Brain Mets Sisters
Comments
-
Phet,
My first post-WBR brain MRI was after two months. Not much change. After another five months, everything was shrinking. Had scans every three months after that showing continued shrinkage of brain tumors. With tumors in the brain, you can't differentiate tumors that have died because the dead tissue has no way of exiting the brain. You can only guess that they are dead if they are not growing. My brain tumors were cystic, not solid so my experience might be different.
Headaches can be due to post-radiation inflammation rather than tumor progression. I actually don't know anyone who didn't respond to WBR. I do know of a couple of elderly people who died shortly after WBR. I think they were both very frail and the WBR and other treatments were just too much.
Hoping you will be able to calm your anxieties.
Hugs, Susan
0 -
hello again all
We ultimately elected to go with targeted treatment to the optic and c7 and c8 nerves to try and at least keep the symptoms associated with those tumours at bay if not improve things.
She’s in treatment 3 of 5 today and so far so good, just a little tired today. We decided against WBR after discussions with the RO who mentioned that the fatigue would be severe and last for quite some time. Her prognosis is short at this point (maybe a few months) so we’re trying to make the most of the days while we can (lots of trips to bakeries and other food related places - thanks dex for the appetite!)
she recently had a drain placed to help with the ascites which has given her tremendous relief from the tension/pain in the belly.
Susan - in relation to your question about transfusions to restart systemic treatment - her body destroys platelets very quickly so I don’t think that’s a viable option at this point. She had to have 5 units of platelets just to meet the threshold they have for placing the drain.Additionally, I think she’s just done with systemic treatments and all the associated side effects that come with them. Don’t blame her - she’s gone through 5 or 6 different treatments
0 -
essp3- hug
0 -
Hi everyone. This is my first time to post here in this thread as my mom was diagnosed with brain mets just last two weeks. She had 6 rounds of TCH (ER-PR- HER2+), mastectomy, and radiation last year. Supposedly, she’s about to have her last infusion (18/18) of trastuzumab this coming July 21th. But things didn’t go as planned
She suddenly complained of having a headache so we had her checked and yes, it was confirmed that she has brain mets. Anyway, she had her first session of WBR today. Her RO told us that targeted rad won’t work for her since she has multiple lesions to begin with.
To everyone who had WBR, did your lesions shrink and never recur? Also, could you please give me ideas on what side effects to anticipate? And some tips on how to cope with it. Our whole family is still processing everything, we just really hope and pray that my mom will respond to WBR.
Thank you so much
0 -
I have the same disease profile as your Mom and can help with some of this. I started in 2015, cancer was only seen in my breast although was also in my brain, too small to see. I went through similar chemo, AC times 4 and 1 taxol. I reacted badly to it so it was dropped and just stayed on the Herceptin. My brain met did not start growing in earnest until probably end of may 2016. I had pressure behind my eyes and morning nausea. As my brain swelled more, I had seizures and was unable to work. When the m et was found it was 10 cm, located at the back on the right hand side, near the ear.
My treatments did involve brain surgery, whole brain radiation, 10 sessions. I did have a leftover bit of tumour wrapped around a blood vessel so I was warned I would likely need to get the area treated once again. In 2018, around April, I did have another 5 sessions of radiation to the earlier surgical site. Since then, no new lesions and never have had mets from the neck down.
Side effects are variable depending on locations of the mets. For me, the WBR left me profoundly tired for a few weeks after. The steroids also caused my digestion to be terrible. Once I was off the steroid, I started feeling better. I did have nerve issues causing me to feel like my teeth were super sensitive even though they were not sensitive to food or drink. Food was a challenge to eat as well as I developed a metallic taste for a couple of weeks as well. I would say probably about 4 to 6 weeks after getting off the steroids and radiation, I started recovering. I recovered quickly at that point, food tasted normal and I could resume walking again.
I will say that a lot of my issues were also mental, being scared that I was going to die any time post diagnosis and wishing I did not put myself through the radiation though I would no longer be here.
I am sorry your Mom is going through this. It is a scary time but I am glad she has you for support. Social workers can also be invaluable so if she does not have one, it would be good to get. You may need help as well as caregiver stress is a real thing. As far as diet and exercise, I do recommend as much exercise as she can do, whether seated and just lifting her feet up and down or walking if her balance has not been affected, though walking with someone may be advisable. I also recommend digestive enzymes to help normalize digestion for her. They have been invaluable for me the last couple of years. Keep us posted about your Mom.
1 -
thyroid biopsy results are up in my records. Says I have adenomatous nodule with Hurthle
cell metaplasia.. They can’t determine if it is the benign or cancerous type. I will probably end up having to remove it which would mean I have no thyroid left. I had the right lobe respected in 2003. I’m ok with that as I can take meds and it should mean I don’t have to worry about thyroid cancer in addition to breast cancer. I will wait to see what my MO says when I see her Wednesday.0 -
Thank you for keeping us updated LFF. I will be thinking of you until you find out Wednesday.
0 -
Thank you Mara for sharing. My mom is about to have her 2nd session of WBR today. Praying that any SE won't still kick in after this.
I would just like to ask how long does WBR take effect? Do tumors respond quickly to this
0 -
It varies so I cannot really say how long it takes. The radiation works on the brain for weeks after. Someone else here may have an estimate but I think it can differ person to person and the number of mets they have as well.
0 -
I thought they told me it continues to work for like 6 months.
0 -
Did you also experience having blurry vision and difficulties in walking/balancing? Will everything be back to normal again once the mets begin to shrink? My mom is having a hard time walking on her own. Before having brain mets, she used to be so active and walk for like an hour and a half daily
0 -
Speaking for myself, once the brain swelling was gone with surgery and steroids, my symptoms went away. I had separate issues after WBR including not being able to follow TV and books for approx 4 weeks after.
Once the mets are shrinking and the brain is less inflamed from the radiation, side effects should be going away if she did not have leg weakness etc before the WBR.
0 -
Thank you Mara. Such a relief to know that!
Will continue to keep you posted on my mom’s journey. Today is her 3rd session of WBR0 -
LFF,
I have a friend who had thyroid cancer decades ago. She has to take meds every day but has no problems. Hoping you will experience the same.
Sorry that you have yet another thing to deal with.
Essp3,
Glad they are able to target your wife's optical and spinal mets. Hoping they will be able to stop her loss of vision and eradicate her spinal pain. If she recovers well, maybe she can have WBR.
Hugs, Susan
0 -
I had my 3 month MRI. Results were 4 of the 6 spots can't be seen. 1 spot almost gone and one only shrunk a little. RO said it will continue to improve over next 3 months. We will rescan in 3 months. So really good news I wanted to share with everyone who has recently had WBR.
Julie
0 -
Very nice Julie, congrats 🎉.
0 -
Julie,
Wonderful news! Thanks for sharing!
Hugs, Susan
0 -
Hi ladies. I’m new to this thread. So I had my 3 month scans since I been having this weird tongue issue dr ordered brain mri. So I don’t necessarily have Mets in the brain but it’s on the lining of it. The fluid surrounding it. Think it’s leptomenengeal. So I think this is where’d I post. Has anyone here experienced this. RO wants to start whole brain ration Monday. 10 sessions. I’m currently on Afinitor, faslodex (new meds only a week) and Zometa every 3 months. Also how should I prepare for the whole brain radiation dr said I might b a bit forgetful and will probably loose my hair and b fatigue. My sisters wedding is august 7. I didn’t want to feel all sick on her day. Any thoughts would help. Thank you in advance. Hugs.
0 -
Julie, I am happy to hear this as well.
0 -
I would honestly ask the RO to push back the radiation until after Aug 7th to be honest. That whole process of going in, getting a mask put over your face etc is tiring and the fatigue builds as you go. Since monday is the 2nd, I don't see any reason why radiation cannot be pushed back 7 days. Up to you of course but I think having those memories are important.
As far as getting prepared, best thing I can recommend is to stay physically active if possible, walking helps a lot. Would help with recovery from the rads. I was a bit confused immediately after for a couple of weeks or so but that lifted as the inflammation went away. Best of luck.
0 -
Hopfull, I’m sorry to heard about the lepto mets but WBR is the standard treatment and can be tolerated. I haven’t had it myself since my suspected lepto mets have never been confirmed by spinal MRI or lumbar puncture but I’d definitely defer to Mara’s experience. I wish you great luck killing to little brain brats.
0 -
Hopful2,
I had WBR in late March and my experience was fatigue and lots of nausea during that time and for a few weeks after. I am pretty much back to “normal” now - less nausea but my appetite is not at allwhat it used to be. Positive vibes coming your way for few side effects and a good time at the wedding, whatever you decided.
0 -
Dear new Brain Met Sisters
I had WBRT last June and it did work for a bit until Dec - I was on Kadcycla cos I have sleeping cancer in lungs liver and bones too, so then I started the newish combo of tucatinib tratuzumab and capecitabine - which so far is reducing the remaining two small brain mets which were still there and growing very slowly six months after WBRT. WBRT did affect me cognitively for a few months but it's almost normal now except not good at remembering names of people or places which is challenging cos I've also moved from Wales to France as of last year! French cancer treatment is very good though and I think I might still have a good few years, there is another new drug for brain, Enhertu which is also here, both drug combos largely but I think not only for HER positive. Be really interested to hear from any other Tucatinib takers - I teell my Tucatinibs I love them every morning when I take them and that seems to help
Kathy 0 -
Hello all - I wanted to report in here with the results of my first MRI post-WBRT. Just to remind you, I initially had 25 small lesions found, and was meant to have gamma knife on them. On the day of the GK treatment they did a final MRI and found 90+ lesions
I had to have WBR. I was so shocked by how quickly they had increased and quite pessimistic about my outcome.Well my breast cancer nurse described the results of my MRI this week - ten weeks post WBR - as brilliant! Everything (!) is gone except one 2mm 'fleck' in the left frontal lobe. That includes four tumours that were somewhat bigger (1.5cm). There's no trace of them. I can't believe I had more than 90 and now they can;t be seen.
I know things can change again and I can get more or they can return...but I was so scared that even this step wouldn't do much that the relief is enormous. I'll be getting scans every 8 weeks now to check nothing is coming back.
Thank you so much to this thread for your support and for reassuring me many times I asked on here about WBR - it's really been indispensible
0 -
that's amazin Phet.
0 -
Phet- congrats!!🎉 that is excellent news to receive!
Kathy- I have not been telling my Tucatinib I love it, but maybe I’ll start. I do guard them with my life, as I learned a bottle is more expensive than anything I own except for our house. When FedEx almost lost a bottle, I learned insurance won’t pay for lost meds 😳 thank goodness it showed up.
0 -
Hi Phet
That is amazingly good response, my consultant told me about there are quite a few people who years after WBRT are still brain free so stay positive
Hi Kikomoon
Yep the pricee alarms me too - different system in France we do pay health insurance but not for cancer, i feel both incrediably grateful for it and worried that the price stops people having it who need it where the system is different - keep in touch - hope tucatanib goes on and on and on and that you feel well with it.
Kathy
0 -
Phet, just read your news. Amazing results and glad to hear it.
I got my MRI results for my brain. I have some enhancement the RO did not like. She was not sure was more mets but we will scan again in 3 months to rule it out. If nothing shows, we will go back to 6 months between.
0 -
Great news Phet!
Mara - hang in there! I had enhancement a few years ago and they were preparing to treat with another shot of GammaKnife. I had an MRI the morning of Gamma and it showed the enhancement was just scar tissue, not another met.
My annual brain scan is August 11th and the anxiety is starting to kick in.
0 -
Thanks Goodie, I will. Not to stressed as of yet, have to wait until Oct for the MRI so cannot wait in worry I know. I am focusing on my walking instead, looking to get a couple of hours a day of walking in and at least a couple of long distance walks per week.
0
