Brain Mets Sisters
Comments
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There was a girl in my center who was loudly discussing her experiences in driving to Oregon to obtain the marijuana. She said she had been caught several times, either during the trip or using in our state. The last time, she was in jail for TWO years. She was happy about that because the state had to pay for all her treatments while she was incarcerated. I don't know what stage she is or if she was using before diagnosis. Probably there is a lot more to the story. I just found it interesting.
I would love to be able to partake and find some relief. (I remember the late 60's fondly.) not worth the risk in this state.0 -
Hey ladies, how do you guys manage the feeling of queasiness from the steroids?
in my first go, i had 8 rounds of the ACT, which was brutal. then surgery, then rads. then she enrolled me in a clinical trial to try out PARP, some new exciting drug supposed to prevent the TN from growing back so i had to do 3 more rounds of cisplatin, then 6 month of that study drug, which obviously didnt work.
it is miserable for me to just get through each moment. i could not sleep last night bc my stomach felt like a hole. super queasy, i assume from the steroids. i frickin hate the steroids. today i have brain rads #5.
so my new shitty life: i wake up and shove a prilosec in my mouth immediately bc its supposed to help w the stomach prob from the decadron. then about and hour later, i force myself to eat some toast just so i can take the decadron and advil. then i battle throughout the day and night bw feeling queasy and nauseaus. like i have to eat something bc my stomach feels literally like a hole in pain, then when i do, i fight to keep it down. anyone else struggling with this?
i begged to see if i could reduce my steroids, i was originally told to take 16mg per day, but now she has me at 4mg. but they said i have to keep taking them until the WBR is completed.
halp
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Hi Stark. You sound miserable. Talk to your doctors. There are many different roads for side effects. You are in the middle of the most difficult treatment. I will never forget it. See if you can get a diffferent anti nausea drug, and maybe a script for Adivan or Xanax. There must be something to help you get thru this. You break my heart right now. I promise it will get better. Hugs. Jodi
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Spark, do they know you take advil? my experience as a nurse says uh oh steroid + NSAIDS = gastritis
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I have taken advil, since the beginning. I have never had gastritis. I am not nurse, but I love my advil for headaches. Always have. They give it to me in infusion (chemo) center?
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Hey, whoa,
I'm not qualified to advise, but I hope she will ask about it. I adore NSAIDS. I sneak 'em even tho, on Coumadin, you shouldn't. Smack my hand!
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K lo, this is all a guess for me. Asking the professionals is where the best advice is. Not With me. I am a cheerleader, definitely not a coach!! Hope youre doing well!! Hugs
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Just found out today I have brain mets! Move over ladies and let me have a seat! See radiation doc in the morning and started the lovely blue pill tonight!
I'm 54!
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Hi Kathy. Wish you didn't join our club, but this a good place if you have to be here. Come here anytime with questions and concerns. It is a place of wisdom and courage. Hugs. It figures you would be young. Dammit.
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actually, yes the onc told me to stop taking the advil... she said it can upset my stomach more.. she told me to up the prilosec. all to support the steroids so my brain doesn't explode from the rads, i guess.
i asked the rad onc today if its possible for the rads to get rid of ALL the cancer in my brain and in my back bone area, and she said that its "possible", but that's not her goal. It's to make it all manageable.
am slipping on any hope here.
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Manageable is ok. People manage their health alll the time. One day at a time. That is all ANYONE has. You have 4 more days of radiation ( I think) Hang in there. It is going to be ok.
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omg, jodimomoffo
am miserable. what did you do about your brain mets? have any of you guys been told that the rads got rid of it all? am i even going to get some time, real time , of feeling like myself before things get worse?
am so sorry that i am such the debbie downer here.
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Spark, I was diagnosed at stage 4, mets to my liver and then my spleen it 2011. I was tolerating chemos like candy. February, of this year, I woke up and saw 2 of my husband. I mentioned this to my chemo nurse and the next thing I know, there is no chemo, mri of the noggin whole brain radiation, March 1. I have never been that sick before. I was down for 4 months. My speech was jacked. I slurred, cried and cackled at times, like a hyena. My right leg and hand are all but useless. It is almost as though I had a stroke. Speech is way better. I woudn't speak on the phone unless I was texted. Our daughter (the baby) was in her senior year of high school. Her functions were the only things I went to. It got way better after the steroids. I am a skinny girl, but eating was the only thing I enjoyed??? I was up to 140 lbs, when I started out at 119. I 'm now 126. My doctor and I have agreed to leave my head alone until there are new symptems. I am not looking for trouble and so far so good. I hope the WBR did the trick. I cannot predict when and where they come back. My doc thinks 2 years is my life expectancy. It sucks. I am only 51 years old, been happily married for alomst 30 years, have 4 delightful children, and a granddaughter I cannot get enough of. I do not want to leave this life, and I don't intend on it. I am living a new normal, but I will take it.
I have been to weddings, our coast house, the movies, lunch and Maui since. Our 9 year old granddaughter is here for 2 weeks with her best friend, and our 2nd son is gettting ready for a chief's interview for our city fire department. What I am saying, is it's only as scary as we let it be. Take it easy during this time. It will test you for sure. Treat your side effects, even the mental ones, and don't be scared. We are alive. Live. Live. Live.
Make plans for when you feel better. Please don't give up. Do you have a support system? Stay with us. It aint over. Gentle hugs. Jodi
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Spark,
We have pretty much the same diagnosis. I had 20+ brain mets when starting WBR - it got rid of all of them. I'm not talking forever - we know they will probably recur - but I had a very good response to the WBR, despite its various side effects. Responses vary according to how resistant the mets are, so it is a bit of a DNA lottery as to how far the WBR succeeds but it does have an effect on the brain mets, just a variable one. Please try not to worry as the WBR is painless and only takes a few minutes each session. If you want to, you can send a private message with any questions you have - I will be glad to answer them if I can.
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Jodi, u sound like a power force. How long did it take for u to feel like yourself after the wbr?
What happens to the rest of the cancer in ur body? I worry about the cancer they also found in my chest lymph nodes while i get the WBR and rads for my back. I can't believe Jodi u were even told a couple years... That sounds like a lot to me when they told me a few months. Hard to focus on living and dying at the same time. So right now, u are actually not getting any treatment and feeling ok?
Banjo, same questions for u.... Are u done w treatments? Are u feeling ok and just living normal?0 -
Hi Spark, I am always on a chemo therapy. Nothing that cures me, but something that keeps these f@234kers form traveling and getting bigger. I usually change chemo drugs every 3 to 6 months. Because, I cannot live forever feeling bad, I have opted for the more mellow drugs. I have never felt nausea and just general demise since radiation. I have told my doctor what my wishes are, given the situatation. I want to live as well as I can, while I can. I have always kept it lit. Not stopping now. Just slowing down. Dammit. Good Morning Sunshine!!!! Hope things are better.
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I have brain and lung mets. Recent MRI shows that one of the three tumors in my brain has almost doubled in size within a month. Neurosurgeon said it could be necrosis but my CA15-3 went from 60 to 81 within a month so I'm leaning towards progression. He scheduled a SPECT MRI which I will have on Monday. It will give him a better idea of what we are dealing with. Either way, it will not be good. I have been dealing with cancer for the last 11 years (last 3 have been Stage IV). I feel that I may be close to ending my journey. (I have had brain mets for the last 10 months). I am just really scared since the brain is your Central Nervous System. I had two friends die from brain mets. They both went blind. I'm so scared of going blind or becoming paralyzed. I try not to think about it but its so hard. It's been a long journey and overall I've handled it well. I feel that this is a whole new ball game now. It's very scary. I just need to vent a little. Thanks for listening.
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11 years is a long time. I want that!!!! Best of luck with your scans. Hugs Jodi.
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Spark,
I'm feeling well at the moment - long may it last! Like you, I'm triple negative, so there are fewer treatment options than for those women who have positives. However, although my first chemo was an aggressive infusion course which was horrible, I am now on Xeloda and feeling pretty much my old self (well, not really, but more my old self than the sick feeble nauseous sofa slug I was on the other treatment). I hope it's working, I hope I can stay on it for a very long time because, apart from not being able to go back to work (I was a librarian and my spine mets mean that I physically shouldn't be reaching, bending, carrying heavy stuff, etc) my life is pretty normal. I have a spine MRI coming up in August to see what is happening there (I've been having bone infusions to strengthen and protect the spine from further damage). The last brain scan I had said all was clear - the WBR had done its job - they probably won't do another here in Germany until I show suspicious symptoms. Hope that answers your questions - the big thing to accept is that I will always be on some form of chemo for as long as I live. If I can live, I can accept that.
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Bit of a swift hair question. Heard the radio can irritate. Best to lop it off before I start? Or close crop? Or leave til it starts to fall out in my dinner?
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Alesta- I would wait. It wasn't until after I was finished that it started to fall out. It's a gradual shedding not like when I lost it on chemo. At least that was my experience!!!!!
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In your dinner sounds appetizing, but I would ask how much is going where. I am just getting mine back. Looking a little less like Dr Phil, everyday. Hey, how are the Olympics coming?
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How long has it been since you guys have finished WBR? and you are feeling ok? and surviving? now they told me today, they are going to add a field to my chin bc it is numb. now i am extended even more days. i just cried as they drew on my chin making me look like a marionnette.
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Finished in November last year.
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Well I got the lovely mask fitting yesterday and my first WBR of 15 to 18! Im on 12mg of roids and expierenced the thrill of tears and rage ( oh how I hate roids) I went to bed at 9:00 but woke up at 12:30 with my face hurting and could barely open my eyes. I got up and looked and my face and neck were sunburned, I'm guessing from the steroids? Anyway I took a hydrocodone and went back to bed with no luck. Decided to go to living room and tried ice pack with no relief so I put aloe vera on and laid down under fan. That seemed to do the trick and I was able to sleep.
I also made the decision yesterday it was time to quit working and went by HR and completed HMLA papers, this will give me 12 weeks to think about just going on permanent leave. I want to take this time during treatment to not worry about going to work, I can't even drive myself there so it was a no-brainer (no pun intended..hehe!) decision!
I hope I can make it through this grueling time and they blast them SOB's to smithereens!
Good luck to us all!
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yeah.. wait a bit Alesta.. you'll know soon enough if you need to shave it off.
i gotta dog.. the smartest dog in the world. You would now believe what i was able to teach him in one day. It's funny, i wanted a dog to follow me everywhere so i trained him with treats. he followed my every move. every step. i had to untrain him. he's stocky, and super loving and kind of looks like the moviestar Van Diesel. his features kind of melt into his face because he is pretty dark.
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We haven't heard from Rohm in awhile. How are you managing the chemo? Has anyone heard from her? Spark, hang in there! Cathy, it sounds like your leave of absence will make your day-to-day more do-able, though we are sure you'll miss the routine. So many motivating, strong, amazing women here!
In admiration of all your strengths,
Your Mods
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I checked Rohm's blog and she is not doing well. She entered hospice last week. Hate this disease
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How about we all send her some posts, private messages, etc. We had a feeling....
We hate this disease too!
The Mods
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Apple, I love your dog from here. I don't know what I would do without mine. Cathy, you sound fabulous and ready to go. It is daunting, but it works. The radiation will give you sunburn like symptoms. The radiologist will have something to treat that with. I love the visual of blowing them to smithereens. I am picturing it now. Spark, finished WBR March 14th, this year. Million times better than I was. You will be too. I think we would all agree, Radiation sucks. But we did get through it. We are here for you!!!! Hugs Jodi
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