Brain Mets Sisters
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After my craniotomy I had whole brain radiation. I did lose the hair on the top of my head permanently. I keep the rest clipped very short and wear wigs which look nicer than my own hair anyway. The rest of the hair I had did grow back but is very coarse which is why I clip it. It was nicer pre radiation as it had grown back curly post chemo.
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I had my second WBR today, I'll have a total of 10. Right now I feel okay. I was reading a threads in FB specially for BC Brain Mets and had to leave the group. I'm just seeking encouraging stories right now, it's all my heart can stand. I know I tough road ahead of me, even after the radiation but I just feel so defeated right now. I'm 39 and am so blessed to have a supportive and loving husband and 2 beautiful daughters, ages 10 and 12.
The MRI showed a total of 10 Mets. My only symptom is numbness in the left side of the face, that's what sent me to the ER in the first place. I've been treating my liver Mets for the last 3.4 years with herception and perjeta. Which I'm thankful has managed to stay stable. I don't know how the oncologist plans on treating the brain ets now. I guess I'll find out after the radiation is over.0 -
Tricia hang in there. I’m 8 years out from initial brain Mets. I’m having 2 spots zapped next week- planning mri and CT are tomorrow. There is hope and life after a brain Mets diagnosis. I think I’ve had over 30 spots zapped in 8 years but don’t quote me on that . I just celebrated my 48 th birthday yesterday.
My kids are 18,16,13, and 10.
Currently I get kadcyla every 3 weeks for systemic treatment and I take tucatinib ( ttuksya) every days the latter is what crosses the blood brain barriers there is also neratinib. You have options.
Hang in there. The people on this site are full of knowledge and many of us are doing very well.
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Tricia, I second what LFF said above. A lot of us are doing well and are years out from the brain met discovery. There are others who had brain mets and post to other threads as well.
My biggest problem nowadays is the struggle with weight gain, I have a healthy appetite and eat healthy foods but need to incorporate more exercise to combat it. We will see if it all works but am happy to worry about that instead of cancer or covid for that matter.
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I have tnbc that metastasis in my brain 1st, so thankful they monitor me frequently, because less than a year later it came back. Recently they found multiple tumors in my lungs. Wondering how they are going to treat it
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a little bummed , well a lot bummed. I thought I was only going to have one radiation to my brain next week on 2 lesions. Turns out I will now be doing 5 days of treatment on 6 spots, 4 which have previously been treated. My team is being proactive and treating the 4 spots. It could be necrosis. I can’t let myself think about if it isn’t. I have basically run out of treatment options so I really hope it’s just necrosis. I’ll never know gor sure. trying to see the bright side and supposedly these spots were treated 2 years ago do there is that.
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LFF, I am sorry to hear this news for sure. I would imagine it is scary not to have many treatment options left. In your pocket and supporting you from here. I also know it does not matter how long you have dealt with these mets, when it feels like everything is closing in, it is never long enough, that is for sure.
Can'tcatchabreak, I am not sure about drugs for TNBC and the brain but I am pretty sure there are some that do. As far as other treatment, it most likely will involve brain radiation, your radiation onc will tell you which you would get, whether it be whole brain radiation which I had initially due to my aggressive form of BC or just treating tumours in the brain too. The medical oncologist can answer questions about the drugs that might cross the blood brain barrier.
Keep us posted, if there are TBNC people who are here with brain mets, they should be able to answer your question in more detail
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Leftfoot, I’m sorry to see the disappointing news. Whether necrosis becomes an issue or cancer is suspected, is a craniotomy an option? I struggled last year from a rare complication but the surgery itself was pretty smooth and recovery was not nearly as bad as I thought. I hate to think of being out of options and am hoping there’s a next step.
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LFF - I'm so very sorry to hear that you will need to have more brain tumors treated! I think it's encouraging that the mets were treated 2 years ago and that your radiation oncologist is being proactive. I'm on Enhertu for HER2 low on the DESTINY04 trial. Since you are HER2+, Enhertu could be very effective for you and there is evidence that it crosses the blood brain barrier. While not yet approved for HER2+, Trodelvy is another very promising antibody drug conjugate. I targets TROP2 and is approved for triple negative cancer, but I've been told that TROP2 is also overexpressed in hormone positive and HER2+ breast cancers. I'll be praying that your radiation treatment will be very effective!!
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Thanks for the info about the Enhertu. I have not progressed but am hormone negative and HER2 positive, I can file this info away for a later time if I progress again. I am limited in options because unless mets occur in another part of the brain, radiation would not be an option for me since my original mets site was radiated with whole brain radiation as well as local treatment when new mets grew there. No other mets showed up so far after the WBR.
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Mara - I hope that your treated brain mets will remain inactive for good! Theresa
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Thank you Theresa!
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Hello everyone.
Have a question and hoping some can relate and have some positive remarks. I was diagnosed with stage 4 January 2019, which metastasized to the brain. I was in remission for about 3 years prior. I have been on kadcyla for over 2 years now, every 3 weeks. Last month I started to do just once a month. I've been doing really good on it, NED from the neck down and last MRI looked good. I'm now experiencing neuropathy in my right foot, but of the course on the past month my whole leg feels numb. No pain. No loss of balance. Still able to walk, stand with no issues. It only effects me when I'm sitting. I had a follow up with my oncologist last week and mentioned this to her. She said that maybe they can lower my kadcyla dosage rather than taking me off. Its been so good I dont want to quit but she said if neuropathy get too bad it can be irreversible. Does anyone have insight on this or experience? The numbness and the thought of taking me off kadcyla causes me overwhelming anxiety. Thanks so much
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I would tend to want to try the lower dosage rather than coming off or possibly only taking a few weeks off if the MO would allow that. As far as the numbness, extra fluids and moving the limbs could be helpful while sitting with a mini exercise pedaler or the cubii for example. It would not rev you up too much but the circulation can help.
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Tricia,
I had more than a dozen brain mets when I was diagnosed almost seven years ago. Had WBR and then Gammaknife a few years later and then again at the end of 2019. I haven't had any brain mets symptoms all this time and radiation has been successful in keeping me stable. Many people are scared of brain mets including doctors but I have found them easier to control than my lung mets.
I have had a good QoL. Still doing dance and yoga classes, taking my dog out, and riding my motorcycle. I've been on the new ADC drug, Trodelvy, for more than a year through a clinical trial.
I would encourage you to get a second opinion if your doctor thinks you are a "goner" because of brain mets. My Radiation Oncologist told me she could keep me alive for years using WBR and GammaKnife and this prophecy has been true.
Hugs, Susan
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LFF,
So sorry to hear about the additional amount of brain radiation you will be getting. Are those other spots growing? If not, why zap them? As you mentioned, they cannot tell if a specific spot is alive or dead. They can only watch for tumor growth.
Surgery can be an option down the road depending on where the tumor is. I have heard that the recovery from surgery isn't too bad. Don't know anything about getting Avastin for brain tumors but I had an injection to my eye tumor. I also had a procedure to my eye where they zapped the blood vessels leading to the tumor. That treatment seemed to work very well. I wonder if they could do that in the brain.
Wishing the best for you during this new challenge.
Big hugs, Susan
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2 down, three to go. Feeling pretty good but the fatigue is a whopper. I don’t remember it from prior treatments. Maybe I have a selective memory or maybe I’m just older. Knowing I have all of your support sure helps.
The RO explained why he changed the plan from 1 day to 5; there are 4 previously treated spots ( over 2 years ago) that have some changes that overlap the previously treated spots. I have 1 spit that is near but not overlapping another one. The extra days are to clean these up since I already had approval from insurance. Hopefully it gets me to a blank slate to start over from.
So overall good news I suppose. If it is cancer it is very slowly growing and will be zapped hopefully to never appear again.
Thanks everyone.
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LFF, glad you are nearly done and glad you feel good. I felt pretty good on my local treatment of a recurrence back in 2018 but remember being really tired. I had 5 treatments to the same area as well. Better to take care of it than leave it. May you not have to treat anything else and get a break.
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Hello everyone
My mother was diagnosed with ER-negative, PR-negative, HER2-positive breast cancer on 28 Feb 2018. We gave Neo Adjuvant Chemotherapy (Epirubicin + Cyclophosphamide) every 3 weeks for 4 cycle. Post that, Paclitaxel and Trastuzumab was given weekly for 12 cycles. Chemo ended on 16th August 2018. Left wide local excision with axillary clearance was done on 30 August 2018. Radiation was performed after surgery (3D CRT). She was in Herceptin maintenance where doses were being given once every 3 weeks and she completed 13th cycle on 02 March 2019
She was diagnosed with brain mets (6 lesions) in April 2019. We went for gamma knife surgery and later she was on Lapatinib and Capecitabine. For a little over a year after that we got MRIs every 3 months and they were clean.
She was diagnosed with 3 lesions again in August 2020 so we did gamma knife treatment but after 3 months her tumor did not shrink. Doctor told us that it is inflammation and put her on steroids for 3 months. She missed her steroid medication for last month and for the last 2-3 weeks she has been experiencing issues in her right hand. And now she cant even move one of her legs. She has gained weight and her face is quite inflated.
We got her MRI done on 3 march 2021 and it shows 3 lesions at same place that have increased in size to (7.7mm, 21.4mm, 14mm). The doctor has advised us to get medical compression for 3 days (mannitol injection) to reduce swelling and told us it is not cancer progression. Also that it may be side effect of her stopping steroid in middle so she may have to start her dose again for longer time. They also tested power for hand and legs and it was on around 4 so they told us she should get her strength back.
She has been in a lot of pain recenty. Would be great if someone who has gone through a similar situation can share their experiences?
Thanks a lot everyone
Sonam
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so mag- you can pM me. I haven’t had the exact experience but have been dealing with brain Mets and lesions since 12/2012. I’ve had gamma knife snd cyber knife treatments as well as a crainiotomyto check to see if the cancer had returned or if it was necrosis.
I’d write more tonight but just completed day 3 of 5 of cyber knife treatment today.
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I can only speak to the prolonged steroid usage as I was on a high dose of steroids in the time after my dx to surgery and then during WBR. I did get swollen hands and feet as well as face. My feet became super painful as I was still doing alot of walking to burn off the restless steroid energy. I did gain a fair amount of weight as well. When I weaned off, I came off early and experienced significant pain in my feet again. The only thing I was told to do was flood myself with water until it came down and avoid sodium for a while. It took about a month for all of the steroid weight (mostly water retention) to go away for me.
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Hi all!
I am due to start whole brain radiation next week. My Onc talks about 'trying to stop it from growing' and 'controlling it'. This makes me so anxious as I was hoping to have them totally wiped out! Any thoughts please?
Also , I am having trouble swallowing recently and vision getting worse. Has anyone had problems from the brain mets which then got better after radiation?
Thank you so much!!
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I had to have WBR since my BC is the most aggressive and fastest growing form. Was not given a choice. I had that almost 5 years ago now. I have not had any other spots show up except for a couple small ones in the original spot which were reradiated 3 years ago and have not come back. For now, I have had it controlled and not growing for 3 years now. If it comes back in another part of my brain later, it can still be radiated.
As far as the swallowing and vision, if they are caused due to brain swelling or mets causing issues, they may well get better after treatment though I would lean on your RO to better answer this if no one hear mentions anything they went through.
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Sonam,
If the tumors have increased in size, I don't understand why your Mom's doctor is saying it's not due to cancer. Radiation can take a long time to show efficacy but it would generally not cause tumors to increase in size.
Also, please make sure that your Mom takes all of her steroid medication. Steroid dosages must be reduced slowly. If she doesn't want to take it anymore she should discuss this with her doctor.
I'm not familiar with "medical compression" or mannitol.
Hoping for the best, Susan
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I have my 10th (and possibly last) WBR today. The RO said I will have have a CT in about 3 weeks to give time for the radiation to still work, which I’m relieved because the left side of my face is still numb. Which at this point is my only symptom, which of course has me in a panic that the radiation isn’t even working. I can’t get one oncologist to even address this numbness symptom I’m experiencing. Also sorry for being all over the place but I’m going to switch gears yet again.....
I do have a couple of questions regarding chemotherapy treatment for Brain Mets. I don’t see my oncologist until March 18 but I emailed him asking his treatment plans. The only think he mentioned was switching my Herception/Perjeta (which I have been getting every 3 weeks for the past 4 years for my liver Mets, which are non existent at this point) to Kadyalca (sp?). However I’m so confused because from my own research this particular targeted treatment does not pass the brain barrier. So wouldn’t there be an additional treatment to treat the brain Mets? Would brain Mets chemotherapy be prescribed by my MO or RO? I’d be interested in anyone’s input. Thank you!
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So sorry, one more question, I noticed my hair is starting to fall out after my shower today here and there. Today is my last WBR. When I went through Chemo the first two times I immediately shaved my head, I didn't even wait for it to fall out, but decided to wait this time until I knew what chemotherapy I was going to have. I didn't even consider that WBR would cause me to loose all my hair? Would it be better to shave it all now? Thanks everyone!
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LFF,
Guessing you only have one more treatment left. As you remember of your own previous experiences, I didn't feel fatigued during or after Gammaknife treatment. Perhaps it was because my treatments were only one day. With WBR, I was fine during treatment but hit a wall of fatigue a month out.
Overall, as would be expected, I'm gradually getting more fatigued. I don't think it's age, I think it's the toll of being on treatments and radiation for so many years. We were diagnosed metastatic less than four months apart. Happy we have made it this far.
Hugs, Susan
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Tricia, since you had WBR, I would go ahead and shave your head now instead of waiting for it to fall out. I lost all of my hair and when it grew back, it did not grow back on top so I would start looking at wigs now unless you plan to keep it clipped. Not everyone gets all their hair back.
I must say,I like the wigs better than my bio hair which I keep clipped very short.
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tricia81- I am on kadcyla every 3 weeks plus tucatinibz. Tucatinib is s daily pill ( I take 4 a day) and does cross the blood brain barrier it is a Her2 targeted therapy. There is also Neratinib ( also oral) and a few new drugs that cross the blood brain barrier.
Maybe your team is waiting to see if the WBR wipes out your brain Mets without need for treatment. There are several people here that haven’t needed brain specific brain treatment after radiotherapy.
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thanks Susan. I too think it is a cumulation thing. Glad to have friends like you.
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