Brain Mets Sisters
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formygirls- Please don't feel bad about posting. That is what this forum is for. It isn't titled " only for good news". We are here for you. Wish I could be there in person. i would give you a big hug and let you cry. You are such a fighter. I hope that in a while you will be able to process the choices they have given you. But for now, allow yourself to grieve. You deserve too. We are here for you. I pray that one of the options will work for you and you will get another several years or more.
Hugs to you.
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FMG: Is there any way you can be less isolated? Can you have friends come in to sit with you no matter what your mood is! Otherwise, short of actually leaving the house, that can give ME a little lift. My friends suggest bringing dinner or games, I take a lot of lortab abd Ritalin and shut out the misery. Which is minor compared to yours.
What is the deal with where the headaches (HA's) occur? I mean is it related to where the worst tumor is? I hear different things, like it has nothing to do with tumor location.
K
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FMG, geez I hate to hear this news but I am glad you posted it because that is what we are all here for...to support one another through the good and bad parts. I will keep you in my thoughts and prayers in hope that either the Ativan or the surgery will help. Please keep us all posted on what you decide to do. I am happy to hear that you already have had 2 good years and here is hoping and praying you will have more. I can't even imagine how you feel right now but please know we are all surrounding you with love and positive energy and prayers (if you desire).
Gentle hugs to you,
Katie
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Formy - Sorry to hear about your bad news. It sounds like you're looking for reassurance for brain surgery. I had brain surgery Sept 2013 and it was a piece of cake compared to what I expected. Not to be disrespectful to those of us that had it, but I think we can all say we were scared "sh**less"; but for me, anyway, the fear was worse than the actual surgery. I was ready to go to the casino the night of my surgery. Never had a single headache. I also heard that the prognosis is much better with surgery. So you could get a few more years out of going for the surgery. Good Luck and hugs to you.
Karen
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How are you feeling today Formy? Much love
I have a question for you ladies that have been on Dex... I have been on it for nearly 2 weeks now and the diarrhoea has taken over. I am on fire. I am wondering if any of you have taken imodium to help? It is night time here in Aus, I have messaged my breast care nurse and am waiting to hear back. I know you aren't Drs but I just wanted to know if I take it will it give me relief or have to opposite effect?
Thanks so much.
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hi Karen. I have been on dex for 5 months now ranging from 2 to 4 mg a day due to brain mets and back and jaw pain. Diarrhea has never been an issue and typically isn't a side effect of dex alone. Are you on other meds? you are right in talking to your medical team as it's hard to say to take Imodium without knowing your whole history. That being said Imodium was my friend during perjeta and xeloda induced diarrhea.
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discovered brain mets - many small, 1 larger that is affecting my motor skills. I also have 2 spots on my spine. had minimal symptoms. started 15 rad treatments to my brain, and 10 to my spine. off chemo while having rads - makes me nervous. Have had liver mets from the start, lung mets were found 12/02/13 and chemo was changed. Abraxane didn't work at all - progression to liver and lungs in 2 months. Doctor was shocked - good thing I mentioned the VERY slight symptoms. Done driving - Done working. I still have a month of pay between sick time and vacation - then onto long term disability and SSDI.
KarenA - looks like we might have started our rads about the same time - here's hoping for good results.
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formygirls - sending very best wishes to you (just sent you a PM as we'd love to do a card shower for you). As for surgery versus Avastin, I don't have a clue what is "best" from a medical perspective, but I will say that brain surgery was vastly easier than I expected. If your doctors are telling you this is an option, I would consider it. I was out of the hospital after 3 days and the recovery was easier than imagined. It wasn't a cake walk, but considering how much was involved, it wasn't too bad.
Take care, hoping you are doing okay.
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Formy, Please do not apologize for sharing your feelings. As others have said, that is what we are here for. Like Karen2012, I too had surgery in October and the thought of surgery for me was worse than it actually was. Again, that was me, you have to make your own decision that you feel comfortable with. Sending lots of love to you.
STUPID CANCER!!!!!!!!!!!!!!!!!!!!!
Edited to add, I was out in 3 days like Nancy too. xoxo
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MamaPeg, Sorry you had to join us but glad you are here for support. Welcome friend!
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Hi all!
Just wanted to update you and ask for help, as I am scared. Today, I was diagnosed with leptomeningeal disease, so now I will go in for WBR. I did the Gamma knife Oct. 2012, the Avastin Oct. 2013, and now this. This nightmare doesn't stop! I am getting 10 tx's of WBR. I don't know what to expect!? I don't know much about WBR!? I am lost and shocked!
I don't want to loose hope, but since I got the brain met, I've lost half my vision, half of my body is in pain, and now I am scared that I will loose something else.
Will WBR shrink necrosis? Probably not. argh....I'm just so fedup! I need strength!!!!
Formy, I took avastin. I was ok. Although I ended up with Neuropathy from a shift of the tumour in my brain. All went well besides that.
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Oh Jilly - I`m sorry, but please keep fighting I just saw a very inspiring woman on TV that changed my outlook. I just posted her website address about surviving mets against all odds since 1997. Please read it, it will make you feel better to know that a lot of us are exceptions to what doctors say. Prayers to you.
Hugs, Karen
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To Dear Jilly,
My daughter was diagnosed with leptomeningeal mets at UCLA. They immediately took her to surgery and placed an Ommaya port in her skull and delivered Herceptin through it to bathe the meningeal tissues in it. After one treatment they were gone but she still gets a dose through the port regularily with no recurrence of the tumors. I see that you are HER2+ so should qualify for this miraculous treatment, too. But with this diagnosis, time is of the essence.
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Dear Jilly,
When I lepto mets in aug11 they gave me IT chemo through lumbar spine. I had six doses with per, tax, and herceptin.i did six doses to minimimize decadron. this time around, they do not tell me and i do not ask. i am tired of txs. I see my neurooncoligist on Tuesday and want to sleep till then with my Ativan. i would get a second opinion if you can. PM me your number and I can call you if you eant to talk. I can still talk but hard for me to type.
All,
Thank you to all (nancy, k-lo,vicki, cmhartley, jilly and others who I have mssed) have who have responded with msgs of support. right mow i blame everything on brain mets. I will post another update after mtg with doctor next week. Right now, I just want to sleep. Hopefully, I will wake up.
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Don't know what to say other than praying for you formygirls.
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Thanks Ladies,
There is a plan in place for me. WBR followed by IT herceptin. I hope.
Will keep you posted.
Thanks again my dear friends.
Jill
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Thinking of you dearjilly and formygirls
Dawn xx
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Jill, I am glad you have a plan now, it is so scary when we don't know what the next step is. Please keep us updated.
Formy, .Take your Ativan and rest, you have gone through a lot! I hope you can find something that can put a smile on your face in the mean time.
Sending loving hugs of support to all!
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Hi Ladies-my thoughts are all with you. I've been away trying to pretend everything's fine.
I was having neck pain and thought maybe I was sleeping weird. MRI shows new brain mets that weren't there before. My onc suggests an Afinitor/Herceptin/Navelbine study. Don't know if any of you have tried? PS-already done WBR. So much for that.Lots of good news about Afinitor I guess? Probably start next week-we shall see. Decadron getting me through right now. Love to you all!
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Hendricks - Good luck with the Affinator combo. Positive vibes coming to you.
Hugs, Karen
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Thank you Dawn and Vicki! much love to you!
I start WBR tomorrow and I am scared! Any advice?
Hendrick, let us know what's happenin' Thinking of you and your boys.
Karen, always thinking of you. Hope you are well. Where is the link to that story that you were talking about?
Formy.....xoxoxo
THanks for the info dalia
Dawny,,,xoxo
Thanks all for your prayers and chat soon.
Jill
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p.s. I'm on facebook....PM me if you want to connect.
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Hi Jilly - Please let us know how you are doing with the WBR.
I've been thinking I may be next, since I've been having unusual headaches and vision problems for the last few days.
All I've heard about WBR is a lot of fatigue. Some people get nauseous, others don't since the decadron (sp?) helps with nausea. I hope you get as much positive energy from this link, as I did. I'll be thinking of you. Here's the link.
http://cancersurvivorinthecity.com/story.php
Hugs, Karen
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Hendricks, Good luck with the study. I am going to have to look into this, I have not heard of it. Keep us posted and know we will be right there with you cheering you on!
xoxo
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Jilly, Good luck tomorrow! I hope you breeze right through it with outstanding results.
xoxo
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I am having my 8th treatment today - with a total of 15 times. Everyone is different, and I have been very fortunate with all my chemo, etc and have not had bad SE, except for the Xeloda. Not too tired - getting bored. Not supposed to drive. They are going to start weaning me off the Dex this week, so will help with the dinginess.
Karen2012 - DO NOT WAIT! I asked for the Brain MRI very minimal symptoms, typing the wrong keys. Boy were they shocked with the results!
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Wondering how many times you can have Cyberknife repeated? Has anyone had this done multiple times? WBRT has already been done and now the tumors are growing again. There are several...and as I understand they can only do a few with the Cyberknife.
Asking for a family member. Thanks.
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I was told by RO that cyber knife was for single or very limited areas. If it's more extensive they would opt for a different type of machine for treatment such as WBR depending on what the extensiveness is and the location.
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Whisper,
I am not sure how many you can have but hope someone will come along soon!
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Off topic. How many of you are still working with brain mets? I just received notice from my workplace that since my Dr. says I cannot perform my duties (sitting at a computer and phones 40 hours a week, lots of reports, etc.) they basically have to let me go but once feeling better, they would love for me to come back. I really love the people I work with and hate the thought of not working and I feel guilty because I love them so much and lazy,I feel like I should be able to suck it up like I have for almost 7 years and work through it but the with the brain in the mix on top of bone, lung and liver I feel like I should just live and enjoy my life... What do I do??
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