Brain Mets Sisters
Comments
-
Kathy,
My MRI reports have always said widespread mets. I had 9 to begin with and that number has increased. They do not count anymore and just say " widespread mets". They were not large--all under 1 cm. But I was asymptomatic from April to this month. This month I have headaches all the time which I am guessing are from the mets. So I think it is possible to have widespread mets and no symptoms.0 -
Kathy - I think it's a matter of just exactly where those mets are located, and if there is any swelling around the mets. My RO showed me exactly where mine were located and there was just one that could be causing symptoms. I was able to see them a "slice" at a time. This should help you to understand your situation.
In the case of the brain MRI, I think the pictures tell the story.
0 -
Hello ladies. I posted on this website last summer, but I`ll try to give a brief history. My wife, 45 yo, was diagnosed originally 6/2008 w/DCIS. Mastectomy followed, and all was well until 01/2012. Back pain lead to a discovery of bone disease, as well as lung mets. HER2 +. Taxol, Carbo & Herceptin followed. Declared in partial remission 08/2012, with only Herceptin & Tamoxifen since. Marker had stayed between 11-15 until first of this month - jumped to 50, then 90. Headaches & vertigo started at the same time, and MRI revealed mets "too numerous to count". Finished her last WBR today - 10 total. her prognosis is varying wildly from different docs - one RO said "80% of cases can be controlled w / radiation". Another said this is considered palliative with an outlook of 3 months. The MO says 6 - 12 months, but agrees that we have entered the palliative phase. Tykirb is being set up with insurance, but no other treatments are being offered. Now come the questions: 1) PET 6 wks ago was neg. Was told recently that brain mets do not show well on PET. If that is the case, why weren`t MRIs done in conjunction - would it have even mattered ? At the time of the PET, her marker was 14. 2) If she responds well to the WBR, what is the outlook on the medical therapies keeping them down ? No one seems to want to go out on that limb. She responded well to rad to an axilla mass previously. And #3) this one may be more a question for the DCIS boards: when diagnosed in `08, it was DCIS. No treatment after mastectomy was warranted, and no follow-up besides mammograms. When the bone disease was discovered last January, the oncologist & mastectomy surgeon met with us and explained that when they pulled the original slides to compare to the bone biopsy, that the original cancer was, in fact, misdiagnosed. It was not "in situ" - there was a 3mm outgrowth. We were told that < 5mm "probably wouldn`t have warranted any chemo" and that the pathologist who screwed up was no longer at this hospital. He was apparently notified, however, because we received a registered letter from him with an offer to speak to us about his diagnosis and turn of events. Everyone involved in that seemed very on edge; we simply said that wasn`t our concern right now - let`s focus on the problem at hand. But now, we are beginning to rethink that. My wife fears that her life is probably coming to an end soon, and that some legal advice may be in order. I`m not a retaliatory - type person, but just how serious of an error was this in your opinions ? Thank you ladies for everything - you gals answered so many of my questions in the beginning of our journey and have been great !
0 -
I am sorry that things have been bad. I hope your wife is doing better and excited about finishing WBR. To answer your questions:
Brain MRI is the best way to detect brain mets. Most PET scans cannot detect brain mets. However, I do not think that a few weeks would make any difference. In my case, they have not started WBR yet and they are still watching them and mine are also too numerous to count. There is no cure, so rads will not prevent new mets. Tykerb and Xeloda are two meds that cross the brain barrier. I do not ask the prognosis question from my oncs. I know the reality but do not know when it will end. It is different for everyone and no one can give a definite answer. There are ladies on the board who are a couple of years out. I hope you can focus on the present and avoid thinking too much about the past and the future. It is hard to do but the only way to get through the day. I wish you and your wife all the best.0 -
Thank you so much for the kind words
I am trying to live for the day, but with two small children, one of whom has autism, preparing myself to prepare them is hard without an idea of a timeframe - especially for my son w / autism, as his life revolves around routine. We wish you the best as well !0 -
PNUTT - my suggestion is to not overly-prepare your children. They don't need to worry until you're obviously ill and the timeline is more clearly defined. My brain mets were discovered on 11/5 and I had a course of 10 brain rads. I just had an mri last week and it shows that I am down to 5, only 1 is bigger than 1 cm and I'm taking a tiny decadron dose to eliminate the little bit of swelling from it. My RO says that they will continue to shrink and I'll have another MRI in a couple of months to verify. In the meantime I am taking weekly carbo and my RO will talk to my MO about adding Xeloda, which crosses the blood brain barrier.
There are no real timelines - no one really knows how things will go.
So live life...after WBR I went to Las Vegas for a few days. Then we went to Florida for several days, and we are heading to Hawaii on Thursday. As long as I am physically capable, we are living life and not planning death. I think I'll know when it's time to switch gears.
Hugs,
Michelle
0 -
Help please, I am really looking for advice from others experience? I found out skull mets transferred into the dural lining of my brain on Jan. 11th after having an MRI. My radiation oncologist said that she could keep me stable with pain medication until after vacation. We started our trip on Jan 24th, but ended up booking an emergency flight back to home yesterday because the headaches have become unbearable. My Dr bumped up radiation date to Feb 5th. The Dr says the lining is only expanded by 2 mm. I don't understand why the headaches are so bad. I first started T3's, they worked for about a week, then I started oxycodone and steroids, that worked for about a week or 2, now I have been given morphine, and the pain is just barely being kept down.
My question is, has radiation helped others. I know cancer in the dural lining is rare. I don't know why the headaches are so bad with minimal invasion to the brain. I so desperately want this radiation to work. I am in a lot of pain. Please tell me this is going to work.0 -
Blossoms,
If there is swelling around the tumor then there could be a larger area creating pressure/pain.
I do not have mets in the dura but have had radiation for other brain mets and it has worked miracles. I am praying that you get the same miracle.
I am so sorry you are having such severe pain. I have children who have passed kidney stones and the only med that helped was Dilaudid. Would your MO be willing to send you to the ER for an injection or infusion? It does have the potential for increasing intracranial pressure so MO may not want to try this.
Oddly enough when I was having severe pain, hydrocodone worked better than oxycodone or morphine. I know I should not be suggesting meds and I am sure your MO is doing everything possible to keep you comfortable til Tuesday. I am just hoping you can find some relief until then.
.
You are in my prayers that this radiation will work.0 -
I'm sorry Blossoms...so sorry you are in such pain. They really should be able to come up with something to give you relief. Ask your doc re p hentanyl patches. They give excellent pain relief to some people. it's just a matter of them finding the right drugs or combo of drugs. dont give up, keep after them and insist you are suffering.
0 -
Hi brain heads,
Do you get the impression that younger women bounce back from WBR better than older? I mean 40's vs 50's... I don't feel like reading every note right now, but that seems to have made an impression on me. On my cortex or cerebellum or somewhere.
Forgetting simple things or doing something nonsensical is making me wonder if Im brain-impaired or just a bit in shock. But its nice to allow myself the slack either way. Today I told a woman to call me using my phone so i would have her number. She took the phone and gave it back. Later i looked for the number and realised that the idea made no sense. But you know, I wasn't really ever the sharpest bulb in the drawer,anyway....
I did color my hair, its really cute.... chalk up one for self-indulgence!
0 -
K-Lo, that's a great story. I would have done that kind of thing even before brain mets or GK. More than once (before dx) I would find myself driving down the road at the same time I was furiously digging around in my purse looking for my car keys. And then at the end of the day I'd walk up to my house and try to open the door by clicking on the "unlock" button on my car key fob.
I can't answer your Q though because I haven't done WBR and don't know anyone personally who has--except here.
I can't recall: This is your first time with it, right? Will you have a couple weeks of WBR? I hope it's going well.
Take care.
0 -
Hi everyone,
This thread has been quite. Blossoms, I hope your WBR is going ok. I had a brain MRI Friday and am very anxiously awaiting results. I keep checking my email every few minutes to see if there is any email from my onc! They have probably forgotten and are enjoying the weekend. I have widespread mets in my brain that they are willing to leave them alone if they stay stable and do not cause symptoms. If there is progression, I have to do WBR and I get kicked out of the TDM1 trial for my liver, lungs and bones. This would be a huge bummer as TDM 1 is working well on the rest of my body. My headaches are much better so that it is a relief. So the coming week could be business as usual or total chaos as I do WBR and try to find a new chemo for my liver, lungs and bones.0 -
formygirls i am praying the results are good. if someone had to do wbr and tdm 1 is approved could they do both at the same time?
0 -
Hi Formygirls. I hope the improvement in your headaches is indeed a promising sign. I hope you get a good report! It would be a shame to have to abandon the trial. Keep us posted, and hang in there.
Barb, good question about if TDM1 is approved. Someone else will know the answer, but I'm pretty sure they usually stop chemo during radiation but I know they can make exceptions. Maybe it depends on the nature of the side effects of each type of treatment.
0 -
FMG: Thrilled about your decrease in pain! (So very sorry if you get kicked out of trial)
Surly, trying to open your front door with the car key button is too much! What a sight that must have been. beep beeep beeep?
No WBR for me yet and maybe none ever. I have come away with a very negative sense of how women react to it.
To all: Don't they pause all chemo during rads? But those trial rules can be cold. Our friend had melanoma mets. The trial drug rules said two years only. Her poor husband said, "but its the only thing keeping her alive!" sorry. da rules is da rules. (Note: Ive heard that Melanoma chemos are hard to come by... like, they are ONLY trial drugs.)
curses
0 -
Good thing my house isn't my car, because I'd hate to be riding the couch and get pulled over for open bottle.
K-Lo, did you get the full report about your "widespread mets"? Are you a candidate for gamma knife or are you drawing the line? I hope I'm not prying--too much.
Back to TDM1: I was trying to get into that trial and that's when my brain mets were discovered--incidentally in the screening process. The trial coordinator in my onc's office asked the study lead if they'd allow me into the study even though I was going to get gamma knife and they said no. That led me to believe they do make some exceptions (but maybe not with WBR?).
0 -
I just got the results of my brain MRI. It has stayed unchanged in the last four weeks. My last brain MRI was jan 10. "Compared to the MRI from 1/10/2013, no significant change in size or
number of numerous sub-centimeter metastases scattered throughout bilateral
cerebral, bilateral cerebellar hemispheres and brainstem. "
Given all the options, unchanged was the best I could hope for. Tomorrow I meet with my team ( neuro onc, rad onc ) to decide what to or if we should leave them alone again.0 -
Why are the doctors waiting to treat my sisters brain mets? She had WBRT 10 months ago. She started with 12-16. She now has 4 that have remained. She has MRI's every 3 months. She has been on chemo for the lung mets. Which are now gone. They have no plans to tackle the last 4 mets in her brain. Why? Is there anything they can do?
0 -
formygirls i am so glad to see your brain mri showed no change. so glad for you. continued luck on the tdm 1. keep us posted. we care. barb
0 -
Update. Hospice will be calling to make an appointment anytime. Don't feel any different since I stopped all reatments,but I need to get Atavan and some sort of pain pills for the liver aches (like running stitches) and occasional deep bone pain, and the rare but intense headaches. I am really happy to not be on that wheel of chemo and radiation. Enjoying my hubby, children, sisters, mom and the rest of my humongous family. Went to see Lewis Black with my girlfriend last night. Super fun.
0 -
Surly, I'm not clear, will you nix the Gamma if you can get in trial? Jeez they are fussy fussy. I mean, help a person! Well........ I guess they cant tell whats helping if you have multiple agents, yeah I get that.
WOW, Jodi, you sound great. just now getting pain pills and ativan? You are remarkable. Please keep us posted if you have the spare time and energy. I think Lewis Black may need some ativan.
FMG, we're happy with stable especially if you are. Slow growing is good, plus the trial med may be stopping "new clones", as my rad onc calls them. Guess what my mets are similar to yours in location. Imitation is the sincerest form of flattery... bad joke.
K
0 -
K-Lo, that was back in October. I didn't get into the TDM1 trial because of the brain mets and so started a different chemo (Gemzar) and had gamma knife 10 days later. I don't think GK means you have to stop chemo. I had three small brain mets, and an MRI a few weeks ago showed that the GK seemed to work and there were no new spots.
In order to get into the trial I would have had to wait 30 days after GK and show a clean MRI. If I had waited that long, that would have meant going too long without chemo--probably, or I failed on it). The trial was filling up anyway, so I had to wave it good-bye. But the Gemzar seems to be keeping me in the game. I scan in a couple days to see.
I'm up way too late--shopping for sandals on Zappos--because we're going to San Diego no matter what the darn scan says.
0 -
Golden girls, have u asked her doctors about gamma knife? it is a very effective treatment used to treat brain mets..the doctors should be suggesting this. If her cancer centre does not provide this maybe a neighbouring cencer centre can help..
Best wishes and hugs for all the beautiful girls here...
God Bless..
Bestfriend
0 -
Goldengirl, Sorry I overlooked your post. You really need to ask her radio-onc or neurosurgeon those questions. What are they telling you? Maybe they don't want to give her too much WBR in too short a period of time. If the 4 remaining mets are stable, maybe it's best to wait and see, especially if they're not affecting her vision or balance or other giving her headaches. But you--or your sister--needs to ask those treating her for answers. Or seek another opinion if she's not satisfied.
Good luck.
0 -
Aaasssss the world turns.........
Met with MO today and she told me how brain mets will put me to sleep. Good story, but I dont think my GD will get it.
Life. You get what you get and I have gotten plenty.
0 -
Wow, K-Lo. I'm not sure what else to say . . .
0 -
Had my first MRI since I started chemo and had gamma knife. There were no new mets and the two that I had were basically gone. I have no edema and very little scarring. The RO was surprised. He said that scar tissue might develope but that I was in the 99% for response to gamma knife. I am so thankful for this technology.
0 -
K-Lo
Hugs to you.
0 -
Ty, Leftfoot. Surly, I'm really OK! There still may be a surprise lurking in the box of Cracker Jax. Rads Onc said she would talk to NS and if he offers Gamma Knife, I cannot refuse. But you know, there is a time when one gets tired of chemo. PLEASE, Lets celebrate these choices when the time is right.
Like Jodi, she feels really great off chemo and it is a good time of life. And don't forget I've been in this game since 1997, some of you were tweens when my family and I first came to grips with this reality. It helps to have all of that time to think of how much worse other people have it. Not to depress you, but my cousin has been losing his vision for several years, my in-laws lost babies, you could all add more.
Leftfoot, I Know what you mean about being grateful. GK is remarkable and its not the easy choice for the doctors, Ill say that. Weren't you surprised by the time they put in? Grateful indeed! Please keep sharing your good news.
Together, we make a difference. Kathy
0 -
Left foot--congratulations on a good scan.
Kathy,
Hugs your way. I hope that your RO and NS come up with some options. Have they offered any chemo options? My onc had a trial for brain mets that crossed bb barrier. I could not get on it as I am already on TDM1 trial. I have copied the description below.
.Poster Session 3 - Treatment: Brain Metastases
A phase 2, multi-center, open label study evaluating the efficacy and safety of GRN1005 alone or in combination with trastuzumab in patients with brain metastases from breast cancer0
