Brain Mets Sisters
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Awesome to hear MLB. Sometimes they are just what the doctor ordered.
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Many my deepest sympathies. Beyond words. I remember when you first told us. It's insane. Enormous hugs, you were so loving and caring. You tried so hard. She was a lucky gal to have you.
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Wow this has been difficult. Such wonderful people. Lives. It's just crazy.
Rcg how are you doing? How are you coming along.
D started the Rads to T1/T2 and the plate in between. Now Onco told her to stay off Xeloda. And of course the other tx she was on is a no go. So she is off therapy for 2 weeks. And Onco was saying she cannot be off therapy to do surgery because she needs to have Chemo. Word is that she might want to change something. Def not happy about that.
Mri of the Brain tonight as a follow up. With tom being a Holiday, I wonder when they will have the results.
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Mom, I think I answered your question in the Xeloda thread as to how I'm coming along. I see the onc tomorrow and will hopefully learn what's next.
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Hi beautiful ladies, just an update on my Mom, well she already has 8 of 14 HBR and she is so much slower than before, I'm so worried for her, she is on 6 mg Dex and she has so much dizziness, much more than before, her balance is also so much worst, I don't know if she ever recovers and can walk like normal again. Please someone tell me why she's so dizzy? Doesn't it suppose to get better with radiation? Susan reffered me A Chinese herbalist that we will see in A week, thank u Susan, I hope he can help us, I bought some Frankincene oil and I want to rub it on her body and give her A drop in her mouth, I heard it is good for brain cancer, it kills the cancer and reduce the swelling, any one had it before? Please let me know.
God bless U all
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It should get better BUT if it is not, tell her rad oncologist. Radiation can cause swelling to the brain just like mets and she may need more steroids. Being weak and fatigued IS normal however. She will be fairly exhausted but it should not mean she is overly dizzy. Extra fluids and protein are a good idea as well.
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Mara thank you so much, I will ask her Dr, I will update in A few days.
Lilon
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Well, I've been lurking a bit here- not really wanting to admit I'm part of this club too now.
I know a few of your names from other boards. Quick summary- stage 0 bc in 2005 and 2012. MBC dx in 2013. All bone so far. Pain and se is mostly what I've dealt with. Limited what I wanted to do in retirement, but have been happy to do most of what I want.
Last November ( the night before the election) my right temple, cheek, and chin went numb. We were spending the month in FL. So, ER there, home with an MRI early December- nothing bad showed up. First theory was skull met near trigeminal nerve. Started getting a few dizzy spells. ( now on Xeloda since February 1)
Second MRI a week ago shows tiny lesion on temple, near right eye in the brain lining. Not good news. We're beyond the bone. Treatment plan set yesterday ( 2 weeks of strong Xeloda then rads)
I see how well you all have handled your dx and treatment. Here I sit, in the middle of the night, trying to wrap my emotions around this step. I'm awake with nerves- but also severe foot and leg cramps- I think from the steroid I'm on temporarily.
On we go. I have a great support group of family and friends. But, I hate how sad it makes them when I'm struggling.
I'll look to you all for strength and information too. This is tough stuff!
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Oh Kaption, so sorry you are here. I remember how scared I was hearing about my brain met. Keep us posted on treatment plans and know we are all here. Let me know if you have any questions.
The brain stuff can be scary but like BC in general, treatments are better. We last longer.
Hope the steroids keep symptoms at bay.
I also recommend brainmetsbc.org as well as a good site for info. Hugs, quite a few of us are still here.
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Thank you, Mara. I will check out the other site too.
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Hi Lilon,
I hope your mom is getting some relief... dizziness and off balance should be addressed with Doc.. I was on 2MG dex then upped to 4mg bc of similar symptoms, after only 5wbr. I am weaning now And starting to feel better.
Last summer I was admitted with basically similar symptoms and brain swelling..as soon as they got a big dose of steroids in.. I was walking upright again.. but then you still have to get off them.
Hi Kaption,
I'm sorry you are lurking too, now... but even with my Leptomeningeal disease I have found that there are some hopeful treatments... but I gotta say I certainly went through the grieving process all over again.. emotionally angry, sad, negotiations, and just starting to be able to feel a litttle normal again.. it's tough but we are all in this together and although I don't respond a lot I hear you and am thinking of you.
Mara,
I'm so grateful for your responses to people here and to you for talking to me as well... i'v been a little out of commission and only focusing on getting my steps in with my dog in my back yard while recuperating in the snow up here in Sudbury. Thank you, thank you, thank you for keeping the threads going.
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JoJo, sorry you're dealing with snow up there. Unless you like it, that is. Strange weather for us, 16 celsius tomorrow then minus 3 Thursday. Has been a rollercoaster here in London. Glad to be of help.
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I absolutely love the snow! I have always made trails for my dogs in the winter... with tunnels and snow forts..not so much since living in Toronto but with healing time in Sudbury I am totally in my element!
Goodnight,
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Hi JoJo and everyone, my mom had number 11 of 14 radiation, yesterday was the worst day because in the afternoon she was so tired and weak that she couldn't walk, she is getting slower each day and her balance and waking is much worst than before, the radiologist increased her Dex from 4 mg to 8 mg but no change, her white blood cell was 14 yesterday, elevated, and the nurse said its from the Dex, anyone had this problem? Last night all I did was crying because when I see her like this it is so heart braking, her voice is so low that she has to say everything twice so I can hear it, I don't know honestly what is going to happen, is this going to get worst or better, I red that after one month they will be tired but my mom is already so out of energy and slow. Next Monday they will start her chemo abraxane again and then God help her, so scared. Ahhhh
God bless Lilon
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I'm sorry Lilon,
It's very hard to watch our loved ones be so sick.. I hope the balance and such gets better soon.. upping the Dex should help that.. but sounds like maybe she's fighting an infection too?
Keep pressing the docs.. if this seems like too much on her you are encouraged to get more answers from your Doc..
Really explain her symptoms.. put them in paper and ask what you should be expecting?
Good luck dear and big hug for your mom and family.
Jojo
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Thank you JoJo. My mood so far has been a bit of denial I think. My RO feels he has a good tool for the know met. My MO is getting aggressive with chemo. But, I am scared!
It's good to have this resource.
Lilong, so sorry for you and your mother are going through. So hard to feel helpless. Hoping for brighter future days.
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thank you JoJo and Kaption, I think the younger you are the recovery is much faster, in my moms age 76 it is too hard on her, hope for better days for all of us.
Lilon
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Lilon, what more can i say. I am sorry you and your mom and family are going through this. WBR is a tough regimen but it can improve symptoms. Do not be shy about asking for a longer weaning schedule when it comes to her steroids being reduced after WBR. She will be massively tired for a while, this is NORMAL. She should not be so weak she cannot walk (unless she presented with mobility issues) and should not be super dizzy. She may have ringing ears and ear aches from the dry wax, that is about it. Ask her onc whether she could postpone her chemo by a week or two if she is still excessively weak. Good luck with every thing.
Kaption, I don't blame you for being scared, brain mets are scary. I want to say again that treatment is much better than it used to be. The other thing to be glad for is that it appears the met is not affecting your walking, talking etc. If they can just zap the met, it has a better chance of resolving with less downtime and complication. I hope this is what your RO is able to do for you. good luck. I am rooting for you.
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Mara thank you for all your advice, she looked and felt better today, she is still slow but better than last couple of days, the rad dr told us today to reduce the 8 mg Dex to 6 mg, I hope this don't make her weaker again, she lost 4 pounds from last week , she eats but she still lost 4 pounds, I don't know why. I hope God help her and all of you that are here.
Lilon
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Thank you, Mara! RO seemed confident in his part. Need to get 2 weeks of Xeloda in me- then go for it!
Thanks!
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Kaption what can I say, warm and fuzzy hugs your way. it's really hard. Good that you are getting the Rads asap. My daughter, they dragged it and dragged it. She has too many lesions, but seriously, they were concerned about her hair loss, don't ask. You will feel much better when it's done. Are you having SBRT? What kind of Rads do you know already, how many? You were not ready for this, that's for sure. D has MRI done about every 6 weeks.
Also the Xeloda, so it's 14 on and 7 off? Yeah it could be a bit harsh more on the HFS, funny that from learning about your 7 on 7 off, we spoke to Onco, and she just changed for this protocol. Take good care,
Lilon it's beyond words to see the people we love struggling, at least you are there with her. Hope she gets better soon.
Dani just had a new MRI also, most lesions are all stable, but she got one coming up that was not there before, so it's weird how these mets are, and being that she had this mass impending in a disk and just radiated that, Onco wants her to have a PET/CT sooner than later. I am all for scans, just wanted to give treatment more time. It's only 6 wks since the last one. We'll see next week.
Everyone hope you are coming along,
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Oh momatt, sounds like dealing with these mets is like whackamole, they just keep coming up. I hope you and Dani get a break soon. Glad the rest of her lesions were stable. Good luck on the next scan.
I am still hanging in. Nothing new with the brain, last scan shows still NED from neck down. I feel lucky for that. Hope it can last. No lasting SE from the radiation other than my ears will ring every once in a while. I find taking a deep breath, holding a couple seconds and blowing it out over a few seconds stops that dead in its tracks. Memory is not wonderful but I did chemo so long, I can just as easily blame chemo brain. Still in treatment anyway. Herceptin/Perjeta do not appear to have any real SE for me other than a bit of a runny nose. I have avoided the other nasty SE common with those drugs (diarrhea) thank goodness. I am just hoping to remain this way as long as possible since my QOL has improved and have been able to become more physically active.
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Mara so happy for you, you went through plenty. Glad that this combo is working. Now, you are helping so many people.
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Mara, you give me hope!
Momall, you asked some questions on the other board about type of brain met. This has all happened so quickly that I'm a little short on specifics. I've had many conversations with my MO. RO knows the most about the actual scan. (He was unhappy with the vagueness of the MRI report after he actually saw the scan). Anyway, all I know is they saw one tiny lesion on the right temple near the eye. I'll have ten rads to that one spot. RO said " we have a really good tool for this met".
So, big surge of X, then 10 rads. Anxious to be off steroid, but MO wants me taking one at least every other day to keep away swelling.
Hope everyone has some smiles and love today!
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Kaption there is hope for sure. Oh, these reports cannot be relied on, period! They'll get that zapped and you will be yourself.
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Kaption, glad to hear they can just zap it for you. Recovery should be a LOT easier than what I had with the whole brain stuff as well. Good luck.
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Hi, just updating on my Mom, she finished wbr last Friday, they wanted to start her chemo this Monday but they postponed it one more week, her bun was elevated, I don't know if it is from the Dex or not, she is so weak and walks with A walker A little bit and want to rest all day. . After the wbr my mom is so confused and she forgets so many stuff and also her pills, I'm so worried for her, this is Not living, I hope she gets better, is there any hope? She also takes Nemanda pills for the memory.
God bless you
Lilon
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Lilon, it is normal to be exhausted after WBR. I was in bed more than half the day right after. It took me MONTHS to feel anywhere close to my previous energy level. I also understand your mom is on chemo which is tiring. I hope your mom gets better too. Allow her to rest but do try to see if she can walk with the walker a bit each day to try and build her strength. Memory issues were a problem for me for a couple of months after the WBR. Short term memory did suffer a LOT. It is improving for me and I don't take Namenda myself.
I wish I could tell you it was a quicker recovery, but as I said, rest and walking a bit each day will build her up. If she is eating, that is good, focus on protein to help give her energy. Her brain still has radiation working on it for a few months so the protein can help keep her energy up as she heals. Good luck with everything. I also fully believe in hope. Hope for the best and take one day at a time. I am sure you have been doing this all along.
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Mara thank u so much for the reply, I'm so glad I have your support in this forum, I hope she gets better.
God bless all of you
Lilon
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Lilon you are a wonderful daughter. Hang in there. It's scary to see this, but Mara is a treasure of info, and she herself went through all this, so she has the experience. Keep an eye out for symptoms, and something really crazy, but you could do it. Also, it worked for me to write things down like a diary, you could do just bullets, so you could keep track everyday, it's easier to tell doc when you have facts in front of you, and also if someone is there when you are not, there is a thread.
Re;meds, I don't know what she takes, but it would be helpful to put it all in a pill box, if you don't do this yet, first you will be able to see if she is not taking something, and maybe you could put it in every week so there are no mistakes. I did that for my MOM she was over 90 when she finally allowed me to do this for her. I finally told her, it's crazy how so many pils have the same color and look the same, I bought nice color pill boxes for day and night, or you have the one for 4 or 4 times a day, whatever her protocol, just a suggestion of making life a bit easier.
Take good care of yourself,
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