Brain Mets Sisters
Comments
-
Lovely to hear some positive news Parrynd1. I hope your next lot of scans are good news too.
Angi, thank you for sharing, those stats give me a little hope
I'm getting the results of my first lot of scans since stage IV diagnosis on Tuesday. I have a feeling there's something going on in my brain, hoping it's just crainiotmy recovery related, lots of other weird pains too. Fingers crossed it's paranoid my mind playing tricks on me.
Hope everyone else is doing well
Ally
0 -
Sometimes I’m not sure if what I’m feeling is from surgeries, meds, existing cancer or new cancer...it’s very frustrating! Makes me also feel paranoid, but I don’t want to feel afraid of every little thing either so it’s a tough balance and state of mind.
AllyBee - I hope your scans are good as well!!! Sending positive thoughts your way
0 -
Dear AllyBee,
I pray all your results are way better than expected! Will be watching for an update.
Dear Parrynd1,
I pray your scans are way better than expected in October as well.
Balance is hard. I am on some facebook MBC and HER2+ groups and they sometimes take over my feed. The posts make it hard to not focus on the cancer. Some of the people are very bitter and negative. I have only been dealing with this since February, so I am not judging. It just sometimes makes it hard to stay positive, which is where I want to stay to live my best life. I had depression before I got cancer. I can't afford to fall off into that abyss. I know all the facts and figures and do research when I have a question. I don't need the "Negative Nellys" but I so feel for them also. Anyone living with this disease has to do it however they can. I do pray they find some peace and happiness.
Best wishes to all! I will hopefully get scans soon. I find out Tuesday. I have H&P and visit my Onc. She wants me to start Xeloda soon.
Hugs and big love,
Angi
0 -
Ann,
I had a cracked right nipple so severe that I had to feed my daughter off of only my left breast until it healed. That right side was problematic breastfeeding both of my kids. And it was the right side where I had BC the first and second time.
Hugs, Susan
0 -
I read that Hindsfeet, who was a brain mets sister, died on October 4th. She hadn't been posting here for awhile. May she rest in peace.
0 -
So sorry to hear about Hindsfeet. Thank you for letting us know Susan.
0 -
I found out today I won't have scans until 11/26/18. I was hoping for sooner, but I don't want false results. I understand the wait. I don't have to like it.
I will start Xeloda soon. They have to get authorization, and there is a wait.
I am getting the Shingles vaccine this week. Do any of you have any other recommendations before I start Xeloda? I have not had the flu vaccine and usually don't since there are so many strands.
I am still battling more fatigue than I have had. Just trying to rest and sleep.
Hugs to all and big prayers!
Angi
0 -
Hi here I am. I have leptpmeningial disease and I am trying to think it’s not in my brain, so that’s why I haven’t been on this thread sooner. It’s in the spinal fluid around my brain. I have no brain symptoms only numbness in spine and feet. I am in methatrexate. First was thru spinal tap now thru ommaya reservoir 2 times a week. Get bone biopsy Tuesday to confirm from breast cancer. Will let you know when I find out diagnosis. I’m just so worried I am going to have symptoms of the brain soon. I got all my stuff in order. I will fight this kicking and screaming wherever on this planet. I have to live to see my kids have kids! Thank you all, Ilene0
-
ihopeg,
Welcome!LM is scary. I had a scare of that myself. Turns out it is menigeal mets not LM for me. Still kind of foggy of the exact difference. You have such a great attitude/outlook! You can’t choose that you have cancer but you can choose the attitude you go forward with. I’ll be praying & sending positive thoughts your way.
Also there is a LM thread I think, but this thread is much more active and also has fellow ladies with LM.
0 -
Crosspost -Looks like Wiegp22 (Paula) passed away on 9/24/18. She hadn't posted in a while but was still active in August. RIP sister 💛
0 -
RIP Paula. My thoughts go out to her family.
0 -
Got my first scan results since getting on the Alpelisib trial. Overall 40+% reduction in my tumors!!! The newest tumor in my lung completely disappeared! Had some mouth sores but they went away. No side effects besides fatigue now.
Hugs, Susan
0 -
Susan, that sounds pretty good, happy to hear it 😀
0 -
Hi! Please help me figure this out. Has anyone had methatrexate thru ommaya reservior? I had my 5 th treatment yesterday. Have been hyper for days. Well today I was feeling mentally fine and this evening I started getting mad at everything. First I’m sick of the cell phone! About to throw away! Also my dog Abbey who I love like a child is driving me crazy. I’ve been mean to my daughter. Sorry Randi . I’m thinking it’s because of the methatrexate? I forgot to take leukoven this am! Or could it be decadron? I have been on that 2 weeks! Thanks for the vent ladies.
Ilene0 -
ihopeg, I don’t know about Methatrexate. Decadron, on the other hand, is a medicine I’m pretty familiar with for myself. At one point I was on 16mg a day. One of the side effects is agitation. I get snappy and easily irritated (normally I’m a pretty laid back person), I want to eat everything, but then I feel full at the same time. There’s a bunch of other SE’s I get from it. I really dislike being on it in general. Not everyone is the same though. My advice would just be to keep track of what you are experiencing and talk to your doc. If it’s something you feel is very serious you can call an ER anytime and usually tell them your symptoms and see what they suggest. I think there are also 24 free hotlines where you can ask an RN, but I’m. not sure if they will have the knowledge and info you need. You may also be able to call your onc’s office and see what they suggest. Better safe than sorry. Also, chemocare.com may have information on Methatrexate and it’s SE’s to help figure out if you should be very concerned. I always forget and it’s hard to keep track of all the meds and their fun se’s so this has helped me. Sorry you are going through this, but you will get a handle on it and learn what’s what soon I hope.
Cheers0 -
Wonderful news Susan
0 -
Susan that's fantastic news!!!
0 -
Great news Susan.
0 -
Yay Susan! So glad you are getting good results!
I just sent off my blood sample for the MBC Project. So excited to have this project happening at Broad Institute! Here is the link in case any of you are interested.
I have been looking for a study like this since I got diagnosed. They are looking for new treatment angles, research angles, clinical angles etc by looking at existing tissue samples, medical records, new blood work, and saliva. So happy my tissues are not going to be sitting frozen somewhere gathering dust.
Take that MBC!
Angi
0 -
Ihopeg
I felt hyper for the first few days. Then I felt irritated on Decadron and then when I was ti-trating down I got the munchies and felt full. So annoying. I did not like being on it. I was so glad when I took my last dose.
I hope you feel better.
Angi
0 -
Thanks everyone for the supportive words!
Here's a link to my MO Hope Rugo's summary of breakthrough trial results presented at ESMO 2018. She talks about the SOLAR-1 Phase II trial of Alpelisib.
https://www.youtube.com/watch?v=4-oo3LoCqcU
You can also watch the actual presentation at ESMO by the primary researcher, Fabrice Andre, here:
https://www.youtube.com/watch?v=nmFrevulKTo
Very exciting results!!! Also, a reason to get your genomic profile done.
Hugs, Susan
0 -
Illimae,
Thanks for posting about wiegp22's death. Sad to lose another Brain Mets Sister. I hope she died peacefully.
Hugs, Susan
0 -
Hi all,
My mother (67 years) has brain mets (HER2+) since Mar'18. She had around 23+ lesions covering mostly all lobes. She got a WBR done immediately and was asked to start on Lapatanib+Capecitabine. However, nausea and diarrhea overpowered her condition as she was already weak. She stopped taking the combo after a month and said will just survive on alternative medicine(Ayurveda). A month back, her left jaw started hurting, left eye started getting red and left ear went deaf. The neurologist and ophthalmologist opined that there must be a lesion on the occipital lobe which might be causing that and we went for an MRI scan. Now we see that there is a lesion on the occipital lobe. Also from the scan we noticed that the number of lesions decreased to 16 but the lesion sizes have grown up. My question: Is gamma knife still a possible option? The onc was asking us to either put her on a palliative care or put on lapatinib only without capecitabine to minimize side effects. Please let me know.
0 -
Maha007, I’ve have heard of gamma knife being used on multiple brain mets, even as many as 17, if I recall correctly. However, it seems to be a challenge getting docs to perform gamma on so many, as it is outside of the standard protocol, another issue could be the size of the remaining mets, which I think must be less than 2 or 3cm. This is just from memory, which is admittedly flawed, so I’d be sure to bring it up again to your mom’s radiation oncologist.
0 -
I started to post a picture of my port, but I did not want to gross anyone out. I thought you might enjoy this one though.
My Port is trying to push through the skin. My doctor is going to replace and move it down tomorrow morning. Will be a relief since it has been red and irritated since March when they put it in. I have to be there at 9:45 am. I will be Hangry by the time they wake me up. LOL.
I got the Xeloda today. My doctor said I can ti-trate up from a lower dose. I read a scholarly research paper that said the side effects aren't as bad that way. She is not convinced, but told me it was okay to start out lower. I think she thinks I know more than she does. I know I don't. I 'm just scared of the side effects, and too scared of the cancer to not try. sigh. I will start it Sunday. After I recover from the procedure. 7 days on 7 off. I am also going to try the cold gloves and socks. Looking for them online now.
I have a new word- Wait-xiety. Its the anxiety of wanting to have scans but having to wait till the radiation settles so you can see true results!
Any suggestions for surviving Xeloda?
love and hugs
Angi
0 -
I like that word combo, Angie. I have a brain MRI, Body CT, and bone scan tomorrow. I’ll be there all day and joining you in the hangry spectrum. Monday we will see if the Opdivo is working. I have a feeling it’s not. The skin mets look worse and my right side (naughty side) by my ribs has been hurting and waking me up at night. Luckily the headaches have subsided and vision seems like it might be improving. Monday with be my 4th go on Avastin& 3rd for the Opdivo/avastin combo. Let’s hope I’m wrong about the progression! Happy positive thoughts.
Hope everyone else is doing well
0 -
“However, it would be significantly better for the patient if rather than waiting for neurological side effects to become manifest they could be avoided”
Hyperbaric oxygen therapy: can it prevent irradiation-induced necrosis?
https://www.ncbi.nlm.nih.gov/m/pubmed/22465460/?i=2&from=HBOT%20radiation%20necrosis%20brain
0 -
Maha_007,
Can your Mom try a different drug combination? Perhaps she could tolerate Xeloda? Without her history of treatments, I can't make any recommendations. Is she also ER+?
Hugs, Susan
0 -
Good morning ladies. I have been on dexamethasone for a few weeks while getting radiation. Just tapered off and was fine til I awoke this morning to excruciating pain in my hips knees and back. Is this a steroid withdrawl????
0
