm ok tapering very slowly. I expect I will need SRS at some point and only hope I can be a candidate. I had 4 medium sized (1.5-2cm) and innumerable small mets, too many for gamma knife (and the place I went to try to get gamma will do around 40...) I'm terrified of what will happen if they don't shrink, or if they do and then start growing again, as SRS may very well not be an option and I can't have WBR again. I just have to cross my fingers and pray.
I'll bring up the side effects with my team again and see what they say - now that I'm controlling things with the dex again I can feel a bit calmer about it...
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Phet,
Like you, I had too many brain tumors to do anything but WBR. More than a dozen easily visible ones and many more they believed were too small to see on the scan. The WBR cleared out all of my brain tumors. A couple of tumors appeared in spots where tumors were pre-WBR three and a half years later so I had Gammaknife to zap those. One of those tumors was only 1-2mm! Two years after that, I had another couple of tumors zapped, again in spots where I originally had tumors. Since then, my brain has been stable (knock on wood!).
The reason why I am telling you all of this is that my experience seems to be pretty typical. My RO even told me at the beginning that she could keep me alive for years with WBR and Gammaknife. She specializes in BC mets to the brain so she has a lot of experience. I think another reason to expect that you will not need WBR again is that you are HER2-. HER2+ disease can be more aggressive in the brain.
Hugs, Susan
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Thank you SusaninSF, that is very reassuring! Do you recall how soon after your WBR you were first scanned? I'm torn between pushing for an earlier scan to see what might be causing some swelling, and fearing scanning too soon will give a false impression of how well it has worked.
Your RO sounds amazing - that's what you want to hear! To be fair to mine and to my general oncologist, both have said they're very confident it will work and tried to quiet down my anxieties and fears about it. But it's easier to believe them when I'm asymptomatic; harder when I have these headaches. I just know of a few ladies recently who have died after WBR didn't work and it has put the absolute fear of god in me. But I have to remind myself - I am not that other person; my cancer is different; this treatment works for most people, and I have to trust the process.
Hugs to everyone
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