Brain Mets Sisters
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Hello All,
I’m awake too early after only just falling off to sleep. I have spent a couple of weeks reading the post here, though to be honest I used to scroll past this thread quickly. (I think I was afraid)
So, I was diagnosed with IDC BC March 2017. I did surgery (right side mastectomy), chemo, and radiation. I began Tamoxifen Nov. 2017 due to being what was told to me ER+ PR- HER2-. (I found out two weeks ago when talking with oncologist I’m only ER+ weakly). I also had a hysterectomy June 2018 and was switched to Arimidex. Both Tamoxifen and Arimidex gave me countless se’s, but I continued Arimidex for 18 months. Almost two weeks ago I was given a break to address the dizziness I have been having since about mid November 2019. I had this before on Tamoxifen and the Arimidex. This time I was also experiencing ringing in my left ear. I did mention it to oncologist and primary doctor. I was referred to ENT who did testing and only found slight hearing loss, which he said was normal for my age (56). I also went to ER due to the ringing in ear and dizziness. I was given a CT scan of head along with EKG of my heart, all came back clear. I remained persistent because the symptoms persisted. I also began to develop a bit of upset stomach, no vomiting I thought this may be due to stopping the Arimidex as it came on about 5-6 days into the two week break. I also have had less of an appetite.
So, yesterday I went for a Brain and neck MRI which is a bit scary. I’m really trying to be optimistic about my future. Please offer any advice or chime in with your thoughts. This site has been a great place to express my deepest thoughts. Thanks everyone.
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Humblepeace, I am sorry you are dealing with symptoms that are scary. I can understand waiting for the information to come back is also distressing. I will not try to say if your symptoms are related to disease because brain met symptoms can be different based on where they are in the brain as well as if there are symptoms of brain swelling. That is how mine were found out, my MO said that the cancer was in the brain for me from the start most likely but the tumour did not start to grow for almost a year after initial dx. My symptoms were related to a swelling brain. My symptoms were seizure, cognitive issues, eye pressure and morning nausea EVERY morning. I was told to get my affairs in order almost 4 years ago and I am still here with decent quality of life.
If they did find mets in the brain, there are good treatments that keep them at bay. There is whole brain radiation which I had which has not caused me any problems. I had WBR to the aggressiveness of my original cancer. I had one other brain radiation, just to where my original tumour was a couple of years later. That was successful and I have been stable in my brain for two years. Again, no perceptible difference for me. What I am trying to say is, as hard as it is to do, don't spend too much time googling or trying to figure it out until you know IF you have any brain mets and what kind of treatment is proposed. I do encourage reading this thread, but would not go too far back as this thread goes because treatment options are better. I recommend to hold off on too much research until you have your results. Take someone with you to your appointment. They can keep track of what you are told. Another option if you want to keep a record is to ask the doctor if you can record your appointment. It is important to obtain permission but is worth asking about if you want to review information later. It is not guaranteed but another good option. If not allowed to record, rely on the person with as a back up. Good luck
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Mara51506,
Thanks so much for responding back to me. Your words are so encouraging. I could hardly wait until Monday. I hoping I will get answers by then. I will look back on the earlier post. I’ll go back to at least 2015. I pray I don’t get any other symptoms. I’m staying close to home and trying not to drive.
Thanks again.
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We will all be thinking of you Humblepeace. I will be in your pocket for Monday as well. Keep us posted either way.
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Allybee,
I am not sure about necrosis, I have had radiation to my thoracic spine T2-T12 and then just finished 10 days of radiation to T12-L2 for my LM disease.
Will repeat MRI in 3 months....let the waiting game begin:/Best,
Kathy
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Humblepeace,
I'm sorry you are having such scary symptoms. I hope the MRI provides answers. If I may offer a little comfort, I am on Arimidex too and have been for about 3.5 years. The ringing in my ears started about 2 years ago. My onc and neuro onc and ENT all searched and searched for a cause, but it was finally found to be an annoying SE of Arimidex. All scans were clear, so I will hope this will be the case for you and once you are off the Arimidex awhile the ringing will stop.
Best to you.
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Goodie16- Thanks for that information. I’m very thankful again for this site. The support is genuine and I much appreciate you all. I did stop Arimidex about 8 days ago. The ringing persists. Trigger finger is better lol 😂
I made an appointment with my radiologist for 3:15p (California). I’m not sure if the results are back as I was told Monday or Tuesday. I pray he is able to get them.
I guess you can say I’m picky....I want answers but only the answer that I want!!
Thanks everyone.
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Looks like I’m being scheduled for a Craniotomy soon, what can you tell me about the procedure and recovery?
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Mae, I went through craniotomy myself. Not sure how long the surgery was. Woke up with a turban on that stayed on for less than 24 hours. I had the surgery on the Friday and was released from hospital 3 days later. Never experienced headache or anything. For me surgery was easier than my radiation was. I was out shopping the day I got home. People just thought the staples in my head were weird. As time went on, I would feel weird sensations from nerves knitting themselves back together. I also got periodic tooth sensitivity, again from the nerves. The nerve sensations do not last. No real pain associated except for when I had the turban wrapped around my head. By the day after surgery, I was eating and walking around the hospital halls between visitors due to all my steroids they put me on to make sure the brain did not get swollen.
No cognitive issues due to surgery and no problems with eating or energy. As I say, I was walking an awful lot post surgery before my WBR. Surgery itself was pretty easy for me. My only issue was my five roommates as no semi private room came up and the nurses having to wake me up to do cognitive tests or put some antibiotics on through the IV. I was also determined that I was getting out of the hospital sooner than the week they told me. No seizures or anything as once they removed the large tumour, my symptoms went away. Radiation was much more difficult for me than surgery.
Good luck, PM me or let me know if there is anything else I can tell you.
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I too did not find my crainuotomy too hard to recover from. It was the meds they put me in for preventative measures ( steroids and antiseaizure meds) tgat were the worst. I warned myself off those as quickly as I could and felt great. Those meds made me feel dlow and in kind of a snow.
occasionally I get a little pinge of pain at one of the sites where they reattached my skull but that doesn’t hurt so much as just feel weird and remind me I had brain surgery.Good luc
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Hello Goldie16 and Mara51506,
You all have such a beautiful spirit. I prayed and cried and prayed some more and today was still one of the hardest days of my life....really the whole week.
I made it to the appointment a bundle of nerves, no Ativan, no chaser. Only God and my hope. The radiologist had me to undress for an examination which threw me for a curve, as I had already told his nurse why I was there and she had already collected the results.
He stated I was fine, no evidence of “C” in the brain or the neck MRI. He asked me to follow up with my primary due to sinusitis and degenerative issues in the neck. I don’t really have an answer to the symptoms, but fine with the one answer I received.
Thanks again, so many hugs.
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Humblepeace, so happy that it was not cancer mets. Thanks for the update.
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Hi illimae,
My craniotomy recovery was pretty easy, much easier than my mastectomy one! I found I tired easier for a few weeks after and had some light sensitivity the week of the surgery, otherwise not too big of a deal. I hope yours is smooth!
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I am in your pocket Mae as well pre, during and post surgery. Hugs and my warmest thoughts coming your way.
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Thanks everyone. Those of you who’ve had a Craniotomy, how long was your hospital stay and how long did you have to be supervised at home? DH is very concerned and has to go to work a week after surgery or drop the gig and stay home.
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Mae, I was in hospital 3 days. Was never supervised at home.
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humble peace,
Sohappy to hear the news!!!
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I was home in 3 days. My sister in law was there to help me but that was just because I have 4 children who are very busy. I did not need help myself. She was with me for 1 week.
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I was in the hospital 3 days. I live alone, so my neuro onc recommended someone stay with me for a few days until I was sure I was feeling ok...but I had a seizure prior to the craniotomy too. My BFF stayed with me for 3 days and then I was on my own.
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Thank you everyone, it’s very calming to know that recovery can be short. Also, while DH is wonderful, I’m am very independent by nature and prefer to not need assistance. So many well wishes, I’m gonna need bigger pockets!
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I am wondering sisters how long you were on dexamethasone after WBR and at what dosage? It took a few weeks of horrid symptoms for me to get a scan because I thought it was a reaction to gemzar (migraine-like headaches, nerve issues, no appetite). So I finished WBR a week ago, and of course the fatigue is still there. They weaned me off dexamethasone and the headaches and sort of a pulsing feeling in my head, weakness, vision problems, and almost like a head rush came back. One nurse said 2 mg a day. Another nurse, more my primary, said take it as you need it and MO is happy to prescribe. But it's like 10 mg a day, which seems like a lot. Obviously if that's what I need, then that's what I need. But since the docs can't tell me, I'm curious about your experience.
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Selkie, I don't remember exactly but I think I took 2mg twice a day and tapered off over the course of a month. Fatigue was a significant side effect for me and it took quite a while to subside. My radiation oncologist managed my dex prescription. Did they prescribe Memantine for you? It is supposed to help minimize cognitive side effects.
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After both WBR in 2016 and the local treatment in 2018, I weaned off steroids within a couple of weeks. I had terrible SE from the steroids and got off them as fast as I could. I was on 25 mg for the WBR as my brain was still healing from the craniotomy so it took longer to get off them. I also admit to weaning down quicker than I was supposed to. Halved my does every 4 days or so. Did not have any problem. The local treatment in 2018 was quicker as I only took 2mg per day of treatment. RO said I could stop taking them after the 5 days of radiation since it was complete between Mon to Fri.
My symptoms after WBR were extreme fatigue, depression to the point of wanting to die and lack of appetite. I improved a little bit each day and got strong again. No cognitive issues from either round of radiation to my brain and I am NED as of last MRI after almost two years since last treatment.
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Selkie,
Since I didn't have any symptoms, I never had to take steroids during or after WBR or the two times I had gamma knife to the brain.
Hugs, Susan
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Thanks. Sounds like it varies so much. I get blood sugar issues, edema, tingling hands, and insomnia from the dex, but awful head rush, swelling, "spells" if I don't take them, so I'm trying to balance the sx's.
A follow up question: is lack of taste radiation or dex, do you think? It's a new, annoying SE.
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I have had taste issues while on dex both with chemo and while taking with brain treatments. It does come back though.
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Craniotomy update: Neurosurgeon is very happy I went with surgery over Avastin since we couldn’t be sure what the area actually contained. She said avastin does work in radiation necrosis but not on cancer itself. And had I tried avastin first without good results, there’s a 30 black label ban on surgery after its use (that’s how I understood the explanation anyway) and in my case it was mostly cancer, so possibly a risky delay. Anyway, my head feels sore but ok, however, I’m not being released as quick as usual do to some lingering high BP and possible temporary nerve damage limiting food intake. The right side of my throat is weaker and some liquid is getting caught about halfway down causing me to cough and get it mixed in with breathing.
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illima- thanks for the update. Thinking of you and hoping your body heals itself quickly and you may return home soon.
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first brain MrI since starting the clinical trial is tomorrow in CA. Crazy scanxiety going on. Had a CT of neck down as well on Thursday. A lot riding on these results.
Hoping for the best.
I’ll image- hoping you are doing better today.
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Best of luck LFF on your results.
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