Brain Mets Sisters
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Hi, ladies my mom has been fighting for quite so sometime. Goes in for surgery Monday back and front of brain. Any advice on how to prep ?
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susaninsf, have to ho for mask fitting and I Day, it's hard to hope I have alto of lesions some big some all all over the brain I am really ascared.
Can you offer any advise
Paula.
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Lisa - glad to hear your craniotomy went well! Continued wishes for healing.
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Lisa, glad to hear surgery went well and Dr. Hebb was able to get it all!
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Every day I think, we think can't get much worse, and then it does.
Long visit with new RO, she could not believe the amount of mets. Damaging ones at that. The orbital area, is in danger of causing visual loss it's that bad, nerves on the lateral is causing numbness, the Hypathalamus, the cranial fossa .... her shoulders, other lesions that are pushing into the skin on the chest, and much to her concern the thoracic she is very scared what she will find when she sees the MRI specific to the spinal area that she is ordering, she is afraid she will see dangerous compression. NOW, this girl was being cared for by top docs in top Hospital. I have an email i just reviewed from June, RO telling me she reviewed THE REPORTS, and it's stable. No it was not stable, and she did not bother looking at the images herself, think, because this is a train wreck it did not happen overnight. I can't even, because i'll explode. How could they? New RO says you can't just treat little pieces always, you gotta look at the big picture. Conservative is not always good. And then I ask you, they know the situation, just do it damn it, what are they protecting her for 20yrs down the road, she told them this hurts this hurts, and they kept saying systemic systemic, of course you can't do every bone, BUT her pictures are horrible.So new RO says oh this urgent, so i called her in the PM, and i told her you told us this is urgent, but IR is saying the liver is urgent, must do the Y90. So she said liver is MORE urgent. She'd give her a break of one day after the Y90 and then she'd start her on extensive daily Rads for up to 3 weeks. Mind you, IR told me that after Y90 there will be great fatigue. I asked him what kind of fatigue, he showed me like the sleeping kind! So hmmm how are we gonna drag her to Rads....I don't know.
I wish we could all hear from more ppl that went through it.
I asked how many he has done? He said about 150 p/year. The truth is from what he says, we don't have the luxury of waiting for appointments to get other ppl and delay this. And the other Rads are being held back because of this.
She is taking the Neratinib it's causing abdominal pain, i hope she could tolerate it.
Yes, my friends, honestly it's unthinkable.Lisa feel good.
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The resident just said that I get to go home today! This is great news. I'm able to speak and eat mostly normally, and I can move around slowly and cautiously. I can't submerge my head, but will need to do some washing up today. I was reading The Underbelly last night and thinking about how we really do make it through all these awful ordeals, thanks to our strength and our amazing family and friends. Specifically, I was reading this profile: https://theunderbelly.org/2017/10/barbara-bigelow-...
So keep up the good work everyone. No one wants to do this job, but we are all doing the best we can. Remember to eat something you love or do something you love this weekend because you are keeping yourself and everyone around you alive.
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MomATT,
I am just devastated for you both! Thank you for keeping us up to date. Specifically where are they going to radiate on a daily basis for up to 3 wks?
Sending major prayers and (((hugs))) your way.
L
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Momallthetime, I'm so sorry to hear about all the craziness you're dealing with and hope that aotger doc can come in with a fresh approach and get things moving in a healing direction again
Had my gamma knife today and all went well. I cried and cussed a lot about the numbing Ned injection and headframe pinning but pulled through. I'll have another scan next month to evaluate how the procedure worked.
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Momatt, I am so sorry to hear about all the mets and that the last RO dropped the ball so badly. Hope the new one gets things in a better direction quickly for Dani.
Illimae, glad the gamma knife went well. Here's to a quick recovery.
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Lisa, so glad you are home. That always feels good. I am glad the surgery went well.
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Lita so happy to see you around giving your pointers, great!! How do you feel?
Mara, illimae thanks so much for being there.
Dani is so upset, RO said we have to wait till Y90 is done, it's too much radiation otherwise. This Y90 is like a Bomb. First they do the angio then they let you know when you have to come in. But RO wants Rads to be consecutive and not even have a day missing, i figured i'll wait till after the procedure, when IR tells us which day she'd come in, maybe I could do some bargaining with RO. Dani is in pain and the orbital is dangerous enough to cause damage and her spine. But RO said the liver is the most dangerous from the danger!Ughghh Keep you posted. Hugs to all
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Mom,
I'm just really tired. My wbc's are extremely low. They did Taxol #3 anyway. They were 1.8 b4 infusuion, and slated to drop even more. Was told to stay away from crowds, so I'm staying home and vegging out on the La-Z-Boy. Watching the big recap of The Walking Dead b4 the next season starts tomorrow.
L
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I found the perfect Bitmoji to sum up my day yesterday!
Lita, I'll be watching tomorrow too. Sunday nights we have dinner and tv with friends. Walking Dead and Game of Thrones are our biggest premier nights. Enjoy
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momall, thinking of you and Dani and hope this new team can turn things around. Thinking of you both!
Hugs to all the ladies on this site. I don't post often but think of all of us constantly.
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illimae, thanks for the picture. I will be able to prepare for what I will have at some point. Glad you are done.
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Recap:
In early 2014 I was diagnosed as having HER2+++/HR- Breast cancer, I did neoadjuvant TCHP and my stage 3 cancer went away. In July 2015 I had a 5cm tumor removed from my cerebellum, my first site of mets; all evidence points to the cancer getting into my brain before treatment started. In late 2015 I was diagnosed with leptomeningeal carcinomatosis (LM) and had an Ommaya Reservoir put in my skull. It slowed the cancer but it wasn't enough so I did partial brain radiation to my cerebellum. Some cells were able to resist radiation and regrew which then seeded lesions subsequently in my left temporal lobe and near my pineal gland, in the forebrain (all disease previously was in the cerebellum).
What's up with me
For a second time my doctors, two neuro-oncologists at two hospitals, have told me that I was stable when in fact the cancer has been growing slowly since December. A pineal lesion became viewable in February but no one said anything about it. Since I have been doing well they decided to ignore the scans, not to be honest with me, and to use my symptoms as a guide. On this basis decisions were made to drop treatment frequency, and some drugs were stopped due to side effects.
Last May in a spinal fluid study, an atypical cell was found, the only other time atypical cells showed up was the summer before and subsequently it was recognized that the LM was growing again. We did a lumbar puncture as samples taken from the top and bottom of the spinal column can look different. Note that no cancer cells have ever been found for my LM and I have had 4 lumbar punctures and over a dozen CSF draws via my Ommaya (port in my head).
I'll bypass what happened in the interim but last month they freaked out at my regular brain MRI. I wasn't having pain this time, I have had it before, but I had subtle progressive issues with my balance, with my handwriting getting tougher unless I wrote a bit more slowly, with touch-typing (I could find and peck ok), and with speaking. F!
My docs, even with me doing more, trying hard to use developing science to help me beat the odds seem to only know how to think about Brain Mets patients in one way — they could help me die better. But I wanted to live dammit!
My partner pointed out that none of the drugs I was on had been stopped because it wasn't working, it was just that the side effects were too hard. Maybe get could still work.
So I resumed a weekly intensive treatment plan, same as what worked last Fall. The lesion near the pineal gland though needed treating so I met with the RO who I have known since early 2016; she will think outside the box. We decided to treat this lesion with Gamma Knife (I have now had LINAC SRS, Tomotherapy, Cyberknife and Gamma Knife for my Brain Mets).
Separately, I have been working on pursing immunotherapy options and been in touch with a researcher for a year. We decided to proceed with treatment for me, I will be patient #2 that is having this CAR T-cell treatment into my Ommaya Reservoir through FDA Compassionate Use.
I got the Gamma Knife last week and the planning MRI showed a significant reduction in the lesions in the cerebellum, but the pineal gland lesion was indifferent to the chemo. My balance and speaking issues, even my typing and writing all havevariously improved.
In a few weeks I am getting CAR T-cell therapy. It is hoped that the brain radiation prior to the immunotherapy might produce an abscopal effect.
If you saw me walking down the street, or standing behind you in line at a cafe, you would never guess anything was amiss — and for this I am thankful. Still, walking on a thin edge here.
I am happy to answer questions.
Ann
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Agnes's- you are as always in my thoughts and prayers. Thanks for the update. I hope that your treatment goes well and you continue to teach the medical field what is possible if you think outside the box. I'm sorry you are the person pushing new boundaries, but happy to know you are and we are all the better furvit. Thank you so very much
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susaninsf
Please give your recipe for caner fighting soup.
Thanks, paula.
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Agness, always good to hear from you and hear about your various treatments. I agree that you are paving the way and giving us all good tx to ask about for ourselves.
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Agness you are quite a lady. Good for you on not letting them dictate your way to live. I do think about it, if they are so scared to treat ppl with mets, i don't think that's what they should be doing. With D she had to literally beg in more than one visit, for them to radiate the cerebellum, RO was very worried about the baldness in smack of her head. Of course at first D was very upset, but really, her hair never grew back close to what it was, and she has a gr8 expensive wig which she told them about, so THEY don't have to worry. crazy, but that's how it went. They finally did it.
Again, in the last Brain MRI there was concern for the orbits, she told RO that she was even feeling the lesions, MRI advised that a more specific MRI would be recommended, but somehow RO told us that they looked at the scans and they don't think so. This was in June sometime. At this point, looking at a new MRI at this new place, they are sooo concerned about her vision, they did a Orbit guided MRI, which showed the trouble she is in. And the same goes to all the osseous from her C spine and Thoracic, they are almost having it all radiated now.
It's mind boggling. BTW, the places you went to where large institutions, not that it matters much at all. I'm loosing total confidence in this big factories. WHO ARE THEY to decide what a person wants to endure or not?? I think there is so much help out there, but many doctors are reluctant in delivering it, or they are judging the duration of s/o life, and thinking these ppl are better off just coasting.
About these Car T - is it something that you have to stay in the Hospital? Would it be the same therapy that they are doing in NCI? There was something like this that i called for Dani, i sent them all the papers, and they said due to her brain mets, she would not be a candidate. I wownder...
Thank you so much for letting us know. I hope you get to write well again real soon.
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Ann,
I truly appreciate you sharing your treatments. I believe docs get better with our engagement! You give me hope. And I totally understand about the looking healthy thing. It is usually nice to not get the pity looks I had during chemo. I know another friend with Stage IV BC using the hyperbaric chamber to heal from radiation She had to get her face.
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Paula,
Here's a link to Rebecca Katz's Magic Mineral Broth: Magic Mineral Broth Recipe. It is DELICIOUS and very nutritious. Perfect for when you can't eat much. You can use it as a base for other soups or just drink it out of a mug. I usually make Minestrone out of it. The recipe is in her cookbook, "Cancer Fighting Kitchen". The basic recipe is vegan but you can throw a whole chicken or chicken parts in there if you like. You need to have a very big stock pot.
There are a lot of ingredients but you don't have to do a lot of chopping and peeling, just cut the whole vegetables in half or whole and boil them. Very quick and easy.
Hugs, Susan
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Thanks to all for sharing your thinking and your treatment. Agness, I'm particularly interested in how the CART therapy goes for you, as a friend is investigating it for me.
Warmest wishes to everyone! I am home recuperating from surgery and will be getting ready for radiation and the meeting with the MO next week.
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Glad surgery went well. Hope radiation goes just as well.
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thanks susaninsf
Paula.
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You doing ok Paula?
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Ann, you are an amazing woman and I so admire your strength. I was wondering if you has any early signs of your brain tumor. I am 4 months post chemo and am having some very strange cognitive things occurring, as well as significant vision changes. I am forgetting how to open things I use daily and severe confusion in many other areas. I know of chemo brain - this is my second cancer and have had it before - but this is much more alarming to me. Any advice would be greatly welcomed. Thank you so much. Lesley
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Hi Nan,
Yes it can compound and continue to grow if your body can't clear it out on it own. My body for some reason wasn't clearing it out! I think we private messaged about this as we had similar tumor location?
( perhaps I had too much dead tissue to start with thst my body couldn't deal... google progressive necrosis it is a thing! It's terrible because MRI can't distinguish tumor or necrosis verywell if at all. Since scar tissue is toxic to organs it was creating inflammation and creating other issues with my vision, etc.My first follow up is Monday. Nervous! I've been having mild headaches now 6 wks post surgery. Felt better at 3-4 wks post, do not sure what's going on. Maybe it's because I'm off all the meds now I'm not sure. I want my old levels of energy back.
How long for others to feel normal after craniotomy ??
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Lita I told my onc the same but actually stage 1-4 for certain types as I was st 1 and a small single. Cell got to my brain. My body is NED for 3 yrs now so he truly believed the chemo I did took care of any other mets that broke away and we’re in the body. Had I had abrain scan initially I wouldn’t have had to have a craniotomy perhaps? The radiation would have worked better if it was found smaller??
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