Brain Mets Sisters
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Hi KBL,
I had very similar symptoms and had a brain MRI one week ago. The results were normal; my oncologist said my brain was perfect. It was a relief, but I am still having symptoms including, now, nausea. I am going to give it a couple more days and then I will seek out medical advise. I try not to panic with every new thing as I have been living with this for five years, but sometimes it just gets very hard. I consider myself very fortunate to have lived for five years with no progression. My heart breaks for our sisters who live with much more uncertainty. I will send good thoughts for your brain MRI and to everyone here who is nervous about the future.
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Thank you, nowaldron. I totally expect it to be normal for sure, so I'm not worried. I just want the feeling to go away. If you find out what it is, please come back and post it or send me a private message. I'm so glad yours was normal, but it's the not knowing that drives us crazy.
The other thing for me that makes me think it's not is I don't have the typical immunohistochemistry or cancer type to have it in my brain.
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Superdenovo, as nasty as they are, I would recommend the steroids if you are having these SE. Some people I have seen go without but for the treatment and about a week after, you should take them if you are ill. I was very tired and lost my appetite but never dealt with nausea or anything. If you are weaned off properly, you will not experience the steroid crash. I was on about 12mg of dex during the treatment and then was weaned off for another week.
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KBL, I would recommend visiting the hospital and let them know of the pressure you are feeling. I felt incredible head pressure behind my eyes, though not constant, it usually occurred when riding my exercise bike. My head would suddenly be full of pressure. A Cat Scan would pick up brain swelling IF that is what you are experiencing, would be prudent if that is case.
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Hi, Mara. I did go to the emergency room on the 10th. They did a brain CT to look for blood clots but not cancer. CTs don’t work to see any of my cancer, so they’ve set a brain MRI for May 5. I’ll post what they say when I’m done.
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OK, I just figured they could do a CT to see if your brain is swollen which would explain the pressure you are feeling. Fair enough, just not sure waiting until May 5 is the best thing considering your symptoms. My opinion only, you must do what is best for you of course. My head CT only showed my tumour because it was 10 cm and my CT showed my brain being swollen. It would not have shown my couple of mets that showed back up in 2018 and I also have regular MRI like most or all of us here.
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HI KBL,
The waiting for the test is often the most difficult part. I am fortunate that I am treated at a large teaching hospital in Boston so I am able to get appointments very quickly. After the MRI of last week which showed nothing remarkable (as they say), I figured my symptoms would vanish. But, the headache persists and the feeling of queasiness has become worse. I get hungry, eat something and then almost immediately feel nauseous - not quite enough to vomit. My blood counts have been weird the last two times with HCT below normal and trending downward, and the same with Hgb and MCH. My MO didn't mention it at all, but I always look at my blood counts. I try not to be a nervous Nellie, but has anyone else had low blood counts in these areas and, if so, was it a cause for concern?
Living with MBC is a continual journey and quest for knowledge and I get so much of that here! So, thank you fellow MBCers.
Nancy
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Wow, Mara, 10cm. That’s huge. Every day I learn something new. I have an endoscopy tomorrow and Abdominal MRI next Thursday. It’s so hard to keep going back and forth for testing, especially now that I don’t feel safe to drive. I have to have my husband take off work. I definitely will ask for it stat if symptoms get worse.
Nowaldron, that’s the truth. The worst is when you know something isn’t right but they can’t figure it out. I’m sorry you’re going through this.
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KBL, yes not sure how I functioned. I was still working for a cell phone company from home. I do remember horrendous pressure behind my eyes, seizures due to the swelling of my brain. I worked from home and my employer knew I was dealing with cancer. Most of the time I could function and do a good job but other times, I could not understand the phone number on my display or comprehend a problem. I also had a problem having not only absent seizures where I just went away during calls but full on seizures. My employer called my mother who I used to live with to shut down the computer. After those spells, I usually woke up in bed. Morning nausea for me that went away. I still walked the whole time but was lucky I did not have seizures during those outdoor walks.
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Wow, Mara. That had to be scary. It’s amazing what you were capable of, even being as sick as you were. That looks like that was almost five years ago according to your bio. You don’t have seizures any longer? That would be great.
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No, no other seizures. When it was initially found I was on IV steroids for a long while before taking them by mouth. As soon as the swelling came down, I was OK.. Spent 4 days in hospital so I could get MRIs done in planning for both surgery and radiation.
I do have seizure medication I take. Low dose of Tegretol because in 2004, I had some seizures. We did all sorts of tests but no cause was found. If I go off the Tegretol, I do have seizures so low dose is best for me since I get lightheaded on a larger dose. Those were not cancer related. Any seizures I have had were related to the brain swelling.
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Hey everyone,
I am new on this thread. I just had a pet scan and my MO called to tell me they wanted to do a brain MRI. Below is what they said on my pet. Just checking to see if anyone has had Mets in this area? Or if anyone had a suspicious brain met on pet but nothing on MRI? Still holding out hope that it is not brain related.
Focal areas of hypermetabolism in the right anterior temporal lobe and vermis, suspicious for brain metastasis.
Thanks
JULIE
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Posting here having just been diagnosed with brain mets and reaching out for hope/experiences
I was diagnosed with Stage 4 in my lungs last November, triple negative (I had originally been ER+ at primary). Yesterday I found out I have many ('more than 25') small lesions all less than 1cm in my occipital lobe. My oncologist was very doom and gloom, about how this shows how aggressive my cancer is (well, yes I had gathered...) she said I can only have WBRT and I have an appointment with the clinical oncologist to discuss in 10 days. Well, that's way too long for me to wait so I was on the phone to private specialists (I'm in the UK) yesterday to try to get in to see someone this week and make a plan. Fingers crossed. I am sort of holding out hope that as they are small, they may agree to gamma or cyber knife despite the large number. I am very afraid of the WBRT side effects. But I also know that perhaps as I do have diffuse mets I need the WBRT to get any microscopic ones in there. I have also heard of people having non-targeted radiation but just to the lobe the mets are in (so not whole brain). Has anyone had this? And those who have had targeted/SRS to the brain, do you have regular scans so you can just zap any new ones that come up?
Feeling pretty scared
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Phet, I have had WBR almost 5 years ago now. The reason they wanted this is because I have agressive inflammatory breast cancer, fast growing and HER 2 positive which is good treatment wise, not good if it decided to grow. I did not want it either but my RO felt with the type of BC I have along with the rate of growing, we would be doing radiation almost all the time. They wanted to slow the growth of potential new spots. Due to this, other than one time two tiny spots showed up where I had original surgery which was not unexpected since there was some tumour wrapped around a blood vessel they could not get out.
I will separate the treatment to my symptoms because I was in a deep depression and fearful of dying for a long time. I experienced pronounced fatigue for a long time, I tried to walk at least five minutes on the spot at home once the exhaustion hit to build up my appetite. I would say once recovery starts, it happens quick. Exercise can help the brain repair itself. It is felt that when you have WBR, there is a period of time that regular drugs may be able to pass through.
WBR is feared by people but it is important to realize that for certain types cancer may be better served to have this first. If you were already in good cognitive shape, you should come out largely the same. The stress, drugs we take to keep the cancer away also can cause memory issues. Treatment is also better than it used to be. I just want to give you hope that if you cannot local treatment, whole brain radiation is not a step to a hospital bed or losing your mind and memory for most people.
The only casualty was I did get permanent hair loss at the top of my head. I just wear wigs now and I love them better than my own hair. Never have a bad hair day or frizzy hair in the summer. No one knows I wear wigs unless I choose to mention it either. QOL healthwise for me is good, brain is stable and my memory is better because I make reminders for things to do. Reading and doing surveys and puzzles has also kept me sharp.
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Phet, unfortunately the most mets I’ve heard of being treated with gamma knife was 17 here in the US. In my case, I had 5 the first time and 5 or less several times over the past few years, all treated with gamma. I have routine brain MRI’s every 2-3 months, which helps catch anything that pops up. I’m sorry your oncologist is gloomy on this but radiation often works well. As I understand it, few future mets are usually treated with gamma after whole brain, like Mara mentioned.
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Phet, to update what I and also Mae said, I have had WBRT BUT if I had any other mets show up in other locations, those spots could be radiated as my RO says radiating twice is something they do. If I progress in the original tumour site, surgery or possible drug therapy would be done since that area has had the WBR as well as local radiation.
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Thank you so much Mara and illimae for your replies. They really give me hope. I guess on the breast cancer facebook group I'm in I always see people fighting to avoid WBRT and pushing for targeted so I assumed I had to do so too. But with many (albeit small) tumours I am also very fearful that with targeted we would just be playing whack-a-mole all the time.
If I do get WBRT I am very reassured by your experience Mara. With aggressive TNBC I am scared by the inability of most drugs to cross the BBB and like the idea that for some time at least after WBRT the drugs might do so. Radiation can also sensitize tumours to immunotherapy. I'll have to see what my new oncologist (I'm moving teams to someone I like a lot more) has to say about the plan moving forward re systemic treatment.
One question - how long do you need to be off systemic treatment (especially chemo) after WBRT? And can you have other operations while recovering? I need a new biopsy on my lung as well and wondering whether it makes sense to knock that off the list while I'm recovering from radiation and off chemo, or if that will be out of the question.
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illimae - Thanks for the well-wishes for surgery on Monday. I'd be lying if I said I wasn't nervous.
KBL - It's always awful when we have unexplained symptoms. I think having the brain MRI is an excellent choice to rule out brain mets. I had no symptoms when my brain mets were discovered and still have no symptoms. Best wishes in figuring out the cause of your symptoms and getting back to watching your grandson!
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Thank you, theresa45. I don’t see many with ILC with brain mets, but better to be safe than sorry for sure.
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Phet, there really are more drugs that are being made to cross the BBB. As far as starting up Herceptin and Perjeta again, that was a good couple of weeks. I did not have treatment from July to around the beginning of October by the time we factored in MRis to plan the craniotomy to remove the tumour and then waiting a bit to get the WBR. After the WBR was done, I was back on Herceptin and Perjeta in short order. The only thing that sucked going back was due to Herceptin and Perjeta's possible heart effects, I had to wait half an hour between infusions again which I really hated. Because Herceptin and Perjeta are only attacking the protein in the cancer, it does not attack the rest of the body so timing of chemo may or may not be affected. Any way you slice it, if your RO recommends WBR and does not think local treatment is in your best interest, it is not the end of the world. I admit I would have preferred just to nuke the original tumour but who knows how many small cells were all over the brain. As said, the only thing I lost was the top of my hair. My wigs are nicer than my hair was after chemo.
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thinking of you Theres
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phew- I am one of those wonders who has had 10+ lesions treated with gamma knife and on several occasions 6-10) by either gamma knife or cyber knife. In total, I believe I have had 6? Total brain radiation treatments in 8 years. All but the first brain Mets were tiny, mm in size. I had to fight insurance snd go through two appeals tge second time to get treatment since it was over 3 spots. Since then I haven’t had any problems probably because everything they treated has gone away. So ask and fight for local if that is what you want.
that being said, WBR has come a long way in the 8 years since I’ve had brain Mets. It is much safer and there are procedures to preserve things like cognitive function. The group of women here is testimony to how well you can do.I am also in the new drug Tucatinib, which crosses the BBB. Herceptin and perjeta didn’t control my brain Mets well I kept sprouting them. Plus, herceptin did a job on my heart. So far Tucatinib isn’t perfect, but it has slowed the rate and number of tumors down.
I wish you well as you make your choices.
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Phet, I also wanted to add as far as my experience with WBR, once the inflammation went away, I did not perceive a difference in my brain and I did not take the Namenda that can be prescribed. If you wind up with WBR as the only option, you can ask for that drug if you are worried about losing function. As far as I go, I blame the occasional forgetting where I put something as normal stuff people do, menopause and drug treatments over the course of six years I have been doing this. Exercise clears my cobwebs.
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I had my MRI today and it was confirmed that I have brain mets. I have about six under 1 cm. But the Dr said I could have more that they can't see.
If I am understanding LFF these could all be treated with cyber or gamma knife? Has anyone lost any functions after doing wbr or gamma/cyber knife?
LFF how many sessions and how often were the gamma knife treatments? Also I see you are in Washington. Did you have treatment at SCCA?
Thanks
Julie
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jjzn, yes, if the mets are small enough they can be treated with gamma or cyber knife. Six does not seem to be too many to be treated at the same time. If you are offered this option to treat them, I would encourage it, localized treatment is easier to recover from. I had local treatment like this when two little spots showed up where I had my original surgery and were not unexpected since the cancer was also wrapped around a vein in the brain.
I have not heard about major losses of ability on this site. My experience is above which is I do not feel different than I did pre WBR. Short term memory loss is about the most I have heard of on this site. If for some reason you are not offered local treatment and instead told to take WBR, it does not mean you will lose all your cognitive function. For me, it just took longer to get my energy back.
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Mara
Thank you!
Julie
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Julie- yes I had 6 treated with gamma and cybet knife.
The amount of days and duration depend on location. Gamma knife is one session that takes most of the day and used the metal halo frame. Cyber knife is done over several days usually 3-5. My sessions we’re about 40 minutes.
my treatments were at seeedish Cherry Hill. And I see an MO at Sweedish issaquah. I didn’t feel like driving across the bridge for treatments.0 -
jjzn, I’ve had gamma several times over the years but each has been to 5 spots or less, generally between 4mm and 1cm and the procedure was completed in a couple of hours, recovery was easy too and usually didn’t require steroids or even Tylenol.
The oncologist is right that there could be more but there might not be either. My cancer center always does another MRI just before gamma knife to double check, so far no new ones had popped up at the time. I’ve had some pop up 6 months and 12 months later, we just zap those too.
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Thank you everyone. I am going to push for cyber knife. I meet with radiologist on Wednesday. I hope they are on the same page.
One last thing do the Mets all have to be in the same area?
Thanks
Julie
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hi everyone. I recently found out I have brain mets and am in the middle of figuring it all out. It seems there are a couple more in a similar boat, so thought I would share what I am learning so far and of course am all ears on experiences, advice, insights from those who have already walked this journey.
So far what I know is I have 8 spots. 7 are 7 mm or less. One is 21 mm. I had a 1.5 T MRI, and I am hearing that when I do the 3T it’s likely to pick up more spots. My local hospital will only so cyberknife up to 8 spots. My case will be reviewed by a tumor board at another institution to determine my eligibility for gamma. That facility tends to go more aggressive with gamma, and will be the most likely to take my case with the number of spots. I should hear their recommendation later this week.
I have two young girls and have been on pretty significant iv chemo for most of the last 4+ years. I have a good quality of life right now, and am an active mom with them. My thought is to start with gamma (if I can) and save WBR foe a later option if needed, ca starting with WBR (which I think is the recommendation of most places I’ve spoken with so far). My thought is that the fatigue and side effects would be harder with WBR.
Anyway... if anyone has anything for me to think about/consider, please share. I’m also curious if this opens up new clinical trial options for me, or if there are other things people use to enhance response. I am also thinking about future systemic treatments that could be good for brain too, considering that I am ER+ but HER2-. I am currently on Trodelvy.
Thank you
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