Brain Mets Sisters
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rachvaughn,
Thanks for the update. Hope Aly gets some control over her tumors with the radiation.
Hugs, Susan
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Thanks for the warm wishes, everyone!
Aly is on day 3 of a 5 day radiation treatment and so far it is just zonking her out completely. She was already pretty weak from bed rest so it's scary to see her too tired to try bed yoga or a walk.
For those who have done rads, would you mind answering a few questions...
1. How long did it take to see symptom improvement?
2. Which symptoms improved?
3. Did you take steroids or anything else to manage the radiation side effects?
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I can help u as I finished my 5 days in January 2019 during 46 degree cel of heat .
I lost my hair the start of day 12 after radiation
I have slight hearing loss
The exhaustion is only from chemo now not radiation because when I have my week off chemo my energy is normally 80% of what is normal for me
I was told I only needed steroids if I had inflammation which I didn't have.
I have depression now
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I had whole brain radiation a couple of years ago.
Same symptoms as Delvzy. Lost hair, some baldness was permanent. Wearing wigs now, quite enjoyable. Depression lasted a long time. The brain being inflamed does amplify.
I was exhausted for weeks, did not have an appetite. Stayed in bed or on couch most of the time. After a few weeks, I started walking around my home and doing gentle walking videos. The appetite returned and since I was eating and able to exercise, recovery was quicker. I was about 90 percent of where I was and felt physically and mentally better.
It will seem endless but there will be recovery. The only thing I have is very slight short term memory loss but I just write more down. I am as well as I can be and enjoying my stability for as long as possible. Hoping the same for the newest brain metsters.
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scheduled for another gamma knife treatment on Monday. That makes 3 of these in 10 months. Feeling really broken right now. I am so thankful this is an option but oh so cerybtired that I continually am growing new mets. I’m ready to get a little break. Really hoping to be able to find a drug tgat will control these in the near future. Of course that’s all subject to how my heart is and hid the rest of me is doing.
Thinking of all if you
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left foot, 5 months after my first gamma treatment, new mets were discovered again and I too wondered if I’d be dealing with new brain mets every few months but it’s now been almost a year with nothing new so far. I also know of someone who’s had gamma 10 times in several years with some long breaks in between. Hopefully, you get some time off soon to just relax and enjoy the day.
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Some new research on the role of estrogen in brain mets for TNBC young women:
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Thank you for the link Susan. That's a really interesting read. I had a clean MRI in December 2017 and then a 2cm brain met by June 2018, about half way during that time my periods returned to normal post chemo. Could just be coincidence but it does make you wonder.
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. Leftfoot here’s hoping that third time is a charm and this will wipe what were probably remaining microscopic mets illimae you continue to be my inspiration Encouraging to hear about that person who has had the option of gamma multiple times with long breaks bit more importantly that it was over several years I’ve been feeling very low since the brain mets dx in January cos you read the prognosis is so poor but just like many on these boards, the stats prove otherwise that survival and thriving is possible I figure every year we go our odds get better as new science and treatment options come out (especially more gentle ones).
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Leftfoot, I hope you get a break too. Rest is important.
I am in process of packing and purging 17 years of memories. My mother and I purchased a home together but she passed away in January this year. Looking forward to my new apartment. Beingbhelped by older brother and his wonderful family. Exhausted but they are so wonderful. I am so glad to have them in my life.
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Did my one session of SRS for the 2 spots that popped up. Let’s hope it works! Feeling ok, just tired. If there are SE’s how soon did you all notice them out from treatment?
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The only thing I ever noticed after radiation were some occasional random twinges, like a brain itch but it’s not painful, just odd. Also, it’s happened since my first treatment regardless of new mets or not, far less often these days though.
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I got a call yesterday from my Oncology nurse. She said that medicaid reimbursement for Herceptin is really low which will leave me with a big bill. They want to stop the Herceptin . I had mets to liver, brain and rib, all of which is NEAD. I have only had 15 treatments of Herceptin, counting the 6 with chemo. I am very confused. I was told I would be on Herceptin 12-18 cycles before I got the Mets scan results. After my initial scans showing mets I was told I needed it indefinitely. I am very concerned that they want to stop without even a full year of treatment.
I am very willing to stop if I really don't need it but really? Is this just a $$ versus my life? very confused
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Angit
I would be very confused and concerned too. You need to get these questions to your oncologist. This is your life. Hope you can get some answers and some relief.
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Anjit,
If I understand correctly my sister is on a state Medicaid program of some sort and she had Herceptin for 2 years (before she switched to Kadcyla). She never had a problem having it covered and never had to pay out of pocket. Continuous Herceptin is a standard treatment protocol if you have Her2-positive breast cancer, I just don't see how it can't be covered. Definitely definitely contest this. Good luck!
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Well, crap. I guess I'm joining this party also. When does the bad news quit coming!!!!! MRI today indicated a few spots in my brain. I think my MO said the largest was 1.2cm. I have a consultation appointment next Wednesday with the radiation oncologist. When do they use gamma knife versus whole brain radiation? Is the gamma knife treatment one session or is it over a number of days. My MO is making it sound like I would be getting 10-15 treatments but said it is up to the RO to determine.
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I got WBR initially because my solitary brain met was 10 cm. It was also recommended since I have IBC which is aggressive and grows fast. When I had a recurrence in the same area, I was told by my RO that they like to spot treat smaller ones at my cancer centre. When we were treating the recurrence, my entire surgical bed was zapped over 5 treatments. So far after almost 3 years, my brain shows no swelling and the spots are shrinking. Overall, size of the mets can be a factor when treatment is being planned.
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Welcome Twiggy, I had gamma twice and the criteria has been 5 or less spots and less than 2cm. Each time was a single session lasting about 20 minutes not including the head frame placement and pre rads MRI. There seems to be a shift lately with a preference to try targeted rads first when possible and save WBR for later. Your neuro rads onc should have a plan in line with the standard treatment. Please let us know what they say, we all compare options.
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I found out today my insurance is paying, but it is less than half the amount the center pharmacy is charging. Definitely feel like it is a $$ issue. Very disappointed in my doctor if she sticks to this choice to not continue. I wanted to be sure you all knew about https://www.patientadvocate.org/. I applied for that, and hoping that will help my doctor decide to continue. If not I may seek treatment elsewhere. Her2+ is not something I want to play with when it has already traveled...
I never had Gamma Knife. I had one spot on my brain. It was around .5 mm. My doctors here did Stereotactic Radiosurgery with a plastic mask that held my head in place... No screws/nothing attached to my head... My last scans showed that it is completely gone. The liver spot and rib spot are also gone. I did not have radiation to the liver, but did to the brain (1 tx) and rib (13 tx). It took about a month to get any energy back for me. I had a little bit of memory issues but they have gotten back to normal.
Praying for you!
Angi
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Welcome Twiggy and sorry you have found yourself here. I also have a very aggressive type of BC and had 2 spots recently treated with SRS. I was worried when my RO said just 1 treatment, but she said multiple treatments aren’t always the best fit. If the spots are small 1 big dose can be better. If it’s larger than multiple smaller doses work better. It just depends on the size and # of mets. Mine this time we’re 5mm so they were both small. Won’t know till next month if it’s done anything. Wish you the best.0
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Would the same RO be in charge of either WBR or gamma knife or is it a different specialty? Also, do only larger facilities have gamma knife capability? Sorry for all the questions. I'm just trying to gather as much info as I can before my consultation appointment.
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I asked my RO what the difference between mama knife and stereosstic radio surgery was and she said gamma knife was more name brand, but they were essentially the same. I haven’t done any research to verify what she said about it. I would think the same Neuro RO would be in charge. I have a different RO for when I had breast radiation, but if it’s still the brain the Neuro RO you have should be able to handle multiple types of radiation treatment options unless it’s something maybe more cutting edge or facility specific due to a new method or something. Just my 2 cents. Questions are always good. Knowledge helps me deal with my own situation and I tend to ask a lot of questions. Plus here on BCO you have many people who have gone through similar situations and can add to the pool of knowledge or experiences
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This is what my SRS looked like vrs Gamma Knife where the stabilizer is more open, but also invasive into the skin. The yellow is a plastic mesh, kind of was like a Halloween mask, that hardens in place. They can use that same mold each time so that your head stays in place for the radiation.
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Twiggy, the neuro RO would have the plan, although a tumor board may weigh in on the case, if that’s how your facility works. Please let us know how tge consultation goes.
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I had the same SO for both sessions on my brain. My machine looked the same as the picture except we do not use the halo screwed into your head. Just a mesh mask to hold me still.
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Helpful tip I picked up from Susan in SF is to imagine you are at the spa. A warm towel helps mold the mask.Feels goid and I fell asleep the second time around.
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This is what I have learned from my experience with gamma knife vs. SRS
SRS is limited to about 5 spots you can’t treat more than that in one session.
Gamma knife can tray lots and lots of spots/ I was going to do SRD but switched to gamma knife so I could treat any new spots that showed up day of treatment. I had over 30 spots treated in one day in one session with gamma knife.
I have photos of me in the metal frame they attach to your head for gamma knife if you’d like to see it. I also have one of me on the gamma knife table:l as well.
For me it’s the same RO.
I have my 3rd gamma knife session in 10 months on Monday.
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leftfootforward,
That is very helpful information.
Thank you so much.
Also everyone, regarding my situation with Medicaid's reimbursement. I contacted Patient Advocate Foundation, https://www.patientadvocate.org/, and got assistance there. I am hoping that will help. I have not heard back, so I am going to keep showing up for my Herceptin every three weeks.
I also found this website, in case anyone else is having trouble with getting Herceptin and needs it... https://www.gene.com/patients/patient-foundation/s...
Thanks for being there everyone...
Angi
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Thanks for the helpful info on radiation side effects. Aly took a medical flight from Boston to Reno this week and she is recovering there.
@Angit: I am so sorry to hear about the insurance troubles. We had a huge battle with insurance over Vimpat, one of the only anti-seizure drugs that was working. I wish the healthcare system was not so completely broken.
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4 hours of gamma knifevtoday in the tube. Long day. So glad it’s over. I really hope I get a bitbofvredpir from all of this. It was hard today.
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