Brain Mets Sisters
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MO got back to me. My 20+ brain mets "appear" a little smaller. She is sending it over to RO for a second opinion. I'm STILL having symptoms and want to get that resolved.
In the meantime, more steroids have been ordered. Sheesh.
L
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Lita, I am glad to hear the mets appear smaller. That is great. I am sorry you are still dealing with stinky symptoms requiring steroid use. I hope the steroids at least take those away for you.
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Lita - yeah for the perspective of good news!
Mara - I've been thinking about you. Did you have your Gammaknife yet?
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Goodie, my spots were unchanged from Sept to Dec so we are doing another MRI in Feb or early March. No treatment on the table yet. Thanks for asking.
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Good to hear, Mara.
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Lita, thank you for the updates. I hope that the symptoms can be addressed soon!
Blainejennifer, your warnings about SEs are just the kind of thing that I would worry about. I came through the surgery yesterday with no problems. Today I'm feeling sore and bloated and tired, but nothing alarming, it can all be handled. I'm more worried about the sudden onset of menopause and what that's going to feel like. The surgeon doesn't care about that, though. That will be my family doctor's problem, and possibly the MO's.
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Paula, how are you doing?
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LisaY, in my experience, I didn't feel any sudden menopause symptoms following my ooph and complete hyster. Symptoms were much the same as I had been experiencing on Lupron and on tamoxifen before that. The hot flashes peaked in frequency and intensity around 3 months post op and from there have come to a manageable level. Good luck with your recovery!
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Susan SF I did the new gamma knife machine at UCSF about 2 weeks ago to my tumor bed, they use a mask now No halo. Who is your radonc just curious was just there would have been fun to run into you ♥️ Hope it does the trick
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Pagej,
Thanks! My Rad Onc is Penny Snead. Maybe I had to use the halo because my tumors are so small. One is 1mm, the other is 3mm. Just had it done on November 26th.
Hugs, Susan
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Susan- that's probably right. The new machine allows for fractionated gamma knife. That's what they did to me..Sneed was there but my radonc is Braunstein. Glad it went well and is over for you! I started Nov. 29th we just missed each other.. won’t be back for 3 months
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Oh my god ladies, I will catch up on this thread now, but I was just diagnosed with brain mets an hour ago. There are many and they won't hurt any function as of yet for the most part, but there's one on my eye nerve that they want to zap next week. This is a whole new level of terror past liver and bone mets. I was Stage IV de novo, so I never even had radiation at all. Any advice or questions I should ask. I am truly freaking out more than usual.
Thanks!
Bethany
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Bethany,I was dx'd St IV de novo with bones and liver mets (plus more in other areas of the body), too.
They may also do some Whole Brain rads after attacking the one behind your eye because you have a lot of them.
It's not that bad at all. They will map it all out, and you'll have anywhere from 10 - 20 sessions. They might be able to do the eye one in one big blast, but I'm not an expert here.
It's hard not to freak out, but we all got thru it, and you will too ;o).
L
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Sorry you find yourself here Harrysmom BUT you are in good company. There are quite a few of us who have undergone surgical, intrathecal and various forms of radiation here. Once your RO comes up with a game plan, post any questions here. We will all help you and support you at the same time. Whether they do whole brain radiation or just zap them one at a time depends a lot on location. There are several ladies who have had mulitple mets who only had local radiation. This is the preferred way to go to minimize damage to tissues BUT if whole brain radiation is mentioned, there are several of us who had it and have gone on to do quite well.
The brain met stuff is a lot like the body met stuff, a lot of it is luck, how your body handles the treatment etc. Staying active if possible will help if you can do it, even if just walking round the house. Treatments will depend on how the RO views the risk/benefit of a particular modality.
Enough from me for now, I welcome you again to our fine group. Lots of people here.
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Thanks Mara, Thanks Lita!
I'm a bit calmer this morning and meeting with the RO at noon. I've read through some pages here and donoe a bit of googling for questions and now sort of understand the gamma knife vs. WBRT. I'm in a custody battle for my 4 year old, which was problematic enough but I'm worried about the cognitive decline side effects. Thank you ladies for your support!
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Harrysmom I just completed my 10 WBR for numerous small mets. It was rough but doable. That was in September. MRI shows all have shrunk. One is a little bigger and I am having another brain mri on January 16 which I understand will take pics in slices and will see if the one left is blood fed. If so rad on will cyberknife which is a lot less invasive. I wear mask which is stabilized but not drilled. I totally understand the terror with this and really went into the mode of its all over myself but I am feeling well just moved into a new home. I am 65 years old married 48 years to my childhood sweetheart 2 children 3 granddaughters 3 great grandchildren (little girl due April 25 so will be #4). I have a. Positive attitude walk read needlepoint. This group has a wonderful support and has helped me tremendously. Feel free to pm me if you have questions.
Wanda
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Lita, Mara and Wanda,
Thank you for the welcome! I met with the RO and he's running a clinical trial on WBRT vs SRS for up to 20 mets. Unfortunately at the end of the day I found out I was assigned to the WBRT arm. I am honestly thinking of dropping out of the study and asking for just LINAC radiation therapy (SRS).
Turns out my onc didn't have the news 100% correct just due to the rapid pace. The most worrisome tumors are one on the junction of my eye nerves and one on my brain stem.
I am terrified of WBRT for the cognitive side effects. My custody battle hinges on my health and it has already been a factor. I am thinking of asking for targeted radiation for the most worrisome ones now- however many he's comfortable doing -after taking care of the big two and taking steroids for the smaller ones for now and going back and getting them later with targeted radiation. If he'd do 20 as part of the study, isn't that a case for doing it off trial? If there's any chance of a cognitive decline my soon-to-be ex will jump on it. <sigh> I've been reading back in the thread to get some perspective on WBRT side effects but haven't put it all together yet. I'm just thankful for you ladies!
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Harrysmom: I had WBR for my 20+ brain mets, and I haven't experienced any noticeable cognitive loss at all.
My RO put me on Namenda/Memantine. It's an Alzheimer's drug. They give it to WBR patients to help minimize cognitive loss. I'm supposed to stay on it for 6 mos.
Your ex sounds like a bit of a jerk IMHO. Having your child close will help you heal and keep you strong. You also don't need the aggravation and stress of a custody battle right now.
L
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lita57
How are you doing , sounds like you have a real positive attitude, I think that's have the battle , keep on keeping on
Paula.
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Harrysmom, I Also like Lita have not experienced any cognitive changes since my WBR. I took Namenda also. So sorry you are dealing with the stress of custody situation. Try to stay focused on your health and your sweet four year old. Get a treatment plan in place move forward. We are here for you.
Wand
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Harrysmom, I have had WBR and have not experienced any cognitive loss. If anything, mine has improved when compared to how I functioned while having symptoms from my met.
Namenda can be taken IF WBR is what is put on the table. The problem with a lot of the studies relating to WBR is that a lot of it involves brain cancer patients. Since their cancer tends to be more agressive, results can appear to be dire and the risk of cognitive issues is higher. Another issue is if there are cognitive issues at the start. If a person is starting from normal cognitive function, the more likely they can expect to come out almost unchanged. If localized treatment is offered, that is a good option. Not all insurance or cancer centres offer a choice between the two. I would caution you to stay away from sites that mention glioblastoma or mets from other cancers. If you are checking on studies, make sure the date is current. Half the time I wound up with old information and scared myself to death. I personally find too much googling studies and stats causes even more anxiety and heartache.
Treatment is so much improved for BC brain met gals/guys that we are living and thriving much longer. WBR is not going to mean you will become a totally different person, staying active, brain games like crosswords etc can help as well. I hope this eases your mind a bit.
If wanting to look up more info, keep reading this thread and be aware if a person is not posting, they may have recovered and moved on to other things. There is a lot to be encouraged about.
I am still currently NED from the neck down and my brain mets have not changed since September so I am holding stable there so far. I am healthier feeling than I have been for a long time since 2015. I know a lot of it is luck with medication response etc BUT I also work hard and walk as often as possible. I find these things ease stress and minimize SE. You can hope for QOL. I agree with Lita, your ex sounds like a douchebag putting you through even more stress.
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Thank you Mara, Wand and Lita!
It's great to know there's good QOL. The RO went through things very specifically, like less ability to multitask, slower computation, memory loss, etc. I wonder if it depends where the mets are HER status or whatnot. I've been googling and I like the focused radiation better, but I don't know if I can get it for 20 mets. Thank god for you ladies and this board. You can read things but it's nothing compared to talking to somebody that has or is going through it. Happy New Year to you all!!
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Results from 2nd MRI after gamma knife, from 5 small decreasing lesions to 1 decreasing lesion, the other 4 cannot be found and there’s nothing new. My bone met is also stable, yay!
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Wonderful news, illimae! Celebrate!
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Great news illimae!
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So good to hear, illimae!!
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yay illimae!!!
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Wonderful news Illimae, Happy Dances for you👍
Wanda.
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Thanks all, so nice when things go right, hope it lasts a good long while
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Great news illimae!
I'm going in for round 6 of WBR today. Some headaches overnight and a little bit of dizziness and confusion. Floaters in the eyes too. Does this sound on par with others with WBR?
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