Brain Mets Sisters
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SuperDeNova,
So sorry to hear that you have been nauseated with a headache after your first WBR treatment. I had 20 days of WBR since my eye tumor was treated at the same time. This also meant that each of my treatments were not as strong. My only SE was loss of taste. Sounds minor but I had a hard time eating and lost over 20 lbs. I wonder if they could reduce your daily radiation since you are having such bad SEs. Of course, this would mean stretching out the number of treatments. I don't know if you are doing any alternative medicine but I believe it was the Chinese Traditional Medicine that kept me from having bad SEs. Here's a reprint of the recommendations from my Chinese Traditional Medicine doctor:
Here's a list of foods Master Hong told me to eat every day during treatment:
longan, asparagus, aloe, okra, cucumber, red date, dragon fruit, honey
He wanted me to blend and drink these things as a smoothie but it tasted terrible so I just ate each thing separately. They all taste good separately except for the aloe. I would hold my nose and take a shot of aloe juice. Then pop something better tasting in my mouth right away!
He also prescribed a tea to drink twice a day:
3g dried honeysuckle flower, 3g dried chrysanthemum, 2c water, boiled for 15 minutes
You can find these on Amazon or at a Chinese herbal shop. I would carry a thermos of it with me to my treatments in the morning and then drink another cup at night.
Other than that I would say sleep a lot and stay as active as possible without wearing yourself out too much. I continued to dance and do Iyengar Yoga every day. During treatments I didn't have a lot of fatigue but about a month out, like most people, I experienced a lot of fatigue. Lasted a few days.
If you don't have any symptoms, ask that you not be put on steroids. I didn't take steroids, just a low dosage for one day as an experiment. If I had taken steroids, I probably would have been able to eat more and would have had more energy but I was super averse to taking them.
Lastly, when I was being treated, I tried to think of the radiation as the "healing light", which it is. This helped me to relax.
Hugs, Susan
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Great advice Susan about the healing light.
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Hey everyone. Ever since I had my second COVID vaccine I have been getting headaches that feel exactly how occipital neuralgia is described. I have gotten these types of headaches which are one sided for many years but they only lasted a day or two. I never sought treatment for them because they never became bad enough. I did get a head CT back in 2010 or so that did not show anything. I always thought my mastectomy was partially the cause of them. Anyway, it's day 20 now and I still have them. Head and neck massage helps as well as Advil but they don't seem to be going totally away. I am going for an MRI on Wednesday but I am wondering what your first symptoms of brain cancer were. Were headaches presented first? I have no other symptoms. Thanks very much.
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Hi all - I posted a week ago about my brain mets diagnosis and wanted to fill you in on developments. I got second opinions in London last week and now have not one but TWO hospitals offering me gamma knife (a reminder: I have 25+ brain mets). One is on the public system here (within a top brain specialist hospital) and one privately that I would pay out of pocket for. The private clinic can do it four days before the entirely free public hospital. I’m trying to decide if the four days earlier will make a difference.
All of my mets are under 1cm and I’m asymptomatic (except for a brief headache if I cough). I was diagnosed from a scan that took place nearly 2 weeks ago. I’m terrified that more mets will crop up between now and the gamma and they’ll turn me down at the last minute (though the public hospital told me they treat whatever they find on the day). The private treatment would be this Friday - the public the following Tuesday.
I have two questions for the hive mind: what would you do in my position about the public vs private decision? I have reason to believe the actual treatment will be the same. The private will cost me about £20,000 - money I have thanks to generous friends and family, but which I could save for other, later medical costs.
The other question - has anyone had as many brain mets as me and had a decent outcome? Everyone I read about seems to have 3 or 4 - I don’t know how I managed to end up with 25+
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Phet
Sorry I can't comment on the number of brain mets. I have 6 and they are new to me. However I would say if you think the treatment is the same I would wait the 4 days. As you say there may be a treatment later that wouldn't be paid for or a drug that isn't approved. That's my personal opinion but I know you will make the right choice for you.
I hope you are hanging in there. Waiting is the hardest part and it is definitely hard to be strong. Please keep us informed on your procedure. Will you be staying on your current chemo treatment after cyber knife.
Keeping you in my thoughts.
Julie
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I’d wait too, 4 days is nothing for subcentemeter mets that aren’t currently causing trouble. And I can’t speak to the number of mets question either but I new someone who had 17 successfully treated but I don’t know how long term it would have been as she passed from her liver mets about 6 months later. Ugh, cancer sucks.
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Phet,
I'm surprised they didn't recommend WBR if you have so many tumors. Are they all in one area? If not, wouldn't you end up with something close to WBR? I only had about a dozen brain tumors but my Rad Onc thought there were probably many more smaller ones they couldn't see on the scan so she recommended WBR. Since then I've had two gammaknife treatments in 2017 and 2019 to zap a couple of small tumors. So far, so good (knock on wood).
I agree with the others that 4 days is nothing to worry about if you are asymptomatic. I was also asymptomatic. My largest brain tumor was 2cm.
Glad you have a lot of support!
Hugs, Susan
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Thank you everyone for your advice
SusaninSF - my normal hospital did recommend WBR, but I went for the second opinions and they have recommended Gamma. I think the number of tumors they can do safely keeps increasing with new evidence, and perhaps it's also to do with the size and location of the tumors I have at the moment. I want to hold off on WBR so I can do it in future if needed (so long as the alternative is safe and it works, of course). I will be scanned again 8 weeks after to check if more have cropped up and I've been told to expect them to find more, which will be zapped as we go. Jizn - I am on gem/carbo at the moment and here in the UK they usually only give 6 cycles then switch you (even if it's still working) to let your bone marrow recover. I have had 5 when they found the brain mets, so I've been told I likely won't have the 6th and we'll take the opportunity to give my body a break and then decide on next treatment. My other mets are in my lungs and mediastinal nodes and I had a chest scan last week to check if they're still stable.
Illimae - that's useful to know, thank you. A woman here in the UK who runs a BC charity, Kris Hallenga, had 52 done a few years back (!) but I think that was over the course of a year, and also she was ER+ (I am triple negative) so better outcomes overall for that sybtype
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Hi phet7178, i wouldnt pay just for 4 days... although brain mets make you scared.
My mum brain mets:
- April 2018: “uncountable” brain mets under 1 cm (more than 20 mets too) treated with WBR and she was NED (in brain) 7 months after.
-4 new mets in July 2019 treated with gem/carbo getting NED again (in brain).
-March 2021 “uncountable” brain mets again treated 4 weeks ago with WBR
Both time, since brain mets diagnosis until WBR it took like 3 weeks
luck!0 -
phet, that is interesting to hear about the woman who has had 52 mets zapped over some years. I was never given the option to just radiate the location where the tumour was but that was because of the speed that the mets would have grown. Better for my outcome to get WBR to hopefully kill any other possible cells before they grew and became a problem.
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Phet - I'm weighing in late, but I agree with the others that 4 days should not make a difference. I would only go with the self-pay option if you felt that you would receive better treatment, which does not sound like the case. Thanks for sharing what you learned through your many consults! I hope that your chest CT will be stable or better and that your oncologist will have a good plan for systemic treatment! Since developing brain mets in April 2020, I have been on Enhertu and Trodelvy. I've had no new brain mets. There is some evidence from trials and patients that both drugs cross the blood-brain barrier. I believe that Trodelvy will be approved in Europe and the UK for TNBC soon, if it isn't already approved. Best wishes!Theresa
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0fet- I had over 37 spots treated with gamma knife at the same time over 5 years ago. Due to age of my 4 lids and myself I did not want to do WBR/
4 days is not a long time to wait so I would wait gor the procedure to be covered
good luck0 -
Day 2 of WBR. I am so glad today is better. Yesterday I had a splitting headache chills and was super tired after radiation. Today was just chills and a some tiredness. 2 down 8 to go. Never thought I would say that I want to get back to chemo!
Julie
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thank you so much everyone for your replies and encouragement! In the end the private clinic told me they would need to do next week anyway, so I am going with the public treatment next Tuesday. Just have to call them today to confirm it is going ahead! So anxious now to start treatment I just want it done.
Theresa - I will definitely post what happens next week and will chat to the specialists about current protocols for gamma. Yes I’m hopeful that when Trodelvy comes it could be a good option
Leftfoot- thank you for sharing your story! I’m so pleased to hear you had a good outcome with multiple brain mets. I hope I can be as lucky as you
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LFF,
I forgot that you had 37 spots gamma knifed! You are amazing and I'm glad it worked.
Did you have your lymph node removed? How did it go?
Hugs, Susan
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Hi everyone,
I just started Herceptin, tukysa, and Xeloda on Thursday and am experiencing regular nausea and vomitted a couple of times. Any tips? I take Zofran but am out until Monday due to no refills (why don’t the docs put in multiple refills for this stuff? It’s not like it’s going away anytime soon) and my other med doesn’t seem to work as well now (prochlorperazine). Also, has anyone been prescribed appetite stimulants? Thank you!
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Kikomoon, the usual anti nausea meds didn’t work for me but promethazine did the first day I took it. It’s an old school antihistamine, maybe you can find it without a prescription.
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susan- lymph node not in a surgical location. Cant even biopsy it. I just finished day 7 of 10 days of radiation and will hopefully be done with it after Wednesday. We are keeping my treatment the same for now. It’s been a long 2 months but the finish line is so close.
Thanks for askin
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Hello lovely ladies.
It’a so good to come back and find the same support I received when firstly diagnosed now being offered to others. This is such a special forum for me. So thank you!
I’d like to know if anyone can share their experience with brainstem mets?... after 14 months clear, here we are again! Still waiting on the details of the MRI, but that’s all I know for now. BRAINSTEM, which makes me think oh oh. I’m screwed. Any hopeful words will greatly be appreciated.
Xx
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Illimae, thank you for the tip, I will ask the Dr. about it this week. I couldn’t keep anything down today either so called the on-call Dr. to get my zofran refill expedited and he tried to tell me nausea is not really a side affect of these three meds...???
but still put the refill in. Now I’m like, well what’s wrong with me? But I really think it’s all these meds, as I’m on 3,000 mg Xeloda to start and was fine before. Roro11, I don’t know anything about brainstem Mets, but I’m hoping others will have a response for you! I’m sorry we’re all in this crappy boat but glad to have a place to share.
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Hi Kikomoon, thank you for your kind words. I’m sorry you’re experiencing nausea. Dr’s shouldn’t question our side effects of make it harder for us to obtain medicine that could alleviate some of them. I’m currently on TDM1 and I get nausea 24 hours after infusion. I wanted to ask your experience with your current treatment? As this might be my next line of treatment and I’m scared! I feel like I burning through these treatments too fast.
Running out of time. it’s the worst feeling.
Best of luck with your nausea. xx0 -
Roro11, I know how you feel with burning through treatments. I just started Xeloda, Tukysa, and Herceptin and am on day 5. The only SE I’ve had is the nausea, but my Dr. was concerned about diarrhea and hand foot syndrome more so. People on the Xeloda thread talk about the HFS and have tips for managing, but I haven’t had that yet. Others on this thread have been on my current treatment longer and might have more to say. Finished up 10 days of WBR last month. That was terrifying but I seem to be doing ok right now. Let us know how it goes, will be thinking of you.
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Kikomoon, I hope this new treatment works magically for you and may it last a longgg time!
I wish this cancer world wouldn’t be as terrifying as it is, but I am glad for sweet people like you, and everyone else that knows exactly how dark and lonely it can get, even with the support of loved ones. The waiting game is what gets me the most, because as we wait, these little cancer cells just keep on growing, so i struggle a lot with that. I’m trying to keep busy, being that I’ve been on this side of things before and I know how things go, but it’s nearly impossible not to feel death breathing down my neck.0 -
roro11
I have no experience with Brian stem mets. But I am heavily pretreated and feel like my mo is reaching for straws putting me back on meds I went through before. I see her next week and going to have a really open talk about where she thinks this disease is.
Good luck to you I hate the waiting.
Mary
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thank you for your kind words Mary. I hope you get good news!! This is such a rollercoaster ride for all of us.
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anyone on Enhertu at the moment? Any feedback on clearing brain mets? Side effects? Etc.? Thank you.
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Hopefully anyone who has had enhertu chimes in, I don't know much about it other than the name. I looked and did not see a specific thread though mentions are made on some pages when I searched the threads.
There is a facebook group with Enhertu users. It is a private group so you would just have to request to join. Most groups are easy to go through. https://www.facebook.com/groups/478640293032630
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Hi beautiful people!
Well, unfortunately we got the news that my mom's cancer has spread to her brain this past Thursday. She was initially diagnosed in 2004 and was in the clear until January 2013 when we found out about her bone Mets. She was doing really well until last year when we were told it spread to her liver and now to her brain. Obviously as her daughter, I'm so sad. She's my best friend, but I (and my entire family) am ready to help her fight the fight. Thankfully she has done really well with previous treatments and we are hoping to keep the streak going. Her most recent PET scan that she did a month ago was clear which is why her onc is so shocked about the brain Mets. She suffered a seizure on Friday which got the ball rolling on getting an answer as to what happened.
Any stories of hope? I should mention that she is HER2+. We are meeting with an RO next week, are there any questions you recommend we ask? All we know is radiation M-F. No further details just yet. We have faith in our team and my mama - she's a tough cookie, much like you ladies! This thread has been helping me fall asleep at night because I'm able to see the love, support, and hope there is. It's not over until it's over.
Thank you for letting me rant and ramble.
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sameentaj, being HER+, mets to the brain is not a big surprise as most therapy drugs cannot get into the brain. I have had a single stable bone met for nearly 5 years but I’ve had new spots pop up in my brain several times, usually every 6 months to 1 year. Fortunately, radiation is a good treatment and there are new drugs for HER2+ that can get in and hopefully stall progression. The newest ones are Tukysa and Enhertu, both are now available in the US. Brain mets are certainly a disappointing find but there are options. Best of luck to your mom and family.
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thank you for the recommendations, I have taken note and will ask about these drugs! Although disappointing, thankful that new technology and drugs have been found to help keep loved ones alive. At first we thought it was a death sentence, but keeping the faith and learning from my mom, positivity is half the battle.
Are there any side effects to the radiation? I was young when she was first diagnosed and only remember her sleeping a lot.
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