Brain Mets Sisters
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Susan your dog is so cute! I have 2 rescues as well, this is Miso we rescued her 11 years ago but she's still my baby.Glad to catch up with the recent postings.. People on the mend, recovering orstarting new journeys full of hope. Thank you the inspiration.
Sending out hugs to everyone:)
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Hey NicNak, I would smell something almost like burning or ozone while getting brain rads too. I assumed it was the beam going through the mask, the smell of plastic I would guess. Creepy, did not like it myself.
Glad to hear things are going well on your WBR. Weekends are nice to recover. If you are able to eat, allow yourself lots of protein and fluids. You are correct, more fatigue will set in after the WBR is over. This is normal. All told, there will probably be a period of 6 to 8 weeks of recovery once you finish. Biggest thing is rest when you need it, exercise if you can manage to speed things along. Even a short walk helps.
I am finally coming out of my radiation recovery. I was getting along until I took chemo Nov 15. I had taxol and it kicked my butt all the way back to my bed and made eating difficult. I will not do chemo again, only willing to get Herceptin/Perjeta. Can't spend my time on the couch from exhaustion every week. Not when we are not trying to stop a progression in my body. I have no mets so am only willing to do the targeted therapies which are gentler. We'll see what my onc says Tuesday.
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I am so sorry to have to say that KT has passed away as of yesterday. My thoughts go out to her family. As with everybody here, she has been through so much. Glad she got a few weeks where she felt decent in hospice. Be free now, no more pain.
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mara51506, I am so sorry to hear this. So so sorry. My thoughts are with her family. Fly free K
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thank you for passing along that information. My thoughts are with her family.
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Hi All
Sorry to hear about KT. RIP.
I had my first PCI today, went ok. Man that mask is totally creepy. I do not want that as a souvenier LOL. Tx was uneventful though, 5 minutes. 9 to go. Hope everyone is feeling well today,
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Thank-you for letting us know about KT. I'm so sad to hear that news. May peace and comfort find her family.
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myleftboob, glad to hear you are underway. The mask is creepy. I did not keep it either. You will find treatment goes quickly. That is a plus. Good luck for the rest.
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The news of KT is heartbreaking. I am new to this thread but started in the beginning of it and spent weeks reading hers and others stories and it is hard not to get invested in them all and feel a connection to all you wonderful ladies even though I don't know you personally.
I finished up 5 of my 14 WBR today. Still feeling ok so far. Dr wants me to start tapering steroids since I am not having issues yet. I am ok with that! I am currently doing 6mg daily. Cutting it to 4mg daily over the next week. I started taking Boswellia too and I believe that is helping with any swelling as well. The GI issues started yesterday but nothing too bad. Back when I did Taxotere, THAT was brutal so I feel this is mild in comparison. So upward and onward...
Hope all you ladies are fairing well and having good days.
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NikNak, glad to hear you are doing well on WBR. Glad to hear you can also start weaning down from the steroids. Hopefully the GI issues subside once you are off steroids. The extra sleep will be helpful to recover. I hope the rest go as smoothly.
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Mara, thanks for sharing these sad news. I just found out also. Just to think KT was just telling us the other day she is out of options, how did it happened so fast? I don't understand. She was so warm. And the kids. Aghh!
I've been awol, first I was going with Dani to docs, and had some issues myself. My SIL had to update my laptop, and I just got it back. So i would like to go back and read and then I'll check in again.
Dani is having a Brain MRI next week, she feels much better after they finally radiated the large lesions. She still feels pain on the sphenoid area, but they are trying to hold back till next scan. The tingling and numbness on the mandibular finally got better, after months of them trying not to radiate. She did pay a high price, mouth sores in the whole mouth, she practically could not eat, swallow even liquid for a week, she lost 6LBs she could not have afforded to lose.
Nicknak in case I don't finish reading it all tonight, are you taking Zofran, it's not a miracle drug but it could help, and Probiotic for the stomach issues, maybe.
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I am so sorry to hear about KT. Another victim lost way too soon too this dreaded disease. May she live in through all of the lives she touched.
I know it has been a while since I've posted, but I wanted to share some good news. I had another follow-up brain MRI, one of many since SRS to 7! lesions in February. Today's scan that they all remain stable to improved. I continue to have localized seizures (kinda of like a cross between muscle spasms and numbness) in my left hip region, as well as some balance issues. The scan shows some healing scar tissue and irritation pressing on that center on my brain, so I have to continue to just wait it out as my brain heals. But overall, really good news!!
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Glad to hear the good news Becs. I have a followup appointment with my radiation oncologist tomorrow. Hope there will be an MRI soon to see results for my WBR.
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Great news Becs! Sending healing thoughts your way!
Mara, hope your appt goes well tomorrow and your able to get a scan soon. I know your eager to know what the results of this WBR have been. I am in same boat. Praying all this is worth it and doing what it should!
I am halfway there. 6 down, 8 to go. Have a little pressure in my ears but I only notice it at night when laying on side. Other than that, feeling ok. Tapering the steroids this week. Down to 4mg day. Pretty happy about that. I am on the memory pill and hoping it continues to do its thing.
Healing thoughts and love to all.
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Becs stable I have learned is a very desired state. Happy for you. For me to understand better when you say in the middle of the Brain, what does that mean? Middle where? Would it be possible you have something on the lumbar spine causing the numbness? Something similar happened to Dani, and she had to have Rads, of course yours could be totally different.
Niknak counting down.
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Its been quiet here so I wanted to check in on you ladies. Hope you are spending time with loved ones and having a good Holiday season.
I am on #9 WBR today. Weaning off the steroids. I hate the steroids!! I eat everything in site and am so bloated it's uncomfortable. And my face is so swollen it makes it difficult to put the mask on for radiation. Hopefully getting off them will make those things easier. 5 more treatments to go. I am getting balance issues but I think that may be steroid related. Hair is still there but my scalp is sore. Trying coconut oil in it at night.
Hope you are all holding up as well
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Nicnack counting down. You are almost there. Yep, my daughter dreaded the steroids. She was given it, but it's one thing she refuses to take unless it's gonna be extremely necessary. MRI of the Brain tom.Hoping chemo and past rads helped somwhat.
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Becs511, we loved reading your great news, and hope that you have a good week! NicNak, hang in there, more than halfway done!! Any news on how long you'll need to be on the steroids? momallthetime let us know how MRI goes. We're thinking of you all!
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NicNak, glad to hear you are almost through and that you are weaning off the steroids. You will become more exhausted at first from coming off them, possibly emotional too. That of course is temporary. Naps will help with the fatigue for sure. Bloating will subside. It took my feet a couple of weeks to be less swollen after my craniotomy.
Glad to hear you have an appetite though, that will aid your recovery if you can eat since it will also help fatigue. I lost my appetite after rads and this did not help in recovering my strength. I spent a LONG time exhausted. Your appetite will be helpful to you.
I am coming along in my own recovery. Did see my RO but he said I will not get another MRI unless I am symptomatic. He gave me two reasons, one that if there was brain progression, my Herceptin/Perjeta will be stopped. The other being that too many scans carry risks in and of themselves. I decided to let it go and free myself of scanxiety. If something shows up, then I can get checked out if there are symptoms.
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Just a heads up about the steroids, if you plan on doing any flying over the holidays, check in with your RO first. I am off all steroids, but mine always wants me to take them when flying. One 4mg pill on take off because of the change of the altitude can cause issues.
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Nicnak. Great news on doing the countdown. I have 6/10 down now myself. I totally hear you on the steroids. I haven't had to take them so far with PCI but I was on them from mid July to the end of September with chemo. I too ate everything in sight and gained 7-8 pounds Not a huge deal in the grand scheme of things but when you could stand to lose 25 you really feel it in the clothes. My friends say that they can now see that my face isn't as puffy. Being able to eat is a plus though for sure. Thankfully I kicked my chip habit, now if I could get off the Christmas cookies.
Re the coconut oil. I asked the radiologist about that or caster oil which a friend mentioned helped her with hair loss (unrelated to cancer treatment) she said that I should only use Glaxol base for now because they didn't know the density so that's all I've been using myself. Although I didn't do any research in that regard mind you.
Mara. Interesting you mention no more scans unless symptomatic. When I was reDX I asked my MO if it would have been a good it dea to get at least annual scans even though I wasn't symptomatic for 5 years and he said no as well. Said the issue was 2 fold. It could give me a false sense of security if nothing was found and maybe ignore a symptom or expose us to far too much radiation which could trigger a new cancer.
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Myleftboob, I tend to agree with you re limiting exposure to extra radiation etc. I am not too worried and know if there was something (even minor) that showed up and stayed a couple of weeks, then I would get it checked out. I prefer not to be scanned that much too. Remove some of the anxiety. My tumour did not fully hit the brain either after however long it was in there. There were no mets found either in the 4 MRI I had from dx to planning from treatment.
I am unsure if the same will hold true as far as scanning from neck down since I am on Herceptin and Perjeta. I am clean, no mets, so not sure if I will have scans if no symptoms. It seems to be a little different here in Canada as well.
Personally, I would not mind just staying on my current treatment plan and enjoying however long I can be stable. I am sure that is the same wish most of us Stage 4 people have.
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hi Mara,
I am also Her-2+, with multiple brain lesions and here in Toronto. Had Stereotactic Radiosurgery (focal) and that took care of 2 of five lesions all together and the other three are quite small and still decreasing.
My docs will continue with MRIs every three months but I assume that is because I do have lesions still visible.
I'm curious as to why a craniotomy was completed? Did you just have 1 met?
And WBR vs Stereotactic Radiosurgery?
I was given the option of WBR and Stereotactic and bc of my age, size of lesions ( ranged from 5mm - 16mm) and functional status ( independent), I chose the stereo.
Re: Steroids, I'm sorry anyone has to go through with them but know that you can get through it and it helps immensely with the fatigue but not so much for the waistline. I also had to go on Keppra, an anti seizure drug, bc I had an event that was characterized by nystagmus ( eye movements) that was most likely due to coming off the steroids too soon but possibly some type of seizure... I'm off the drug now (2 weeks) and only now regaining some of my pre-Keppra physical status. I found that drug really difficult to tolerate but the docs say I was atypical.
Anyway, I wish everyone well and good luck with treatments and hang in there!
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Jojo, I only had one met in my dura. It did not get right into my brain. Surgery got rid of most of the tumour
WBR was all that was offered as a way to prevent more. I took it and am OK with it. I was told that my BC is so aggressive, it was best to try to "immunize" the brain. Other than being bald, there are no lasting effects.
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okay, thank you Mara.
Wow, so many things to consider all the time with this disease.
Peace and healing wishes for everyone.
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Sending healing thoughts for our brain radiation friends...
Back home and the surgeon felt the melanoma removal got us clean margins and no need for extraordinary measures.
So thankful and planning to assume the best on that front. We did do a BC cell test on the tissue.
Had a series of crazy dreams last night in anticipation of surgery...water buffalo and wildebeests stealing jingle bells off the front door and an HGTV dream bathroom filled with guests as I was trying to get out the door to my appointment.
No more National Geographic Channel or HGTV the night before Medical appointments😜
Hope today is sunny wherever you are!
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lwrite, glad to hear you got clean margins. That is great news. I love that dream you had. I dream most nights myself. Sometimes really boring stuff. It entertains me though.
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Hello Ladies,
I am hoping I can get some opinions and feedback regarding my mothers current situation. She was diagnosed stage 4 two years ago when her breast cancer spread to her liver. She has been NED for over a year. We just found out last week that the cancer is now in her brain. She has 4 whole brain radiation treatments left and went to see her oncologist today for the first time since this latest news. We were told that there is nothing at all in regards to treatment that can be done after the radiaition. No more radiation, no target therapy nothing. He specializes in hematology oncology. Is this accurate information or should we get a second opinion? Thank you for your help
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I can onlyspeak for myself on this. I completed WBR in September. Unless I am symptomatic, nothing else would be done, no scan etc. Having said that, should any other met or tumour show up, we should be able to zap them.
I am aware there are chemos that cross the blood brain barrier like xeloda and Tykerb to name a couple.
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tre4,
I think the overall health of your mother matters a great deal. If she is otherwise healthy - sounds like it then there are clinical trials, targeted therapies, and chemo like Mara mentioned. What's her ER or Her 2 status? That matters a lot with brain mets. Also i see you're in RI. I am in MA and see a great neuro oncologist in MGH in boston. I would get a second Opinion. I've never ever found them to be a waste and if they say the same thing as your current onc then at least youre not left with the what ifs. Hugs to you and your mom this is tough to go through for sure I'm new to the mets world myself (sept) and it takes some time to regain your footing
Josee
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