Brain Mets Sisters
Comments
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I wasn’t advised not to fly either and have flown several times since brains mets and gamma knife rads. I’m flying home from my latest trip in a few hours, no issues this time either.
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I asked about flying after my GammaKnife treatment in March 2015. I was scheduled to fly in September 2015. My neuro onc said it would be fine. I've flown several times over the years with no problem.
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They simply told me, "Whatever you do, DO NOT FLY!!" And definitely don't fly across the Pacific to Hawaii...if something happens halfway across the ocean, it'll be a couple more hours until I could be seen at a medical facility.
I know a couple of people who didn't have any problems whatsoever (but they don't have TWENTY of these little bastards camped out in their brain like I do). If cabin pressure suddenly drops, my tumors (not all of them responded well to the WBR) might start bleeding again. Some of them were bleeding at Dx...they aren't anymore, and I certainly don't want to play Russian Roulette when it comes to taking a chance on even a short flight. It's just not worth it to me. There are trains, buses, and rental SUVs I can use. We drove to AZ last year, and of course flying would have been faster, but oh well.
Everybody has to make their own call on this. If your lesions are now scar tissue, and not active, flying is probably ok, but if your lesions are still somewhat active, you need to get an MRI to see what the possible risks could be.
L
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Hi, everyone.
I been diagnosed with metastatic breast cancer in my right lobe, it is now 1.5 cm ,
Previously was on Katcyla until recently join the trial climb2.
When I got the first diagnosis was hard, but I still have some hope, but after I received my lates diagnosis I am totally destroy I can not put my self up, I feel hopeless and nothing can help me.
Please I will like to hear some encourage histories, I am very depress now, I don't know what to do...
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I was dx with 10cm tumour to my right parietal lobe in 2016. Went through surgery and whole brain radiation. In easter 2018 we had to radiate again, just localised as a couple of spots were growing. My brain is stable and spots are still shrinking. My body is NED from the neck down. Other than fatigue from the different drugs I am on, my qol is as good as it can be. I am sorry you are joining us but treatments have improved a lot.
Give yourself time to adjust. It is a scary diagnosis. Gather friends, family and us for support. Ask your doctors for a social worker as well. Lastly, bring someone with you to appointments so you dont miss out on info. Initially it is overwhelming, but with a plan and time, it becomes less overwhelming. I also listen to meditations I downloaded from youtube which allow me peaceful sleep. I dont think of anything at night, especially cancer. Goodluck keep us psted.
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thanks Mara....thanks for help..
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topacio- I had two lesions zapped with gamma knife in 2012. I remained NED for 5+years. It’s overwhelming but there is hope.
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thanks for the replies
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I'm flying to Hawaii in May. I hope. My Sister rented a house there and it is a big deal.
I am getting a MRI April 16. I have a strange feeling in my face and neck. It feels like something is brushing up against my face very lightly. It comes and goes, but has happened more frequently this week... or I am noticing it more. I hope it is just a side effect from one of the meds, not a new brain spot.
My doctor is still talking about ending my Herceptin in May even though I am denovo and NEAD...and has mentioned Tykerb but is letting me stop the xeloda.
I am NEAD everywhere that I know of..unless the brain thing is something...I have a referral in to our university hospital and will try and get an appointment there soon...for a second opinion. I think they are trying to kick me off the Herceptin because of my insurance not paying "enough".
I think we should do trauma informed care with the doctors and nurses. It is like they don't realize what they do when they call and drop bombs on us like this. so frustrating.
thanks for letting me vent.
Angi
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I am checking in to ask for advice. My latest brain MRI on 31st January was clear which would make me 2 years NED in the brain on April 28th.
Since around 4 weeks after my scans I am experiencing a light varying sound in my right ear similar to a tinnitus.
Although these scans have been crystal clear I am highly worried about a recurrence. I am scheduled for a MRI on Tuesday but would love to hear your thoughts to somehow get me there
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Clementine, I have an occasional flutter in my right ear, especially when sleeping on that side and I was concerned as well but I’ve had 2 clear MRI’s. Eventually, I saw my PCP about it and he recommended a decongestant to dry up a small amount of fluid near my eardrum.
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Clementine, I had brain mets treated with targeted radiation in late January. Last weekend I woke on Friday wtih a headache, nausea and was somewhat disoriented. I was day 11 into a first cycle of Xeloda. Doc's office brought me in and gave me fluids and my own MO wasn't there and her partner ordered a brain MRI for the Monday which left me totally freaked out for the weekend. When I saw my own MO on the Monday she said it would be unlikely that anything was going on that would cause symptoms that soon since end of Jan. The MRI was clear so it was side effects from the Xeloda. It's hard not to get concerned about every symptom. Hopefully all will be well on Tuesday.
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Clementine, I've had on and off ringing in my ears since my craniotomy in February 2015. I've asked both my neuro onc and my MO about it. It can be a side effect of Arimidex or it may be just due to the craniotomy and following GammaKnife. Neither doc was overly concerned and I continue to be NED in the brain and body.
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Thank you all for chiming in, that calms me a lot. It helps to see it could be other than a recurrence. I am so concerned because it started just a couple of weeks ago which literally hasn't been longer than 4 or 5 weeks after my last ned scan. It could be aswell a stress-related symptom due to issues with my job. I returned to my fulltime job after my last craniotomy and my boss tried to get rid of me as someone who (in his eyes) will soon go off sick again but didn't have the guts to ask me to leave.
Glad my scan is already tomorrow.
Congrats on your clear and NED scans - how amazing is this! May they stay forever clear xoxo0 -
Hi All,
I am 53 yrs and new to metastatic breast cancer HER2 + with recurrence in my lymph nodes in Jan 2018 4-1/2 yrs after my initial treatment for stage 2 IDC. Completed AC chemo before surgery in June, Axillary Dissection in July, 28 Radiation treatments in Sept, then a routine brain MRI found a solitary right cerebellar metastatic lesion in my brain growing from 6mm to 9mm between Jan and Oct.
In Nov. I had Sterotactic Radiosurgery and Jan 2019 MRI indicated I responded to therapy with a decrease in size but not resolution. On April 24th, I will have my last herceptin/perjeta cocktail and then will go on a year of Neratinib. I have brain MRIs every 3 months to check for progression and PET and CT scans every 6 months. No cancer found from neck down at this point.
Question, am I doing enough? Now that I am finishing my IV target therapy, feeling a bit like a sitting duck waiting for recurrence. So happy to put the past year behind me, but the future is uncharted territory and looking for some words of wisdom to stay on top of progression! Thank you all for being here for each other.0 -
I don’t know anything about neratinib but if you’ve had SRS and are continuing treatment with this new medication, then I would think you are doing enough, at least the recommended course.
In my experience, regular MRI’s/Scans and sharing any new concerns are the best way to stay on top of this. Best of luck to you and please feel free to update us on treatments, we learn a lot from each other here.
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hi rwhite
I agree that you are doing what you can do. Best wishes for continued shrinkage. Do something to take care of the rest of you...like watch a comedy and laugh a lot, or go to a park and sit in the sun if you have some sun where you are . Sometimes that is the best medicine...hugs angi
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My scans came back with a very small spot very close to the former necrosis margins and surrounded by a small edema. They can't tell if new met or
necrosis again. Their recommendation is wait and watch but I am not sure if it's close enough to the former necrosis to assume a new necrosis. Probably the radiologists need to check if it's in the radiated area. At least it's so small they can't even tell what it is and if met then it's caught early.
Ridiculously my ear was fine, no reason for the sounds could be seen.
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Hi All,
I posted about my mother being diagnosed with brain mets (she had ER-negative, PR-negative, HER2-positive breast cancer)
She had Left wide local excision with axillary clearance done on 30 August 2018. and was on 13th cycle of Herceptin treatment when she had issues in her right hand and we found she has 6 small mets in her brain. She was on 12 mg of dexamethasone. We got her 3 cycles of gamma radiation done on 27 March 2019. After that she was fine we started tapering her dexamethasone (after every 3 days reduce 1mg).
She was fine for some time but for the last couple of days, she has been experiencing little pain in her left hand and has develop rashes in left hand. It seems it is increasing and it is itchy and give burning sensation and very painful. We started her Lapatinib 1250 mg and Capecitabine 1500 mg tablets today. Not sure if this is due to these drugs as rashes has started few days before we started this chemo drug.
We are very worried has anyone ever experience this symptoms?
Any help would be really useful!
Thanks
Sonam
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xeloda and lapatnib cause skin changes. My first few cycles of xeloda I had a horrible rash. I used Benadryl cream to help. It settled down after a few cycles.
If the rash occurred prior to the medication I am not sure what the cause could be.i would put a call into the MO either way.
If she gets a rash on her torso area or gets eye pain it could be shingles. Shingles causes nerve pain ampnd hurts.
I am sorry she is going through this,
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hi Sonam,
My last dose of xeloda was 4.2.19. I had my skin dry out on xeloda to the point of looking red and almost raw. I used aquafor and hemp cream on my hands and feet. My skin is still itchy. My hands also hurt more than before. Especially the palm part of the thumb. I had some neropathy in my hands and feet as well as increased sensitivity to skin in shower cold and heat. Some of the neuropathy has decreased and I had it from chemo TCHP. it all ssems to be getting better. With xeloda I was. Afraid of the side effects so my dr let me start out low and increase as the week went on. I think this helped. She also decreased the dose when I told her my feet were getting raw. So far I have had two clear scans.
best of luck
Angi
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It's alway great to read from your clear scans. It makes my heart happy to see it is possible!
After my scan hasn't been obvious I am thinking it forwards and backwards until I receive a treatment recommendation. Questions come up and will hopefully indicate what this new lesion could be. My radiologist mentioned this lesion has the shape of a 3 x 7mm hotdog.
Have you ever heard of mets shaped other than round? I know there can be forms of ovals or fried eggs but a hotdog? I seem to keep staying the one screaming "me" if something extraordinary is distributed
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clementine
I think people dont realize how our brains play with every word. Oval or oblong are pretty close in shape but hotdog shaped is almost rude to me. It is almost like they try to dumb it down sometimes...I dont think it is intentional.
People who havent experienced cancer first hand just dont get it.
I had someone ask me if I had gotten my mammograms timely. As if that matters with Her2+. It grows so fast even if a mammogram had been recommended the year before, which it wasnt, it probably would not have caught it. it would have been too soon. And I did self exams too. Still didnt catch it.
Mine were thin and oblong on my rib and liver and brain. My main met in my breast was kind of peeble shape on top and flat and rounded were it had spread out on bottom.it was right under my nipple so if you mess with the boob the nipple gets hard...which I think masked it. We found it because I had a hard sandy leak. I also had a thread like cluster of microcalcifications. They were not visable to the naked eye and only found on ultrasound and biopsy. These usually are nothing but mine were cancerous.
I feel so blessed to have had 2 clear scans, but even a tummy ache can make me wonder about mets.
I breathe alot and try and do something fun. Even if its just listening to some happy music. I am determined to enjoy my life despite this monster under my head. Lol
Angi
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Angit thanks for your thoughts. Finally if it is progression it’s nothing I can just wipe off of the table. I heard of so many false positives that I am hoping to find indications this could be one aswell. At least I can say I have a sausage in my head
. I think the intention to describe it hotdog shaped is to point the tumor conference into the right direction. Tumors can come in every shape of course, but this one is so ridiculous the idea of it to be just another strange non-cancerous lesion helps a lot. Wish you clean scans forever, all the best x
Clementine
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Hi All,
Thanks for your reply! We went to skin doctor and he told us my mother has shingles . We started her medication Virovir and Aculip and her pain is much better now. I wanted to check something. My mother recently had gamma knife treatment after diagnosed with brain mets. We started her Lapatinib 1250 mg and Capecitabine 1500 mg treatment. We only had dose for 1 day and then we had to stop because of the medication for shingles.
Our chemo doctor told to stop it and restart after a week. But since we will need to continue medication for shingles for a week more we would have to delay by 1 week more so effectively it is now 2 weeks. We are not sure if it may cause some problems.
Is it okay to have gap of 2 weeks and then restart Lapatinib and Capecitabine or we can start it with the shingles medication? It would be great if someone had encounter this situation before and share their experience.
Thanks for all your help!
Sonam
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Hello All....I used to be active on various boards but have not be on in quite awhile. In January, I had 3D conformal for a calvaria mass and some soft tissue involvement. Fast forward to last week, and now MRI has shown a new tumor that is pushing on my brain and into my optic nerve. I will receive Fractionated Stereotactic Radiation later this week. 5 treatments, one day in between. I've been fitted with the mask and will be on that table for an hour receiving treatment. Has anyone had this radiation? I have a lot of brain inflammation already and know I will get more during treatment, I also have extensive bone mets and liver mets. Thank you for any info or experience you have.
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Welcome Lindalou, I had rads using the head frame, not mask and only single session SRS but I’m sure someone will pop in for you. Good luck 🙂
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Hi illimae.....I remember you......how are you doing? Did you get much brain inflammation from the radiation?
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I'm good. I had 5 subcentemeter lesions in Oct 2017 and 5 more in Apr 2018, treated with gamma knife both times. I had no inflammation and did not require steroids either time. Radiation was surprisingly easy and life is pretty normal for now. Hoping you have great results 😀
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Hi all 🙂 Looking for opinions on MRI results.
Last week, after a follow up MRI, I was told that the two spots we were watching (thinking one was possibly radiation effect and the other a blood vessel) appear now to likely be mets instead. The tumor board meets tomorrow and I’m tentatively scheduled for gamma knife again next Thursday.
This was all fine and understandable but when I read the findings, I don’t get a sense of certainty or urgency and will ask my neuro RO if waiting a little longer is an option. What do you all think of the findings below?
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