Brain Mets Sisters
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Hi MemaSue56,
Congratulations on finishing up your WBR treatments! I finished 6 of 20 this morning. They are doing my eye and brain at the same time so they had to stretch it out. So far, I've been okay. Fatigued for sure. But when I'm tired, I just sleep. Not a big deal. Was a bit nauseous but went on Zofran and that seemed to do the trick. Was having some trouble keeping my appetite up later last week but today I ate an entire burrito plus chips no problem. I didn't have any brain swelling before the radiation despite the fact that I have more than a dozen "lesions" plus one 1.5cm tumor so they said I didn't need to take steroids prophylactically. I've even been able to continue going to dance and yoga class. Definitely not in top form but not too shabby. Still driving, cooking, etc. Don't know how I will feel towards the end or after treatments but I'm just taking one day at a time and trying to keep my strength up. So far no problems with hearing or memory loss. Still have my hair but I hear I will lose it after this week. My vision goes up and down but I have eye mets so it's not the WBR.
Please keep me up on how you're doing. I was thinking I was the only one out there and feeling kind of lonely.
Hugs, Susan
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Hi Susan - don't feel lonely, we are not alone. You are WOW, a trooper. NO way am I able to do even a portion of what you are doing physically. I am as bald as an eagle or as I like to say...I have a Lolli-Pop head...LOL. Went thru it 3 summers ago, so not a big deal for me and plus...it's hotter n heck where I live so to say the least, I'm cooler. My head feels like it is in a fog, tinitis(sp) in ears very annoying. Shakiness too. But...I finally got my Big C (constipation) to let go. tmi? LOL...heck we gotta tell it like it is right? Good that u didn't have to do the roids...didn't like em at all. But now every other day 1/2 and done on the 14th and my 'toad' look already calming down. woohoo. I'm still driving around my little town here, but not confident to drive in Vegas alone.
My RO said typically 3 mos after WBR before another MRI. But my MO wants one done in 6 weeks. What is your RO recommending?
I also had some new areas of lymph node mets pop up in this last PET....so next week my MO is starting me on TDM1 - also known as KADCYLA every 3 weeks. It targets the HER2 gene and supposedly leaves the good ones alone. They call it the 'smart bomb'. The Moderators put up a trial and survey thing about it. I might try to start a thread, I'm just not very computer savvy.
Anyway, I'm here for ya....u can pm too.
Love, prayers, healing positive energy, and BIG HUGZ to you!!
Sue
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Sue,
Thanks so much for the supportive words! I would bet that most if not all of those SEs go away after a month or two. If not, you may want to see an ear, nose and throat specialist to check out your ears. Sometimes I hear you can just get a little infection during rads and think it's permanent hearing loss.
My MO wants me to do the scans on June 9th which is just a little over two weeks after my rads are done. Seems too soon so I will check with her again. Perhaps she scheduled it back when it was looking like 10 days of rad treatment. I have heard that it can take time for the radiation to do it's job. I will ask my RO what she thinks. I think my MO is worried about my lungs, nodes and breast which are right now only being treated by Tamoxifen and Zoladex. I've got a lot of stuff going on at once!
I know what you mean about feeling like your head is in a fog. I feel like that too but I think that's temporary. Monday morning, I woke up and my head felt clear because I hadn't had rads for two days. Now I'm back to the fog.
TDM1 sounds exciting! I'm HER2- so can't participate. Hope the "Smart Bomb" does it's job without out too many SEs.
Sending positive, loving thoughts and prayers your way too!
Hugs, Susan
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Susan - Thanks for that info on the ear. My right has been like, painful. If it doesn't dissipate I think I'll get it checked out. That is a lot on your plate. I'm not sure what tx's are out there to slow down the mets to ur lungs, nodes and breast. I see u only removed the right breast? Is this where the new uptake is? Well, I'm jes being nosy...because as my MO said....gotta git da dang brain stuff over before we move on with my new node mets. Sending you BIG HUGZ (((Susan))) and I'm going to PM you.
Lover, prayers, and positive energy too,
Sue
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Hey Susan and sue. Hope I can Join your conversation. Going Tues to see RO. MRI SHOWED 7 small lesions. Biggest one being 1.3. I also have lung nodules and lymph node involvement. Recent pet said a small new nodule on adrenal gland. That's kinda weird. Kinda scaed about side effects. WAnt to kick these Mets butts! Hope we can encourage each other. I'm scared! Pam
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Hi Pam,
Sorry to hear about your lesions. My biggest one is around 1.5cm and I have over a dozen smaller ones. This is why they recommended WBR instead of gamma knife. I would think with your 7 you could probably go either way. So far, the side effects for me have mainly been fatigue. I wasn't put on steroids until my last day of treatment. That was to try to help my vision which hasn't gotten any better. I had a tumor in my right eye which was being radiated at the same time so it's not from the brain mets. These days, if you don't have any brain mets symptoms, you may be able to avoid steroids completely. I was hoping to avoid them completely. They are so far a mixed bag since I do have more energy but I've only been able to sleep about 4 hours a night. I wrote to my doctors this morning to see if I could reduce my dosage since it doesn't seem to be helping my vision.
I spent a lot of time agonizing over WBR and reading about about steroid side effects but it really hasn't been that bad. I wouldn't have been able to work through it. I took at least two naps a day, but when I was awake I felt pretty good and tried to exercise (yoga, dance, or a long walk) every day. My sense of taste seems to be shot but I hear that will come back. One thing you may want to try if you have WBR is that there was a study showing that taking Namentine (an Alzheimer's medicine) may help with short term memory loss during brain radiation. No side effects so I figured, why not? I always joke that my husband needs to take it more than me.
Please keep us posted and write any time with questions or concerns. This thread doesn't seem to get much action but you are not alone! Sue helped me a lot.
Hugs, Susan
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Hi All, new to the brain mets club and I am hoping to kick the mets butt as well. Pam I am similar to you except I have 10 lesions and the largest is 2 CM along with nodes on my lungs and one on each adrenal gland similar to Pam.
All of this came up yesterday when I went in for a clinical trial check up with the doctor and follow-up on my CT and heart scan. They said I had fluid on my abdomen and when I told them about some crazy headaches I was having I was fast tracked to the ER and a room and then had a brain MRI and abdomen MRI. By the time I was done they knew about the brain mets and I was transferred to a room in the hospital. Today I was fitted for a mask to get full brain radiation which I had tonight. I really worked myself up and there was zero pain and it only took 10 minutes. Tomorrow they will do #2 and I will have 10 total.
Any advice anyone has for side effects I should be on the look out for would be appreciated, it happened so darn fast, I am trying to go back and read the posts to catch up. My biggest concern is I am TN and my tumors in my left breast are doubling faster than I can count them but they said they can't treat them with chemo during this time due to the rads. So they are researching options and I should have one or two next week but in the mean time I am afraid these tumors are getting WAY out of control.
Sorry for rambling on - I too am afraid at this point and just thought I would turn to the group that unfortunately has the most knowledge in this area. Thanks in advance!
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sherbab,
So sorry to hear about your progression. I also have a 4cm tumor plus "satellites" in my right lung plus swollen lymph nodes in the middle of my chest. Do they have you on steroids? Like anything else, there is a long list of possible side effects from the brain radiation but the only one I really experienced was the fatigue. Like you said, the treatments are not really a big deal, quick and painless. Some people experience hearing loss but so far I seem to be okay. Of course, my teenagers have always complained that I'm hard of hearing but I say they mumble too much!
I went back to the beginning of this thread and read forward to find out more about people's experiences but found that my own experience was not as bad so I kind of worried myself over all kinds of possibilities that didn't happen. After about page 55, I gave up trying to read through it all.
PM me any time if you have anything you want to discuss.
Hang in there! Sending positive energy your way!
Hugs, Susan
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Had a hearing test yesterday for ringing in ears and it showed some unilateral hearing loss, so they are sending me for an MRI next week. Have been stage 1 cancer free for 7 years now. Scared it will show brain mets.........0 -
Susansf - just wondering how your MRI/PET went today. At least I think u were scheduled for today. Hoping all went well and that you are fairing well too.
Sherbab - OOO I so kno that feeling. And we don't accept apologies for rambling, venting, cursing, crying, or any such thing. This is just why we are all here....so don't hold back!! I was IV/mets out of the box, but had been NED for almost 3 years and feeling really well, except for occasional headache that I chalked up to allergies. Then this April my re-staging PET showed shadowing at brain stem and lots of newly involved nodes. After brain MRI, did 15 rads with the mask...kinda freaky I kno. They let me bring my mask home. Anyway, my 40ish daughter was outraged that they were not addressing the nodes too. It is scary, and I can't speak for the TN, but the HER2 moves super fast too. But you must put faith in your team, if not, find another one. Now I am on T-DM1 every 3 weeks for the nodes.
As for se's on brain rads....stay on the steroid dose they suggest, when they start to taper and your headaches come back, even a little, call the RO. Thrush....(SusanSF I forgot to mention this one) is common in the mouth due to 'roids. They gave me script of Nystatin or something like that to gargle with. Got on top of it before anti-b's were needed. Your taste buds might be affected. Foods wont taste as good if at all. The 'roids when I was on 4mg 4x a day, made me feel like I was smoking dope...munchies big time. Get up in middle of the night. But once I started tapering, that went away as did the few pounds I gained. OH, and yes you'll lose your hair. Fatigue yes, but didn't or hasn't affected me that much and I am almost 30 days out from last rad. Dry mouth...get the bio-tene (sp) gargle and I also have the spray on my nightstand. Oh, and something else, I knew I was getting a little bit of skin burns on my ear tips etc, but once done and now time has passed, it actually, well I can't say burned exactly, but 'killed' maybe the 1st layer of skin on my entire scalp and 1/2 way down my forehead. Weird & funny looking, but not painful and now is almost all sloughed off. Your hearing and your sight may or may not be affected. My sight was slightly, took more squinting...but back too normal now. Hearing was off, still off, but not as much and I am old...LOL. OK....I think I covered...o wait...maybe some Short Term Memory loss...heehee...see how fast I forgot bout that. I'll jes blame that on age too. But seriously, some will have some won't have some or all of these se's. I do so wish you the best and you sound like a trooper...so keep on...in this case...traumping the chit outta this beast!
CP19 - Any headaches? I know the panic, but try to check it for now. As me maw used to say, 'don't borrow trouble, ain't nothing you can do about it til then anyway'. And stress is not good for any of us. I'm going to keep you in my prayers....please keep us posted on when you test...I'll send extra energy your way.
Sending prayers, hugs, and lots of positive healing energy out to all my sisters!!!
Sue
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OMG - PAM!! How could I miss you....oooo I beg forgiveness. OK, so by now you've seen your RO...how many rads are on your plate? Are you having any other se's that I or Susansf or someone else hasn't mentioned. Please check in soon and let us know.
BIG HUGZ and all prayers, positive energy to you too.
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Sue,
So sweet of you to remember that I had my PET/CT today. I can barely keep track of my own appointments!
It was a lot heavier emotionally to have a scan now that I know I'm Stage IV. The only other one I've had was the one that gave me my Stage IV diagnosis. I feel pretty good. My breathing is much better. My eye mets have stabilized though not yet getting better. I can feel my breast tumor and it seems about the same. In other words, I'm expecting some improvement and at worst no change but you never know, right? The report won't come out for a couple of days and I see my MO next week. They gave me a CD with my images and I'm tempted to look at them but I didn't see the last images so I have nothing to compare them with and worry that I might freak myself out over nothing.
Hugs, Susan
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My unbelievably wonderful MO e-mailed me after midnight last night to give me my scan results: "Nodes much better. Lung mass stable but much less active. Overall improved!". Got the written report today and it did sound very good. Everything is either better or stable with the exception of my eye tumor which I already knew was thicker from my photos done in Ocular Oncology. My first scan since diagnosis two months ago. Feeling relieved!!!
Won't have brain MRI until the end of the month but I guess they did scan my head too. The report said "at least 2 peripherally enhancing non-FDG avid masses". I'm hoping that "non-FDG" means they are dead but will ask my MO at my appointment next Tuesday.
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you girls are rocking this out of the ballpark. Wbr not bad. My bug problem has been the steroids. First didn't. Care if. Lived,,,, 2nd week slept all week. 3rd week weaning off and seeing some spunk_ come back. Down to. A day but eating like an abnormal hose. Been very weak legs but again said was probably steroids too. Anyways 2 more to go. I'm glad everything is doing well. Been off for a few weeks but back lv9e u guys
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Pbjarrett,
Congrats on getting towards the end of your WBR! Hopefully they will let you taper off steroids too. Weak legs probably the steroids so you should get that back once your off. I'm almost three weeks out and still more fatigued than normal, whatever that is now, but my head is definitely a lot clearer. Was kind of in a fog during treatment.
Hugs, Susan
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Ohhh SusanSF - that is definitely wonderful news. FDG stands for fluorodeoxyglucose which I guess is a 'marker' that tells the PET if there is any activity. So in the quick research I just did, I'd say that is a positive thing. What a gr8 MO to email you so you don't have to worry until you see her. I only hear from my MO if the news is bad, so if I don't hear, I consider all/most OK. I am scheduled Mond 6-16 for a follow-up brain MRI. See MO on the 23rd. Am hoping I don't hear from her at all during that week...LOL. Any particular treatment available for the met in you eye? Am, as always, keeping you in my thoughts...Hang in there!
PJ - Yay on only 2 more rads to go. I too ate like a horse, but that tapered off as I tapered off the steroids. Am weak in legs too, but that is also improving. Started back on my elliptical...but oh it hurts and going is slow and I can barely do 10 mins. But the old adage 'use it or lose it' is true, so something is better than nothing. I'll keep plugging along. Keep us posted, don't stay away so long K?
Lots of love, prayers, positive healing energy going out to all my sisters,
Sue
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Just checking in with my Sisters. I had a 6 week brain MRI on Monday, see my onco this coming Monday. Haven't heard from onco so to me this is good news.
Where and How is everyone doing?? Pop in and update when you all can. Am still sending out lots of positive healing energy to you all!!
Sue
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Hello Ladies! Just checking in. I hope everyone is tolerating treatment well and they were successful. I do not have another MRI till July, hoping it was worth it! The few issues I had were hospital stays due to swelling, they weened me off of the steroids too soon. Pounding headache and vomiting. Take your time with the steroids, it is worth the lack of sleep, thrush and weight gain!
Sending love and prayers to all!
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Sat down with my MO last week to discuss in more detail my PET/CT scan and it was even better than I realized. My bone mets (previously spots on both femurs) seems to have disappeared. All of my lymph nodes now look normal (previously extensive mediastinal and hilar lymph node activity). My breast and lung tumors have shrunk quite a bit and are much less active. Have my brain MRI on 6/30 so don't know about my head yet but I don't have any negative symptoms so I'm hopeful.
Have a lot more energy these days. Doing hour and a half Level 3 Iyengar classes and dance classes. Don't even need a nap most days. Vision still messed up in my right eye but without that I would barely know I'm "sick".
Sue, Let us know after your appointment on Monday. Sending lots of positive thoughts your way!!! Also, keep in mind that the radiation keeps working for a year or more out of treatment so sometimes tumors can actually be bigger shortly after treatment because of inflammation. My eye tumor was bigger but my RO and Ocular Onc said that wasn't unusual and to be patient. Keep truckin' sister!!!
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Glad everyone doing so good! Susan wonderful news on the scan. Vickie. I'm sure it as worth it. Countdown to July. Woohoo. Sorry about hospital though. I wanted off steroids but now titrated down. 2 more weeks. Mama..... I guess the no new thing Ok..... But I want to hear words.... Better, improvement.... That's what I want to hear from you! For me.... Brain mri in 4 weeks I think. Appt with ro in. Weeks. See if we kicked these things butts. Just saw MO. Started gemzar on Monday. Never been on that on. Still feel very weak from radiation. 1 week out. Hope it gets better! Soon! Although want to Waterpark. Slow but made it. Maybe overdone it a little but had fun. Good to hear about everybody! We got this!
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Hi Everyone - Just checking in .... haven't posted in quite some time, but been reading the boards. My last scan in May was stable to liver, lungs and bones. Currently on doxil and cytoxon. Had a recurrence in my surgery cavity and had SRS done about 10 weeks ago. Having a brain MRI on July 31. Welcome to new girls.
Good luck with scan results, Sue.
Hope you're feeling strong, Pb.
Sorry about your hospital stay, Vicki. Hope you`re feeling better today.
Sending Healing Love and Positive Energy,
Karen
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Hello Brain Mets Sisters,
I am trying to keep up! In September 2013 I had surgery to remove a 3.5 cm tumor in left parietal lobe. This was followed by Gamma Kniife in October 2013 to radiate the surgical bed as well as 2 small spots in my cerebellum. This last May I had Gamma Knife again for 6 new tumors scattered about my brain. All were less than 8mm, most smaller than 3mm.
My problem since the latest Gamma Knife has been hearing loss. For the last 10 years I have had periodic episodes of Cochlear Meniere's syndrome, where my right ear would feel full and hearing would be off and down for a few days, as well as dizziness. Since the Gamma Knife, my hearing has been very low and the dizziness does not go away. The brain doctor and medical oncologist put me on steroids (decahedron 4mg) for a few days, but that did not help. I am now in the process of getting an appointment with an ear specialist at the University of Miami. I almost hate to tell him that I've had 2 Gamma Knifes, because I think he will blame my problem on that.
Am interested in anyone else's problems with hearing following Gamma Knife. Does hearing improve with time?
Thanks,
Beth
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Hi Jill;
Thanks for writing me. i am having vision issue b e they slight compared to you. I did hear that avastin was remarkable in healing teh brian. Maybe I will mention that to my new oncologist. If you want to write to me via email, let me know Ia m always happy to assist you wit h reiki, an energy healing that I do.
Take good care and keep up the positive energy.
xx
Marcia
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Hi Dear ;
Take heart and tel l your ENT specialist. al they do is drain your ear by insertions a simple tube ,ad n viola the swelling pains hearing loss is gone. I ahd it done after steortactic radiation. Tell the doc ,and I think it must be easier than hearing loss. Let me know what he said. Blessings,
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Morning Sisters,
My 6 week post rads shows some shrinkage, am off the steroids completely, and am able to drive by myself again.
Vickib - they weened me off too soon also, headaches were horrendous. Staying on them is worth the se's I so agree. Sorry to hear about your hospital visits, this can be a real biotch sometimes. HugZ!
Susan - GR8 news!!! You sound so upbeat now and you're exercising too...wonderful!!! Thanks for telling me that rad keeps working a year or more post. I had a feeling (cuz RO said 3 mos scan) but no one really told me that.
Pb - I still feel weak 6 weeks after. Actually, I have good days and not so good. No energy one day, plenty the next. Hoping it levels out soon for you. I am on TMD1 now, every 3weeks. Wish I could help you with info on the Gemzar. And I want to hear positive results from you too after you meet with your RO.
Karen - Thank you, and good news on your results!! Congrats!! How is your surg cavity 10 weeks out, all good?
Shoo - my left ear has never been right, now almost 8 weeks post rads. Good you are getting an appointment. Praying you find some relief. I get dizzy a lot too.
Marcia - Been thinking about contacting ENT...thanks for the info, think I'll get on that by weeks end.
Lubslubs, prayers, and positive, healing energy to all!
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Sue - Feeling OK, not having brain mri til July 31. Hopefully all is well.
Sending Love and Healing Energy,
Karen
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Sue,
Glad you are off the steroids and able to drive again! Shrinkage also sounds good! Did they have any way of telling whether the tumors are active or not? I didn't think the MRI could give that kind of information.
Hope you go to see the ENT soon.
Hugs, Susan
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Hi Susan, and thanks. I don't kno, didn't think to ask, thought shrinkage was best outcome. Do you kno of a test that can tell is lesions re active?
HugZ, Sue
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Hi Susan - They didn't say, I didn't know there was a test that can determine activity? Do you, if so, share the name of the test please. I kno a PET is no good, thot MRI was best. Haven't seen ENT yet, don't think I'll have time before my road trip on July 2. Am having a Bone Scan and CAT/CT this Mondy, then leave for vacay on Weds. But I'll get it done if still a PITA when I get back.
Hope things going well, HUGZ,
Sue
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Hi All - I'm new to this thread. MRI last week showed brain mets. I also have 30 spots on my liver, lung involvement and bone mets - the bone mets are stable. I'm meeting with my oncologist on Monday, we spoke for a few minutes on Friday and he said he will likely recommend WBR but that I'll have a consult with neuro oncology first. I'm hoping to start xeloda on Monday. Letrozole was a bust for me. Thank you all for being here and for writing about your experiences in such detail, it is so helpful to prep for my appt on Monday and read what you have been through.
Clare
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