Brain Mets Sisters
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I'm thinking of you leftfoot. Everything's crossed for good news!!
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left foot, hoping for the absolute best results. I assume the ones from your last scan were treated with radiation?
Make room in that pocket, I'm in too!
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well just got results.
The spots on last scan from 6 weeks ago aren’t much bigger. There are two new tiny spots. I’ve opted to rescan in 6-8 week’s before we do anything. I do have approval for gamma knife and expect I will do that after the next set if scans on all spots that show up.
Do I’m glad I didn’t have s tin of new spots and that those we knew of haven’t really grown in 6 weeks. But it’s clear the cancer in my brain is still not stable or contained.,
I have s consult at SCCA in 2 weeks and will see if they have any trials or treatments that I am eligible for. Otherwise it looks like I will continue to play the zap it with radiation until either insurance won’t pay for it or a new trial opens up.
So not happy but not unhappy. It could have been worse. That’s what 8 years perspective gives you I guess.
Thanks for all your thoughts.
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leftfoot, sorry you have new ones but fortunately they’re minimal and the current ones slow growing. I had 5 in Oct, 2017, which were treated with gamma knife, then in Apr, 2018 (only 6 months later) I had 5 more with gamma again. I thought it might be a pattern I’d have to live with but so far, so good, you just never know.
Wishing you all the best 🙂
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Daniel86,
I actually did three treatments to my eye.
1) Radiation at the same time as my WBR
2) Chemo directly injected into my eye (Not pleasant!)
3) Blood vessels to the tumor zapped
Not sure which worked. It took over a year for the tumor to collapse down to almost nothing. Over that period, since my retina was detached by the tumor, my retina cells died at that spot. Not a big deal since it was not near my central vision. Amazing how your brain adjusts itself to differences between your two eyes.
Hugs, Susan
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Daniel86, I just asked Susan the same question via PM. I thought having eye mets is not very common. My cousin is having the similar symptoms as your wife - blind spot, headache, clear MRI...waiting to see an ocular oncologist as suggested by Susan. Hope treatments will work.
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Sorry your results were not quite what you hoped for leftfoot.
I have my last treatment tomorrow. Yesterday I started losing hair and I’m pretty upset about it. I just started getting a good crop back after last year’s chemo. I’m trying to be gentle with it and see if it’s just going to thin or really fall out. I was hoping to go back to work on January 7 looking normal but now I’m afraid I’m going to look like a cancer patient again.
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Hen, hate to tell you, but it will probably all fall out. I had WBR last year, and I still have some bald patches...but that's ok. I have a couple of decent wigs and several great hats.
L
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My hair did not fully come back. I keep what's left clippered short, and wear wigs. I found that a velvet wig grip holds it in place and can style it like my own hair. Looks nicer than mine did.
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The hair is just like the crappy cherry on top and I wish my RO hadn’t really minimized the chances of losing it. I’m coming to acceptance of it. I did rock many fine head coverings and scarves when bald from chemo and was complimented on my well shaped head. I’m considering buying colorful wigs. We’ll see. My husband just hacked it all off for me so I’m pretty punk rock and at least it’s not shedding everywhere.
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Happy New Years Ladies. I hope we all have a truly spectacular years and show cancer what it means to be kicked where the sun don’t shine.
Adding my 2 cents about vision spots..my tumor was by the vision area of my brain. It causing migraines with auras (new to me) and holes in my vision. So you never know till you know. When’s i hear from others I always hope hope hope it’s just some dumb benign thing that can be solved super easily. We can’t all get the poop hand right?
As for me brain is stable. The dural thicken was slightly decreased, but Avastin (which they said was amazing and works so quick in 2-4 infusions) hasn’t done much in the 8+ infusions I’ve had. Leads me to think it’s not swelling...I can’t help but think well what’s more cancer at this point? Only way they can find out 100% is by doing another craniotomy to do a biopsy of my dura. I’m on chemo so I’m hoping to see it do something in regards to this rather than surgery. Such a luxurious life we live.
Also about wigs...wigs are so great. Instant hair-do! Less shampoo and maintenance. For me showers are tiring and I just don’t have it in me some days to deal with hair how I used to.At the end of the day you can just remove it and ur done. Plus you can have many different styles that would be hard to achieve with natural hair. Downsides for me would be cost, itching, how hot they can get, and maintenance, but so fun to watch people see me MOVE my hair for a scratch. Good times.
Hugs
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I comb out my wigs and spray them with equal parts fabric softener, water in a spray bottle. Makes mine last longer. They dont need to be washed as often and they dont tend to be as frizzy.
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Henrietta -- I also lost my hair from WBR. It started coming out after 2 weeks (I had 3 weeks, in total). My last treatment was 9/11/18, and my hair started coming back -- just barely -- in mid-December. I have a nice thick egg-shaped patch on the back of my head, and a nice thick wedge near the nape of my neck. In just the last week, I started getting some decent growth on the sides. Nothing on top yet, but I'm not quite at 4 months yet, so I'm staying optimistic!
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Thanks, TwinkleCat! I will keep hope alive for eventual hair regrowth.
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Twinklecat, glad to know someone who is having hair like me, I told my husband the other day I look like Dr. Phil! LOL!
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Girls I am
New this brain siteI just got the results of the MRI tonight and it's very bad . I have cancer through all the lining of my brain with not long to live. I have to have whole brain radiation asap which will make me very sick and lose all my hair. Sorry to have to tell u like this , I now have to tell my family
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So sorry to hear about your MRI Delvzy. Radiation isn’t too bad from what I’ve experienced.. there’s the hair thing though so that sucks. I also have mets to my lining or my meninges. How does yours look on the MRI (tumor or cloudy spot?? I had a solid tumor and a big cloudy spot. Doctors don’t know how long you have exactly. You could respond to treatment really well. I’m not saying don’t trust them, but have some hope. Much of their information they draw on in old. Telling family is hard. I waited till I was in a more accepting and stronger place emotionally. Sending you some gentle hugs
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can someone tell me what to expect from WBR as I have bc in the lining of my brain and I am devastated.
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Parry apparently I have it to the whole lining . I only got a phone call about it so I presume it's cloudy and solid. Any info u can give me wound be ap
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Might want to watch the latest in breast cancer therapy from the San Antonio Breast Cancer Symposium... https://www.sabcs.org/Past-Meetings
From 2017, I learned that Keytruda+Herceptin has some success with cancer cells that develop resistance to herceptin.
From 2018, I learned of the current standard of care for brain mets.
Ask your MO about:
Tucatinib
Immunotherapy (anti-PD1 like Keytruda/Pembrolizumab and Opidivo/Nivolumab and anti-CTLA-4 like Yervoy/Ipilimumab) + radiation combo. The idea here is to use the Anti-PD1 and Anti-CTLA-4 to let your immune system recognize the cancer as an enemy. The radiation is to kill/weaken some cancer cell and effectively create cancer vaccine in your brain.
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Delvzy I only had Stereostatic Radiation so far. I had a solid tumor in my meninges, which was removed, then the SRS. At the moment I have a patch in a different area of my dura that is cloudy. Because I have cancer elsewhere my MO is thinking that we monitor closely. They don’t know if it’s swelling or cancer (although nothing has worked to really reduce this ‘swelling’) and the only way to find out is to do another craniotomy. Which I’d like to not do if my options are the same as they are now. I have heard of cases where a port can be put in in the skull to deliver chemo directly to CNS for mets, but haven’t had to explore that option yet. I had a spinal tap to check my fluid for cancer and it came back negative, and have heard that it can be a hit or miss method of detection. You may have more options given your hormone receptor status so I’d make a list of questions, concerns, all that for your MO. There isn’t a lot of useful or plentiful information on the internet unfortunately.0
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Delzvy, I have had WBR. Like other treatments, side effects will vary so I will only share my own experience.
It took months to recover from it. The physical effects were not that bad. I had the usual fatigue, loss of appetite, lost my hair.
The reason it took me months to recover was that I was extremely depressed after dx with the brain met and being told I had to have WBR. My emotional state did not lift until months later which is why it took so long.
Things that are fairly common would be some tinnitus, earache since the tubes of the ears can be affected. My tinnitus comes and goes and I did have it previous to the brain met. Being tired due to being on steroids etc. Other than that, I felt physically better after the craniotomy and WBR. The steroids got rid of the swelling of my brain which helped. My main issue I deal with presently are short term memory, worst being if I don't put something where it belongs.
If you find yourself sinking into depression after the brain has been radiated, get help with it sooner than later. I could have saved myself a lot of problems by doing that.
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Angit, that mbcproject looks interesting. I saw you sent blood. The site mentions needing tissue. Did you have tumor tissue
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Delvzy -- I had WBR to treat spots in my brain, dura, and skull. I was already on steroids to manage my symptoms from the mets (dizziness and hearing loss), and I stayed on those throughout, which helped with headaches. My RO also prescribed namenda to help preserve my cognitive function. I did not notice any cognitive problems. I did have tinnitus and ear pain -- but those were also symptoms from my mets, so it's hard to say whether this was a side effect of the radiation. The have mostly resolved (I finished WBR exactly 4 months ago today!). The dizziness and hearing loss that I was experiencing from my mets has completely resolved. I did lose me my hair 2 weeks in -- it is starting to grow back now! I also usually felt really wonky after my treatments, so I didn't drive for the entire 3 weeks.
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Delvzy,
As you can see from my bio, BC mets showed up in my brain in 2017. My RO gave me WBR, and he said that would probably only buy me another six months. Well, that was over 15 months ago, and I'm still here
They couldn't do surgery because I have over 20 mets up there. The two biggest ones (over 4 cm) are still there, and one of 'em has gotten a little bigger, but I'm taking Decadron/dexamethasone (steroids at a low dose) every day, as well as CBD tincture to manage symptoms. I still have the black/grey dot that shows up in my vision because the tumors are pressing on the optic nerve. I see an opthamologist for my eyes twice a year now.
My palliative care dr says I'm a miracle. I really SHOULDN'T be here, and he says to keep doing what I'm doing. I took Namenda/Memantine, too, while I was doing WBR, too.
Good luck and my prayers are with you, L
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SCCA never helped me.
I had a brain MRI last week and everything is still stable, no new disease was seen.
Ann
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Great to hear Agness. My brain MRI was also stable. Feeling lucky about that.
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Hi, ladies. I'm here again posting for my sweet 36 year old sister. She developed brain mets (15+) in late 2017 and did 21 days of WBR and has been receiving Kadcyla for the last 8 months or so. Her scans all showed tumor shrinkage until today. Today's results showed several tumors have doubled in size over the last 2 months. She will meet with the doc on Tuesday to discuss treatment options. She is HER2+ ER- PR-. What experience do you ladies have with other treatment options? PET scans are still clean. Or any promising trials?
THANK YOU!
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agness, I was just thinking about you yesterday, glad to see you pop up
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girls I had my first WB radiation yesterday and it wasn't too bad. Let's hope it kills it off in the lining . I hope I am a miracle girl too xx
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