Brain Mets Sisters
Comments
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Hey tx_anne - just adding a hello, let us know what you find out for follow up surgery or gamma knife. I had surgery in late July, followed by SRS...as formygirls says, I'm saving WBR for a rainy day. I've also had frequent ringing in my ear, you are the first person I remember saying anything about that, so nice to know I'm not alone. It has improved the past few weeks, but for a couple months it was really annoying.
K-Lo - nice to hear from you, congrats on getting through 10/10. Rest up!
I have a follow up scan in a couple days to see how things look. Crossing my fingers brain is clear as I'm starting a new chemo and I can only handle one thing at a time. :-)0 -
formygirls, just had a look at this thread by chance..good luck & huge hugs!
Nancyh, you ARE my hero, have been so cool through it all.. Hope & pray your beautiful smile never fades away..
K-Lo, haven't seen you around for a while. Glad the 10/10 is over..and ypu feel better soon..
Hugs all
Ebru0 -
have any of you been put on driving restrictions? I have no symptoms so wonder why? I am finding that very hard and hate being a prisoner in my own room. My dh sold my car and bought a new mini van and i find that i do not have the energy to learn a new machine at this stage of my life. I am finding the fatigue very hard and do not know what I would do and where I would go. I am only only 42 and find I spend all day in bed with the only daily break when dh takes me to the Cancer center. Passing time has become so hard. I am caught on all TV shows. I no longer work and friends do not call anymore.they are busy with their lives and I guess are surprised to find me alive. My treatments and scans do not faze them. They think WBR is just like getting a flu shot. They keep asking what is new?
Thanks for letting me whine. KLo and Anne thanks for reporting back. I will be on the lookout for burning scalp. Karen I know you are going through stuff too but I have not heard anything from you in some time, Nancy, good luck with Halaven. I hope it works and the brain scans do not bring more bad news. We can focus only on so much at a time.
Ebru,
Thanks for your support.0 -
I'm so glad this thread popped up as I've just started through WBRT and feel like I'm in a fog. It all started so quickly, MRI, rush to MO office, Directly to RO office, mask made.........all in the span of a day. If someone talked options I didn't hear any of it through the shock.
So it would seem that the treatments aren't the issue as much as the after effects and I can only wonder what they will be? Have a breakdown in communications today finding out if I'm even supposed to show up for my infusion on Wednesday.
Somehow I'll get it figured out.0 -
Hi everyone....just diagnosed with cancer cells in my spinal fluid and the fluid around my brain. Neuro is recommending a Ommaya port in my head for chemo and maybe a shunt to relieve brain pressure. Anyone else been thru this? There is a lot of pages to read in this thread! Thanks for any info and input.
Hugs
Robin0 -
chickadee,
Most oncs do not do infusions during WBR but your onc may have own ideas. Fatigue is the most pronounced SE for me. But some ladies have worked through it so maybe I am just fatigued out from being on non stop chemo. If you have symptoms, ladies often see an improvement soon during tx. Lots of hugs.0 -
formygirls, hey you are spending time with friends here 😉, does not that count?
Though not with brain mets yet, my drving has been restricted linked to the meds I am on. Well I have a couple of friends who pick me up to go for a breakfast, movies, etc. My car has always been like an organ of me, so I did have some hard time to get used to it being rotten the garage! The worst being my Ds begging me to drive him around, like in the past, so that he could be convinced "mommy's fine". That really sucks. I think your dh sold your car too soon. I would have been pissed if mine did that.. But that's me of course. I don't use it, but I like the comfort of knowing I have a car in the garage. Like a long forgotten Barbie doll in the toybox you cannot let go, he he. Btw I just bought myself a Jesse doll (toy story) from Disneyland☺️ . Carried it in my hand all the way home like a 5 year old😊.
Each of us have our own way to kill time, as my favorite philosopher Feyerabend named his biography book!! Tv is unbearable for me, I never turn it on. Like the silence of my home..but again that's me. İ let go of trying to pass time with things the minute I was announced disabled and sent home. İ got closer with my computer, the virtual world replacing the physical one.. Discovered youtube in the real sense. İ always wanted to take professional make-up courses fir instance.. Youtube has some great videos on that..and from the pros! İ figure they earn more from people watching their videos than actually make up on them😳.
I have been getting compliments with my make up & have received a pro makeup table from FIL!!!here take a look!!
I am happy to have improved my make-up skills, for which I never had time before.. Also memorised the taxi station's number & made friends with a couple of them as they take me whereever I want, so far..
Btw woke up this morning not feeling up to even prepare my own breakfast.. Just logged on here.. You made me get up to take that picture a minute ago. Now will put on my sweats & go out for breakfast by the Bosphorous, having quality time with myself & my sisters here.. Wait for the next photos 😉.
Hugs
Ebru0 -
formygirls - I have not had restrictions on driving, but I restrict myself to some extent because I'm not very sharp. I cut someone off on the highway about a week ago and boy was he MAD (I'm sure it was completely my fault, I don't even know what I did). He pulled in front of me at 60 miles an hour and slammed on the brakes, scared the hell out of me. Now I just stick to local roads and restrict my driving on the highways to the minimum.
Chickadee - best of luck to you as you start WBR. Usually they pause your chemo and put you on a big dose of dex.
Robin - there is a thread or two in the archives about Ommaya port. Try the search function for Ommaya or lemptomenigial (sp?) mets. It is rare, but there are posts and info about it on the boards separate from this thread. Sending you huge hugs...my neurosurgeon talked about that being a possibility for me at one point and I always thought it sounded scary (my spinal fluid was clear, so I didn't end up needing one). Anyway, you are very brave and I hope you know we're right there with you.
Ebru - THANK YOU for the support and cute photos. You are awesome. Enjoy your breakfast by the Bosphorus.0 -
Local Aveda school gave me a free trim: 16th inch remaining. It was such a mess to let it fall out.. Its a relief and I fell back on lessons learned fro chemo fallout.. Gotta get those scarves out. Hoping decadron padding slips away easiky. people have been so cool.0 -
Had my follow up brain MRI yesterday for my lesion which had changed probably due to necrosis. The lesion is the same so they have decided that the change in it was in fact necrosis and not new growth. It was such a big relief.
I pray and hope that many more of you will receive this type of news in the future.
Thank you for being there for me.0 -
Nancyh....thank you for the reading tips, it really helped.
Left foot....WTG!
I meet with the surgeon on Monday...will be getting an ommaya port inserted and a shunt to relieve the pressure in my fluids and to get rid of this miserable headache. Started back on the prednisone yesterday, so hopefully some relief is coming...and soon.
Hugs,
Robin0 -
Have you had any success with the Tykerb? I too am on Herceptin every 3 weeks. In August I had surgery to remove 3.5 cm tumor in brain lining under parietal lobe. Gamma Knife followed to radiate the surgical area and remove 2 small cancers that were deep in the cerebellum. I will be going back for another high contrast brain MRI in December. The brain doctor says that he will zap anything that shows up immediately and hopefully this will control the cancer in the brain. He says that the Tykerb MIGHT help. Am still waiting for it to show up in the mail. What are the Side Effects of the Tykerb? Has it helped you? Thanks, Beth0 -
Shoofoolatte-
I am on both Tykerb and Xeloda. I have been for almost a year. I was diagnosed with brain and liver mets in Nov 2012. I had to have gamma knife on two lesions in my brain in Dec 2012. One of my lesions is completely gone and the other shows up only as necrosis. My liver mets are almost non diagnosable via tests. So the combination of Tykerb and Xeloda is treating me well. I can't tell you which is doing more work. I have had no new lesions in my brain since diagnosis nor have i had any more in my liver.
the combination of Tykerb and Xeloda leads to tremendous diarrhea. I have fatigue but don't we all. I do get a rash on my face and torso which is attributed to the Tykerb. Other that that I don't really have any SE from the Tykerb. These two together are quite tolerable in terms of SE. There are SE but nothing like A/C taxol/herceptin. I do get monitored for heart function but I would guess they are already doing that for you since you are on Herceptin.
I am on Xeloda and not Herceptin because my heart function decreased from 60% to 35 while on Herceptin.
Hope this answers some of your questions0 -
Ditto to what leftfoot said i was on the x and tykerb for 18 months when i got skin mets switched off x but kept tykerb it does cross blood brain barrier and my brain mets have all been small and 1 at a time so they can do it with srs rad onc says it cause the tykerb is working. the diarrhea is from the tykerb what found work really well for this is shredded beets with a little lemon juice eat a tablespoon or 2 a couple times a day and avoid fried foods and salads it's your gallbladder causing it if ya have any other ? u can pm me
love and healing light to all! chris0 -
HAIR: Apparently there are no barbers licensed to shave here. Funny huh? The very short trim irritates bc it scratches the hats. So DH will shave my head. RO says hair will grow back in 3 months and I prefer NONE to this stubble.
It crossed DH's mind to do his too. Maybe at TG WHEN RELATIVES COME. They love that stuff.
I heard about fatigue, loud and clear. But you know the stuff that really gets me psyched, the granddaughter or going to the dog park usually overrides " fatigue".
The middle age butt is moving like molasses!!!0 -
Hi, ladies. I'm new here and wanted to post a question about brain mets. I was diagnosed with MBC in February of this year. Mets to the brain, liver, lungs, and bones. I had a number (10 or so) of small lesions scattered throughout the brain, so my doc thought WBR was the best bet for me. I was also put on Tykerb, Navelbine, and Herceptin for cancer in the other areas. The WBR got rid of the existing tumors, but since February new tumors have developed. I was switched from Navelbine to Xeloda in May due to side effects from Navelbine. So now I'm on Tykerb, Xeloda, and Herceptin. I just found out yesterday after a recent brain MRI that the tumors in the brain are still growing and my doc has recommended a 2nd round of WBR. She said the tumors were too numerous and spread out for gamma knife.
It seems to me that we are now buying time. The Tykerb/Xeloda combo isn't working on the brain mets. I've heard something about IT (intrathecal) Herceptin, but I believe it's only for cancer in the brain and spinal fluid. Does anyone know anything about this? Or does anyone have any other suggestions? Thanks!0 -
Hi Daney,
I am sorry there has been no answer to you yet. I think this must be because there are so few patients on IT Herceptin. I may be able to help some. My daughter also has had mets to the liver, bones and brain (not lungs). She is also on Tykerb, Xeloda and Herceptin and she was one of the first patients at UCLA and then at Cedars, to have an Ommaya port placed and be given IT Herceptin. She is still on it every three weeks. She has done very well on it. It was given because she had developed leptomeningeal CA after WBR. We were told that it was only for leptomeningeal CA but I have since learned from two men who took their wives to Europe for treatment, that they are receiving the IT Herceptin for lesions in the brain tissue as well. It was given in larger doses and seemed to be working well, although one developed some serious complications that may or may not have been related to this dose. They used to post on this thread but I believe they are not on this breastcancer.org site much now. I think they are now on BrainMetsBC.org now. You can PM me for any questions.0 -
I wanted to ask a question to those who have done WBR. Did you have fatigue and did it get better?I completed 10 txs a little over two weeks ago. Since I started WBR I have not been able to get of bed because of intense fatigue. I have been on non stop chemo since Feb 2012 and I am currently on Xeloda, tykerb, affinitor, Herceptin and Zometa. This probably adds to the fatigue since my body is so beat. Things have become so bad that I am thinking of calling hospice but cannot bring myself to make the call. People have worked through WBR and I have been bedridden for a month. I know it is my decision and am questioning why I went through this just to give up so quickly. My family wants me to continue tx. I am 42 and have two young girls. My QOL just sucks right now. Sorry for this downer post.0 -
Formygirls,
I have not had WBR, but Gamma knife. I am now on Avastin to shrink the necrosis that the radiation left in my brain. It cannot be surgically removed without major QOL complications. I just wanted to let you know that I am fatigued as well...major fatigued. I have received right sided weakness and pain due to Avastin because of the movement in my brain (plus still no right sided vision). Anyway, I understand the "down post" I get it. You're not alone. I am 34 with two kids under 5 and I am tired! Our bodies have been through so much. Just offering a a cyber shoulder. I have been down for months, but still feel some sort of positive feeling deep down somewhere.0 -
I didn't do any chemo while doing WBR. Finished 15 Tx two weeks ago. I'm getting scans now and will probably be back on Gemzar unless my scans show something. I know I don't have the same profile as you formygirls, but some days are much worse than others and sleeping is what I want. Others I try to putter around and do things.
I will say that when I was on Afinitor I was pretty useless. You are on so many I imagine your body is really trying hard to cope.
I hope you onc can give you some relief and get you on your feet again. I hate feeling useless.0 -
Formygirls you have been thru so much. I pray the fatigue eases up. You really desearve a break. Don't give up yet!0 -
thanks for your support Jilly,Chickadee and Barb. I think my SE are not usual for WBR and my body is just tired of non stop chemo. Over the last 18 months I have four diff chemo combos, 2 gamma txs to brain and 1 WBR to the brain. I feel useless now.I am just occupying a space on the bed. But If my body allows, I have decided to wait till my early Jan scans before deciding to call hospice.my physical body is tired but I do not want to spoil the holidays for my girls. I do not want to leave yet so I will hang in there till Jan. I am doing ok with low pain otherwise. The intense fatigue is my only problem and ritalin is not helping. Last 2/3 days I have started walking 30 mins in the bedroom slowly. It leaves me exhausted but otherwise I do not get up. I also use lumonsity.com to get brain cells back. I try not to post to often because I realize everybody wants positive spirit and stories and I am not one of them. But I get very lonely and sometimes need to vent. Today I climbed down and for the first time am sitting in my hammock in the backyard watching Netflix. I live in San Diego so can do that. Thankyou all.0 -
Formygirls I don't know what to say other than I am thinking about you and hope that you can work through the fatigue. I hope you can enjoy the holidays and that being with your loved ones will give you some energy. Please try to get outside more.
Thinking of you.
Monica0 -
thank you Monica. I enjoyed sitting in the hammock today and will try to that daily if I can. I hope I can turn it around as I am greedy and want more time with my girls. All of you ladies give the mental strength to wake up another day.0 -
formygirls- Just hugs. I am glad you got outside and hope you can enjoy that CA environment more. Take care of yourself.0 -
Foamygirls hang in there enjoy the weather and your hammock its the little things that bring smiles to our face chickadee i have my mri today hhope it goes well do you want to try and get togeather after thanksgiving ? love and blessings to all0 -
Formygirls, you can be greedy. Are you kidding me? And you will turn it around! I have faith in you.
Can I lay in a hammock beside yours? I'd like that! Especially on a day like today in Canada.....it's freezing!!!
You take care, and keep posting. We are here for each other, so post all you want......positive or not positive!0 -
Just an up date… at least 12 lesions were found in my brain in early August, with scan showing the rest of my body disease free. We decided on WBR at low doses spread over 20 treatments, which I finished in mid September.
On 10/22 I had another MRI of my brain. Most of the lesions were gone. At least three of the largest were still visible, but had decreased in size by more than 50%. I had a scan of my spine for leptomeningeal metastasis in early November that came back clean. The radiation oncologist gave the impression that these results were better than expected.
I’ve continued with Herceptin infusions every 3 weeks. A couple of weeks ago, they added oral Tykerb because it can cross the blood-brain barrier and will hopefully contain the remaining brain lesions and prevent new ones.
I go back for follow-up brain scan in January - that determines where we go with continuing Tykerb, gamma knife, or something else.
During WBR I lost all my hair and had some skin peeling, but the radiation was otherwise a breeze and I have continued to work full-time throughout treatment. I’v been asymptomatic from the cancer, so now its just dealing with side effects from treatment
Medical oncologist was concerned about digestive SEs from Tykerb but so far they haven’t been too bad – some abdominal pain but not much diarrhea. I am getting lots of tiny pimples on my face and arms that are not just unattractive, but also uncomfortable.
Four to six weeks after WBR, I began to have some serious fatigue and loss of appetite. I’m now ten weeks post-WBR and it’s not getting worse, but most days it’s not better. I’m still working full-time. I feel that work forces me to stay active and focus outside of the cancer, but I’m starting to fall behind. I may be having some mild cognitive decline, but it’s probably related to the fatigue. The doctors don’t give me any idea on whether the fatigue will get better or worse or how long it may last. So, I don’t know if I should apply for medical leave or reduced schedule or for how long.
I still don’t see even a hint of hair regrowth and it’s been more than ten weeks since WBR ended. Anyone have any experience on if or when my hair will come back?
anne0 -
Tx anne-
the pimples are "tykerb rash". I have had a bad case for the year i have been on Tykerb. You can treat it some on when it is at is worst with some prescription medicines. Ask your oncologist.
Hope the fatigue eases up and glad you had good results.0 -
Oh, and I meant to also say that usually a tykerb rash is seen as an indicator that the medicine is working and is a good thing.0
