Brain Mets Sisters
Comments
-
Joining in...... I just had an episode of being very unbalanced and severe vomiting that landed me in the ER. It turns out that I have 3 areas on the brain, the big one being in the cerebellum (sp?). I started WBR, have steroids and nausea meds to keep me steady. Ugh! I wasn't ready for this, but I'm glad I found this thread - it has good information.
Jenn
0 -
Jane 1967,
Sorry you have joined the brain mets club. I was diagnosed with brain mets in May this year. Had WBR and now on Xoleda and Tykerb. I see you are HER2 as well so you should be able to get tykerb. It seems to be effective for a lot of women. So far i am doing well on it. Please post if you have any questions.
Lassman
0 -
Jenn3,
Just saw your e-mail. Welcome to the club no-one wants to join. WBR itself is painless and straigtforward. SE's were fatigue/hair loss after 3 weeks and tingly scalp/red spotty forehead. Not too bad (most SE's wore off after a few weeks). Hair should grow back but takes its time, usually 3 months before it gets to the bristle stage!.
Lassman
0 -
Hi ladies- another fellow brain metter. I had a scary incident happen on Christmas eve, My entire right side of my body was having tremors, I had no controll over that side of my body so off to ER we went. The first Dr said it may be a seisure and after the CT scan it was showing 3 spotson my brain. They wanted me to spend the night and get a MRI in the morning but I had a house full of family coming over. By 1am the tremors had stopped and they were ok with us leaving and following up with myu neourosurgeon in 1-2 days. I did that and started to get the run around about it having to be an outpatient MRI and they had to wait for the approval and couldn't tell me when theymight receive the approval. So after many tears and pleading with someone to help me they were able to get it scheduled for Thursday. My right arm and fingers are not working correctly (very weak and no fine motor skills). I just hope and pray they will be able to repeat the gammaknife procedure again. if in fact there is something going on upstairs. I will keep you posted.
Jill
0 -
luvmyself,
sorry to hear u had to go through this ordeal on christams eve..i sincerely hope everything turns out ok for u, keep strong and keep positive..wishing u and your family all the very best!
0 -
Jenn 3 -- this thread has been fantastic and I am so glad it got started. Sorry you are here but you may have already found that while the brain mets thing sounds really scary, there is a lot in th emedical arsensal they can do.
Luvmyself -- they sure can make things difficult! We should not have to plead for what we need. I think gamma can be repeated. I think thats one of the reasons it's such a good procedure. Not sure though
To all brain mets sisters -- here's to faith, hope and strength in 2012. It's all we need.
0 -
This has been a very helpful thread. There are times when the information we ar given is so overwhelming that we need our sisters to lay it out for us. This is sure one of those times for me. I want to thank everyone for there input and support.
Woke up in 2012 with my hair falling out, need to find an open beauty shop for a shave. I told my husband last night that my hair hurt, I guess that should have been a clue. LOL
I agree, faith, hope and strength in 2012, and some good times too!
0 -
Two things:
Today is first day w/ no decadron. Hope fatty deposits in face and neck die down.
I want everyone to please ask more about gamma knife. Just push a little more, ask for neurosurgery consult ( they do gamma) . I just feel so fortunate I want y'all to have it if possible.
Happy New Year to my Brain Sisters (Sara Bellem, Fran Telobe, Oxy Petal, Pari Etalobe)
Love,
Kathy (Large Cranium) Tumor Head0 -
K-lo: let me know how long it takes to lose the moon face of steroids!! I'm looking forward to that day!!!
Everyone: I have extreme teeth sensitivity to cold. Did you have any dental changes during radiation? Also, my face and cheeks are getting red and flushed. Do u think from steroids or the radiation?
This WBRT radiation is SOOO different from breast radiation. It's hard to even compare them!!0 -
Survivor2Be,
I lost my moon face about 2 months after being weaned of the dreaded dex. Was great not to look like a hamster with cheeks full of nuts for a change!
Did not have any teeth issues but know of a woman who had very sore gums after radiation treatment. I had flushed face and cheeks which was caused by the radiation. Also got awful acne across my forehead.
Good luck with your treatments. So far it's been quite effective for me (7 mets now only 3mm spot left). It has been six months since my WBR.
Lassman
0 -
Tomorrow I'll have my 3rd radiation treatment and will be calling the onc to discuss exactly what went on in the hospital. I also want to talk to him about the gamma knife - why not?
Thanks for the info - many love and hugs.................Jenn
0 -
Hi and Happy New year everyone! Well just checking back in. I got my mom the appt at MD Anderson finally the day is tommorrow at 8am. I'm really praying that they can do something for her there. She's been doing ok with the pain med for her headache and the steroids. But lately shes been really weak in the legs, it's hard for her to get up from the chair or toilet, she already fell twice. Really scared me cause I thought she broke her leg the first time. I just hope this is a side effect from the steroids and not the cancer getting worse. She's taking 4 mg 3 times a day of the steroids, has anyone else gone through the balance issues? Also she's just been wanting to be in bed and sleep all day even though she says she really doesnt get any sleep. Like I said in another post she already had wbr and her onc here didn't recommend more not even gamma so I'm hoping tomorrow we get better news and that theres some type of treatment available for her. I'm really scared for my mother I love her so much and this is like her last hope at md anderson...of course God has the last say and we have alot of faith. I pray for a miracle everyday. And for a cure for this stupid horrible nasty disease!
0 -
Lore81 - I'm no expert but I do know that steroids cause weakness in the legs/hips etc. from my daughter's experience w/it. Of course it could be from other things too, but you can check and see. If she needs the steroid for swelling then she has to stay on it but if the swelling has gone down then try to get her off of it asap and do it SLOWLY. Always check w/her onc. first but we have found steroids to have terrible side effects esp. if it's long term use of them. Also, I would ask your onc why he isn't recommending gamma knife of some sort. You can always get a second option too. My best to your mom.
0 -
Hello ladies and Happy New Year- Just an update- the MRI came back with swelling on the left side of my brain which is causing the weakness and numbness in my right arm and hand. I started on the lovely steroids today and hope it helps the swelling and arm issues. Dr said that the episode I had could either be a tumor dying or regrowing. Hoping for the best.
Jill
0 -
Well the visit at md anderson didn't go so well. Dr said the same as the other two here. Too many brain mets for gamma knife and more chemo would just make my moms situation worse and they say why more chemo if it's not going to reach the brain anyway. He said she had basically 2 choices. one to see if she might qualify for a clinical trial,which he didn't guarantee anything and plus theres a chance that it could take more of her energy away and could get weaker,like theres a chance that it might help, but she would also have to live in the Houston area or be able to travel at least twice a week and that too could bring her energy level down. And the other is to look into hospice which he said are very helpful in having the patient feel as comfortable as possible and pain free, and try to bring up her energy level. It was really hard for my mother to make a choice but with no guarantees from the trial and knowing they still have to see if she qualifies she decided to not look into the trial thing. We came back home, she is doing ok besides the weakness in her legs. We are gonna wait a little before we look into hospice.The dr prescribed a physical therapy that should help the weakness in her legs. I'm so scared and don't know what to do. This is so hard. My mother was in tears when the dr gave us a few minutes to decide if she wanted him to look into the the clinical trial or not. She asked me" what should I do?""what do I do?" I was in tears and so confused I don't know. I couldnt tell her anything. I didn't want to decide for her. Of course I want her to keep fighting and she does too but again I'm not the one that is sick and how bad she feels and weak she is. I don't want her to get worse and her life to get cut shorter. She said what if instead she feels weaker and shortens her life if she decides to get more chemo or anything so she's just going to leave it in Gods hands now. She says if that's what God has in his plans than thats what it will be. I love her so much she is one of the stongest persons I know. During this whole time a lil over a year now that shes been fighting this she has not gotten depressed or anything. She's the one thats always worrying about everyone else and telling us not too worry about her that she will be ok. She is the best mother in the world to me and all of us her children. I just can't understand Why this is happening to her. She was doing fine with her chemos all year no other mets anywhere besides the skin mets at the begining that the radiation got rid off. She hasn't had hair since the begining since she has always been on chemo. I'm the one that takes her evrywhere to her appts the one that gives her her medicine, I help her shower and everything. I love her she's my mother and I wouldn't mind helping her and doing this the rest of my life as long as she is still here with us. I'm pretty sure she too wouldn't mind being bald the rest of her life and on chemo as long as she could still be here with us. She tells me " if I could live just a few more years I will be happy with that." It breaks my heart that this disease is taking her away from us little by little without us being able to do anything to save her. I feel helpless. I just don't know what else to do. I'm mad. I hate cancer! Why did it come into our lifes? Why does it exist? Why does it take so many innocent peoples lifes? I'm sorry for just going on and on but I had to let it out somewhere. I felt like yelling at the doctors for not being able to do anything else but it's not their fault. I hope they find a cure for this soon. And I wish everyone on here good luck and like someone else on here said faith, hope and strength in 2012.
0 -
Hey, Luv, I hope the tumor is dying.
LORI, no answers. For myself, regarding life tragedies, i have to think of my sister-in-law losing 2 term babies to put things in perspective but it only works for a little while. I don't want anyone to leave and there's no way to accept losing a mom. I'm sorry MDA didn't have a better answer.
love and strength to all.
Kathy0 -
Can't write anything, can't see through my tears, Kelly
0 -
Lore
So sorry to read about your mom. Just wanted to say that you are a wonderful daughter and are supporting her so well. I hope someone is looking after you too.
Hugs to you both
Laurie x
0 -
So sorry for your pain and sadness - I think hospice could help your mother a lot in improving the way she's feeling and making her comfortable. It is such a hard thing to accept, please accept my sympathy.
Barbara
0 -
What a terrible set of choices. I am so sorry. I still don't get it -- I have chemo going directly into the brain. Maybe it's the type of chemo they can't do? I'm sre they know what they are saying/doiing. Hospice can make life quite pleasant. I am so sorry Lore!
0 -
Lore81-- I'm sorry about your mom. No one knows how much time they have, but make each day count, thinking and reading positive material. One day this disease will be a thing of the past (Isaiah 25:8) In the meantime, continue to show your love for her...its more powerful than any medicine!
0 -
Lore: hugs and prayers going to you and your family!! <<<>>>>
Just did day 10 of treatment and my hair is startIng to come out. Debating if I should just shave it instead of just pulling it out in clumps! I can never keep my hands off!! It's like picking a scab!!0 -
Lore - I am so sorry to hear about your mom. I wish I had the magic answer, but I don't. All I can say, is what I'm trying to do now, is one day at a time. Even that gets hard, but it's all we can do.
(((hugs)))Jenn
0 -
Lore, You have just expressed what I know will be my fate one day. My heart goes out to you and your family. This is truly awful. No one should have to make such choices, no one should have to see there family in dour such pain. I hope i have raised my girs to be as strong as you are, these are terrible choices. i'm sure which ever road is chosen it will be the right one for you. I have to say for me it would be hospice, but i would honor anyone who chose to keep fighting. Sending all the positive energy I can muster. Wishing peace for you and your family.
0 -
Dear all,
Got the results of my latest brain MRI yesterday. Not good news. It showed progression. 4 tumours have returned. Quite a contrast from the October one which showed only a small 3mm spot left. I am gutted as I really hoped the Xoleda and Tykerb I was on would work for much longer but it seems to have failed me. I have been taken off the drugs and my onc will consider what's next in two weeks. He is seeing if i can get on a trila at Oxford. Feel pretty doomed at the moment.
Lassman
0 -
Error. I meant a trial at Oxford!
Lassman
0 -
Oh lassman, that sux. I guess I thought SOME xeloda was better than none even now. At least your Se's will decrease.
a few weeks ago I had gamma on 8/9 lesions. They tried yesterday to do #9 but my silly head is too broad in that area to get a good frame fit. However, the MRI showed no new lesions. I was really fearful of that.
So now linear accelerator to last brain lesion. They check CT today of brain for mask fit and check spine too. Very grateful for the great care I'm getting. Kathy0 -
K-lo,
True, at least I will lose some side-effects. I think I would rather have SEs and no progression thought. Not sure what course of action they will do next and not convinced i am getting the best care. They seem reluctant to do more radio, and gamma knife may not be available. Have to wait and see what they say on the 24th after CT scan.
Lassman
0 -
hi lassman I am sorry to hear about the progression, I wonder why the xeloda tykerb combination did not work..that really sucks..!! do u take any AIs, ie femara or arimidex..? why did the doc not put u on herceptin..? i am sorry i am asking u all these question which is probably not comfortimg but just want to know what was the doctors rationale behind this treatment..? has the doc thought about gamma knife..? i really hope u r able to get on to this trial and get some very good results..in the mean time try not to stress yourself out too much and get some rest in. try some deep breathing and relaxing yoga as i have heard these are really beneficial..hang in there..and keep positive..((hugs))
0 -
Please help!!!!
I am on here for my best friend. Diagnosed 10/6/10 with triple neg stage 3c grade 3 cancer. 2 cm Tumor 3cm with collarbone lymph involvement. Red devil chemo, lumpectomy, and 3 day rads followed. Starting having brain ets symptoms early December 2011---so scared of recur confirmation that she didn't go in until yesterday am---rushed to er--- could not walk, left eye would not shut, vomiting, arm numbness, etc....
So, here we are now. Brain lesion 3cm as well as Leptomenengel metastases. Still waiting on results from ct of abdomen, MRI of spine and lumbar puncture. Does anyone hav any experience with lm's? I have researched all day(live out of state and cannot ly in until Saturday) and need some reassurance ....thank you and God Bless You All.0
