Brain Mets Sisters
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thank you ann......109 cells is so small they would have to filter it.....thats still amazing
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Nan you wrote so nicely. Yes, some ladies in the other threads said they needed a break sometimes because it's so sad when you get attached to this wonderful group and then things don't turn out well. There is much truth to it, but I think there is so much comfort here, knowledge and warm support. Thank you for sharing your feelings.
Ann this is just a splendid write up. Thank you so much for taking the time. It's so true and informative. Can't wait to see the rest. Go rest up, put away the groceries, and we'll be waiting. I am copying and keeping it in a file.
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Mara so glad to see you are coming along, it was a tough time but you made it. Good for you.
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Thank you momall, still thinking about you and Dani also.
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Agness, my onc thinks the cancer was in my brain all along too. I remain NED below the head to this day.
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agness...I would still love to hear more if you have anything to share...thankyou
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Ok so here we go. I got the report for the Brain MRI - increase in focal right frontal dural based metastasis it doubled from 2 months ago. then there is a subajacent right frontal lobe also increased, and there is new mild edema. Pet/CT showed increase in the liver mets, and many osseous. But some stable of course.
It certainly does not look that this new trial IMMU 134 that D was on, did her any good. Much progression, and in the worst of places.
Tomorrow we have an appointment with RO, she is very conservative, I could see her saying that she would like to give a chance for the new therapy to work.
But this edema issue, how concerned should we be? Also the fact that the Dural is almost touching the Brain, do you think we have time to still wait and see, or ask RO to radiate.
I'd love to hear from you.
Susanf what's going on? Haven't heard from you in a while.
Thx everyone.
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Momatt, sorry to hear of Dan's progression. The brain edema can be controlled with dexamethasone see what the radiation oncologist says about radiation. If there is a suggestion to radiate a particular spot, I would seriously consider it if there been an increase in size. If the radiation oncologist does not want to do radiation, ask what the merits are and what drugs would be used instead. I am sure that you probably already know all the right questions since you've been dealing with this for such a long time good luck and as always you and Dani are in my thoughts.
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Mara - thanks . I am actually trying very hard to get opinions from wonderful people as yourself, and some very knowledgeable people in the other threads. The edema worries me. Dani is totally against Dex, so it will be a job to convince her to take it. the truth is she just about bones, and any swelling will show on her, she dreads this. In Google on viable sites it said something about antibiotics, but I think that's not when it comes from mets. Why is the edema there? That's also a question no? Hmm we'll see, I do know from the past, RO does not like to radiate unless deemed very necessary, I just don't want to miss the window before there is no protection on the brain.
Will let you know, thanks so much.
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mom all....could it be that the edema is caused by the necrosis from rad?.....it sounded like thats what they suspected with me but no one really knew....that spot was also in my rt frontal lobe and it got so large in just 2 months .....tumor grew to golf ball and the edema around it the sizze of a orange....they tried iv dexa but i ended in surgery to relieve the pressure anyway.........im at such a lose at understanding all this and how all that black just grew and spread so fast...im not even sure what that stuff even is.....so i need alot of info on this...i think i dont want to know but when something just gets you by surprise it is such a helpless feeling....always interested in anything you discover......thanks
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Momatt, I definitely think they will need to address the edema. Even if it involves the outside layer (dural), it can cause other problems for Dani. My tumour was on the dural layer, had not reached the brain fully but the edema caused fatigue, nausea, balance issues and the pressure made me unable to walk or talk properly. These problems became more and more frequent and eventually would have thrown me into a coma. They will definitely take care of her and let her know what she needs.
In my case, they put me on steroids before surgery and a couple of weeks after my craniotomy. The steroids did the trick and I could function normally. The radiation was a different story. I am sure they will see if necrosis is causing any issues too. Good luck.
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So she's getting rads to the area and a bump in the back of the head- I have to get the technical term- due to already many rads to the area- it will take like an hr bcs they gotta work around those areas. They gonna push her into the schedule I'm glad she's having it done. S
And all other lesions in the liver etc MO still working on it bcs she was on so much stuff already and nothing is working.
Thanks for being there
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Momall,
So sorry for all Dani and your family are going through. Prayers and hugs!
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Hugs Momall. I too have been thinking about you and Dani, you both have been through the ringer. Hope things will quiet down soon for you. I am also sorry to here all of the drugs she has endured trying to help her liver.
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thinking of you and Dani. Hope the radiation helps
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Thank you so much, Kaption Mara Leftfootforward - you know as soon as I know something is up, my thoughts are I gotta share with my friends. I find so much comfort here. So NP called and said it will be 3 days 1 hr each, so they could do it in lower dosage, as opposed to one sitting. The schedule is yucky, it's when she has to be home for the girls, but beggars can't be choosers, they are pushing her in, and that particular machine that could do the back part(near an artery) and the frontal they only have one, so we are like, yep she's taking it.
New treatment - Enzulatamide and Herceptin. Tomorrow hopefully Onco will actually talk on the phone, this was just an email, with few words, saying she'll finalize it tom. Let's hope. What else?
Will keep you posted, take good care.
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hi friends....so im now 3 weeks out from my crazy emergecy surgery on my brain...i realize all spots are different and will heal differently but i feel more my normal self and my family says not so much....any one else have this happen?...should i be doing some type of brain exercises?....i know i can get new spots to fire up, just in my mind im not seeing a problem....my family says im not the same....makes me sad....what should i do to move to more normal (normal for me is still very odd lol but thats art for you and im not going "all the way" normal cuz that would just steal my creativity) my normal...oh my , this is so hard....thanks for being there and letting me vent.....arrrgh
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Nan,
I really know nothing about brain mets as I only joined this club a couple of months ago and I don't even know exactly what I have.
But, it seems you would benefit from a neurologica oncologist.
Also, I would think tapping into your artistic talents would be good for your brain. Then, the usual sugggestions of reading, writing, word puzzles and jigsaw puzzles.
Best wishes!
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Nan first your family should explain to you exactly what they mean so you could make sense of it. What do you mean not normal? You don't respond fast enough? You don't laugh at their jokes? You are not feeling something you should? And just as friendly advise, a return visit to Surgeon to ascertain how you are feeling etc...it could be perfectly ok to be where you are at, at this time, and with time things will settle.
Also I fully agree with Kaption, no matter what it's good to have a neurologist oncologist on board to follow you.
Listen, you posted, so you are not so off
Feel better soon.
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thanks kap and momatt....i think maybe im expecting to much from myself....most of the time you need at least 6 weeks to recover from even a routine surgery and i got disappointed after only 3 weeks...what is it about this disease that i expect results right away......just get it over with and gone i guess....thanks so much for listening
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Nan, my neuro onc recommended puzzles - jigsaw, crossword, word search, etc - to aide in my recovery after my craniotomy. I had a little bit of the opposite experience in that my family thought I was just fine and dandy but I felt off and like I was struggling during my recovery period. Looking back, it was probably a full 12 weeks before I felt "normal." I still struggle from time to time with memory and/or word recall, but those times are fewer and farther between. Go easy on yourself.
Mom, so sorry to hear of Dani's continued struggles. You remain in my prayers.
Much love to all of you.
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Nan, I agree with Goodie and the others. My short term memory is shot too BUT I actually find multitasking helps keep my brain forcused. It was hard at first, I would pick a TV show I did not care about and would watch it and surf online to make myself pay attention to both. At first, I could not retain anything about the plot on the TV show but eventually, I would retain the show and carry on a conversation. This took me MONTHS to accomplish. At this stage, I feel pretty much normal except if I put something somewhere it does not belong. I will then have a hard time remembering that. Names, location of car in parking etc are finally all normal. My exercise has also sped that along, spurred my appetite and reduced fatigue which will impact our brains too.
Give yourself time, it will come. All the other suggestions from Goodie and the others are great things to do as well.
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thank you mara and goodie for your encouraging words....reading was one of my favorite things i miss, gamma took that for few months but i got it back so i expect this may take longer but im sure i will eventually get back to my stacks of books....after my dx i started needle felting and yesterday i suprised myself with what i made...if i can figure it out i will post a pic...at least my creativity is on the mend...thanks for letting me know all these things get better...keep shining bright....i had my first pet scan yesterday, i wonder why they never bothered with one before?
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Very cute, Nan. You are quite talented.
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WOWOW, just to thread a line to the needle to try to sew a button takes me forever...very interesting! Thanks for sharing.
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How is everyone??
There was much talk from wonderful ladies in these threads we should look into NIH clinical trials for some future time., Dani kinda exhausted all regular treatments, nothing sticks with her, she is quite upset. She is having rads this week to the frontal lobe and the cerebellar with everything progressing. She is starting supposedly, when docs office and Ins gets it together, Xtandi with Herceptin. This back and forth bureaucracy is going a whole week.
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Sorry Dani is going through so many treatments. I hope rads can be helpful and that the xtandi and Herceptin are gentle on her. I also help your bureaucracy issues are settled soon. You both need a break.
I am feeling quite well. Joined an inexpensive gym. Addicted to the treadmill and rowing machine. I see the exercise much like chemo infusions. They are part of giving me good qol for as long as possible.
Hope the others are doing well also. Love the pictures Nan, I envy people able to do crafts like that.
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Mara thanks so much. The level of incompetence is just beyond. I hate when she has to have THIS in mind all the time. We work so hard for her to be distracted with other things in her life, and then this idiocracy hapens.
Looking forward for a pleasant barbque on Sunday, you know what they say, if you give them food they will come
Hope it will work out that she will feel well enough. 0
