Brain Mets Sisters
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I'll also be keeping my fingers crossed! Let us know as soon as you hear anything.
I have my first follow-up MRI scheduled for next week and the anxiety is already setting in. At least I will get the results right away...
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so first the good news (per onc scans were tremendous, everything shrinking). Onc gave me results 11/2 hrs after scan when he he was running out to see sick patient so it was quick but great news. Will stick with new combination of treatment- Eribulin, Rituximab and Zometa. Pray it will last a long time. My priest gave me some Holy Water - not had any since I was a small child so feeling blessed
The long version is that the previous 2 month period was ghastly with side effects of aphasia and confusion and loss of consciousness then general weakness. As I said whilst in confusional state my husband told me I pulled my port out but I think he meant the needle? Whatever, it was horrible for him. He thought I was going to die at least twice. I don't remember most of it and don't want to.
I've been home since just before Easter but not yet gone back to work. Still getting tiredness and stomach cramps but I can live with that. Peace to all.
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Gosh Bosco, I'm so grateful for your response to treatment and bouncing back from so much craziness. Sending you a lot of love right now and I was there last summer. We are going to beat back these brain mets.
Hi everyone. I'm doing pretty well. I've passed the narcoleptic phase and now I'm just in need of extra naps. My 5yo caught a bad virus that I'm now fighting. Sucks. I guess I'm fortunate to be having this type of benign crappy cold virus, oh yeah that and a stupid photo-enforced speeding ticket that I'm going to fight. I'm privileged to have these lousy experiences because I saw the alternative a couple times in the past year and yeah, I'd rather be here than not.
I'm still getting 100 mg weekly of IT Herceptin but my neuro-onc is starting to suggest we cut back to every other week. I told her we should wait until after then next scans, the second week in May and then make our determination. Fingers crossed.thinking of you all,
Ann
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Update,
Body CT Scans were obtained at the weekend and was all clear.
The bad news is there is a tumor on the meniges. It's only 2mm big. There are two other tumors. They are 2mmm and 6.7mm. The Onc spoke to the specialist about Gamma Knife and he didn't recommend it. They said it would probably work now, then come back on a different place on the Meniges later. I am seeking a second opinion on this as I feel deal with what is here now and if something turns up deal with it then.
The onc wants to start perjeta, herceptin and docetaxel now. I can't see how this will work. As none of them reach the brain. They said after surgery and radiotherapy it can break the Blood Brain Barrier down. They said they have had patients with systemic and brain mets before and it has reached the brain. They have never had anyone in my wifes situation. IT Herceptin isn't available in the UK, I've asked them to look into it and given them info from RolePaul.
The Onc's said they want to hold back WBRT until if it is needed.
Feel unhappy about it all, and I'm seeking second opinions.
Keep going everyone!
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Freakzilla - the LM is adjacent to the surgical site? There is a high chance of LM spread from the surgical site -- and it's NOT the same as late stage disease spread where mets have figured out how to invade multiple tissues in the body and then overwelming the body and form LM. Trust me they keep throwing that at me as well but the LM was only observed locally
Has she had her spinal fluid checked?
Why isn't IT Herceptin available? They've been studying and using it for HER2+ brain mets for over a decade. What about in France?
I've got the email addresses for a bunch of specialists in the US who have used IT Herceptin both in studies and off-label. I'm happy to share if you like.
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Hi Ann,
That's right it's directly above the surgical site. One lesion 2mm big. I've contacted two neurosurgeons to see if Gamma Knife is possible and they think it is. We're meeting them next week to show them the scans.
Exactly we are miles behind in England. There is a trial currently running in Paris, which is only two hours from us. I have contacted them and they think my wife will be suitable for it. I've asked our Onc to contact them and replicate the trial in London.
They don't see a need to check the spinal fluid even though I asked. She had a spine MRI last week and it was clear.
The Rad Onc said they could do Gamma Knife to the area, but it would just pop up somewhere again. This is what I don't understand. If it is only 2mm big and they can hit it with Gamma Knife why they won't.
Can you see any point to starting perjeta, herceptin and docetaxel?
If you could send me that info it would be great please.
Thanks
Glen
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Let me collect my contacts to send. They are WRONG and we are going to fight to get your partner appropriate care. They don't know what they are doing. Point out to them that the 2014 ASCO HER2+ brain mets recommendations are not based on study they are based on opinion.
As for systemic drugs the only drugs that a HER2+brain mets researcher at UCLA and HER2+ researcher at Seattle Cancer Caresuggested would be appropriate were either Kadcyla or Tykerb/Xeloda. Taxols don't have a place in the recommendations that I have seen or heard anywhere.
Herceptin can be injected via lumbar puncture but a spinal fluid flow should be done first is my understanding.
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mammaray-
SRS to two frontal lobe lesions in December of 2012. Took Ativan prior to treatment and then they gave me more the day of appointment. My session wasn't that long in the machine but prep MRI took a few minutes. I had minor pain afterwards that Advil took care of. There were 4 sore spots from where screws were attached can but even those aren't bad. I took a few days to lay low but was really back up to speed quickly. Some scar tissue where original mtumor sites were but no new tumors since. Have been on xeloda and either tykerb or herceptin since. Been basically NED since then.
I recovered quickly from the procedure and did not find it to be an overwhelming experience.
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MammaRay, echoing Leftfoot...I had GammaKnife to the surgical bed of a temporal lobe tumor last March. I took a few Advil before and a few after. The worst part was the placing of the halo and it wasn't that bad at all. All in all it was pretty painless experience and I had no side effects. Good luck!
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Hi everyone, I am usually on the stage IV bones thread, I am gonna make a long story short. I am asking for my daughter, she is 31/32 with extensive mets to the bones including more than 20 lesions in the skull. Pet/CT MRI says there is no intracranial component, it's extensive in the calvarium and in the sphenoid and mandibular.
Anyway she is Triple Positive, has been on everything under the sun, just about. This Jan. she was put on Ibrance/Letrozole, it's not recommended for ppl with Her2+ but doc wanted to use off label. Now the last scans came back, very mixed, some stable stuff, few even disappeared which it hadn't happened in like yrs, and some are new!, In the skull area done with MRI of the Brain, there was no change period.
Doc wants to add to Ibrance/Letrozole, maybe going back to Herceptin/Perjeta (which i can't understand bcs she had major progression while on it), but my question is really, once I saw one of the treatments, were specially good to cross to get to the brain, do any of you know what I am talking about. Bcs it's very hard to cross the barrier to the brain, I am thinking what is really good to attack the skull mets. She had GammaKnife to the area, it helped somewhat but not nearly enough.
TIA
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And also what is your experience with Tykerb? for those that are on it. Onco, said it's very strong? Hard to take? How is it given anyway?
I would like him to try that as oppose to go back to Herceptin/Perjeta in conjuction with other stuff when we know that HP did not work.
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momallthetime-
I was on a tykerb/xeloda treatment plan for over 2.5 years for my metastatic cancer. I had mets in my liver and my brain.
Tykerb is in pill form which is nice as you don't need to go to the hospital for it. Xeloda is as well. I will say that the Tykerb pills are very large ( some would say horse size) so if she has problems swallowing pills this could be an issue. The SE of Tykerb were hard for me to distinguish from those of Xeloda- they kind of feed off each other. I will say that GI upset is the big one. I had very watery and explosive diarrhea while on this combo. I was taken off tykerb in July and do think my skin is much better and the diarrhea is much more manageable. So I think Tykerb contributed to those SE a lot. Otherwise, I didn't find this combo too hard to take. It managed my mets so well that I was NED for over 2.5 years I was on them. They only took me off Tykerb because I had one solitary liver met show up and they felt that it might have adapted to the current treatment. I should say I am ER/PR- and Her2+ and currently 43 years old.
Looking at the list of SE, they are similar to those of Xeloda, so I probably didn't differentiate them much. I did have some hand foot problems (also caused by Xeloda), and if I was in the sun I got a rash. some days I might feel a bit nauseous, but I had medication to deal with that.
I would say Tykerb is very doable. You just have to get over swallowing large pills. And there was some issues with the timing of when to take it. All those things I managed to work out.
I hope this helps. Best wishes to you and your daughter.
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Mammaray my daughter did the Gammaknife, it was just a bit painful where the halo was, but it beats open head surgery anytime. And it helped somewhat, the lesions did not disappear but are much smaller. good luck
I asked before, with everyone's experience in this thread, having lesions in the skul even more than 20 and yes, some large ones, but not in the brain, is it still considered brain mets or not?
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We had a good day yesterday. We saw privately two neurosurgeons. Both of them said the three lesions are perfectly treated by Gamma Knife and should be treated this way. They also said the treatment should be provided by NHS and we shouldn't have to pay for it. We have had to see our GP this morning for a referral letter. With all things being well procedure should be done next Friday.
Both Neurosurgeons checked the scans and there is no sign of leptomeningeal spread. Just one small tumour of 2mm on the Dura. So pleased.
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Great news Freak! I'm glad you pursued the best care for your wife. I'll keep you two in my thoughts as you take these next steps.
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That's great news Freak. Hopefully you will be able to schedule the gamme knife for as soon as possible.
I also have a happy update to share. I had my first MRI this morning since my gamma knife in February. No new lesions and the ones I did have shrunk a lot! The doctor said the results were actually better than she anticipated. I feel like I can start to breathe again, at least until the next scan...
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so happy to hear everyone's good news!
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I get to add to the chorus. Nothing new popped up on my brain MRI, the crainontomy site is healing nicely and Abemaciclib is WORKING. My one remaining lesion, which was so small we opted to try and treat it with chemo alone, has shrunk by a mm. Soooo worth the tummy ickies!
My CT was also clear, except for some lung funkiness. But I talked to my team today and they feel confident it's just post-radiation crap with a possible healing infection thrown in. I wanted to confirm with them before posting good news - didn't want to jinx myself I guess
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woo hoo ! Great news bad at users nam
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Great news Becs and Bad!!!
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Hi ya,
Glad to see some good reports of positives from our members. Excellent. I'm so pleased and look at how hard everyone has been trying to push standard of care.
I'm still recovering from this damn spring flu. Definitely could have done without the extra fatigue as I'm recovering. I'm hopeful that very soon I will be able to pick up my activity level and start getting back into shape. It's been months of laying low, trying to deal with brain rads and recovery -- and then the flu.
My next brain scan is scheduled for Monday May 9, I should have the results the next day when I see my neuro-onc. I haven't had any new symptoms so I'm thinking things are doing pretty good. Fingers crossed as always.
Ann
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Go Agness/Ann!
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Update
My wife has been approved for Gamma Knife providing the results of a new MRI scan next week. They said as the scan was 6 weeks old, they needed an upto date one. The scan will have thinner slices as well. Providing that is OK the procedure will be done the week after. Not the news we wanted but could of been worse. Keeping everything crossed for the scan next week.
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Does anyone know how quickly HER2 Brain Mets can double in size?
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Freakzilla - Nope, other than my own (HER2+HR-) brain scans from early Sept, late Oct/Nov/Dec. I can post images to google drive for you to see though of course it's kinda specific to my tumor cell line. I wanted to know that same thing in the Fall so we might as well info share.
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I have good news to report. My vision blurriness is age-related vision changes, totally normal for being 45. I had my vision checked yesterday and I just need reading glasses. With all the neuro stuff we are dealing with to have my eyes be regular aging and not my brain is a relief. My .25/1.0 specs are in production.
Hope you are all hanging in there.
Ann
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Sure would like some input regarding some unusual issues I have had. Two months ago I was having a problem with dizziness that was so bad I actually fell down. Additionally, I was suffering from tinnitus in my ears and my hearing is terrible. At my check up the doctor ordered an MRI but it couldn't be done because I have a tissue expander with a magnet in it. So I had a cat scan instead. The radiologist reported nothing in the brain but did find I had a "chronic and acute sinus condition". After 20 days of an antibiotic my symptoms were improved, but not altogether gone. Now, my ears have taken a turn for the worse. They are pressure filled which I can't seem to clear, the tinnitus is incredible, and because of the stopped up ear feeling I can barely hear anything. Has anybody experienced anything like this?
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tripplep- I haven't suffered through the same thing. Could you see an ENT? They might be able to help. I hope your symptoms get better soon.
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Thanks, left foot. I will get into see my ENT. I have a history of sinus issues but haven't ever experienced anything quite like this. Appreciate the response
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TripleP= I am hoping that there is a simple explanation for your problem. Sorry I can't help but wanted to make sure you knew we are here for you
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Triple P I have deafness in one ear for about 8 months. Kept thinking it would go away. It didn't. My ENT has now prescribed decongestant to clear sinuses and is then going to pierce eardrum to drain fluid as he says that is what is causing it. Worth asking your guy.
All, sorry not to have been on the boards - back in hospital with irregularly spiking temperatures. Rather sweetly the nearest thing I have to a boss came to see. me to tell me to take another 4 weeks of work after I come out.
Blessings to all
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