Brain Mets Sisters
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hi every one , my first post on here , I have just have surgery to remove a 3cm tnbc brain met , my symptons are vision problem , what I want to know is any one had surgery with these symptons and has your eye sight gone back to normal once the swelling has gone Dow , if so can you remember how long after treatment your eye started to get better
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Update on K-lo, incredible founder of this thread and hero on the boards. If others have more info, please post. She's hanging in there, but has had a rough time recently (understatement). She's so darn strong...I know she will never complain about anything, but I suspect from the note I got from her that things are very hard. Her hubby is so strong, he sounds really incredible, sending lots of warm thoughts to him.
Sim272 - welcome to our little corner of the internet, hope your surgery went well. I can't answer your question directly, but I know that after brain surgery this past July, my symptoms of headaches were greatly reduced in the months after my surgery. I hope you are able to get your vision back, sending you best wishes.
Chickadee - sending positive thoughts your way.
FMG - I hope your headaches are getting under control, been thinking of you a lot lately.
Jilly - best wishes to you too, thanks for the holiday greetings!!
My scan on Monday went smoothly and I got GOOD results right away from the Radiation Oncologist who reads the scans same day (bless him, he is awesome). Everything is clear, so we are celebrating. I always have mixed emotions about posting good news since I know everyone is dealing with so much, but I always am encouraged by reading good news of others, so am posting.
Warm hugs to you gals, hope everyone had a wonderful Christmas. I will log on tomorrow when I'm a little more awake, I'd love to organize a card shower for K-lo.
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Hello All!
MD, I was on steroids for about a month, weened off and had to go back on them for about ten days then weened off a few weeks ago. I have had slight headaches here and there but so far (knock on wood), not bad enough to ask to go back on them. I hope you start healing well enough to get off of those nasty things soon. I also liked them at first because of all of the energy I had but that wore off, more cranky than anything.
Formy, I hope those headaches go away, if not, you can find something to control them..
Jilly, Right back at you! I hope 2014 brings joy to all of us!
Chickadee, I hope your Dr. is being cautious and your se are mild yet lethal to the cancer.
Hi SLM, Welcome.. Wish you did not have to find us but I am glad you are here for support. Are you still on steroids? That could cause vision issues too, My eyes were worse when I was on them and my Mom has the same problem when she has to take them.
Nancy, FANTASTIC NEWS! I am happy to hear this and I think all of us love to hear encouraging stories. I hope good news comes to all of us!
I saw the eye Dr. this week, I had to do several tests and found out I have a small blind spot, my Dr. told me this may happen because of the location of the large tumor they removed was but it is not bad enough to prevent me from driving! I am happy for this so I can help my Mom, she has Stage 4 lung cancer and her treatments are kicking her butt.
Sending cyber hugs and healing thoughts to all of you.
Vicki
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Hello - New to this thread: Is this thread still open. Only asking because I see no post(s) for 2014
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Hi Jenn - Yes the thread is still open. Welcome, sorry you have to be here.
Hugs, Karen
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Hi Jene! Welcome to our club, you will find much comfort, info and support. I am sorry you had to join us.
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KAREN!! I've been thinking about you.....how are you?
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@Karen2012: Thanks for the greeting. I'm OK (now) with being here. I've been living w/left breast/(spine)bone cancer since January 14, 2009. It returned (same type of cancer, same location and moved to my right cerebellum in May 2012. I had my tumor removed from my cerebellum on September 6, 2013 because it was growing (1cm to 1.1cm). Thank God, He has allowed me to survive five (5) surgeries related to breast cancer since 2009. I'm blessed - - truly blessed. Having cancer is not just YOUR cancer, its your families, your caregiver, your loved ones cancer too. It is not a death sentence or a hushed conversation anymore with the excellent technology we have today. In September 2013, my oncologist said I am NED (No Evidence of Disease) and for that I'm thankful. My surgeries are as follows:
1). Kyphoplasty (for my tumor(s) on my spine) January 26, 2009. Was walking hunched over because of the pressure from the tumors on my spine. 25 minute surgery, half awake. My pain scale was a 14 on a 10 scale. Oxycodone and dilaudid together to stay on top of the pain. Kyphoplasty is cement placards put under spine bone to raise it up to relieve the pressure from the tumors.
2). Left breast Lumpectomy September 1, 2009. My left breast tumor was 3.7cm. The outside of my breast looked like an orange peel, dimply, heavy and hot to the touch. I had 3 choices for before surgery (a) no surgery (b) lumpectomy (c) mastectomy.
I chose a lumpectomy because I did not want to lose my breast, even tho I had a large tumor, and the cancer was aggressive.
Tests were done the week before surgery and the tumor was there and so noted. On surgery day, the surgeon found no tumor, only scar tissue. Lymph nodes removed (don't recall how many, but they tested negative for cancer).
3). Both Ovaries Removed May 2011 (cyst or mass was on one, decided to have both removed - tested negative for cancer).
Cancer Returned March 2012 (same breast, same location). Went to see the breast surgeon, decided to have a left breast mastectomy April 20th, 2012.
4). Left Breast Mastectomy - April 20, 2012 - (May 2012 fainted and my team ordered a Brain MRI which came back positive for right cerebellum 1cm cancer). When I fainted I fell on my left side (mastectomy side) knocking my tube out of line, everything that was to come out went BACK into my void breast. Upon seeing the surgeon, cut my incision, expressed most of the fluid, had it tested, came back positive for MRSA. Visiting Nurse for 2 1/2 months packing the incision from my fainting spell, which stopped me from getting physical therapy for the lymphedema in my left arm from the mastectomy I had in April)
5). Brain Tumor Removed - September 6, 2013 The tumor started at 1cm and grew to 1.1 and decided to have it surgically removed by the doctor who did my kyphoplasty surgery and who was monitoring my brain tumor since May 2012 with Brain MRIs, one gamma knife radiation.
I thank God for me being alive. I hope someone is encouraged to stay in the press and move forward - - The tumors on my spine are at bay/sleeping because they still exist, but are not acting up since 2009 Thank God. Everyone, please be encouraged, keep fighting. Everyone's journey is different, no two are alike. Oh - the month, January 2014 is my five (5) year anniversary of living with breast cancer, even though I'm still in active treatment and being Stage IV. There are about 3 significant dates this month for me . . . The first being the 8th, when it was questioned by my PCP if it was breast cancer. The 2nd is the 14th, the 14 test results confirmed Stage IV breast/bone cancer and the 22 when I called a family meeting to tell my two daughters my diagnosis (the hardest day of my life, even though they're 25 + 30).
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Hello dear ladies, I am so glad we have this thread on here as I have already gotten a lot of encouragement just by reading your stories. I have been on the Stage IV boards since 2009 with extensive bone, bone marrow and liver mets and just recently diagnosed with the dreaded brain mets on New Years Eve...what a way to bring in the New Year huh? Oh well. I went for a brain MRI due to some troubling symptoms....headaches, nausea, loss of appetite, being in a fog, visual problems, etc and they found about 7 measurable mets primarily in the temporal lobes. I got started right away on WBR and dexamethasone which seems to be helping a lot with the headaches, nausea and loss of appetite. So far the WBR is going well but I've only completed 2 treatments. I will be receiving 15 total treatments assuming all goes well. Then, I'm back on to chemotherapy. I'm not sure what my medical oncologist has in mind now. Initially, I had terrible SEs from Gemzar (after 2 infusions) and so he was talking about switching me to Doxil. I'm not sure why...I don't see that as a typical drug that is used for anyone else. But, with the newest developments that may change. I'm also going for 2 other opinions at MD Anderson and the Methodist Hospital in downtown Houston. We will see what they have to say.
I'm definitely scared of this new diagnosis. I am trying to stay positive and believe that I can beat this and that it may just be another bump in the road however there is always that black cloud hanging over now...questioning whether I am heading down another path...I'm sure ya'll can understand. I think for the first time I am starting to feel like my cancer is getting the "edge" and that I may be slowly losing my battle. So, I am working hard as I can to stay positive and to overcome those feelings
Thanks K-Lo for starting this thread and thanks to all of you brave ladies for being her and being willing to share your thoughts, your experiences, your advice and most of all your support and encouragement. We are truly all Blessed aren't we?
Hugs to all, especially my new brain mets sisters
Katie
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I have been on dexamethasone 4mg now since 12/31 4 times a day. I just started weaning my dose down yesterday to 3 times a day. I have been experiencing quite a bit of abdominal discomfort at night after eating and increased tenderness overall. I have diffuse liver mets and recently had progression in several lesions so I'm a bit worried being off of chemo while doing WBR. I only had 2 infusions of a Gemzar before starting WBR. I've had 3 doses, 12 more to go. Just curious if anyone else has experienced this with the steroids and if it went away. Otherwise I'm doing well with good appetite, no more nausea or headaches and good energy. Last blood work on 12/30 showed only mild elevations in liver values.
Thanks so much to all of you
Katie
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Hi, my daughter has brain mets and has had chemo, gamma knife and whole brain radiation. She has been stable now for some time but they recently found a new tumor growing there. They are considering using proton therapy at MD Anderson. I know that some of you have had proton treatments and hope you can answer a few questions. First, did it work? And what were any side effects? Is there any particular doctor at MDA that you would recommend? I am so grateful for any replies. Marilyn
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Hi All: I'm new to this forum, my grandmother who is now 83, and diagnosed with breast cancer at 81, had the masectomy, radiation...etc...now is stage IV with metastatic cancer to bone, lung and brain. I'm going to be blunt here, and need to know what I need to watch out for. Or how this progression goes. How long she has (which oncologists won't say). The miracle in all of this is that she is walking, talking, and still in her home with little to no pain. Just loss of appetite and some restless nights. Can someone who has this disease please tell me the truth.
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Daney: I'm kinda new here. I kind of told me personal story on this thread on almost the very last page about a week ago. I was diagnosed in 2009 Stage IV bone/breast cancer. After 3 surgeries (kyphoplasty) (left breast lumpectomy) and (both ovaries) my breast cancer returned, same left breast same location and still very aggressive. When it returned, it was in my breast, and after fainting was found to have lodged in my right cerebellum at 1cm. After a left breast mastectomy in 4/12 and watching this brain lesion, it was shown from MRIs that it was growing (1.1cm) and it needed to be removed. My right brain cerrebellum lesion was removed in 9/6/2013, after receiving one treatment of cyber-knife radiation in early 2013. I am also on Tykerb (5 pills/day), Herceptin and Zometa once every three weeks. I'm doing tremendously well, Thank God! I just celebrated my 5 year CANCERversary yesterday ( Jan 8, 2014 ) even tho I'm still in active breast cancer treatment. In september 2013 I was diagnosed as NED ( no evidence of disease), even tho I still have the cancerous tumors (don't know how many) on my spine, they're sleeping and not even awake, I just know they're not reacting or showing off) and I'm thankful for that also. I have two companies that help keep my out-of-pocket payment for my Tykerb very low and I pay $25/month, was before assistance $110/month. I've had five surgeries directly related to breast cancer, and I'm still on the green grass of this earth, telling everyone about my LIFE and that God allowed me to have those surgeries to tell everyone HE IS STILL IN THE HEALING BUSINESS. Be encouraged Daney and the rest of our cancer warriors and fighters, be strong, fight and continue to LIVE.
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Jene, thank you so much for sharing your story. It is so encouraging and uplifting to many of us here. Keep up the fight and your trust in God's healing powers.
Hugs
Katie
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Hi Katie - I have head dex can be kind of rough on the belly. I was on a few different meds after surgery and when I was home but unfortunately, I can't remember what they were. One was for Acid and I believe the other to help with digestion?
Marilyn - I have heard of that and my Hosptial just receieved one of these machines. I am getting and MRI and the results on Friday to see if I need additional treatment. Other than that, I am sorry I have no info.
Wishing all positive results!
If you don't mind, I have an off topic question. Anyone working while going through rads or return soon after? I would really like to go back, atleast part time but my Oncologist told me I should enjoy my life.... I am 41! I do not even know if they would let me stay on permanently only working part time. I just dont kow what to do. I am bored and a blit depressed. I have been able to help my Mom and that makes me happy but I hope to do both if I can...
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all,
Had my first WBR MRI yesterday and news was not good. It was after almost three months. I have had radiation thrice already so that is not an option. I go for PET BRain once my ins approves. The the options are surgery or Avastin. I have not called hospice and will go as far as I can. Liver and bones yesterday were stable but lungs showed growth due to possible allergy from affinitor. So stopping that for now and continuing the rest of chemo which is Xeloda, Herceptin and Zometa. I cannot type much because of bad neuropathy in hands and feet.
Vicki,
I would not work but that is me and I have bad chemo fatigue.i am 42 and been on chemos for 24 months.
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Vicki,
I am so sorry you are facing this. Please know you are surrounded by love and positive energy.
Hugs to you,
Katie
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Hi Formy, What part of the brain would they do the surgery on? They can't do additional Radio Therapy? I hope they can come up with something! Did you have any response at all? I feel your pain and I am sending you positive thoughts and a great big cyber hug. I had surgery a few months ago, it is amazing what they can do.
I received my post WBR MRI today, most spots showed response but I will most likely have to do radiotherapy in a couple of months. The Dr. was happy with results so I guess that is good.
XOXO to ALL!
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Hugs Formygirl. I hope they can find a plan for you. You are a fighter. You are in my thoughts.
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Well....here I am...the newest member. I'm at your mercy to talk me off the cliff I'm on. I had some tingling and numbness in my left temple area. Plus I've been incredibly tired. Onc ordered brain MRI. He said he was SHOCKED when results showed small, but numerous, mets. I meet with radiologist tomorrow and will have mapping. WBR starts Monday. So chemo is on hold...not good. I was hoping to start a PD1 trial next month, but that's not looking good....I don't think they'll accept me. This is not good... Bobbi
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Oh Bobbi, I'm so sorry you had to join us. I was told if they are small like that, WBR will take care of them. I had and craniotomy for a 3.4 cm tumour and a 1 cm tumour. And SRS for a 1 cm tumour in the temple area. No new mets since October, so I haven't needed WBR. My other mets were progressing, so they decided it was more important to do chemo.
Good luck with your WBR, please let us know how you're doing.
Hugs, Karen
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Hi Karen...largest is 20mm......I guess that's considered small. Not to me though.
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Hey yall.
Reporting from several years of brain mets. The docs just look surpised......not much info to share.
What I want to be told in dreamland here is that someone, medicare, some charity agency, will pay for me to go to MD Anderson in NJ. I'm from there, so I can stay with family.... But in general, does anyone ELSE......meaning besides ME.... pay for travel, and the medical bills?
Thanks
Kathy
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Bobbie, my situation is very similar to yours. As part of screening for clinical trial at MD Anderson, we came across multiple brain mets. I had no symptoms and was low risk. Long story short I flew back home with the help of ativan and xanax and decided on WBR and this was in November of 2012. Hang in there❤. After the initial shock things will get better I promise you. love to you and please PM me if I can be of any help.
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I'm a couple hours from Houston MDA and it just got too expensive even with an RV. I wish I could help more.
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Hi all,
I have been diagnosed with brain mets a few weeks ago. It has taken me this long to read all these posts. Looks very quiet in here at the moment. Anyway I start WBR on Thursday. Was fitted for mask yesterday. Sooo sending love to all who need it. Any tips for feeling like I am stoned on dex would be good and the soapy taste of all foods.... blah, does that get worse with rads?0 -
Karen I know its scary. I was scared to. I'm done as of Wednesday after doing 15 sessions in the fall and a 5 boost they called it to clean up some small ones. The only negative I remember is that in the beginning I had to get myself somewhere quiet. Noise, conversation whatever irritated me. Then that passed and I actually felt well and sometimes a little euphoric.
My lesions were in the back that governs balance and mobility so I don't know if it be the same for you. No taste issues.
I asked for my mask at the end, I'm going to decorate it. But then I'm weird like that. Best wishes.
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I had my follow up brain MRI and PET Brain to see how the WBR done in oct treated me. Unfortunately, I do not have good news. There are two tumors in the celerebellum that have grown. They cannot radiate them anymore as they have received 2 SRS and one WBR already. So today, the neuro oncologist mentioned surgery or Avastin. If Avastin first, then no surgery is possible. At this point, we do not know if ins will approve either. I am sad and depressed. I got almost two years from the brain mets but I wanted more. They convinced me that WBR was going to work. Sorry to post such depressing news but no else gets it. I want to cry but I am numb. Do not get put off by my post. I got two good years and hopefully will get some more.
Is neurosurgery ok? I will read the old posts.
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thanks for your relies ladies. Formy your news totally sucks!!
My tumors (the ones they can see) are on left side. 2.4cm, 1.5cm & 8mm. This was on a CT so Onc in sure there are more but wants to give WBR and seep the other stuff up his sleeve if needed.
I have been on Femara since my mets diagnosis in 2012 it it got me into NED category until now. I knew it would eventually stop working. There were so many options left...until it went to my brain!
The dex makes me feel spaced out. Foods taste like soap (but I still eat them lol) I just have 0 energy. I thought I'd get the cleaning done, sort my wardrobe etc etc but nup. I just sit around looking like a spaced out zombie.
I'm in bed this morning, about to get up and take the younger kids to the beach before it gets too hot. We have 4 children, 19,18,13,7..
Will be back soon...
Take care x
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