Brain Mets Sisters
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Just a few notes about what is going on. Short form so you don't have to look up my info.. I just completed my 6th Kadcyla Infusion Wednesday. My blood counts finally came up after the 5th infusion. They had been dropping consistently prior to the 6th infusion. I should have a progression scan for all but brain in the next 3 weeks. I am hopeful the scan will show no progression.
I completed 10 sessions of WBR in October. It took me 5-6 months to begin feeling better. Still don't have much hair. Oh well, I am not sweating that.
I completed 3 sessions of Cyber Knife for 3 brain lesions ten days ago. Two grew after WBR,and one was in an inconvenient/dangerous spot above my brain stem in my cerebellum.. About to taper of dexamethasone completely in next two days.
I feel better today than I have since October. I have regained a small share of energy I thought I may had lost forever. I am a realist, and know this renewed strength and improved health can vaporize in a blink of the eye. I noted my 2 year" cancer anniversary" earlier this week.
I will be cautiously hopeful and grateful while I can.
WNDRWMN
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hahaha
Three times since - which completely freaked me out. I rushed off for an MRI and nothing was there thank god. I think I get them when I am dehydrated so I am more careful now. Called ocular migraines.
My eyesight was sligdamaged by the original brain tumour and has not completely recovered, although may just need new glasses. Better when I wear sunglasses- now just need the right weather!
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Hi, just checking in. Had my 10th and last (for now) WBR treatment yesterday. The only SE I can detect is sleepiness, but feel OK otherwise.
I wanted to say that I had those flashing, zig-zaggy eye events long before I got breast cancer. They can come from a condition called "ocular migraines" which is a benign condition. Some people get a headache afterwards, but that only happened to me once. My opthamologist said they are caused by changes in hormone levels. I still get maybe one or two a year. They occurred more often when I first stated to get them when I was in my late 30's.
xoxoxoxoxoxox
Calico
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Bosco, CalicoCat -
Thanks for sharing your experiences.
Before my diagnosis of brain mets, I told my oncologist I start seeing flash lights, and she adviced me to see ophthalmology first. Went to the ophthalmology twice (3 weeks apart), 3 doctors checked, and all told me it was nothing, and perhaps ocular migraine.
But oncologist let me do the MRI anyway, and boom... Everyone was shocked.
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Hi everyone, i haven't posted in awhile, i also posted on another thread, i don't know how to start my own convo. For my peeps that recall, it's about my daughter Dani, she is 31yrs old, a young mom. She is on Herceptin/Perjeta and Abraxane. She had a biopsy done in Dec and when it showed a change to HER2+ she started on these tx.(ER+PR+and now HER2+). Mets throughout her skeleton, and skull.
I know that this combo is supposed to be very good, but i am so scared that it may not be working for her as well as they hoped. I had asked about Kadcyla they keep wanting to leave it for when they don't have other recourses. Onco says she kinda used up everything else.
She is been having Pet-CT every 3 mos, and sometimes MRI bcs of many brain lesions. In May, they said she was stable, and we are learning to deal with that. The lesions sizes had not gone down, but it did not go up at the time.
Yesterday's Brain MRI done for follow up, showed mildly increase in at least 3 lesions showing minimal epidural extension across the calvarium (which i know she had lesions there), and other areas in the scalp.
My concern, first is if they thought she was stable as of last Pet 6 wks ago, how is it possible that this increase is coming up, albeit the use the word minimal ( minimal for them). Is the treatment working if there is an increase on the size of lesions?? Onco, did not seem much concerned, but i really can't figure it out.
They don't know if maybe radiation of some kind they would do, they are trying to avoid surgery, it's very confusing. They will be discussing among them and then let her know of what decision they came up with.She had Gamma done to the spehnoid areas and other parts in the skull, she has extensive bone mets. She had Stereotactic done to the spine and other areas. So he is not so keen in using Gamma again.
Neurosurgeon was satisfied that it's not worse, and is gonna discuss w radiologist if and what to do to these areas.
I am very unhappy with the report because it does not state sizes, so i have nothing to compare with, just words. Neuro saw the CD, which is very good because he does not rely on the report, i just wanted for myself to understand better.
What does - "outer table destruction and extension into the scalp soft tissues" mean?? Among other stuff.I have to look it up to be able to understand better.If you could help me figure out what to do next, or even who knows if it's possible to get increase and still be stable??? Does that make any sense? Thank you guys
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Momallthetime, unfortunately I don't have answers to your questions, but I do understand how maddening reports can be especially when they don't give exact numbers for comparison. It sounds like the neurosurgeon feels good with the tests though, which I would take as positive. Sometimes I do think the best thing for the docs to do is all talk about it and get on the same page. Hopefully you will be able to get better answers soon.
I had my second WBR yesterday and this time it went very well. No headaches at all, and I was able to stay relaxed through the whole thing-3 minutes of it.:). Did some visual imagery which seemed to help. Even the mask didn't seem too tight. YAY! Having #3 in one hour, and feel much better prepared. Only SE sleepy, but I think I have been anyways. Thanks to everyone for your encouragement. Kelly0 -
okay girlies, I am a little freaked out. I was at the grocery store today and had an odd thing happen. I was at a check out line and suddenly couldn't figure out where I should stand. I ended up spinning in a circles. Then I found a post and grabbed on to it. My eye felt like it was about to twitch out of the socket. They gave me a chair and that seemed to help.
The EMT's showed up. Took my pulse. Etc. I didn't get transported. I had my in-laws pick me up, since they were the closest. Tomorrow I am meeting with my onc anyway. It's a regular appointment. So I am sure he's going to want an MRI. Did any of you ladies have something weird happen before brain Mets?
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Had my last 10 out of 10 WBRs last Friday. The SEs which seemed so easy have now grown into QOL issues. The fatigue/sleepiness is profound, and I am very unstable on my feet. I spent an hour in the garden today, but only worked half an hour because I had keep taking rest breaks. I sure hope this passes. I'm supposed to re-start chemo next Tuesday, and I hate to do that feeling like this.
xoxoxoxoxoxox
Calico
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Fujimama, I was already stage IV for about 4 years before the brain mets were found. My only symptom was a headache, so they did an MRI. I hadn't realized that PET scans do not check your brain. I guess that wouldn't be similar to what happened to you at all, but I wanted to say that I recently had something happen which was. I had 3 friends over about a week ago and for the life of me I could not remember who 2 of them were! No recollection at all. Couldn't sleep that night , so first thing in the morning I called the friend I could remember and had her fill me in. So scary when your mind is Swiss cheese. This had never happened to me before. I'm glad you are seeing your onc today. I know they will order an MRI and I pray everything checks out normally. So scary! Kelly
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I don't know what meds you are on but remember tat they too affect how we think/ process things.
You are in my thoughts
Liza
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Catesmom,
So happy to hear that your second treatment went so well!!! Just keep thinking of the "healing light". Hoping the rest of the treatments will be relaxed and eventually routine.
Fujimama,
I didn't have any brain symptoms and was very surprised to find that I had 12+ brain tumors including one that was over 2cms. Try not to worry too much until you get your MRI results. The symptoms you are describing could be a lot of things, SEs from chemo, etc.
CalicoCat,
I hope you can get the rest you need. The fatigue will go away eventually but for many of us, it peaked about a month after treatment so plan ahead with that in mind.
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Good scan results!!! Brain MRI shows no progression. PET/CT showed only really one lung tumor left that is minimally active and has continued to shrink (1.3 SUV, 2.7cm x 1cm as compared to original 9.5 SUV, 4cm x 3.5cm). Blood tumor markers have been in a normal range for the last 5 months. So far so good!
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Susan, thank you for the healing light suggestion. I like the visual imagery. I have now finished 4/10 tx. Definitely getting easier. I didn't use any of the herbals you suggested, mostly because of time constraints. I do believe that alternate therapies can help the traditional. Anything that they helps is great by me. It is so wonderful that you are doing so well. I love your positivity. Kelly
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I had 10 rounds of WBR in June, and will have Gamma Knife the first part of August to try to blast out 2 tumors. My doctor started me on Namenda , an Alzheimer's Medicaton, that he said has been found to be helpful for memory loss for those undergoing WBR. I'll be on it for 6 months total. We'll see if it helps.
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Well you know it's bad when the oncologist calls an hour and a half after the MRI with tears in his voice. My seizure is now confirmed and I have swelling in my brain and Mets. Another club I didn't want to join.
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Fujimama, I am so sorry. I was truly hoping for better news. It feels like you just got sucker punched. I know. Do they have any idea of a plan yet? As horrible as this news is, I am glad that your onc called you tonight because it is so hard to wait for results, and they told you in the most caring manner. Your onc sounds very compassionate, and I like that. Please let us know when you find out your plan. And you're right-no one wants to be in this club. Kelly
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Thanks Catesmom, I have been on bco for a few years. I first has bone mets, Ned, lung Mets, almost Ned, and now this. My oncologist had me pick up an anti seizer drug and good ol dexamethazone. Tomorrow I meet the new RO for options. Then bone ct on Tuesday and recap wed
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Hugs fujimama. I pray that you have good options. I remember being told about my brain mets. It was a very dark day. I am happy however that after my treatment I am still met free in my brain amost 3 years later. so I have a lot of hope that you will return to NED once again. More hugs
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fujiimama,
Darn it! Was hoping it was just SEs. Do you know how many tumors you have? Sizes?
I'm sure we can all agree with leftfoot that it was a dark day when we heard we had brain mets. As with most of these things, once we know the facts and start treatment, it doesn't look so bad. WBR worked miracles for me and cleared out or killed all my 12+ brain tumors with very few SEs. I'm just over a year post diagnosis. I know others who have lived years so far with brain mets and still going strong. In fact, just ran into one of my friends who has been living with BC brain mets for years at the Infusion Center today. She was doing well.
We are here for you if you have any questions or concerns!
Big hugs, Susan
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After 8 WBR treatments, I thought I'd dodged SEs, but it was not to be. Balance, strength, and memory really got bad after last 2 treatments, so I'm not doing as well as I told the RO i was after 8 treatments. He said I didn't need to see him again unless something else shows on the next Brain MRI. I'll call his office either just to talk to a nurse or something. I won't see my onc for at least 10 days, but will see what the NP at the onc's allows. I hope this will get better over time. I've always had strong legs, but couldn't lift myself onto a chair today between the weakness and poor balance. OH WELL!
xoxoxoxoxxox
Calico
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Oh shoot, I'm so sorry Fuji. I was reading your earlier post and wishing so much that it wasn't mets, but very worried. Keep us posted with your treatment plan, thinking of you right now.
Susan - so happy to read your latest scan results!
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Hugs fujimama. I'm so sorry to hear this news. My neuro has me on Keppra to control seizures and I've had literally no SEs from it. I've been on it since February when my seizure forced me to have a craniotomy. The Keppra might be a better option for you then the Dex. Best of luck to you.
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Thanks again 😊 Today has been much better. I got my face mask and R0 consult. WBR starts Monday at 4:30. Gonna talk with MO Wednesday about starting kick butt chemotherapy.
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how is it going Fuji? Hope the SEs are tolerable
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CalicoCat how are you and the SEs now. Do you know if our hair grows back, I shaved mine because it hurt coming out so much. I have energy issues and now which I never had before depression, from inability to do anything constrructive
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Hi, Smiley and all! I appreciate each and everyone of you, sorry as I am that we're all in this dang, crummy boat!
My SEs haven't worsened, but haven't gotten better, either. Last Friday and yesterday, the RO's nurse called to see how things were going. She consulted with the RO about whether or not to put me on steroids, and decided not to for now, but just keep calling and monitoring how I'm doing, and I should call them if things worsen. The steroids are for brain inflammation. The NP at the MO today (he's out of town) said my SE's (balance, memory, weakness in legs, worse fatigue) are common for 2 - 3 weeks after whole brain radiation. At this point, it's 11 days since treatment #10 of 10.
My lab work looked good today, so the NP went ahead and let me get my carboplatin + gemzar chemo today. She did cut it back by 20% because my labs tanked so much after my last treatment.
Aside from that, I have a lot of dull pain in my lower chest and abdominal area. I told her about my "bowel issues" and she said to stop Miralax 3 times a week and take Metamucil instead every day. She described my symptoms as being "irritable bowel", and I guess she meant as in "irritable bowel syndrome", which my mother had in her later years.
Also, I tried 2 days to do a little garden work, and have ended up with what I think is just general muscle pain from being so terribly out of shape.
Anyway, I guess I should have taken a lot of this to another thread, but am too tired to even do that, so thank you for your forbearance!
xoxoxoxoxoxo
Calico
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Oh, Smiley! It would have been nice if I'd answered your question!
About my hair after WBR, what I can tell you is that the stubble that was left after my husband shaved my head, has now fallen out, too. Since the RO answered without hesitation that hair loss wasn't permanent, and my MO answered that it was, but not to hold him to that because it wasn't permanent or all his patients, I just don't know! In my case, though, I think my current chemos do significantly thin my hair to the point where I'll always be in wigs.
I totally relate to the energy issues/depression/feeling unproductive! I'm 61, no spring chicken, but had to be helped like a much, much older person around Yosemite yesterday. It had me in tears thinking about how just 2 years ago, I didn't have any of these issues. For me, who has always gotten my psychic income from "doing", rather than "being", it saddens me to lose my "powers" by inches at a time. It's a continual bitter pill of sadness and ultimately, acceptance. Cry and grieve, but then try as much as you can to see the part of your glass that is 1/2 full. And remember that EVERYTHING changes, the good and the bad. It's helped me a lot through each one of these transitions.
xoxoxoxooxxo!!!
Calico
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I've probably said this before but on the two topics of hair loss and fatigue...
I lost my hair during pre surgery chemo in Spring 2013. It took several months to come back and then was straight, a little thinner and silky unlike my "normal" hair which was very thick, wavy and coarser (and a different colour! As I had been dying my hair for decades). I lost it again in Aug 14 with the WBR. I can't remember exactly when it grew back enough to be regarded as hair but it is now about an inch long all over, v curly, still thinner than what I remember as "normal", coarser and darker than the original regrowth though still grey not brown. Certainly I could go out without a wig which I will do when we go on holiday next week. Easier not to go wingless at home and work as many people don't know about my health issues! In fact I went back to my colourist on Sat and now have brown hair again. Some of my friends say it will change again in6 months time to pre chemo - I hope so as I look uncannily like my dog at the moment (he's a lake dog with tightly curled brown hair!). So hang in there.
On fatigue, bad news is my consultants said lowest point was 2 months after and it was for me. I took holiday and convalescence, did a bit of work and went back to work gradually. Good news is I was and am back at work mostly full time but still some fatigue due to most recent change of chemos.
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Hey ladies, thought I would check in. Things have been a bit on the crazy busy side of life. So this is short. I started WBR Monday. Side effects haven't been too bad. One eye gets twitchy. Hard part is I am grounded from my car for six months. As a busy mom with the mini van - this just might be crazy. Lucky for me know have a very supportive family.
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My car has been taken from me to, but no time frame
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