Brain Mets Sisters
Comments
-
Biotene also makes toothpaste, an alcohol-free mouthwash, and gum for dry mouth. It is very gentle and doesn't aggravate the tissues of my mouth or tongue.
0 -
That's good news! I think I may even sleep tonight!! Hope you do too!
0 -
Bruburn, I was told the.same thing: 2 years. So I'm 17leaving months in. You know its not necessarily true but it sticks with you.
My friend Deb told me that she knew a woman who lived 10 years w brain Mets. She was old too , in her 70s.
WBR has the advantage of hating those unknown Mets so whichever you get, there are things to be positive about. I cannot tell foe sure.but.I think.my brain is reacting to the treatments now. I seem to freeze up while trying to think out loud.....people have to wait.
Bruburn are you on steroids at all?0 -
Thanks for the replies ladies! I am still in shock/hell right now...but I will find my way. I see my onc for a treatment plan tomorrow.
I have started Dex 16 mg/day. Perhaps that is why I am on the boards right now...
Hugs to all, B
0 -
Huh -- expiry dates. Don't believe in them -- not until you are with hospice. Just KEEP BELIEVING! I don't think they really know.
0 -
From my experience of 30+ years working in healthcare and in respect of predicting death, IMHO, most docs know diddly squat!
It ain't over 'til it's over.
Lx
0 -
Bruburn,
wow that's some dose!
Med onc put me on 4 mg 2xday x 5 and then 4 mg/day.
When I got to neurosurgeon, he said, U don't need that much. Said 2/day, now none. O hope you can get a neurosurgeon. We all deserve that.
K0 -
I just finished WBR. SE's - the fatigue is hitting, but not until the afternoons, but it's welcome because my sleep habits have gotten weird and now I just sleep in about 2 - 3 hours time periods getting about 6 hours a day. My legs started to feel a little weak yesterday, that's new. My mouth was full of thrush. The dr prescribed a liquid medicine to take along with Dukes Solution and it seems to be working, thank goodness. My taste is a mess. However I have found that fried eggs are good, dry toast with jelly and of all things Lucky Charms cereal work.zoh....and canned manderain oranges are soothing. I have also made sure to continue to as much protien and vegetables to keep my energy up, it's not fun but I feel like I need to feed my body because I lost 15 pounds in 2 weeks which scared the bejeezes out of me. I use Biotene toothpaste and mouthwash 2 -3 times a day and it's so soothing to my mouth and does help make the dry mouth better. I also sip water all day to keep my mouth clean. THE JOYS OF CANCER AND WBR!!!
RE: steroids, my RO said that the WBR does causel dry mouth, clogged ears, breakouts, burns, uneven skin and all of the other SE's mentioned by all of you earlier.
Jenn
0 -
Jenn3 -- so glad it is behind you. The taste thing -- go with what you think will work. I've had some pretty weird kicks from rice-and-peas to just jello. the weight loss is scary. Just delighted you are on the other side!
0 -
Jenn.
Glad this part is over. Keeping you in my prayers.
B
0 -
Bruburn -- Sorry you have to deal with this. Mine were discovered almost a year ago. Still in shock! The WBR is still working. Keeping you in my thoughts!
0 -
Hi ladies- just an update on my situation. looks like the edema is still there so I will continue on the steroids at 6mg a day for 2 months and rescan. Neuro dr. is not sure if it is old or new tumor and wants to see if the steriods will help the weakness and numbness in my right hand and arm. Not having fine motor skills is very frustrating! I have a really hard time with the se's from the steroids but this is what I have to do!! The emotional rollercoaster is very hard to deal with along with the insomnia. Dr has given me ativan for that. Thanks for listening
Jill
0 -
Bruburn - 16 mg of dex is a pretty high dose. I would ask the doc if you can lower that amount asap! The long term side effects of dex are bad and the sooner you can do w/o it the better off you will be. As soon as you are able, start taking physical therapy for the weakness. My daughter wasn't told of the long term side effects and had we known them things may be different now. My best to you all!
Joyce
0 -
Hello Ladies, I have been reading through your posts and you are all very brave warriors. I have the utmost respect for you all.
I am taking care of my 74 year old mother who has recurrent triple negative breast cancer. She was initially diagnosed about 6 years ago. She had lumpectomy and radiation treatments. She remained disease free until she presented with symptoms in November of 2010. Her right hand began to cause her great pain, especially her fingers. Who would have guessed that this was the first sign of recurrence. A CT scan of her shoulder showed the cancer mass in the brachial plex nerves under her arm which were squeezing her nerves. CT also showed tumors on her liver and one on her lung.
She had chemo (can't recall the number of rounds 4 or 5) and her tumors were responsive but the chemo was very tough on her and she spent much time in the hospital. All was good from March through November 2011. Then the back pain began as well as weakness in legs. Back in for PET scan which showed tumors on the spine and also back in her liver. She had radiation for the largest tumor on spine so that she could get into rehab and get her leg strength back. She had began XELODA and was doing fine tolerating it. She went for her regular followup with medical oncologist and mentioned that she had begun seeing double sometimes and she had felt slight nausea (not during XELODA dosing but on off week). Dr. sent her for Brain scan to rule out mets.
Well, they were there and plenty of them. If I had to guess looking at the scan, I might guess 8 or 12. The largest back near the optic area of brain. So, back to the radiologist they sent us yesterday. I was hoping he would say they would target the one lone mass near her optic region but he said WBR due to all the other small ones. You know at this point, her symptoms are minor. I only think her symptoms acted up because she was weaning herself off of dexamethasone that she had been on since November's spinal cord compression discovery. She is back on the dexamethasone (which she hates) and planning to begin WBR on Tuesday. I don't know if this is the best thing for her anymore. It sounded like a reasonable plan in the oncologist office yesterday. But, I look at my Mom and I think that it might be more than she can handle. She lives alone with her little Yorkie and her 2 cats. She is to have 3 weeks of WBR then go back to her Medical Oncologist to begin with the XELODA again. What to do, what to do?? Spent a lot of the day reading various sites on WBR and it is scarey. Most of the sites I read were for Lung Cancer but since this is a breast cancer site thought I would come here.
You know this is not my 1st, 2nd, or even 3rd close family member battling this ugly disease. My brother battled staged 3 Non Hogkins Lymphoma over 20 years ago, it was a very tough chemo protocol but he is fine! My husband battled adult Rhabdomyosarcoma which was 6 months of heavy chemo, then 7 weeks of radiation, surgeries and a recurrence that resulted in him having a partial lung removal and thank God that was over 12 years ago and he too is fine. My dad battled primary liver cancer AFTER having a liver transplant and he was fine until they attempted the "radio frequency abalation" to try to stop his liver mets. I believe that was what hastened his downfall with his disease. So, I worry about this WBR and what it will do to my mother's quality of life.
Thanks so much for listening. Mostly, thanks so much for sharing your stories. It really helps so many to read through them!!
Laurie
0 -
WynGator -- wow an awful lot to deal with! Those steroids are nasty but they do the trick. WBR for her age might be tough...ear complications...hope that rad doc is very attentive! Thinking of you and her -- tough to watch a Mom go through it.
0 -
Hi my friends,
I have had my dex reduced to 3 tablets per day (total of 12 mg/day). I hav an appt with an SRS team on Tuesday...trying to avoid wbr.
CT scan yesterday showed progression in liver and early metastses in lungs (inflammation, no nodules).
Med onc says e willtake care of the brain first and then get backon chemo.
I'm still in shock...but ready to do what I have to do.
Thanks for the support, B xo
0 -
Thanks pq2 -- the more I think about things, the more I think I would like to talk to my mother about taking her for a second opinion. I realize that no doctor is going to tell her what she really wants to hear "that if you do THIS one thing you are guaranteed to be cancer free" ... but I can have someone else perhaps at a larger cancer center talk to her about what her other options might be. Can she say NO to WBR now and reconsider and get it perhaps a month or so from now if her symptoms worsen? Does saying no to WBR now mean that she will definately get headaches as the tumors grow? I just feel like things are moving too fast. She went from feeling great last Tuesday to being scheduled for WBR this Tuesday. Thanks again for your kind words
...Laurie
0 -
Brubrun
Tough, but now you know what you are dealing with and have a plan. Good to hear the dex has been reduced. Sometimes I think the SE's from the stroids are worse than the chemo.
Hang on in there. You know we're all here for you.
Hugs
Laurie x
0 -
Wyngator, the dex and wbr really can help with those headaches but to have it before they start might be the resl aim of the oncs. Hope they do get things under control for your mum really soon. Xxx
0 -
Wyngator: I would really go for a second opinion if you are concerned. I wouldn't rush into WBRT. I think the docs have protocols (especially the amount of steroids). I completely agree that steroids are bad mojo! So talking to other resources and coming up with an individualized plan can really give you autonomy and peace of mind.
The best question my consulting RO asked was "what is your biggest fear?" to help me decide on radiation or no radiation.0 -
wmgator - I am so sorry for what your mom is going through, thank goodness she has you in her corner. I know what you mean about things moving fast. They found brain mets late on a Wed while I was in the ER, had WBR first thing the next morning - thurs. I was so out of it I didn't know what was happening, this was all decided among my family and doctors. One I had the time to digest it I had already started and probably would not have changed anything, but it was all so fast and overwhelming, making it much harder emotionally. It's not too late to slow up, catch your breath and ask another opinion if it makes you and your mom feel better and help understand whats going on.
Good luck and I'm sending both of you a HUGE (((((HUG))))) Jenn
0 -
Highly recommend the big cancer center second opinion. My treatment was a combo of my doc and Chapel Hill's. And going there was my doc's idea. There are good ones in FL or or aren't that far from MD Anderson in TX or Chapel Hill up here.
0 -
Omaya Port
I'm writing for my daughter, age 40, who has been going to UCLA for 3 years. She has mets to the brain and leptomeningeal membranes and has been receiving Herceptin thru an Omaya port in her head every three weeks with good results. Her next treatment is due tomorrow but UCLA called her this week and told her that their negotiations with Blue Cross had failed. If she wants her treatment this week she needs to bring $15,000.00 in cash to pay for it. And that is just for 3 weeks! It seems we will have to change hospitals and oncologists so Blue Cross will pay. The problem is that in all of UCLA there are only 2 people who can give an Omaya port injection, so we don't know how to find a hospital that can handle it. Is there anyone in this great group who knows where there are practicing experts in the Omaya port in the greater Los Angeles area? Please help. Thank you.
0 -
Question: once y'all finished your WBRT, did anybody's vision change? My eyesight is really blurry, like before I had my LASIK. I just finished treatment like 5 days ago, and I had no tumors (removed by surgery). Do u think a tumor could grow that fast or that it the dryness related to radiation and meds? (I'm on herceptin and tykerb, which makes my skin really dry).
0 -
Sbidalia, haves you checked directly with BCBS to see which facilities are available? I would think that either Cedar's or City of Hope would be able to do an Omaya infusion. It may take a few days to get set up. This sucks! I HATE changes especially with my treatments and really you do not need the added stress. Let us know what you find out. (((hugs))) to you and your daughter.
0 -
Survivor2be,
Yes, I have had vision changes - don't know whether the vision itself has changed and become weaker or whether the eyes just tire more easily and the effect is blurring - not sure. It does seem to have improved a bit recently, hope yours does too.
Barbara
0 -
Has everybody been told that they HAVE to take steroids and what the complications could be if they don't? I guess I am different in that my mets were found on a scan before they were symptomatic. I argued with my oncologist about taking steroids and he told me to take the full dose on the first couple of days. Then halve it if I felt OK and increase if I had any pain. I took one on the first day then felt Ok, so never took any more! I had no headaches/sickness at all. He did question me again last week and said he was amazed that I was coping so well and ready to go back to work next week (my 10 X WBR ended at the beinning of December.) I think in my situation not having steroids has speeded up my recovery! but I don't know if I have just been lucky and don't know what consequences could have been if my brain had swelled.
0 -
Interesting...I think they must prescribe steroids because the brain could swell and in your case it didn't. Your recovery may well indeed be easier!
Yup -- vision changes -- but I am told it will change back.
I can't get over BCBS on the omaya treatment for pete's sake! My own onc does it in her office. But I'm in NC. That is utter craziness!
0 -
Have your daughter appeal to BlueCross BlueShield. The Herceptin via this method should not be an issue. If it is just UCLA, then ask them who is approved. They will tell you. This is very exciting to hear that 3 years of treatment has been effective. They are starting a clinical trial at Northwestern for this exact same treatment. Explain to BCBS that this no different than if your daughter was getting methotrexate or another chemo. The cost for the drug is only about $250 per dose (at 40 mg), the rest is for the doctor and disposables, which would be required with any i.t. injection. One 440 mg vial is $2500 to the hospital. I am there to give you support as I just steamrolled to get this started for my loved one ten days ago. 2/9/2012 we find out how it is doing.
0 -
Just finished on Friday my 14 WBR, wooowhooo! Now I'm trying to come off the dexamethasone which has really done a number on me. I have been so not myself during these few weeks. I've lost my sense of taste and am trying to keep up with eating so not to get weak. But I've been dealing with nausea from radiation too.
0
