Brain Mets Sisters
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I didn't have a chance to know AmyQ but feel for her loved ones. Thank you Moth for posting that article. Everyone is pissed off that my oncology team did not check my brain till a few months in. But I didn't have any symptoms and apparently that is standard of care, which seems dumb. I'm glad MO decided to check when she did, despite no symptoms. Anyways I got some good Taxol in the meantime to beat back the bones and lungs at least.
So my scans were stable but the brain MRI says the same as before, still shrunk greatly after WBR, but some appear "more prominent". Report says could be due to contrast technique and timing differences, won't know until next scan. Maybe this is in line with "enhancement", not sure. MO was not worried, just keep on keepin' on. I might make a appt. with RO to find out more, but MO was pretty certain he would not touch them yet.
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Hi Ladies,
Just like you do not want to be here but you all are so much help and support in a crappy confusing happening.. A Little update of my newsist part of my story. I was diagnosed with metestatic BC to liver in lung 15, th of August 2020.
Now about 3-5 weeks ago I started having very bad headaches worse than migraines. Finally called my MO, had an MRI last Teusday and he called me on Wednesday to tell me the reults. Not good news when Dr calls you directly. I have over 30 spots throughout brain 4 bigger ones that are over 1-2's. I will Start WBR tomorrow. Any iformation would be a great help. How many of you had vomiting. Lots of questions with no answers. Please pray for me if so inclined. Love you all.
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LKinzKC, I had WBR in 2016 after a craniotomy of a lone 10 cm met.
WBR will cause some fatigue for a good few weeks, may cause some appetite loss. If you do need it, there is zofran for nausea though I never experienced that myself. If you do find yourself lacking appetite, small meals loading the protein and nutrients are good, chopped spinach on top of a meal can help. Black beans, a beefless ground, protein powder and chopped finely spinach is great added with queso and salt can be filling and good. The spinach will help your iron and the beefless vegan meat has tons of nutrition without being greasy. Just cook for 1 min in microwave, add a dollop of queso, mix through and it is good. Make the portion as big or small as needed. I also recommend a digestive enzyme to help avoid digestive issues.
These are things that helped me. Don't be discouraged if you find you brain kind unable to follow a book or tv for a couple of weeks out while the rads go through your brain. It does go away and you should be similar to how you were.
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Thank you so much for the information. Hang in there. Evey day ladies
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LKinKC - I had WBR for "innumerable" brain mets in late March / early April. I had alot of fatigue with no rhyme or reason. Take it easy but try to get some exercise in if you can. Walks made me feel more pressure in my head so had to take it easy for awhile. I had alot of appetite problems and lost my lunch maybe 6 times total, but I feel like this mostly happened as I adjusted to my new meds of Tukysa, Xeloda, and Herceptin. My advice is don't push yourself, eat what you can, if you are very nauseous try not to eat your very favorite foods. If they come back up they might not be faves anymore. I had to stop cooking / prepping and even looking at recipes or menu/ food options for awhile because I would totally lose my appetite. Zofran alternated with some other nausea med helped my nausea ....eventually... and I was prescribed a mild anti-depressant for appetite. Not sure it worked but I still take it. Finally now I can cook and eat more types of things, but I still don't eat a whole lot - have to eat small amounts continuously throughout the day. Once again, feel like my nausea was caused more by new meds. Lack of appetite started after WBR though. This is just my experience.
My DH "strongly encouraged" me to play brain games, which I did also. I am sorry you're here and will pray for you along with all of us.
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LKinzKC,
I was terrified of having WBR because I thought I would lose who I am. For better or worse I am still "myself". My main SEs were loss of taste and appetite as well as fatigue. The fatigue was worst about a month after treatments were over. I lost a lot of weight during treatment but drinking Rebecca Katz's Magic Mineral Broth helped me keep up my nutritional intake. Her cookbook, "Cancer Fighting Kitchen" is great but you can also find the broth recipe online (Magic Mineral Broth Recipe). It can be made with or without chicken.
I lost all of the hair on top of my head but it grew back quickly after treatment. I also didn't lose my eyebrows or eyelashes which really made a difference.
The treatments themselves are quick and easy. I thought of the machine moving around me as the source of healing light, which it is. WBR is very effective. Down the road, if you have one or more tumors grow, you can just zap them with Gammaknife. It's been more than 7.5 years since I had WBR. I've had two Gammaknife treatments for small progressions and all looks stable.
The other thing I would add is that, after WBR, your blood brain barrier may be more permeable so your next treatment, may be able to reach your brain better.
Wishing you the best tomorrow and beyond.
Hugs, Susan
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this sounds like me. I just completed 15 wbr sessions last week. Was very fatigued and dizziness continued, but no nausea.
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Hi, I don't post very often, but when I do, it's usually bad news. So a bit of good news for once, my recent brain MRI showed that my leptomeningeal disease is no longer visible. This is after WBR and about 5 months on Xeloda/Tukysa/Herceptin. I don't know how long it will last but I will enjoy it for now.
Happy Halloween to everyone who celebrates it. I will be enjoying some trick or treating dressed as a unicorn, and my kiddos will be a dragon and a fairy.
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Awesome superdenovo, happy to hear it 🎉
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SuperDeNovo, you are amazing!:)
Saulius
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great news Superdenivo!
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hi, I have hesitated for a long time about posting this because I don't want to cause fear. I need some help.
I had five brain Mets treated with stereotactic radiation in January 2019 including two on my occipital lobe.A 2 cm major A 2 cm lesion on my right nope and a sub centimeter on the left. The one on the right was retreated in June 2019 add removed in June 2020.
I began to have vision problems in the spring of 2020. Neither my MO or RO could explain. I saw multiple Nuro ophthalmologists and visited Mayo clinic. they said the treatments of the lesions would only cause some peripheral vision loss but my vision continues to get worse and I am now legally blind. eventually this year a place in Miami said it was delayed radiation damage to my optic nerves.
I wondered if anyone had experienced this and if there was anything that could be done to stop the continued degrading of my vision. My cancer is otherwise stable but the vision loss is very distressing especially as I live alone and have no family in town.
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Dorimak2, I have not experienced this but just want to say how sorry I am about your vision loss.
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dorimak2, we're so sorry for your vision loss, and wanted to let you know that this wonderful community is here to support you. We are glad that you reached out here and we hope that you will find advice and information to help you along the way.
Keep us posted on how you're doing. We're thinking of you!
The Mods
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Bumped for Nicolerod (she couldn't find thread) - thinking of you lady
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I had a brain met radiated a month ago.
It started like a year ago when my neuropathy in feet, knees and hands slightly increased and I had various edema and 2 times shingles.
I don't get a decent sleep, have muscle and bone pain, currently suffering from a dislocated disc in my spine aswell... I don't take any meds and having a 3 month break from herceptin and perjeta to be able to get the neuropathy better under control but it doesn't help.
I am very afraid this could be mets in my brain fluid although these symptoms got worse over the last months and I think meningeosis carcinomatosa wouldn't progress that slow ove months... Any idea what this could be?
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I am sorry for what you are going through now. I can't say for sure about the issue but hopefully you can ask about getting tested with a spiral tap to rule out or confirm mets in your brain f.
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tbh I had various aymptoms in the last 2 years which were similar but never as strong as now which led to 2 spinal taps which were negative. I seem to be the woman with the most side effects even my physiotherpaist mentioned she never met someone with so many unspecific side effects... is there abybody out there going through a similar history of side effects? These are: neuropathy in knees, feet, hands, dry eyes, runny nose, muscle pain, bone pain, difficulties to breathe, numb areas all over the body.... even now that we stopped treatment 2 months ago it doesn't get any better but worse. All blood works are fine, tumor markers in the normal range, my last scans in October were fine aswell. Just had the radiation of a 4mm met. Can this worsen side effects?
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GerdaM, I struggle with muscle and bone pain and poor sleep but those SEs of my Arimidex. I take boswelia to help with inflammation, as well as magnesium and turmeric. Have you discussed any supplements with your doctor to help with your SEs? I had dry skin when I first began treatment but that's regulated over time. It's still on the drier side but manageable with lotions. I would ask for a consult with a pain management specialist.
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thx goodie, thx mara...I will address this again during my next appointment. I am taking magnesium, Calcium, Vitamine D, K2, Vitamine B Complex and currently soemthing to support menopause... as treatment pushed me into early menopause. I am 45 and I had my period coming back after both bc dx (first and second)
What drives me crazy is the increasing numbness in my knees - started like last year around summer and following my doctor it should be after menopause started... but what's the connection 🤷🏼♀️
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Gerda, I used to have a lot of problems with cramping, mostly after my Herceptin treatments. I went into menopause at 43 and never got another period since there was no break between initial treatment and when my breast cancer grew to a 10 cm met. I do find now that I get far fewer cramps because I do eat a lot of black, red or pinto beans with meals. I also like, even though I am not strictly vegan, a beefless ground that has a lot of the stuff needed like B12, magnesium etc. Hydration can help too.
As far as numbness goes, pre cancer, when walking, my one foot would feel numb but that just disappeared and this was in my 20's and 30's. Does not happen now, I think diet and staying hydrated has helped
Just thinking how amazing it is that I am still here with my sucky dx almost seven years ago. Still 43, presenting with Inflammatory Breast Cancer, fast growing and aggressive and HER2 positive. I never thought I would see 50 but I have been lucky and I am still strong and active. I hope all the same for you.
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Gerda,
Do you have a palliative care doctor? They can really help with pain and insomnia. I also take a THC tincture called "Om" when I have trouble sleeping.
Hugs, Susan
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I've seen a neurologist and my radiologist who I will see my neurologist. My gyn is a palliative care doctor aswell so I will ask her for supportive methods.
I am still wondering if there are people having brain mets popping up every once in a while and stay stable below the neck.... Is it possible mets will stop growing? Are there any longterm survivors?
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Gerda, I’ve had a bone met from the beginning (5 years ago), which has been stable for years. It became active again in 2019, so we zapped it with rads and it’s been dead ever since. But, during that time I have had brain mets pop up about every 6mo-1yr and just had gamma knife #6 last month. I’d love for the brain mets to stop but I think it’s unlikely for me until a medication comes along that works better but I live a pretty good and normal life.
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Gerda, my MO thinks I had brain mets that were to small to see from my initial diagnosis in 2015, they grew in 2016. I had brain surgery to remove the met, whole brain radiation and had another session of rads to the spot where a couple new spots grew in 2018. All of my mets were in the same place so far. No mets anywhere else from the neck down.
Depending on the situation, we can last much longer than we used to. You can see Susan, Goodie and others I am missing who are still here as well who are living their good lives a long time after initial dx.
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Gerda,
I had WBR in April 2014 and gamma knife twice (2017 and 2019) to tiny spots that showed up where I previously had tumors. So far, all has been good up there (knock on wood). I have my next brain MRI at the end of this month. At my initial metastatic diagnosis, I had over a dozen brain mets but I've so far had no symptoms. Reaching the brain with chemo or endocrine therapies is a mixed bag but radiation is very effective. Has definitely been easier to treat than my lungs and liver.
Hugs, Susan
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Gerda, I am 6 years, almost 7 years, out from my brain met surgery and 7 years from initial diagnosis. I've never had a met show up below the neck. Just that one pesky one in my brain.
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Wow, Goodie! You are a miracle!
What targeted therapy are you on now? Perhaps you were oligo metastatic and are no longer metastatic?
Hugs, Susan
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Susan,
The only therapy I am on is Arimidex. I also take Keppra as I had a seizure that led to the discovery of my brain met. I don't suffer any SEs from it, so both my neuro onc and neurologist agree staying on it is a good preventative. My neuro onc believes I am an oligo metastatic patient and at my last appointment my MO concurred. Both have presented my case to their respective tumor boards. The current plan is to continue Arimidex until 10 years (3 more to go) and re-evaluate then. I will continue to have yearly brain MRIs and yearly CT scans (insurance won't allow a PET without new symptoms). I see my neuro once 1x a year and my MO every 6 months.
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Goodie16,
I am so happy for you! Our support group, Mets in the City, has two oligo-metastatic women who are both doing well.
Hugs, Susan
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