Brain Mets Sisters
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Hi everyone, here is my update:
So, I'm on cycle 7 of the clinical study, soon to be off the study but choice. Well, I keep asking q's about my parenchymal brain lesions because everyone seems to have a slightly differing opinion as to what is going on. I have had Dana Farber read it and measure them volumetrically, my cancer center just measures it by length and width, my new onc looked at it and my RO looked at it! But it looks like the 4 that were treated by LINAC SRS a year ago are pretty stable. But new ones popped up when we scanned in July. But some are changing shape and some cyto----- (I forget the right word for this) well, dead cells which may have lost their blood supply. In fact, I have one that looks like a donut/doughnut and the middle is essentially dead, but they still measure it across so it measures to be 2.1cm near the top of my head. So, I came up with a plan to do SRS on my 2 largest lesions and then get into another trial using the drug Etirinotecan. Unfortunately, the large study they did didn't meet statistical significance so it was not FDA-approved. As quoting from the article: "Of particular significance, median survival in patients with brain metastases was more than double on nktr-102 and the 12-month survival rate for this sub-group was impressive at 44% compared to 19% with other agents."
Anyways, the drug I am planning on is pegolated so it is supposed to be longer lasting in the body. It has worked well with glioblastoma patients.
oops gotta go!
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Letranger, a friend also recommended CBD therapy; is it the same? My wife just finished 3 weeks of WBRT last Monday, started Taxol chemotherapy on Tuesday, and was implanted a port in her chest on Wednesday: so far so good, not much in terms of side effects, about the same short-term memory loss as before; no pain.
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HI gciriani,
I'm not well-versed in cannabis, but I think it is the same. Personally, I would try a vaporizer like the pax and use it for anti-nausea and anxiety. A coupe of people I know did it while they were on chemo (ACT) and they said it really helped. I wish I had done it during chemo because I really suffered. BTW: there is a cannabis thread and the person who started it seems to know a lot.
Also, ask your wife's onc about all kinds of options. I'm finding out a lot being in a clinical trial. I like it that I have 3 oncs looking after me! Plus everyone has something different to offer. Sure, being on an experimental drug is more "risky" but I can't believe standard of care for brain mets is really that much better. I can always fall back on standard of care drugs and treatment. The only thing is sometimes experimental drugs exclude you from getting some other drugs, so I have to read carefully. Also, onc does not recommend biopsy of my brain mets so I am assuming it is still the same as my original breast cancer. But it t could have changed or it could be resistant, so trying other drugs seems logical in my case. Sorry to get side-tracked. I just want to say that there are lots of options, we just have to ask and find an oncologist that is willing to try. But it takes a lot of research on the patient's part. Please keep us posted on how your wife is doing.
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HI HIndsfeet, I just saw this post. I don;t know how I missed it. Anyways, I feel your anxiety. Guess what, we are twins, I have 11 lesions, too. I had 4 back in Nov 2014. Did SRS, they shrank for a few months and in July I had 11. Blech. Because I have no symptoms, as concurred by several docs, I chose a clinical trial and decided to hold off on WBRT. I am not sure why my onc did not suggest tykerb or lapatinib. I am taking Xeloda as well of a clinical drug which is suggested to cross the BBB.
I still have 11 lesions as of my scan 2 weeks go. I don't know about skull mets as mine are in the parenchyma. After talking with several docs, I feel better. I was in a pretty bad depressive state for a while. But there are so many drugs out there, just do some research and find your path. Seems like we brain mets sisters take different options and sharing is what helps others.
I'm not sure if I was any help. But since you have symptoms, you might need to decide soon. I am Her2+ as well but the next drug I am planning on taking is not Her2+ targeted therapy. You just never know. I'm going to get 2 of my 11 lesions zapped in a couple of weeks. I felt awful after SRS last year. I hated dex. Mainly I was tired.
Also ask your doc about kadcyla after SRS or WBRT, some ladies on this thread are on it. Hugs to you! xo letranger
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I wanted to make sure that our HER2 gals also know to participate in this forum -- it is another place for sharing info though more detailed about our mutation.
http://her2support.org/vbulletin/forumdisplay.php?...
This group here is the best one for breast cancer brain mets by far, but the other is great for HER2
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I hate brain mets!!! For those who know little about Tykerb it is a newer drug that passes the BBB and a inhibiter perhaps like Herceptin. The suggested dose is 4 pills a day and I only take one pill a day and when experiencing side effects I skip a day. It is working well for me. I also take the I.V. Herceptin once a week. I've never done chemo. My CAT whole body scan came in today. The tumors in the lungs and nodes are shrinking. The liver mets haven't showed up since last January. Bone Mets progressing.
Mostly a good report. In September I was dx with 10 brain tumors (regular MRI found them). Last week, four months later, a detail MRI only found 11 and they are all tiny. The doctors thought more would show up on the detail MRI. They should have grown being that they are HER 2 +++ tumors. My doctors are surprised that I am doing so well.
Monday I'm having my pic line removed and a arm port put in. Wednesday Gamma Knife surgery on 11 tumors and one skull tumor. I appreciate your prayers that it goes well.
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Prayers and hugs Hindsfeet
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hindsfeet - did they ever biopsy your bone mets? It is possible that your cancer was mosaic and your bone mets aren't responding because they are ER+/HER2-.
Many bone mets patients have good results with Xeloda and Tykerb/Xeloda (lapatinib/capecetabine) is a common cocktail for HER2 brain mets. Have you ever tried Xeloda?
That sucks about brain mets growth. I switched to a strict ketogenic diet which is supposed to be especially effective against brain tumors. A gal on the HER2 support site told me she had rapid tumor growth for three months then switched her diet and the brain mets stopped growing. Do more
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Giovanni - I've been researching cannabidoil as well. From what I have read CBD is more appropriately targeted toward central nervous system disease and cannabidoil with an infusion device is the cleanest method of delivery.
My friend from college pointed me to this vape device review link:
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agness, you know I'm wondering how you are feeling. Missing your posts. Much love, letrange
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Hi letranger and all,
I got my 6th dose of Herceptin today, my sister is in town and she went to the appointment with me. I asked my neuro-onc about the imaging due on Monday. It is first thing and she expects that if treatment is working that lines showing at the edges of the cerebellum will have gone away. There is an area that is questionable for LM or possibly further mets (did ist follow the cerebellum?) and the MRI should show some improvement. She seemed fairly confident since I had symptoms resolution. But then they also all act like the situation is dire. How can I feel okay but be told that I'm going to die? It is absolutely surreal. I'm going to get imaging on CD after Monday so I can have the last three scans to compare.
She said that irradiating just the cerebellum is an option. I said whole brain radiation is off the table at present, that I don't want to destroy myself in trying to save myself. She felt that the MO had misunderstood when she offered whole brain radiation -- me, I'm not feeling so charitable. Why did the MO go from being judicious to offering the potentially most devastating treatment option?
When I got home after lunch there was a huge pile of packages here. I unpacked and put the presents around the tree. Christmas Day will probably be quiet for us, but lots of family before and after and lots of videos to send around of presents being opened. My next dose of Kadcyla is December 23 and my next IT Herceptin is Christmas Eve. We aren't going very far very fast . Damn I should have gone to Paris before I started chemo like I wanted to in Spring 2014.
Sigh. Hey, I'm still just glad to be here.
Ann
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hey Agness! So happy to hear from you! I sure hope your mri next week gives you great news. I know it will. And you'll be sending me a post card from Paris very soon one day!
Wanted to let you know that I'm also in ketosis. The strips work for me and they are purple. However, my lack of appetite is somewhat worrisome. I can barely eat most days and shedding a few pounds. I know it's due to the Meds I'm on. well, anyways just wanted to let you know that I'm with you on this ketogenic diet.
Also are you taking turkey tail supplement? I'm taking a lot of supplements and I'm certain popping all those pills is also filling me up. It's a just a conundrum! I also take zinc to lower my copper but and take b12 to counter and b12 loss. Im always searching for any liquid vitamin or sublingual. Doing as much as I can tolerate to boost my immune system. Will probably go see a naturopath that I have been postponing for 1 year due to cost. Guess that will be my xmas present!
Hugs and healing vibes to all of you!
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Hi Agness/Ann,
Keep fighting! My wife finished whole brain radiation one week ago, and it doesn't look like it impacted her short-term memory much; just a little. The radiation oncologist says that because of the leptomeningeal metastases lining the rest of the brain, and the diffused parenchymal lesions inside there was no alternative such as SRS or cyber-knife. He says he's following very closely all recent development, and in my wife's case there was no alternative.
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Hi Giovanni,
Yeah, with HER2+ disease and a PCR to systemic therapy there is reason to believe that targeted therapy will work. If you don't have that option -- and look how dire my disease prognosis had to be before they would even think about dosing me with targeted therapies -- then you don't have as many options yet and it sucks. Your wife is very brave and if I need to use WBR I will, but I want to try these drugs first and my RO is the first to admit that she doesn't know what targeted therapies can do. Fingers and toes crossed and trying not to cry that I can be totally fine and yet have this awful diagnosis with an awful prognosis.
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Hi everyone,
So I'm a little anxious. I got a call today to get a Brain MRI and Sims (simulation) tomorrow! I just did not expect it to happen so soon! So it looks like my 2 lesions will be zapped next week. Ok, so I'm freaking out even though I've been through this before. One lesion will need fractionated SRS over 5 days. I guess I just looking for reassurance. I am so sick of brain mets. Just get rid of these buggers already! After this I get ready for a new clinical trial.
So can you remind me what to expect from SRS? I remember that fatigue hit me hard. The fractionated SRS is worrying me as it is over 5 days.
This is the third freaking December in a row that just sucks! I had brain rads done last year, too!
Ok, I'll stop whining now.
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hugs Letranger.
My SRS went off without a hitch. Was really fine afterwards. Just ask about premedication before hand singly are relaxed for the halo fitting.
Best wishes
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lettanger - Can they do a mask for all of the treatments instead of the halo frame? With five doses of SRS I lost hair in the treated area which sucked -- but the cancer didn't come back there (she says ironically).
Make sure you stay on the Keto diet or do water-based fasting and calorie restriction during treatment to stress and make treatment more effective. Do more and fight the cancer metabolically.
It must be frightening to have to address progression again but let's just add more power to the punch and knock it back hard, once and for all. We are rooting for you. And really, better to get treated than to have brain mets hurt your body more,
So, are you going to try to get ONT-380? UCSF was a testing site but dropped it because of the competing interests with neratinib -- which didn't work for you. Maybe you can get access to ONT-380 there still though, through FDA extended use or compassionate care. They weren't being helpful in Denver with recruitment and trial access from what I heard. Remember, anything can be made available, it's all just politics.
Big hugs.
Ann
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Hugs, letranger. With my SRS, the worst part was the halo fitting. I didn't really have any SE after treatment. I was tired, but still recovering from surgery so I'm not sure which was the culprit. The ativan before the treatment really helped me.
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I had a good appointment with my onc yesterday. All my bloodwork looks good. We are going to stop tamoxifen due to the SEs and try Lupron plus an AI. I'll start that after the first of the year.
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thank you! So, I had my MRI done this morning and now waiting for my SIMS appointment. I had a mask done the first time I had SRS so I am assuming it's the same thing. I am not looking forward to losing a patch of hair on the side of my head. But oh, well. I'll try my best to stay in ketosis and try fasting during the rads.
As for ONT-380, I have asked a lot about it as it was the trial I first wanted to get on. But onc said that Neratinib is similar and if I did not really respond to it then it may not be the best next choice, so a completely change of meds/trial was recommended. I think this is a good idea. Perhaps I can stay on the new trial until ONT-380 or MM-302 becomes available for me. It's all about buying time until the next drug comes along. Definitely going to trial-hop as long as I can.
Although I am HER2+, I will not be getting Herceptin. I had stopped Herceptin for a month before the headaches started (Sept 2014) and the lesions were found. Then after SRS in Dec 2014, I asked to be put on Herceptin again. My onc hesitantly agreed, advising me that it would not cross the BBB. Well, then in July 2015, more lesions popped up. So I dropped Herceptin. She said there was no need for me to be on Herceptin since I was clear from the neck down. She also mentioned something about Herceptin resistance. So I thought I'd better save Herceptin for when I really needed it.
So the new trial is a chemo drug, with GI issues as side effects. I'm going through that now, so it will not be new to me. It's administered every 3 weeks via infusion. So glad I kept my port. I love it and don;t think I would ever get rid of it. I only have one "good" arm as the other has lymphedema.
I'll get more info today based on what today's MRI shows. Hoping it is at the very least, stable and we can move forth as planned.
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letranger - I'm sitting getting infused with Kadcyla and sll I can think about is you and what drug next.
My MO was just at SABCS and brought me a scaled down printout of the ONT-380 poster. I'm not eligible with LM but for you it says this "improved survival compared to Lapatinib and neratinib in s preclinical model of CNS disease"
I believe this is the referenced article, but you would have to pay to read the whole thing.
http://link.springer.com/article/10.1007/s12609-014-0155-y
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thanks a bunch agness for passing that on to me. So, the closest trial is in Tacoma, and although it's not that far, and I'm willing to travel, I'm going to to give this trial at Stanford a shot. My onc mentioned something about the nektar drug sitting close to the Her2 gene. Hmmmm. I tried to google this info but was unsuccessful. If it does not work, I am hoping by that time ont-380 will open up closer to me or even the mm-302
I had been following a blog by a young woman who was on the ont-380 trial aka array and it was not successful for her. I think she went thru Wbr twice.
Anyways, let's keep ideas rolling! Love this thread and look forward to your posts!
Right now I have to move the elf on the shelf before my son gets home! Lol!
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Hey everyone. I just passed halfway with treatment #8 today out of 14. I am happy for the 4 day break. I had to up the dex which I hate, because of increased swelling ugh. I have a few things going on but nothing too major. I have a return appt with my oncologist Jan 7 so will find out when I start chemo, yuck.
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greetings all. I'm
New to this forum. I was DX'd in late May and had a great response to my first line chemo. Had multiple spots in my liver and bones. My last PET showed nothing lighting up. However it's travelled to my brain. I have numerous spots, all sub centimeter. My oncology team says WBRT is my best bet. I start Monday for 10 sessions. Any advice would be appreciated. I'm trying to stay positive.
Merry Christmas to you all.
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Jahaage
I'm sorry you join us on this forum. I developed brain mets in summer 2014 (first mets) and like you was strongly recommended to have WBR. I had a craniotomy to remove one large lesion then WBR for half a dozen smaller ones. Main side effects were hair loss and fatigue. I wished I had shaved my hair beforehand as I hated watching it fall out and they wouldn't let me shave it after the op then WBR. Fatigue peaked about 6-8 weeks after WBR. I took a 2 month sabbatical from work but went back initially part time then full time. No obvious cognitive effects which people worry about. So my main recommendation is to be kind to yourself and nap when you need to. Hope it goes well. Keep hydrated!
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HER-2 overexpression is generally considered as negative prognostic factor, but not in brain mets. Women with HER-2 overexpression (both Luminal B and HER-2 enriched) have better prognosis. Have you received some HER-2 blocked and hormonal drugs? Carboplatin can penetrates blood-brain barrier, but not always works.
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My first line chemo was taxotere, carboplatin, herceptin and perjeta (7rounds). It worked on my bones and liver. I've stayed on herceotin and perjeta and added Anastrozole
First rad today. Nervous.
I wanted to try Arry-380 which is the same as Ont-380 but I didn't qualify Bc none of my spots were a cm or more.
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OK, Anastrozole is able to cross the blood-brain barrier and increases tumor radiosensitivity
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My brain MRI wasn't great. They think it is continuing to spread yet somehow I've had symptoms relief in the past month. This makes no sense to me.
I'm hitting it with IT Herceptin, IV Kadcyla, and the keto diet -- so I'm starving my HER2 brain met of glucose. Is nothing really working?
But it is hard for me to consider why this would be when...Post neoadjuvant TCHP I had an MRI for breast surgery planning purposes. The woman I see for energetic healing said it was scar tissue but the imaging looked suspect for a sentinel node and the node behind my breastbone (internal mammary). I had surgery and we left the internal mammary and dissected three sentinel nodes -- they were full of nothing but scar tissue.
Then they said to me, there is an area of increased uptake on the opposite side. The opposite side? Talk about freaking me out. But I'm down regulating from breastfeeding, might it not be that? They had no idea. So I went through a very painful MRI-guided core needle biopsy on the opposite side and -- it was totally healthy tissue.
Now I'm dealing with totally weird issues in my head and I can't believe that none of it is doing anything. How could that be? Even if the drugs didn't get into my posterior fossa well enough then what about the keto diet? Surely that is doing something -- or I have a weird cancerous mutation that is impervious to ketones? WTH?My neuro-onc wants me to do more brain rads -- cerebellar srs isolating the previously treated area. The RO and MO both said WBR but that sounds still so iffy.
My friend says the IT Herceptin dosing is too low still. Another friend, a great-grandfather in oncology in NYC, he says hit it harder and with more -- like keep doing everything I'm doing and then add on cerebellar rads.
Anyone see any good cerebellar mets articles? There aren't many.
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Anastrozole is an estrogen blocker not a treatment.
So my first rad was not so bad. Easy actually. I didn't want to panic or be fearful on this latest journey so Ive been researching medications for Cancer, healing etc. I'm a bit hyper (that's good I think Bc it keeps me active) and the general just clear your mind meditation doesn't work so well for me. But I've discovered a new technique of visualizing a time of bliss. Apparently and not so surprisingly our body reacts to happy as much as it reacts to danger, anger or fear, and puts out different chemicals. This visualizations called a feeling mantra
So... My visualization memory-feeling mantra is me sailing. I was a racer for years. I visualize myself trimming kite (spinnaker) on this big 100 ft sailboat I used to race on. I loved doing that. Felt so powerful. So while all the machines and stuff we're going on around me I focused on trimming. Up two for speed... Hold..trim..ease.. down..soak for speed ... No more down up two, etc.
Worked great and the light and the sounds fit right in. I got my feeling Mantra! Good to go.
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