Brain Mets Sisters
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Checking in with you 50sgirl. 2 more days of radiation, yay!!
My moms hair started to fall out this morning. She said it burns just like it did years ago when she was initially diagnosed in 2003 after starting chemo. We have family pictures scheduled for Sunday, scheduled them wayyy before we knew she needed to have the WBR. Mom still has her humor and said since she hasn't changed her hairstyle in 20 years she can still wear her wig that she kept haha. Other than her hair falling out she says she is feeling well. The headaches are no longer there after starting the decadron and that is definitely helping with her appetite. Praying repeat scans show success for you both, and everyone with upcoming scans. Thank you all for sharing your experiences with me so I could share with my mom. You all continue to inspire me daily.
I hope you are doing well!!
Hope everyone has a good week.
Emily
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Emily, I am happy that your mother is doing well and that her headaches have been relieved. The timing of the pictures, oh well. She will look beautiful anyway. I thought I might keep the little bit of hair that I have, but lo and behold, mine starting falling out today, too. I don’t know if I will see complete loss or just spotty, but it doesn’t really matter. I have noticed that my mouth is a bit dry, but otherwise I am doing well. I had today’s treatment, so just one more!!!
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I mostly just read and rarely post. I am happy for everyone having good results, and saddened to hear of struggles and losses. I want to thank you all so much for sharing your experiences on this thread. I learn so much more about what to expect with treatments than my MO or RO could possibly know. They are experts advising on how to proceed, but don’t live with the daily and long term side effects themselves. Patient perspective is so invaluable.
An update on myself: I had been on Verzenio and Faslodex from October thru February, all the while my CEA tumor marker skyrocketed to over 2600(the only measurable one I have - always predictive). So had a scan showing slight progression followed by a biopsy. Still HR+ 100% and Her2 negative, although the report stated Her2 1+. I was Her2+ until 2020. I have never had success with any endocrine therapy, I started weekly taxol in April and after 2 doses my tumor marker went down to 1300! My markers continued to drop each cycle. Then in July I had a brain MRI to check the one treated met I had two years ago. Holy caca! I thought surely the radiologist read someone else’s scan by mistake! I had 6 lesions in the cerebrum all under 1 cm. The cerebellum was so full of lesions they didn’t bother to count them. It looked like a cloud covering. So WBR was recommended. My MO said she suspected the brain Mets were Her 2+ and even suggested I was probably more than 1+ in my bones. She thinks bone biopsies are not always accurate due to calcification. Anyhoo we decided to try Enhertu first and save WBR if we could. In mid September, after 3 infusions my MRI showed remarkable decrease in the cerebellum lesions and slight decrease to stable in the cerebrum. I am afraid by saying it out loud I might jinx my next scan.
Both MO and RO said if cerebellum continues to show shrinkage, they may be able to zap any remaining lesions with SRS if there are only a few. I could save WBR for a later date. This would be best case scenario. I hope Enhertu continues to be effective.
Sorry this was so long! I don’t post often, but when I do I ramble on.
A question for anyone with experience: Have any of you looked into LITT (Neuroblate)? It uses heat to kill tumors in the brain. Any insight is appreciated. Thanks!
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Myshadow, great news on the shrinking lesions.
I have not heard of LITT yet but appreciate you sharing, I’m always looking for more options.
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Myshadow,
So happy for you! Great results from Enhertu. Interesting that your MO thinks your brain is HER2+. I think that's a plausible thesis and might be the reason for your brain's exceptional response to Enhertu. Hope it keeps shrinking your brain tumors so you can have the few remaining ones zapped individually. Keep us updated on how you are doing!
Hugs, Susan
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Thank you for the nice responses Illimae and Susan.
Mae- from what little I know about Neuroblate, it has been used for several years to treat gliomas and seizure disorders by neurosurgeons. But I believe these are just 1 or 2 larger areas, not several small ones. It is used for tumors inaccessible by surgery. As far as comparison to radiation, I believe it has similar stats for PFS and OS so not life prolonging. But the incidence of necrosis and cognitive decline due to radiation is much lower, so better quality of life maybe?
I have written to the contact for the LAANTERN trial with a bunch of questions regarding eligibility, and who this treatment might be effective for. I’ll keep you posted.
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50’s girl - I hope your last radiation treatment is/was uneventful. Congratulations on finishing. I hope your fatigue will ease up soon
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Thank you , myshadow. I did have my last WBR session today. It was uneventful.
I decided to bring home my mask. I am not sure why, but I did. I was given a certificate of completion and was given the opportunity to ring the bell. I declined the bell ringing.
The people who helped me during the process were wonderful. I thanked them and let them know that they truly made a difference. Their attitudes and kindness were not lost on me. I told them they had positive impacts on the people that helped at a time that could be scary and dark. I told them not to doubt their roles and always remember that they matter. That brought tears to their eyes then hugs. Isn’t it amazing how much a few kind words can make?
I will begin tapering off the Decadron in a few days. A follow up MRI will be scheduled for 8 weeks from now. That will be telling, of course. In the meantime, I have been given lots of direct-dial numbers in case I have issues. I have an appointment with my MO in a week and a half. We will get back track on that side, and I must say that I am looking forward to it.
Thank you all for your help. I know this is just the beginning.
Lynne
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50's, as I said in another thread, I am so glad you are done.
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Yay, Lynne! So happy you have completed the radiation! Hope you get some rest
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Lynne,
Congratulations! I know what you mean about the kindness of the techs. I actually missed them after seeing them every day for 20 days. I brought them a box of donuts on my last day.
I hope you will have a 100% response to the radiation. My RO told me in the beginning that she could keep me alive for years through WBR followed by targeted treatments if anything popped up. She was right!
Keep in mind that you might feel sudden fatigue about a month after treatment.
Hugs, Susan
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Thank you for all the well wishes. I know that all of you here have experienced similar situations, and your knowledge and support mean a lot to me.
Susan, Thank you for the warning about fatigue. I have told my dh that it could be expected so he is not surprised if I suddenly am overwhelmed.
I hope that we all see good responses for a long time as well as new developments to help us along the way
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One positive note on the fatigue, you do hit a wall about a month after but once you start recovering with better food and activity, it will resolve more quickly which is a bonus.
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For those of you who are a few or several years out from your original brain Mets diagnosis and treatment. What has your experience been for additional brain Mets? Have you had new brain Mets detected? Did you have targeted treatment for them? Has anyone had no additional brain Mets? Does it seem like the normal course of events for new spots to develop?
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I would not call it normal but can happen in a fair number cases. After almost two years post WBR, I got a couple of new mets. They were in the original spot and were expected as a met was wrapped around a blood vessel and the craniotomy could not remove it. Had 5 sessions to treat the area, no SE that time.
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50’s, I started with 5 spots but had new ones pop up every 6mo-1 yr since then, we just radiate those too, since I only have a few at a time. I had a craniotomy in 2020 and radiation to the cerebellum (no mets in that location since then). What I have now is currently shrinking on Enhertu, next MRI in 2 weeks to see what’s up.
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Reminder, if you are interested, we have a virtual (zoom) meetup happening NOW if you want to meet others who are in similar shoes. Join if you would like here: https://zoom.us/meeting/87236345561?occurrence=166...
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Mae and Mara, Thank you for the information about your experiences. I will discuss it with my MO and RO, of course, but I feel that input from people like you who can give me real scenarios are helpful
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50's...I haven't had any additional mets since my 1 in 2015. I had a scan-scare in 2018 where they thought they saw new development near the site of the tumor bed. I was prepped for Gamma Knife and the Brain MRI that was done right before the Gamma Knife radiation showed no sign of the new development that was on the previous week's scan. My neuro-onc was surprised but after reviewing the scans, felt that it must have been contrast that hadn't pushed through the area fast enough. Scans since that one in 2018 have been completely clear. My neuro-onc had said that he would treat any new spots with Gamma Knife, if possible, and if not WBR.
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how long after the wbr did you feel the fatigue and headache. My mom finished wbr on 10/14 and back radiation on 10/17. She's done pretty well but the last 3 days seems fatigued, complains of head ache and kinda out of it. Not much appetite. She's had issues with her Calcium being low last summer and had some of these same symptoms now. Her Calcium has been stable the last 4 times it was checked. Wondering if these symptoms are from the radiation or needing a lab checked. We have a message into her Dr. But seeing if this was any of your experiences as well.
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mymomsvoice,
I had the worst fatigue a month after treatment. Never had headaches. I did have trouble eating during treatment. Everything tasted like cardboard. Lost 20+ pounds during treatment. If she is losing a lot of weight that may make her feel weaker. A lot will also depend on how strong she was before having WBR. I wasn't young, 50, but I was in good physical shape.
Hope she feels better soon.
Hugs, Susan
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Unsure what I want to do today, doing up the rest of laundry that was soaking overnight, keeps whites bright. They are spinning now, made up more soap for foaming dispensers, will soon need more. My vinegar containers hold the largest amount of soap, since I like to heat up water and then add liquid soap, am soaking the vinegar bottle in cold water to cool down. Not planning to go anywhere. Going to vacuum my place and the apartment hall on my flloor and make sure I grab any extra flyers. If I keep up on them, the mailbox won't get as badly covered in flyers.
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Well I am now a member of the club I NEVER wanted to join.... 2 brain leisons....getting fitted for mask and MRI for cyberknife tomorrow.... any words of wisdom?
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One day at a time, if it feels better, close eyes. If it is the plastic mesh type mask, the only weird thing I experienced was when they had to use warm towels to mold it to your face. I have not experienced any other issue with them. Treat this as a regular treatment much as you do others and you will do fine. Yes I am sorry you find yourself here but as you can probably tell, a lot of us have survived this long term, Mae, Goodie, Susan and me too. You will do fine. Keep eyes closed in MRI as well and inhale a couple of seconds, hold a couple of seconds and breathe slowly out of the mouth almost like you are whistling. You could take a nap in there.
I did not keep the mesh mask if you are having mesh. In your pocket.
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Thanks Mara..>I appreciate your words...just curious why have eyes closed in MRI?? I don't usually close them?
I know you mention a lot of you have been around long time...but ya'll are HER2+ with Herceptin...quite different from mTNBC
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nicolerod, yes many of us with brain mets are HER2+ but Herceptin doesn’t cross into the brain well, so we have radiation to treat those. I’ve had 6 gamma knife’s (like cyberknife) over the years and found recovery very easy, I just rest for a day or two. Keep in mind that radiation works best over time and your 1st post cyber MRI might not show a big difference but after several months you may see them shrinking more. There are some chemos that cross the BBB (blood brain barrier) and if you have any HER2 at all, even low, usually considered negative or if your brain mets are HER2, then I’d ask about Enhertu. It’s difficult to know since you won’t have a biopsy but worth mentioning. Hopefully the hospital will play music of your choice during the procedure, I end up taking a quick nap, lol.Wishing you excellent luck.
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Nicole
Mara and illimae gave excellent advice. I had cyberknife to a skull bone, not brain met, but wore the mask. As soon as the mask is on, take slow breaths and count "one, one thousand; two, one thousand" etc until they come back into the room and take it off. I never reached 300 (5 minutes) before the mask was off. It helped me to realize how short a time it took.
Think your pocket is getting crowded, but will shove myself in there with armloads of positive thoughts (may require that I squeeze into my Spanx) What time is your appointment?
Eleanora
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Thank you Ladies...elenora...I will be in machine for 25 min..they already told me. They are getting both mets with one treatment...I am going to take Valum I think.
Illmae...thank you for all that info. I believe on my last biopsy my FSH said 0% HER2...so even if there was some..insurance wouldn't pay for Enhertu based on that.
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NicoleRod, I trust everything went well. I had only recommended closing eyes in case you wanted a nap as MRI for me is incredibly boring.
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Mara they said I could take valium so I think I am going to take that and try to fall asleep...
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