Brain Mets Sisters
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I'm at the hospital. They told me to come but I felt I needed to as well. It is frustrating because they are looking for stroke symptoms again and I don't have them. Ugh!
They are supposed to expedite care this way.
Otherwise I'm fairly stable.
Thank you for the support.
Ann
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Good to hear from you, Ann! Thank goodness for no stroke symptoms. Keep us posted. We are all awaiting for new and positive developments from you. xo letranger
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My neuro-onc is worried about drugs pooling in the base of my skull (posterior fossa) and short of positive flow studies of my spinal fluid, seems very reluctant to do treatment with cytotoxic drugs along with Herceptin via the Ommaya port. She expressed the same after my surgery when I asked about intrathecal treatment initially in the summer. The problem is that Herceptin works best when given with a cytotoxic at least part of the time.
My awful finding is that when they do a brain surgery on a tumor in this low-back compartment like I did with brain mets, there is a 67% chance of having leptomeningeal spread. So there was a great risk, particularly with resection of a large tumor in this area.
New Strategies in the Management of Leptomeningeal Metastases
http://archneur.jamanetwork.com/mobile/article.aspx?articleid=799479
I have found mention that when given prophylactically in patients with lymphoma and leukemia that intrathecal treatment is associated with a lesser risk of leptomeningeal disease developing. I would guess that 67% of it happening with posterior fossa brain mets tumors greatly trumps the risk that it happens in these cancers are given it prophylactically.
Leptomeningeal Metastases - slides 13-14
http://www.slideshare.net/mobile/drsujit/leptomeningeal-metastases
Even better is to treat brain tumors with radiation prior to them getting so large as to need to be resection, this also reduces LM spread risk. I was so sick when my brain tumor was found that it was scary to think of delaying surgery but I think that every new patient confronting a craniotomy should push for rads first, before surgery, as it can be done in one single session.
A new treatment paradigm: neoadjuvant radiosurgery before surgical resection of brain metastases with analysis of local tumor recurrence.
http://www.ncbi.nlm.nih.gov/m/pubmed/24606851/
I don't think my team is less informed but I see the oncology profession once again not pulling all of the info together and hesitating in ways that are harmful for patients. I doubt one could find a doc or team who would automatically look for CNS disease in high risk patients, and then catch it before symptoms developed to do treatments that reduce the risk of this happening. It sounds like such a person or team would be seen as renegade and would not be given support for this approach.
The best we can hope for is for patients to be informed and to push their docs for better treatment options. To know more than they do about the options and insist that they modify their thinking.
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Hi,
I slept for several hours and woke again. I hope to get more rest before morning.
My neck and spinal MRI so far look negative for involvement which is great news. If there were lesions they would want to do more rads but as my RO pointed out, SRS does seem to have worked well to prevent recurrence in the tumor bed.
Next week I will have the spinal fluid flow study over four days to see if the posterior fossa (low-back chamber in the skull) is having any circulation issues to be concerned with. I'm going to doing all my very best qigong, walking and breathing during this study just to give my body its best shot. I'm going to get input from my qigong teacher and my TCM doc who is a medical qigong master.
In the meantime my neuro-onc will start me on intrathecal Herceptin with a steroid to see how I tolerate it.
My RO wants to do WBR, and she discussed the hippocampus sparing procedure. I said lets just see what targeted therapies do since my 5cm breast tumor and lit up axilla had all cancer dissolved by treatment of my HER2+ BC. I might have to consider it again, but the clock is ticking.
I will see the neurosurgeon in the morning. Being at the hospital hadn't moved things up that much but they tried really hard. At least we have largely ruled out spinal involvement.
I'll start Kadcyla tomorrow and someone reminded me to ice to prevent peripheral neuropathy. I wish I stuck with seeing my naturopathic onc yesterday but I will have to see him next week. Maybe they can email me some tips.
Yours in this crazy fight.
Ann
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Ann
I'm praying for you. It sounds like your team is working every angle with your help. Please keep us posted. Many hugs coming your way
Love
Mauree
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Hi Agness,
All the best for your treatment....I hope you get well soon. My prayers are with you. I'm sure you will get this disease out of your body soon through your strong will power. You are a great inspiration for me. My mom is doing well; other than then the xeloda side effects and inflammation it doesn't feel like she has this horrible Lepto-Meningeal disease. I'm certain you'll recover very soon! Thanks for sharing all the info and for your kind support.
Regards,
Priyank
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Ann,
your spine is clean, that is excellent news. Now you can focus on your brain. Let's see what the flow study says about cytotoxics, but try not to worry too much about what is ideal or not -- the treatment needs to be what's best for YOU, not the theoretical average patient. Remember, Herceptin alone is still a powerful tool, and considering your good previous response, I am very hopeful that it can do the job again.
Regarding the "as high as 67%" risk of LMD after a cerebellar tumor excision, please take this statistic with a grain of salt. Doctors can be just as bad as journalists when it comes to sensationalism. Looking at the original data, this figure refers to only 6 of 9 patients in one study. Of all the 3 studies cited as support, the overall incidence of LMD was 19/38 patients (50%) who had surgery of the posterior fossa compared with 8/135 patients (6%) who had supratentorial surgery. However, a more recent study (from 2008, cited in the very next citation) showed that in patients with posterior fossa disease, the increased risk of LMD was only found after piecemeal resection and that "there was no significant difference in the risk for LMD between en bloc resection and SRS". The study concluded "There is an increased risk of LMD after piecemeal resection of an MPFL. This increase, although clinically and statistically significant, is not as alarming as previously reported and is absent when en bloc removal is achieved." http://www.ncbi.nlm.nih.gov/pubmed/18240919
So basically, the authors of this review picked the highest risk value of all the studies but failed to mention that this risk could be attributed almost entirely to surgical technique. Ann, I know you might be feeling that the surgeons could have done something differently that would have prevented this. Whatever else should have been done differently that would have kept you or any of us out of this mess -- How could the tumor get so BIG??? -- I can't see that your surgery was one of them.
Regarding CNS prophylaxis in patients with leukemia and lymphoma (who have a higher risk), these data refer to methotrexate, not Herceptin. Neither has been tested in BC that I know of. Prophylactic CNS radiation in BC has not been successful http://www.ncbi.nlm.nih.gov/pubmed/18954943
Neoadjuvant SRS before craniotomy was something that I wondered about as well, but it is still in the experimental stage. Like any idea in medicine, it may may have a positive, neutral, or negative effect. It is only clinical research that can give us any answers.
I hope that this helps you. (If not, just tell me to stuff it.) I find that concrete information helps to reduce the anxiety that my imagination so generously brings me. You are a singular brain met, just like me, and I am thinking about you all the time.
Big hugs
Lisa0 -
well, my prelim brain MRI results show no major changes. I still have those freaking brain mets. My MO didn't say too much on the phone. I am meeting with my clinical trial onc on tues. Dana Farber will review the results and give me a status. But my guess is that my clinical onc is steering me towards a trial at Stanford. I don't think this combo did anything for my brain mets. But the good news is that my CT body scan is clear. I should be happy about about that but I really wanted this med to work. Feeling a little defeated. I'm just thinking about the energy it's going to change trials and oncs and reading about the new meds and SEs. Sigh . Where is my merry Xmas? I'm screaming inside.
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Letranger, I am sorry your trial didn't work out. When the docs don't have anything good to say, they don't say anything. But still, your body is clear, that is half the battle, don't forget that.
I tried to get into a trial but the tumor board recommended Kadcyla and nothing else, and there was no trial with that available. My onc agreed, preferring that to the lap-cap combo, so I am starting on Tuesday. So maybe that's an option for you, but I am curious to see what else they offer you. I am happy to help you with the reading the trial info, that was my profession before I took a very wrong turn.
Big hugs
Lisa0 -
Lisa, thank you for those words of support. I could cry. I'll keep you posted on what options they present. I'm gonna take u up on your offer.
Still thinking of my dear friend, Agness.
Hugs to all. Xo letranger
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Hey all.
Lisa - I appreciate a good analytical brain. I agree that the risk of LM spread was vRiable and they took the big number. Still, it sounds like this was at an increased risk and so my team should not have been so surprised in October that they hesitated when my LM showed up. I didn't have to have another 5 weeks of spread, ya know?
No, doing prophylactic treatment probably didn't make sense in my case, though we did discuss a flow study in September. We have to do one now. I point it out because practitioners get stuck in their discipline boxes and if we know that prophylactic treatment is being offered when the risk is lower in a different population, or that SRS is being done for us to 30 lesions in a different cancer then we might be able to change what we get and our outcomes.
Since so many, many reports on brain mets say "further study required" yet standard of care isn't providing awesome results, I think we need to find ways to push the envelope as patients
I am still shocked that they are so bad at diagnosing cerebellar mets. I told my team that I was atypical before and look how far gone I got and my symptoms were obviously atypical this time as well. By the time I have the symptoms they are looking for I am going to be in a very bad way. I have passed every neurological assessment with flying colors but my body said something was getting worse which is why I sought immediate care. But gosh it was hard to be atypical in that situation. I said what was intermittent is now present, plus my head feels swollen on one side, there is pressure begins my eye and my neck is stiff. Something is getting worse. I know I was right.
Letranger- I am feeling okay, just a slight headache. They didn't shave my head
I got my first dose of Kadcyla and IT a Herceptin yesterday. Let's start killing some cancer.
PS - I have been working with a naturopathic oncologist (FABNO) since before chemo started. We do periodic labs to see how my body is doing. All my blood work looks great and everything is finally well within range. My WBC count is even up. So, I'm basically a healthy person with a mutant cell line in my head that I need to quash. Things could be worse.
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Agnesss, I feel so happy for you that your tx is underway! I have a good feeling about this for you. are you back home from the hospital? Is the Omaya port on the top of your head? Were you awake during the placement? How does one detect LM in the brain but not in the CSF? Does it show up clearly on the MRI?Sorry for all the q's. I know you must be exhausted after this week's events. Wishing you a restful weekend with major cancer-fighting going on! Xo letranger
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Hello everyone,
after my MO's call last night about my brain MRI showing no improvement, I took an Ativan and went to bed. I am feeling such anxiety that I just want to sleep and forget all of this. I have been taking Ativan 2-3 times a day to relieve my anxiety. I live in 6 week gulps as I get scanned that often. I know I will need to get off this trial and move on to another one. I believe the recommended one is nktr-102 with a chemo. I still need to meet with the coordinator and onc to see if they can get me in. Anyone heard of it? So I will surely lose my hair. I just don't know if I should ask for SRS for the larger lesions and take Tykerb or jump from trial to trial. From my research, it's hard to cross the BBB so what is my best bet? For those of you on kadcyla, why did your onc choose that for brain mets? Is there anyone on navelbine for brain mets?
At my last onc meeting, she suggested moving away from her2 targeted therapy and doing traditional chemo to see if that would help. I started thinking about primary brain cancer patients and their options.
I did have a partial response to herceptin and noticed my breast tumor shrinking after my first infusion, so I'm thinking I still need her2 targeted therapy. Systemically, I am cancer free. So I think chemo and rads did what they were supposed to do. Now, how do I get that to my brain?
I know this post is all over the place, but it's exactly how I'm feeling. Lost and confused.
I meet with my clinical trial doc next week and I just want to be prepared with some questions. I don't know the full details of the scan report, but I suspect that my lesions are growing in millimeters every 6 weeks. That is scaring me. I have no symptoms but everyday I wake up thinking if this will be the day I start showing symptoms. How are others dealing?
Any thoughts? Thank you.
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Thank you everybody for sharing knowledge and experiences. I'm new to this thread since my wife was diagnosed with leptomeningeal metastases (LM) a couple of weeks ago. I'm having a hard time understanding how advanced are her brain metastases are, but I do understand that LM is one of the more serious development. Her MRI (here is the link) says subtle associated meningeal enhancement, but I have no background to understand how advanced that is. Some of you seem very knowledgeable, and I would appreciate any feedback. So far I've read the following studies:
1. Tsao MN. Brain metastases: advances over the decades. Ann Palliat Med. 2015;4(4):225-232.
2. Savitz ST, Chen RC, Sher DJ. Cost-effectiveness analysis of neurocognitive-sparing treatments for brain metastases. Cancer. September 2015.
3. Reddy JP, Dawood S, Mitchell M, et al. Antiepileptic drug use improves overall survival in breast cancer patients with brain metastases in the setting of whole brain radiotherapy. Radiother Oncol. October 2015. doi:10.1016/j.radonc.2015.10.009.
4. Kazda T, Kuklova A, Pospisil P, et al. Utilization of Prognostic Indexes for Patients with Brain Metastases in Daily Radiotherapy Routine - is the Complexity and Intricacy Still an Issue? Klin Onkol. 2015;28(5):352-358.
5. Ho VKY, Gijtenbeek JMM, Brandsma D, Beerepoot LV, Sonke GS, van der Heiden-van der Loo M. Survival of breast cancer patients with synchronous or metachronous central nervous system metastases. Eur J Cancer. 2015;51(17):2508-2516.
6. Gwak H-S, Lee SH, Park WS, Shin SH, Yoo H, Lee SH. Recent Advancements of Treatment for Leptomeningeal Carcinomatosis. J Korean Neurosurg Soc. 2015;58(1):1-8.
7. Le Rhun E, Taillibert S, Zairi F, et al. Prolonged survival of patients with breast cancer-related leptomeningeal metastases. Anticancer Res. 2013;33(5):2057-2063.
8. Sperduto PW, Kased N, Roberge D, et al. Summary Report on the Graded Prognostic Assessment: An Accurate and Facile Diagnosis-Specific Tool to Estimate Survival for Patients With Brain Metastases. JCO. 2012;30(4):419-425.
9. Sperduto PW, Kased N, Roberge D, et al. Effect of tumor subtype on survival and the graded prognostic assessment for patients with breast cancer and brain metastases. Int J Radiat Oncol Biol Phys. 2012;82(5):2111-2117.
10. Sperduto PW, Chao ST, Sneed PK, et al. Diagnosis-specific prognostic factors, indexes, and treatment outcomes for patients with newly diagnosed brain metastases: a multi-institutional analysis of 4,259 patients. Int J Radiat Oncol Biol Phys. 2010;77(3):655-661.
Not sure why it doesn't show in the Dx chart below, but there is a brain met diagnosis is dated 11/19/15, and a WBRT treatment 11/25/15 to 12/14/15 with a total radiation dose of 3,500 cGy.
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Letranger - Im sorry for all your stress. It sounds to me like we have ruled out Neratinib as a favorable drug against your brain cancer. Watching the lesions grow from scan to scan must be agonizing. I would have dropped out before now. Your doc said she isn't studying ONT-380 due to conflicts with the Neratinib recruitment. Sounds political.
What are your plans now? Will you have these spots zapped? Do a water-based fast and ketogenic diet as you try to get them to shrink down and have a strong reaction to rads? What about hyperbaric oxygen before rads or the drug that increases nitrous oxide and oxygen penetration -- oxygen increases the oxidative effects of rads.
Did you ever get Foundation One testing done of your brain lesions? I am finding that I'm studying it more since my confirmation of diagnosis. I know my MO doesn't know what to do with it.
Have you ever tried Kadcyla? They got a big response when they delayed a second round of WBR in a patient and used Kadcyla first.
No sign of LM? While definitely an unfortunate turn, this was the only way that they would dose me with IT Herceptin -- getting Herceptin in quantities that will affect the CNS. Evidently, unlike methotrexate, Herceptin, though a large particle, is supposed to actually affect deep brain lesions in ways they didn't expect. Genentech is supposed to know this I have heard but I haven't seen anything published about it.
I hope this is helpful for you. I am so sorry to see you feeling so rough about things. Time to take back the steering wheel.
Ann
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Giovanni - so sorry about your wife's progression. LM isn't a great form for the cancer to take as you have to think quickly but I don't think it is much different than other kinds -- it's still just cancer.
You have opted for WBR. Now do more while she is still being treated. Cancers that grow in the brain find themselves in a land of cushy, protected delight with lots of glucose which fuels the brain and cancer loves.
On a different site someone has pointed out that hormonal cancer cell lines seem to rely on MTOR mutations and that metformin, a common drug used to treat diabetes acts on insulin resistance and MTOR specifically. Can Debra get metformin?
Taking the body into ketosis shifts the energy source in the body to one reliant on ketones for energy instead of glucose. Cancer cells are particularly maladaptive to this shift, particularly in the brain, but our brains are totally fine with it. As a long-term strategy it might be rough to adhere to but while getting rads, why not through something else at the cancer cells -- a dual blockade of sorts. The Charlie Foundation has lots of info about the diet and my hairstylist says that she uses it to treat her epilepsy.
http://www.charliefoundation.org/explore-ketogenic...
Have you ever had tumor tissue tested for specific mutations? I tell ya, it's pretty cool to see exactly what is going on. So often MO are treating blindly based on standard of care and it sometimes doesn't work but they don't know why. At least with knowing your mutations you understand why something might work better or not. For instance it is good to know that I don't have an MTOR mutation so metformin probably would be well targeted in my case.
Do more is my mantra.
PS - I had them get all sentimental or something and say that it wasn't LM, that my symptoms were not what they were looking for. You know what? They were wrong. It was definitely LM and my symptoms were of LM progressing -- even though my symptoms weren't classical as my LM is on my cerebellum. At the hospital I passed every neuro exam with flying colors -- I told them that my symptoms were atypical and by the time I had their symptoms I would be far advanced. Rough but I had to go with my gut.
If you can get her to NED, even temporarily, maybe you can throw immunotherapy at it.
See protocol 137
https://depts.washington.edu/tumorvac/clinical-tri...
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Agness - Thanks for all the information you shared. We didn't really opt for WBR, but instead were told by the radiation oncologist on a Friday night that it was the only possibility, and that he would start her WBR the coming Monday after consulting with the main oncologist. So we didn't really have a choice, being new to brain metastases. During that weekend I was only able to start reading through this thread, and to digest a couple of studies giving an overview of WBRT, SRS, and other combination therapies; so come the following Monday we could only acquiesce to what the radiation oncologist was proposing.
Interesting that you mention metformin end ketogenic diet: about 20 months ago my wife started modifying her diet and going toward macrobiotic, and taking metformin. We do not follow macrobiotic guidelines 100%, but do our best effort to eliminate carbohydrates, abolished red meat, have chicken and fish but have replaced a great deal of animal proteins by moving to vegetable-based proteins. In the process my wife went from a frame of 5'7", 165 lb to 125 lb. She had to give all her old clothes to her sisters, and jokes that she had to get cancer to get the body she always wanted. I have read one journal article on metformin:
Goodwin PJ, Thompson AM, Stambolic V. Diabetes, metformin, and breast cancer: lilac time? J Clin Oncol. 2012;30(23):2812-2814.
It puzzled me that mTOR is linked to HER positive cancer, because my wife is HER negative, but regardless she keeps taking the metformin.
She has not tested for mutations yet, and I agree that it should be done soon; thank you for suggesting it. Regarding study 137, I'm not sure she is eligible, because Zometa is one condition for the study; she was supposed to take Zometa two weeks ago at the same time she was diagnosed for LM (leptomeningela metastases), but after the new diagnosis the oncologist said Zometa should be suspended, at least for now.
I notice here again that anecdotes of oncologists acting after the facts, and not being proactive, are more common than one would think and hope: it happened in my wife's case, with bone metastases being discovered after 8 months from beginning of symptoms (see a thread I started); I feel now again that because an MRI in January 2014 had found calvarial lesions (i.e. inside the skull), an MRI of the head should have been done at regular intervals, instead only the rest of the body was checked. every 6 months.
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FYI for all:
http://www.brainmetsbc.org/en/content/clinical-trials-treatment-breast-cancer-brain-metastases
Here is s partial list of clinical trials for brain mets
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Giovanni -- my friend from my cancer group just shifted her care to Hartford HealthCare Cancer Institute in Plainville and is really pleased. The hospital is affiliated with MSKCC so you have a much larger network and resources available. I'm not liking the way your doctors are working with you and your wife, can you see about getting looked at there if it isn't too far?
XOAnn
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Agness, thanks again for the recommendation. Could you please ask your friend to send me a PM?
I'd like to exchange details about the doctors and individual hospitals. Plainville is fairly close, but actually many hospitals in the area have become one larger hospital-care organization part of the Memorial Sloan-Kettering Cancer Alliance. The team that overlooked the bone mets recurrence and that waited too long for a new brain MRI, was at one of these hospitals; after that we moved two weeks ago to a more experienced team at a different hospital but still part of the same organization.
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Has anyone heard from Smiley47?
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letranger, make BFFs with the Ativan or whatever it takes to stay sane. Once the trial change is over and the uncertainty is less, you will feel much better, believe me.
Let's look at your trial options. All trials have to be listed here: https://clinicaltrials.gov
I did not find a trial that matched your description. PM me your options and we can discuss them in detail. And try not to worry. We'll get through this.
Hugs, Lisa
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My PET scan today came back clean, no cancer outside of my skull. How awesome is that. Happy dance everyone.
I got my second dose of IT Herceptin, 30 mg this time. They also took a sample of spinal fluid again and it looked less bloody this time (last time was Saturday, the day after surgery). We are working up to 100 mg weekly of IT Herceptin with dosing moving from three days a week to two days a week.
I am also on a ketogenic diet for the foreseeable future. Someone on the HER2Support.org website told me she had rapid brain tumor growth over three months and then switched to a keto diet and the tumor growth stopped short. I'm going to use this diet and the drugs to try to get to NED again and then I'm going to try to get immunized with the anti-HER2 peptides. I will beat this stupid disease.
Here is more about the ketogenic diet as applied to brain tumors and mets:
http://www.charliefoundation.org/ketogenic-therapy...0 -
agness, way to go on the PET scan -- high five and two thumbs up!
How are you tolerating the IT Herceptin? How was Kadcyla?
The ketogenic diet is interesting. I will ask my MO about it. What did yours say about it?
Have a healing day!
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OMG. Did you just ask what my docs thought about a keto diet? My neuro-onc, and she's more on my team than not, replied "that will be really hard with kids". As if having me die and have my children be raised without a mother is a better alternative? A better response would have been, "That's very interesting, I've read some about that. Will you be working with your naturopathic oncologist on that diet? I wonder if we will notice anything different in our imaging."
I am leagues ahead of my team here and my medical oncologist doesn't like it. I do not have time to deal with babying people's egos, nor hurt feelings though. At every step they have let me down, including the recent scan in October.I saw the neurosurgeon yesterday, he's dosing me while the MO and neuro-onc are out of town this week and I said, "it is my win that I have LM, the only way you would give me IT Herceptin. But, given that we were discussing LM at all, how could you see my imaging in October and assume it was anything but LM?" He didn't answer, and I consider him a good guy.
If it was up to my team they would kill me, palliative care is the only thing appropriate in my situation they think. But I don't believe them. We have empirical evidence in my own body that targeted therapies work against this cell line. We have a Foundation One tumor tissue report stating that I don't have common markers of resistance to Herceptin. The doc at UCLA said we are studying FGFR in case other treatments stop working -- before she knew it was LM. The doc at Seattle Cancer Care Alliance thought getting the Foundation One study was really interesting. My MO, the one who took over for the other MO? She got all defensive about the fact that she didn't order the report (my naturopathic onc did) and that she would have waited until there was chemo resistance, and that some conference she went to in November all the docs were complaining that they didn't know what to do with Foundation One reports. I tell them all to stuff it.
Over on the Inspire.com site, in the Advanced Breast Cancer forum, that is where you will meet a lot of really smart women (and some men) who are taking on these genetic challenges and trying to do more. You might like to check out that forum too. I really like it, found it after my brain tumor in July.
https://www.inspire.com/groups/advanced-breast-can...Do not even bother discussing complementary medicine with your oncology team, they only know one way and with brain mets it is a dead-end road to nowhere. It doesn't mean they are right but you have to tackle this from all sides and with integrative medicine practitioners you can trust. They have the training in nutrition and complementary medicine that can help. It is why my blood labs last week are totally spot on 18 months into my cancer diagnosis and I'm totally healthy except for this patch of LM growing on my right cerebellum.
Ann
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YAY AGNESS.
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thanks Agness for the inspire website. I had been lurking there but did not realize that I needed a log in to see all the many many posts that are hidden unless you are a member!
Well, I wrote this long post about my appointment with my onc yesterday and it just disappeared using my phone). So I'll update you all a little later.
Wanted to check in and say hi to all of you! Wishing you healing thoughts!
Warm regards, letranger
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Hi Susan,
I met with the plastic surgeon on Monday. I have a grade 4 rupture which has to come out due to the pain it is causing me and due to the hardness of my skin. He said he would remove the implant, then scrape away all of the scar tissue which was similar to an orange peel, and then power wash the area with antibiotics to make sure nothing remained.
I have heard of problems of the skin adhering to the chest wall before, but he did not mention it would be an issue. He is the head of Plastic Surgery at Lehigh Valley Hospital, which is now partners with Sloan-Kettering so I guess he knows what hes doing. I go on the 21st and I pray it relieves this pain.
Hugs,
Barb
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Ugh Barb! Can't a girl get a break. I'm so sorry you have to deal with that crap too. Let's get you better ASAP.
Giovanni - Im glad you shifted care. I'll see if I can get her to PM her, we met on here but have a private FB group where we hang.
All tests are complete now:
Whole brain MRI with gadolinium
Neck snd Spine MRI with gadolinium
CT scan for port placement
PET Scan of body with radioactive glucose
Spinal Flow Cutometry Study with radioactive contrast
I also had a bone scan and 360 CT scan in October that were clear.
All my results show is that I am in perfect health except for a patch of leptomeningeal disease on my right cerebellum (I cried when I got the flow study results). A highly unusual situation seems to have occurred in me but it makes me a great test case for fixing this HER2 brain mets problem.
I hope that with a specific, targeted drug therapy which is way ahead of case studies, plus a ketogenic diet and continued complementary medicine from my naturopathic oncologist and Chinese Medicine doc (amongst others) -- and some immunotherapy, that I can beat this and help others too.
Ann
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Agness/Ann
I have sent my e-mail to your PM box, so that your friend can then decide whether to get in touch.
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