Brain Mets Sisters
Comments
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I think this group is partly to blame for the bad brain mets recommendations. It is a consortium responsible for practice guidelines of multiple cancer types. The recommendations for brain mets are only in the stage IV breast cancer guide, no mention of it in early stage disease. I was going to write to the head of the board to see I can get answers.
NCCN
http://www.nccn.org/professionals/physician_gls/f_...
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It has a little bit of a blood thinning property about it and I already have a tendency to bleed so I'm careful about what I take. Also it can interfere with Advil and right now I'm living off that for pain bc I hate narcotics.
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Lauralind, I am so sorry you are feeling so bad. I hope you find a way to manage all this. I am thinking about you all the time.
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Thanks !! I'm so glad I have you guys. Other ppl just don't get it.
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Feel better Lauralind!
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Lauralind, I have big problems speaking. Stammering, stuttering, stretching the consonants and wobbling on the vowels. Stress or any thinking required makes it worse. You are so right, other people just can't know what it is like.
How is your puking? You are coming up to your next dose soon. I am so worried about you.
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Split I can too if I'm not deliberate about my speech. I'm just glad my brain seems to be working for the most part.
The nausea stopped after day 3. The chemo nurse said a day or so and he was right. Zofran is very helpful. The second night I put one beside my bed so when I woke up and felt a wave I could take it and that was a good solution.
Yeah I'd like to feel better before thursday for sure !
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Lauralind, I suspect the dex is making you crazy. I think a lot of people can attest to not feeling the same old self while on it. It made me feel like I was in a fog, too, when I took it a year ago. I was crying and could barely express myself. It was frustrating. Once you wean off of it SLOWLY, I expect you will feel much better. Hey, these guys are playing "laser-tag" with our brains! So it's got to affect us in various ways. Good you are keeping on top of your nausea. I have an aversion to zofran and compazine and I just can't get myself to take it. It reminds me of chemo days. I think taking it will make me vomit!
I hope the other gals check in so we know how they are doing. I agree with Split, we are so worried about each other.
Hoping some of you have MLK day off and enjoying some fresh air. Get that O2 in your brains!
lots of xo, letranger
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Oh I know Dex makes me crazy lol. Not my first rodeo with dex. But it does help my brain swelling so it's a necessary evil. I'm on my way with the taper. Down to 1 mg in the morning and 1 mg in the afternoon. Will hang out with that for about a week. All these things on top of another !
I'm to start the memantine but with so much going on I didn't want to start it. I guess I should.
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Lauralind5,
Keep in mind that there is a delicate balance between too long and too short of a tapering. Too long is equally bad, because it stunts your system's ability to produce its own cortisol. In my wife's case the RO was saying 7 days between decreases, and the MO was saying 3 days in between, so I opted for the average of 5 days.
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I weaned down over two weeks post craniotomy, per the instructions of the neurosurgeon's office. They gave me such a high dose in the beginning though and while it helped tremendously, it also caused me moderate symptoms -- I thought I was dying honestly. Since then I have been more judicious about its use. I swapped over to Boswellia Serreta after that and have kept on it since July -- the blood thinning aspects are a good thing, especially with breast cancer.
When I get my period (I was HR- remember) I have found I need to take a break from most blood thinners or they will cause me to have extra bleeding issues (vitamin K1 and calcium to the rescue!).
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Quick drive-by to ask what happens during a craniotomy pre-op appt? Should I bring my whole family or should my husband suffice?
I tend to think it will be similar to my pre-op before the mast and the whole enterouge would be serious overkill, but my mother is jumpy and asking if she should come.
Sending calm stomach vibes to all.
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If it helps her and your are ok with it I would bring her. Otherwise, my pre op was the normal check vitals, go over procedure, sign paperwork.
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brain MRI scheduled for the 27th. Add me to the list.
Thinking of everyone
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hi ladies, I am reading through your posts & am amazed at the love & support shared here. I also appreciate the honesty of shared feelings. I had PET scan today , the tech said they were just looking at my bone mets for staging. I told him he needed to scan my brain as well. I have extensive skull mets according to previous tests. My memory is starting to slip & I get frontal h/a often as well as feeling like I have an ax in my skull. Reading your posts make me feel less anxious, esp.Nancyh. U r a lovely grp, but I am praying I don't have to join your club this week. Stay strong--Sue
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Sue, good luck on your scan and let us know how you are doing.
Bad, pre-op is no biggie. Tell your mom that you are very LUCKYthat they can take your tumors out and that you will feel better afterwards.
I have to go for Kadcyla now. You kids stay out of trouble while I'm gone.
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Gcriani thanks I've been on steroids more than I want ! I'm like you I strike a balance. Usually a bit quicker than they suggest. But I also don't like to mess around with brain swelling either.
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Oh left foot. Sending you good juju
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Bad. It's like any other. But it may help her hearing how it's going to go. When is your surgery ?
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Sorry for the multiple posts this morning. I dare say I'm feeling better. I felt about 10% better in the afternoon yesterday and so far today that trend has continued. I'll take it !
Split hope it goes smoothly and do I really have to behave ?!?!
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Hey Cancer,
So we're getting ready for scans and we would appreciate it if you and your friends would stay out of our heads. We love that we are making new brain mets sisters friends but can you spare any newcomers? Geez, you just added Bad-at-usernames to our club and she was already going through a loss in her family. Now, listen, we have some smarties on our team with Agness the powerhouse researcher, NancyH with a super awesome survival record, Split is carefully watching over us and we have GC with all his SE effects advice and knowledge. We have a lot more names that I missed, but I'm keeping this short and to the point. And oh yeah, we are armed with rads, chemo, diets, and much more!
So stay away, brain mets. And keep away from Sue2009.
letranger
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Love it, Letranger!
Bad - I didn't have a pre-op appointment for my craniotomy...having a seizure at work and being life flighted to my neurosurgeon's hospital kinda cancelled out any of the typical pre-op stuff. In my experience with any appointment, I've found just taking my best friend is my best bet. She's a great listener and note taker and really helps me process anything the docs say. Then I can relay info to my sisters and other family members after the appointment. It's too overwhelming for me to have everyone there. Good luck!
Glad to hear your a feeling a little better, Lauralind.
My onc's office called. Insurance mess has been straightened out and I get my first Lupron injection tomorrow. I'm ready to get this ball rolling. I hate dealing with insurance issues on top of everything else.
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Love the rant, letranger!
Laura, I am happy for you that the ickiness has settled.
Goodie, as much as I never wanted to join this club, I am glad that my symptoms manifested in a way that I was still always in control. How terrifying...
My crainontomy is scheduled for Monday morning. I don't know if it's being part of a clinical trial, or that hacking into a brain is more complicated than hacking off a breast, but my pre-op will be an all-day affair, so I did opt to bring my parents along. I had been prepared for the brain mets possibility ever since I learned about Her2 and the BBB, so I took the news much better than my family. Which has resulted in me ending up taking care of everyone else and their worries. So, I figure if I involve both my husband and mom in the prep, they can take care of each other and I can focus on taking care of myself, without having to manage a bunch of questions and updates. Win-win.
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ANG 1005
I'm just leaving my onc's office and she mentioned an investigational drug called ANG 1005. Looks promising, but I can't find much info upon my quick search. I believe it's a taxane-form drug in phase II testing and been around since 2009. Shows promising results for brain mets.
Anyone hear about it and have additional input?0 -
bad-at-user-names -- there is an up to 40% risk of spread with a craniotomy, which is usually done for larger tumors. There's a 60% chance it won't spread but with HER2 I wouldn't hold my breath. For melanoma, leukemia and lymphoma patients there is only a 10% risk of spread and they do adjuvant treatment for those patients groups. As we have seen though, docs aren't up on this stuff and they falter all the time. Are you on a keto diet? Are your docs planning on giving you rads 4 weeks after -- it still feels like hell but sooner is always better. It was 7 weeks post op when I had rads. Also, as I mentioned before, they can't see less than 109 cells in an MRI even with contrast. Really, and they seem incapable of understanding this. It isn't good for us brain mets gals.
What drugs are they planning on putting you on after craniotomy -- there is a crazy high chance of brain mets returning post craniotomy period. Like you have a 5-15% chance of not having it come back which is way higher than having your breast tumor dealt with in the first place and getting chemo afterwards. I heard over and over that they didn't want to hurt me -- but you know what, they almost killed me -- and they gave up on me to boot. It is serious and surgeons and all these neuroscience professionals -- they don't get it. Find someone who will treat you, especially with HER2 disease.------
I had a headache since overnight. I tried water, tylenol and extra boswellia but it was still bugging me this morning. I took 4 mg of dexa and it settled down. Since the pain is in my right-front quadrant where my port is, I think that I feel the edema most in that more sensitive area of the brain. I'm feeling grouchy and pissed off today -- but I think that is just me and the bad weather. Be nice I keep telling myself but man I want to rage against oncologists today.
Seven down, 18 to go. I also got my vitamin C IV infusion today.0 -
Letranger,
According to this http://www.ncbi.nlm.nih.gov/pubmed/22027709 it is a paclitaxel conjugated.
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Yes, GC. I have that link on my post, but what exactly does that mean? It has some peptides and amino acids, I think. And what are the side effects? SE's like taxol or pacitaxel? My ex-clinical onc hopes to bring the study to UCSF, but she thinks they may only open one in Southern CA at USC since they started the phase 1 trials. Just wondering if anyone thinks it is promising.
I start my new chemo on 1/27. It's NKTR-102 in this CLINICAL TRIAL at Stanford.
There are a few more investigational drugs that she mentioned, however, I just can't find my notes right now to share.
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Here's one more I found for Her2+ called TESEVATNIB
Clinical Trial info here - but not recruiting. Nonetheless, it will be interesting to follow another -nib drug.
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Letranger - you want out there: Geldamycin is an anti-HER2 antibiotics but it's only been studied in animals and it associated with liver damage. They have created two conjugate of it that cause less liver damage but I still can't find out how much liver damage. I got two rounds of Kadcyla (on break inedfinately) and it raised my liver enzymes and they had never been up like that.
Check it out:
Geldanamycin destabilizes HER2 tyrosine kinase and suppresses Wnt/beta-catenin signaling in HER2 overexpressing human breast cancer cells. - PubMed - NCBI
http://www.ncbi.nlm.nih.gov/m/pubmed/17143483/
Geldanamycin - Wikipedia, the free encyclopedia
https://en.m.wikipedia.org/wiki/Geldanamycin
Geldanamycin | Fermentek
http://www.fermentek.com/Geldanamycin
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agness,
I am currently taking oral chemo in order to reduce the tumor burden before surgery. That is why I am having surgery on Monday instead of tomorrow, like was originally planned. My neurosurgeon wants to give the chemo a few extra days to work on the tumors.
He called me personally to explain his reasoning - not passing the buck to his nurse or assistant. I like him. He is a great example of both a competent and caring medical professional.
I will not be getting rads until I have regrowth. Hopefully I'll get a nice, long remission out of this current chemo. The objective is by holding off on rads, I hold off on maxing out. Makes a lot of sense to me.
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