Brain Mets Sisters
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From the girl who still has staples in her head, I'm so relieved to hear that you probably won't need surgery. I'm a big fan of Sloan - they treated my grandmother for Stage III cancer (tumor stuck in her chest wall) back in the 80s and she stayed in remission until she died of other causes. If you do want a second opinion, I have an old friend from college being treated at Columbia's neuro unit and he might be able to pull some strings.
I get by thinking of this as a chronic disease that can be managed for a long time with SRS and various targeted therapies (Tykerb, Xeloda, Nertibab, ONT and various others in clinical trials).
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Speaking of eye-stabbing doctors, Goodie, I told my mom your story as a cautionary tale that low risk for brain mets doesn't mean no risk (she pretty much has your exact pathology). She was stunned that doctors would not be more proactive in diagnosing a brain lesion in a woman with a breast cancer history.
And petunia, thank you for sharing your experience with SRS. I'm hoping my current chemo will keep me stable for a long time, but I know it won't forever so it's good to have all the info
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Bad, Honestly I hold no ill will towards my medical team. My neurosurgeon saved my life and my craniotomy recovery was actually easier than my mastectomy one. All 4 docs said that the met presented as a classic cavernoma, and in my un-educated opinion, I agree. I google pics of a cavernoma on a brain MRI and pics of breast cancer met. My imaging looks like a textbook cavernoma pic. My onc only ordered the brain MRIs as a standard work-up after my diagnosis. I had no nodes involved, negative BRCA, and my oncotype score was 9. I truly was a standard Stage 1 patient...except for that damn thing in my head. The head of breast cancer services at Magee's Hospital (Hillman Cancer Center) said that he has only seen 1 other patient similar to me in his 20 years treating BC patients. So it is, what it is, I guess.
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Agness
I hope the leak has stopped and you are feeling better and that the testimony was OK. Now in hospital to try to raise platelets level (8 this morning) to a level where they can start treatment. Thanks again for your help
I hope you and everyone else on the thread have a good weekend
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Becs, how are you doing today?
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thinking of you Becs
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Hi, I'm done with rads so now a month of healing from this brain trauma. I am feeling a little subdued at the end of hitting the cancerous cells with rads and everything else while trying to protect my healthy tissue. You know, the end gets one into a place of hoping that it was enough. It was deemed that being as I'm young and in good health (ha!) and the rads treated area is away from the sinuses that my dripping nose was due to rads induced elevated histamine levels. I took Hist DAO, a supplement of the enzyme your body produces to break down histamine which is overwhelmed during chemo and rads I observed and my nose stopped dripping. Anti-histamines just block histamine receptors but the histamine isn't broken down any faster and rads in particular causes a lot of elevated histamine in the body due to all the cellular damage.
I start up IT Herceptin next week again at 100 mg and I need to meet with the MO about Compassionate Use access to chemo drugs and immunotherapy. Total. Uphill. Battle.
I'll come back and comment on folks updates, I just need to regroup a little. Much love to everyone.
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The Right to Try legislation in WA passed out of the Senate Health Committee on Thursday. The full Senate will vote soon too. I will go back down to testify to the House Health Committee in 2-3 weeks. Still a ways to go and it isn't perfect but consider these stats:
- 595,690 US citizens are predicted to die from cancer in 2016 (http://www.cancer.gov/about-cancer/what-is-cancer/...)
- In 2014 14.5 million people were living beyond a cancer diagnosis in the US
- The current FDA Compassionate Use Application mentions on the form that it will take about 100 hours on the part of the applying physician to fill out the form. After that the FDA says they will only take 30 days to review. Do you have any idea how much the uncompensated effort is worth?
- The FDA is estimated to approve 1,000 compassionate use applications each year
- Look at the drug pipeline stats:
"Across the pharmaceutical industry as a whole, the oncology pipeline is far larger than any other therapy area, with 6,484 products in active development across all oncology indications, reflecting this unmet need. Of these, some 2,084 are first-in-class, meaning that they act on a molecular target not targeted by any marketed product across the industry. Some 46% of pipeline oncology products with a disclosed molecular target are first-in-class, reflecting a very high level of innovation."
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Thanks so much for the support! I was released from the hospital last night and am resting at my mom's house. The MRI showed 6!! lesions scattered throughout the brain. Everyone was shocked by the amount and that I wasn't having more symptoms. Although I have both triple positive and triple negative breadt cancer concurrently, the team feels that this is the HER 2+ one and has probably been there for a while.
I have my first appointment with the radiologist Wednesday and they are recommending whole brain radiation. They told me that I'll need to take a leave of absence from work and, since I live by myself, I should plan to move in with one of my parents for about a month or two. Needless to say the whole thing is a shock and will significantly impact my way of life. But all of the docs are very optimistic and think I have a lot going in my favor, like my age, I've never had any radiation before, and that I tend to bounce back from SEs quickly.
I don't think I could possibly thank each of you enough for your support, encouragement, and pushing me to follow through ASAP. If I hadn't called that day and waited a little longer, the swelling could have gotten very dangerous. All of you may have saved me from an even more serious situation and for that I am eternally grateful!
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Oh Becs, I feel you on the shock. I went into my MRI thinking that if there were mets, it would be maybe one one two teeny spots. I was stunned to find that I had two 3cm lesions (as well as at least one smaller spot) and that I would need surgery. And unlike your team, mine denies, denies that they had be around for more than a few months. I had asked about routine brain scans after I learned about the Her2 brain mets connection and was told that brain mets grow too fast to justify scans without symptoms...yeah right. Due to a very weird but minor symptom I had two years ago, I think it's even possible I had the tumors since original Dx. I don't nessecarily resent my MO for not agreeing to routine scans - during the time I thought I was NED, I was able to resume full-time employment, participate in open-water swims and have several blowout trips with the hubs -but the CYA stuff drives me batty. I absolutely think there needs to be a better standard of care for screening for brain mets in high-risk women.
I'm also on a leave of absence from work and living with my parents. My husband is in school full time and didn't want to leave me at home during the day, plus I need someone to drive me to appointments until I'm cleared for driving again. I hope after a bit more OT, I can be cleared to cycle again, which will help me regain a bit more of my independence. I was relieved to see my bimonthly paycheck show up in my account yesterday. I didn't think my employers were going to turn into assholes about me having to take medical leave, but it's definitely happened to people out of the blue. My aunt, who has a chronic illness, told me to make sure I work with the cancer center social worker on documenting my need for leave, so make sure you do that too.
I'm off to take my steroid tummy on a walk - I named him Dexter
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And I am glad I could help, but really pat yourself on the back for not ignoring your symptoms and being proactive with your MO so quickly. It is terrifying facing potential brain mets and it took me a longer to seek out the scan (although in my defense I did develop LE concurrently and that muddled up my arm symptoms)
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Agnes's- congrats on finishing rads . I understand the mixed emotions of being done. I will only think that it did its job.
Thinking if you and wishing you well. Take care.
Becs- glad you are home. Rest up.
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Becs511,
I'm glad I could help. I feel somewhat validated that your team at Sloan-Kettering recommended the same. In my wife's case symptoms started on a Wednesday, with immediate admission to the hospital, discharge on Saturday, and start of WBR on Monday. Her team here in Connecticut is connected to Sloan-Kettering, but of course it is not the same as being at MSKCC, so it's reassuring. In her case they didn't even mention the number of lesions, and they are also present on the leptomeningeal membrane that envelopes the brain.
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becs I had issues with that kind of dizziness. I'm fact I had it for a while before telling my dr. Dumb me. Anyway. It was caused by swelling around the tumor. It was in my cerebellum so my coordination was off too. Hope they check you out soon.
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just had first intrathecal chemo. Slight ache where needle went in but otherwise fine. Eribulin starts tom
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Are they doing lumbar puncture for intrathecal dosing? Drink an extra liter of water when you get dosed otherwise you run the risk of getting chemical meningitis -- a drug induced irritation of the CNS. Through trial and error on myself I found that taking 1/2-1 dexamethasone tablet (2-4 mg) plus 500 mg of Tylenol and continuing with my Boswelya Plus (1200 mg daily) was able to keep the headache away. I have never received steroids into my head though so you might not need to do that. Hugs and lots of good thoughts. I had symptom abatement within the first week of my starting IT therapy with my ommaya port, it really can do amazing things.
I was just learning about this other drug delivery method, CED or Convection-Enhanced Delivery, that is used for primary brain cancer, the other kind than we have, that is really interesting. There are so few docs practicing in neuro-oncology and yet there are many things that don't seem to be shared between types of brain tumors. It is weird no?
I'm doing really well. I feel better than I probably am so I need to listen to the message the Universe is sending me, in this case on the radio last week: "people need to remember that a concussion is like any other type of injury and you need to let the brain heal". Same goes for us who had rads and surgery -- don't overdo it and let your brain heal from the trauma. I'm going to be online a bit less as a result (less for me is more than for most as I was working in IT hehe) but if you need anything let me know - okay?
Ann
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Big day today - I meet my neuro for Tumor Board results and get my staples out. They have been driving me crazy and causing me pain as they've been tightening.
I'm on the Dex taper, but I can hardly tell. Still eating everything in sight, still super wired. We stayed at a hotel by the hospital last night and I proceeded to eat a huge dinner, then run up eight flights of stairs.
How are you doing Becs? PM your address because I want to send you something
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Good luck today Bad!
Thinking of you Agness as you allow your body and brain...and soul...to heal.
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Bad- you might want to take something before the staples come out. I didn't and the first ones hurt way more than I thought. After a while I was fine. But it was quite the shock. Hopefully everything works out well. Good luck with the board today.
Thinking of you too Agness
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Already took my morning oxy and brought extra pain pills with me
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Good morning. Hope you are all hanging in there. I am truly grateful for you companionship during this time, you guys are a blessing.
They told me I would get worse before I got better. I am having more twinges throughout my body, symptoms of myoclonus, like when you are going to sleep. I had it also from the pockets of cancer growing in my cerebellar folds but it went away after we boosted the IT Herceptin dosage to 100mg. We didn't have time to see if Herceptin could penetrate deeper into the disease. The amazing thing was that this was a month after starting IT Herceptin and it also got rid of my Trigeminal Neuralgia symptoms -- facial pains on the right side of my face that I had for more than two months after surgery -- but it wasn't what they were looking for. So I had symptom abatement and progression at the same time. I finally got irritated with them since they obviously doesn't understand the brain and the limitations of imaging and said "you can't see why I had my symptoms and you can't see why they went away so let's just use me as a guide."
I haven't posted any pics of my spread so here are a couple you can take a look at, there are other pockets as well. The image is a coronal view, taken straight on so the left of the picture is my right cerebellum and that was where the tumor was removed and the bulk of the disease spread was. Since the spread was as a film over the cerebellum and MRI can only see more than 109 cells (but not less than 107) they use the squiggle marks as indicative of leptomeningeal spread. Since my LM was the second site of mets and I'm in good health this was let go longer than it should have. What is strange to me is how set the neuro-oncs are that the disease is in the paranchyma of my cerebellum, which would mean that it had penetrated the blood supply. They also said I have a high tolerance for cerebellar involvement which I think it BS. I also hear that they expect it to come back. I was an ace at dissection in college though and I don't think it is in the organ itself, I think it figured out how to get into the deeper folds and mass there. Take a look at these cerebellum cross-sections and tell me that it doesn't look like a cauliflower inside.
The gal I see for craniosacral massage who is helping me keep my irradiated tissues open and keep the fluids moving -- it is a physical means of influencing how my body experiences this onslaught and I want to send positive signals that things are okay, she is also a medical empath, an intuitive. It isn't scientific but she is uncanny in what she knows. She also does not feel that it is inside of the cerebellum but only on the outside. I think I will just have to agree to not disagree with my neuro-oncs and I think they are exceedingly rigid and closed minded in their thinking -- has anyone met a neuro-onc who thinks really outside of the box?
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My surgeon did a fantastic job getting the staples out. Didn't even hurt.
My pathology was pretty decent. Still ER/PR+ and still very Her2. Ki67 was only 8%, much less aggressive than the original breast tumor. The tumors did test positive for PIKCA3, which would explain why I didn't have a complete response to neoadjuvant. So if anyone has any advice on that I'd love to hear it.
Plan is to resume oral chemo tomorrow
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bad - I could be reading this wrong but it seems to say that Herceptin may be less effective and have a lesser chance of a PCR but alone or in combo with Tykerb (lapatinib) does work with your PIK3CA. A standard therapy for HER2 brain mets is lap/cap (Tykerb/Xeloda) so maybe you can have Herceptin added along with it? Also, for surgical excision in the posterior fossa there is a 40% risk of having disease spread to the surface of the brain -- much higher than for breast cancer as a whole -- and docs don't know this. I have to collect my references for you. Get rads sooner, read the radiologist reports yourself post-treatment MRI and talk to the radiologist yourself if your team falters. I had unnecessary disease progression as they hesitated.
http://www.healio.com/hematology-oncology/breast-c...
I'll see if I can find anything nutritional or otherwise to play into that genetic pathway.
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there is not happy stuff in there but I want you to look at the middle of the page and down. It looks like using hyperbaric oxygen and ketosis/fasting (extrapolating from metfirmin which lowers glucose levels and lies send insulin in the body _ same as keto) might help.
Cell Death and Disease (2014)
http://www.nature.com/cddis/journal/v5/n1/full/cdd...
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Agness/Ann, I agree it looks like a cauliflower. Interesting in the Nature study you reported, they discuss combination therapy of Metformin and Paclitaxel in phase II trial: my wife is taking Metformin after recommendation by a preventive medicine doctor, and her oncologist put her on paclitaxel, so it would be equivalent to that study. Need to get those results or get in touch with the doctors running the study.
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Agness
Saw my rad consultant today and asked how long he thought there had been thickening of brain lining. I had a "clear " scan end Nov, two months later there's a problem. He thought several months! V difficult to spot he said (he was not dong routine scanning). But I had been complaining of sore spot on back of scull (exactly where they are going to radiate), visual disturbance and headaches for months. Feeling let down.
Have had one IT Depocyt treatment after they spent 4 days getting my platelets to a safe level. Couldn't have Eribulin today as WBC too low. Start 5 days of RT on Thursday and hopefully Eribulin Friday. Seeing onc on Friday.
Thanks for your research and advice. Hope you get some peace and healing.
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Agness,
Thank you for pushing me to make an appointment at Mayo for a second opinion on the rads/chemo issues. I think it's a good idea to get more insight.
However, I currently feel confident with my plan. The plan is for Abermaciclib chemo to replace rads. Since the collective tumor area was 6.5 cm, my neuro feels that he would have to radiate a large enough area that I would risk maxing out on SRS too soon. I will be monitored at least every six weeks with brain scans. At the first sign of progression, I will stop the chemo, get SRS and get on a more traditional therapy - like Tykerb/Xeloda. I am excited to be getting Abermaciclib because I remember what a big deal FDA approval of Pablociclib was last year.
From a long-term disease management perspective, it makes more sense to hold off on rads if we have an alternative. And my team will not hesitate to give me them if I show any progression.
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I'm glad the info is helpful. I'm just back from getting IV vitamin c with other minerals in it and once it started to kick in I was not feeling quite so shitty. I'm going to go twice a week this week and next and then once a week until my brain scan before we reevaluate. From my research, you all, my own experience and talking to docs:
• the initial healing period from brain rads is similar to other areas, 4 weeks or so
• the first six months after rads is a critical healing time where the body does a lot of tissue remodeling. Helping to support the body with good nutrition, lots of rest, plenty of water, oxygen, and keeping the lymphatic system draining well can help our bodies do their best repair work. My left breast post LX is a testament that this approach works -- the nurse practitioner was amazed at how well I looked 6 months post chestwall rads.
• 4-6 weeks post brain rads is doing and there is a lot of inconclusiveness in MRI imaging. At 6 weeks post LINAC SRS you could see the cerebellar spread into the folia and the swelling in that area of the brain (cancer gives off inflammatory signals)
• there will be substantial changes over the first 3 months after rads and so expect that it is much harder for anyone to feel definitive (except they were jeopardizing my health by waiting). Scar tissue remnants of lesions might even go away over 3 months.
• if you feel like your team is misreading the MRI get another neuro-onc or brain radiologist to read it cold. You can also request a consult with the radiologist who read the imaging -- at my hospital the radiologist was right and my brain tumor board was wrong.
• chemo and rads are greatly depleting of our body's ability to detoxify, metabolize, and it uses up certain nutrients at a faster rate. You should feel okay taking more as you recover of omega-3, DHA, glutathione, vitamins C, D, E, magnesium and other electrolytes.
• treatment with rads increases inflammatory responses in the damaged tissue and so you might have increased congestion and a clear runny nose. Your body's ability to breakdown histamine has been exhausted so short supplementation with diaminine oxidase (DAO) can help overcome the drowning in histamine a feeling and make it go away -- excess histamine is likely not better as it can cause systemic imbalances.
• the body does its most cleaning of the central nervous system while you sleep, not resting but sleeping. Get good sleep, take melatonin at bedtime if you need to, and take a daily nap after lunch -- even 30 mins feels awesome.
• my alternative healers tell me that baking soda in a foot bath help one's body to get rids of rads damage. It can also be used (baking soda and water on the treated area). I do an Epsom salt foot bath with baking soda and some sea salt almost every day -- at the very least your body absorbs more nutrients transdermally and you have to rest.
The real difference between primary brain tumors and us brain mets patients is that our disease is opportunistic and it spread into a sanctuary site. I was talking to a young woman with a glioblastoma and with primary brain tumors the brain itself developed the cancer so it is harder to figure out what to do effectively since it is behind the BBB the whole time. For all of us we are treated as terminal but for all brain tumors patients do beat the odds or eradicate the disease, our breast cancer might be a bit easier to treat however.
So, no resting on your laurels, how can you be a healthy person with a little mutated cell line you are trying to fight in your head and elsewhere. Don't be a cancer patient, be well.
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bad - I hope it helps. Does it pass the BBB do they think?
My tumor was 3.5 x 5cm and they just retreated the SRS area with Tomotherapy, no carving tissue out. I'm sure I will have some big scarring in the tumor bed as a result but in hindsight, since they wouldn't do adjuvant IT Herceptin I was always going to need to have my cerebellum irradiated because they couldn't see the cancerous film until there was massing.
My team did watchful waiting so I'm glad they are trying you on a drug. I would bump up MRIs to every month though based on the progression we saw in me. I can send my radiology reports and scans over to your doc, seriously. Might as well learn for real life patients. Let me know.
Much love to you all,
Ann
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I restarted Abemacilib yesterday (which does pass the BBB) and found out my clinical trust team will scan me in two weeks - right around the 4 week post-surgery mark. So they are keeping on top of it, but if they weren't I would fight tooth and nail for scans. I mean, 3cm tumors and a proliferation rate of 8% - I totally might've been Dx'ed if my MO had offered a scan when I had asked 18 months ago.
Also starting to look around for a new MO...
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Today is #braintumorthursday if anyone wants to make some noise on Twitter. You can use hashtags like #dontignorestage4 #oncology #cancer #bcsm (breast cancer social media) #neuro-oncology #brainmets
Oncology Hashtag Project Offers Way to Use Social Media to Make Finding Accurate Cancer Info Easier
http://medcitynews.com/2015/06/oncology-hashtag-project-offers-way-to-use-s ocial-media-to-make-finding-accurate-cancer-info-easier/
Hashtags, for the unitiated, are the use of key words and phrases, starting with the pound symbol in front of the word/s. You can use multiple hashtags in a post on Twitter, Facebook and other social media channels. When supported they become hyperlinks of that term/phrase and one can click on them to find all the current related links to a topic (such as a conference) or an idea ( such as immunotherapy). People click on and search for hashtag phrases and this is a great way to help circulate relevant ideas and news to people who are interested. You can also see the latest news from medical conferences if you keep track of main sources such as @theNCI @YSCBuzz and other leaders in the oncology-related social media space.
Oncology professionals are on Twitter and I've made some great connections there. Check it out and make some noise.
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