Brain Mets Sisters
Comments
-
MCTHO - just finishing my WBR on Monday - hope my results down the line echo yours! So happy for you...
Barbara
0 -
Survivor2Be,
Just finished WBR - no real problems, though recognise there could be over the next few weeks/months. It was not a difficult treatment, quick and painless - just needs commitment to get to those daily appointments but tick them off and they will go. If you want details, send me a PM,
Good luck,
Barbara
0 -
MCTHO - That is fantastic news - exactly what I want to hear as I am about to start me WBR on Tuesday! I will hold that thought with me as I begin to be frazzled! We all need hope! and the belief that the treatment will work. You must be delighted (I guess that is an understatement!)
K-LO - I have no personal experience of eye mets, yet know 2 people who do! They were both treated successfully and on follow up scans all has stayed clear. I am in the UK, they were both treated at a specialist eye hospital in Liverpool. One was a secondary of Breast Cancer and the other a lung secondary. They were both treated with radiotherapy to the eye. I am seeing one of these friends this week, so will ask her what the treatment entails, I will PM you the details.
Take care all and thank you for the Pms I have been sent! your experiences and messages of encouragement are so important to me!
0 -
Glad to see this thread, and happy for everyone who has had success.
But I am finding it very hard to retain any hope for myself.
Did wbr in March this year for inoperable tumors, one in left temporal lobe, one in the right occipital. Recovery was not easy for me, 2 month MRI looked good but then in early October a brain mri confirmed what a neck ct had suggested- the wbr did not work- quite spectacularly. "Innumerable areas of small foci..." it is also in my cerebellum, brain stem... my brain, neck lymph nodes and abdominal lymph nodes are lighting up like it's Christmas eve. (Liver's still good, ha, ha.)
So, radiation appears not to be an option. I am her2 negative, so there goes another tx option. I am er+/pr- have tried all the ai's, faslodex, tamoxifen, but none have done anything more than slow the progression for a few months. Nearly all of the research studies are limited to those who are her2+ or TN. And most of the people posting here who've had success seem to be her2+.
My onc presented my case at the tumor board, recommendation CMF every 3 weeks. Had to stop xeloda year before last- although it worked, I had terrible neuropathy in my feet. (xeloda is the pill form of the "F" in cmf) Was told the neuropathy is dose cummulative... it did go away after stopping xeloda, but after 2 tx of cmf my feet are sensitive, and red after walking my dog around the block.
If the cmf doesn't work, it sounds like a high does methotrexate infusion which requires a 2-3 day stay in the hospital.
Even if the cmf works (fingers crossed!) I wonder if I will be able to tolerate it, for how long, and at what price to my qol. I am not afraid of dying, I just don't want to spend the end of my life dependent on others for everything and suffering se's for a lost cause.
Dxed stage 4 from the start June 2009 with highly aggressive pleomorphic lbc with liver mets, I have never found a tx that really worked but kept hold of the stubborn hope I will make it long enough for at least some effective tx to come along. Maybe I will be lucky, maybe I won't. I don't know.
Lynne
0 -
hi Lynne
I know exactly how you feel! I have just started to get my head around having brain mets and for now have to believe they will cure mine. However I identify entirely with feeling things slipping away! I have never had any stability since having secondaries, every treatment, even xeloda has failed and allowed progression. No scan has ever been reported to me without me leaving the hospital in a hysterical state with a feeling of helplessness and doom! I too am HER neg and er +, infact the oncologist was surprised as he said I was lower risk! but I guess that this is such a shit and sneaky disease and there are no guarantees. Fingers crossed that CMF is the drug for you! Take care and stay strong x<3
Another question for those of you having experienced WBR, do they do your face aswell? Do the eyebrows and eyelashes go too!
0 -
Ty, Jint
0 -
Jintski, thank you for your kind words and thoughts. I have my fingers crossed for you, too.
I had some facial swelling from the steroids (I took dexamethasone) which I think were dose related, not too bad though, and only taken during rads. Seems the swelling went down quickly.
I did get to keep my eyelashes and brows
0 -
Redskies & Jintski:
<<<<<<<HUGS>>>>>>>>>
It is hard to wrap our brains around how different each of us present with this stupid disease of breast cancer. Of how and why it hits certain places and people. I pray you recieve the support and encouragement you need from you family, friends and medical team to carry you through this journey. As my friends have encouraged me: FIGHT LIKE A GIRL!
Also, my mantra I have adopted is to "Fight Like a Honey Badger!" A honey badger is a small little animal in Africa that is considered the most fearless animal. It doesn't take crap from anything: a poisionous king cobra, a honey bee nest, a lion. If it wants something, it just goes and takes it - no holds bared! Look it up on youtube - it is my mascot in my fight against this BC beast!
0 -
Love the honey badger, thank you!
Barbara
0 -
Good Morning Ladies-
I like the honey badger too:)
I too am taking Dexomethasone=facial swelling but it helps w/brain px:)
Lynne-my heart goes out to you. I'm still new to brain mets & I guess I try to ingnore how bad it may be. I think that not thinking how bad it may be is easier for me. I still have 2 more brain Chemo (via spine) out of 8 to finish then to Herceptin (via spine) then a repeat MRI. I'm in BIG hope that what they are doing is working. If in the end it isn't. I don't know what I'd do in your shoes (or others in that stage now). For now I guess I'll hold on to hope.
I hope this week goes well for everyone. As time goes on it gets a bit more scary as reality settles in more. I'll continue to draw from all of you & your strength.
-Malinda xx0 -
Hi Ladies, thank you for all of your messages of support!
Well it has finally happened.....I have left the hospital with good news!!! :0)
The cancer in my liver and lung nodes has decreased...so the xeloda is working! Can't express how pleased I am about that! I had given up hope as I wasn't having any SEs at all! So I don't need a more aggressive chemo yet! The oncologist agreed with what the other one said, with the xeloda could have been having an effect on the brain, as it was first noticeable in February, but I haven't got a previous scan to compare with, and he would have gone with WBR to accompany chemo anyway!
I had the planning...having the mask made was a bit claustraphobic, when you are then bolted to the bed and can't move, I got a little stressed, but managed to hold it together! The actual zapping was oK and you had to keep the mask on for a shorter period of time, which was a relief. I feel Ok, but my scalp is a little tingly! I mentioned my fear of steroid bloating and was told to take only one tablet, the minimum dose and increase it if I have a bad headache and stop them if my head feel OK. And fantastic news they haven't blasted my face, so I don't lose my eyebrows and eyelashes, how good is that - I could look almost normal in my wig!0 -
jintski:Happy Dancing for you here. Glad for the good news & I hope all continues to look good! Thanks for sharing w/us. I bet you'll look beautiful in your wig:) Besides, real hair is overrated:)
Today my hair is now shorter to a buzz. Next will be bald:o For those of you already there kudos to you. I broke down a bit, then regrouped it's not easy losing your hair but I know many of you already have so I'll try to be strong like you:). I decided I wanted a hairless turkey meal:)
To all those celebrating Thanksgiving I hope it's a great one w/fun filled memories & good food you can enjoy.
Take Care & safe travels to all-
Malinda xx0 -
so, Hi all. WBR starts tomorrow, so i think I've found my nitch in this corner.
I'll introduce myself: I'm Donna Berka, 56 native of San Francisco. I was Dx stage iV from the get go in February '09, bone only mets. Been doing well with various txs, moving along to the next average 7-8 months on and IA or chemo.
In August the headache of doom arrived. Along with a numb chin and some small spots in my liver for the first time. It took this long to identify the dura mets since they didn't show clearly on the first MRI with contrast.
So that brings me to tonight, anticipating tomorrows WBR and looking forward to getting to know you ladies better.
((hugs)) donna
0 -
jintski- Congratulations on your good news!! I'm sorry about the impending hair loss. Mine started falling out a week ago (right at the end of rads) and is still coming out. We'll see what I'm left with in the end.
Donna-Good luck tomorrow! I hope your headache disappears quickly! I just finished up a 2 week course of rads at UCSF. In case you're being treated there, I'd recommend calling an hour or so prior to your appointment and see if they're running on time. I spent way too much time in the waiting room!!
0 -
Welcome, DonnaBee! I like that saying: "from time to time even a blind squirrel finds a nut!" I've been sharing it with my friends. Anyway, sorry you had to join Club Brain Mets but I'm sure you will get the support you need. We are all pulling for you! 0
-
Before I forget, I wanted to congratulate Jintski for a good report. Thanks for sharing!
0 -
Here is a good website brainmetsbc.org. May be a part of this website
0 -
Well, Have been fighting stage 4 cancer since July 3,2008. It took from May'08 to then to find out I had mets although they had already had suspesions and told me as much. I done many things. Including brain mets dx Feb.1/2010. Almost 2 years now.
0 -
Thanks pbandj
That is really what I wanted to hear this morning, just been freaked be something I shouldn't have read about a particularly poor prognosis. Coming on here and reading about almost 2 years, is just the boost I need this morning! Thank you for sharing this information...we all need inspiration and confidence that will will still be posting in in the future,
Take care all x
0 -
What have y'all done about working? Did you stop during treatment? (surgery, chemo, radiation?) do you plan to resume work when treatment is done?
I have just done surgery and am facing chemo and possibly WBR. Don't know what I should do about work.
If you stop working, what did y'all do for insurance?0 -
You are all an amazing group of real, strong, beautiful women.
We are thinking of, and ((((( hugging ))))) all of you!
Your Mods
0 -
Hi survivor2Be - great name, hope you will be! As I hope everybody else on here will be!
I was diagnosed with brain mets last Wednesday and began treatment - WBR this Tuesday. It is due to finish early December. I have told work I will return in January, bearing in mind, I may have to review this if I suffer any debilitating side effects. I am a teacher, so luckily being a 'public servant' in the UK , we do quite well and have sick pay provided by our employers for 6 months. I would be interested to hear what the situation is like in other countries!
I hope you are able to resolve this asap - as the stress of treatments, prognosis etc is far more than enough to deal with without worrying about finances etc
Good Luck xx
0 -
My work has been so nice. Granted I'm not being paid & pay for my own insurance. I'm not able to work either while I'm doing brain Chemo. Just totally wipes me out. When I just have body Chemo I'll be able to work a little & will gradually add back hours. But now I'm focused on getting better. Although I miss "normalcy" I know now is the time for my body to heal.
Take care all & have an amazing holiday. Thank goodness I feel great for the holidays & I hope you all are enjoying yours as best you can w/o SE.
-Malinda xx0 -
Hi please could someone let me know if they have any experience of intrathecal chemo? My sister was diagnosed with stage iv bc and bone mets. She's recently developed liver met and had mri and then lumbar puncture last week. She called and told me that there were cancer cells on her csf and that her onc had given her the options. One being hospice care, the other this ontrathecal treatment. She thinks she will have it on friday but she sounded real foggy today. Im so worried about her and desperate for her to get some relief. HVe any of you ladies had this and had benefits? Thznk you so much
0 -
hey cynsister, sorry to hear about your sister and her suffering, sending u positive vibes and the courage to go thru this, i am sure she will pull thru..i am afraid i am not too sure about this treatment but it looks like they are going to infuse chemo drugs via injections in to her spinal fluid to have a direct effect..
i am sure one of the girls here will have some valuable info for u..
maybe u can try one of these websites if u have not been there already..
all the best and will keep u and ur sister in my prayers for a speedy recovery
much love xx
0 -
Oh thanks so much for your reply! I have looked at those sites and maybe im being thick but i cant get a sense of how difficult it is. The side effects seem so serious i dont wznt her to suffer any more i haven't been abble to stop crying yet so perhaps im just not taking it in. Im gonna have to call my mom in the morning an i dont know how to keep ot together
0 -
I know exactly how u feel my mom is going thru this dreaded disease and I am scared sick othe side effects she might have to endure..its 1:30 am here still cannot sleep..
just try and keep it together and maybe spking to her oncologist may give u some more understanding and perspective in to her treatement, prepare yourself with a set of questions and spk to them on the phone..sometimes they allow such things..
hope everything turns out ok..prayers for your family...xx
0 -
Are you in england too? Its 1.38 here. I wont be able to speak to her onc as she is in the states. How is your mum doing?
0 -
I'm in the states. I'm looking into my short-term disability, long-term disability with my job and also will look into SSDI with the government. I have requested and been granted medical leave until Jan to recover from surgery, so now I need to plan about the radiation and chemo. I don't think I will be able, nor do I want to, work full time during treatment. It's just too much and I"M TIRED!!! Plus, I want to focus on my health and doing the things I need to do: eat, exercise, stress, etc.
I contacted the social worker with my cancer center and there is a free service regarding the SSDI applications, so I'm waiting on that. I'll have a conversation with my work next week about a plan as well, once I have a better idea about my human resources status.
0 -
Hi survivor, sorry my question was to bestfriend...i really hope you get your disability thats an extra worry dont need. Ill keep my fingers crossed it happens soon x
0
