Brain Mets Sisters
Comments
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think there are a lot of new drugs for HER2! I’m here because of my cousin, 35 yo. She has ER+, so not too many options :
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Delvzy,
Glad to hear your first treatment wasn't too bad. For me, the first one was scary but after that I was able to relax and think of it as the healing light, which it is. It looks like your journey has been like mine, Stage 0 for eight years and then Stage 4. My original Oncologist responded to me when I told her about my widespread metastases, "But there's less than a 1% chance of that happening." Not very comforting.
Kidmanliang,
Not sure who is giving you information about treatments but I believe that ER+ people have the most options. If you are ER+ and HER2+ I suppose you would have more but I haven't met any triple positive people. I'm in a support group for young metastatic BC women. Is your cousin by any chance in the SF Bay Area?
Hugs, Susan
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I have heard of lots of new drugs for HR pos ladies for example immunology works on HR pos but not ER PR alone as the cells hide ( I think I am right with that) We need more options fast . The support here is wonde
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Delvzy,
At my sister's appointment today her oncologist mentioned that for cancer metastasized to the lining of the brain that getting intrathecal herceptin can help. I don't know if there is a different drug that would be better for your profile that is used or not. As I understand it, you essentially get a port in the neck or spine so that the infusion gets to the brain directly via the ommaya reservoir. Agnesss had some useful information on the matter as I recall.
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I'd like to know the answer to that question as well. Are there HER2- drugs you can take through the Ommaya port? There is a young woman in my support group who has LM and ER+/HER2- cancer. Her doctor told her there was nothing she could do and that she should just start hospice. I told her to get a second opinion because I thought the Ommaya was a port that like regular ports could be used for any IV drugs.
Can anyone answer this question?
Hugs, Susan
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Here's a link to NIH talking about brain mets...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC47176...
Here's a list of the current Standard of Care:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC36464...
This was from Dec 2017 talking about treating Herceptin-resistant cancer (possible after being on herceptin for a year):
https://www.primeoncology.org/primelines/immunothe...
And here, you can view the conference presentations of current and past San Antonio Breast Cancer Symposium for the latest/greatest:
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hi Susan,
No, she’s not in SF, and I’m trying to get her to nyc to receive care from MSK. For drugs,I think chemo will work for all types of BCs. For ER+, there are only a few hormone therapies, my cousin did not respond well to the hormone therapies so leaving her not many options. For HER2, trastuzumab, pertuzumab, ado-trastuzumab emtansine, lapatinib all seem to be pretty good options. Also there are a lot of clinical trials for this type too. For LM, I’m not sure about your sister’s BM condition, we consulted Dr Seidman from MSK, he said if spinal tab shows mets, it could lead to a recommendation for intrathecal therapy (drug administered directly into the spinal fluid) or to a relevant clinical trial.
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It's up to the MO and the med facility's protocols as to whether or not they'll okay Ommaya ports for Tx.
My MO said, "No," firmly when I asked. I guess if you're as far along as I am, they don't want to continue to spend tens of thousands of dollars on you anymore, which is actually fine by me...I'm ready to go "home" at any time now. We had the tree guy over this morning, and they'll be planting my "legacy" blue spruce in early February after the risk of hard frost/freeze is over. I should still be here to see it done.
DH and I know people (with other cancers) who are doing WAY WORSE than I am, so I'm still grateful for any days I have left.
MO postponed my chemo for this week (even tho my blood numbers were all good). Don't know other reasons why, but I'm certainly not going to complain about having a FREE week to do what I want. Even with the horrible wind and rain, DH, DD and I are going out to dinner this evening
).L
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Ut can change in an instant. One week you are fine and a couple weeks later...
Don’t let your docs give up on you . Know what is expensive? Not being alive.
I was diagnosed with LM at the end of Nov 2015 but a radiologist thought it was in my brain MRI in early Sept. 2015 and still they had no plan for me. I went to the ER and said I wanted an Ommaya, it wasn’t offered to me.
Ann
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Ladies....I see some familiar faces. I've been off the boards for awhile now but need some advice. I am in the middle of 3D Conformal radiation to my skull and some soft tissue that is pushing on my brain. The bone in my skull is literally eroded. Freaky to see on the scan. My question is, what chemo/therapy are most of you on? Is there something that crosses the blood brain barrier? hhfp, I'm reading your links. I've been on Xeloda, Ibrance, Carbo and Gemzar and all the AI's, and Faslodex. Suggestions? Thanks
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My wife's MO is stopping treatment and recommending comfort care. The last treatment she tried was IV Herceptin w/IT Methotrexate (12/3) + IV Keytruda (12/10) ... she got admitted the next day (12/11) for severe pain, turns out it was UTI infection that got to the kidney. During the hospital stay, she had severe breathing issues (pneumonitis?) and had to go on high flow oxygen... she also had seizure (I overheard nurse said she had flatlined). She's now at long term hospital and will have to transition to hospice (due to no more treatment options) next week. I think Keytruda was working! Her immune system must have been attacking the tumor with the side effect of increased swelling. This resulted in increased pressure to brain and possibly even pressing the brain stem. So, despite having a treatment that may extend her life, she is unable to continue treatment...
recent events...
Apr 2018 - first seizure, increased keppra from 500mg BID to 750mb BID (pill)
Apr 2018 - Course of Gemzar combo therapy
Jul 2018 - Course of Eribulin combo therapy
Jul 2018 - reduced functionality of right side of body
Oct 2018 - 1 treatment of T-DM1 - stopped due to platelet level dropping to critical after first treatment
Nov 2018 - 1/2 of initial treatment of TPH (started with this and worked in the body) but she had severe reaction to Perjeta this time.
Dec 2018 - 1 treatment of IV Herceptin, IT Methotrexate + IV Keytruda but my guess is she had severe brain swelling, which is really bad when the tumor is already very big.
Dec 2018 - increased keppra from 750mg BID (pill) to 1500mg BID (IV)
Jan 2019 - MO refused to continue treatment, and does not recommend further treatment (radiation, neurosurgery, etc). Her only option now is to go to hospice.
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hhfp, I’m sorry to hear that your wife is entering hospice. I just don’t know what to say, I wish there were more viable treatment options. Sending my best to you both.
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Thank you. Keytruda probably would have worked but the brain met was too far along... and dexamathasone (steroid) reduces your immune response... so definitely better to try immunotherapy earlier (while taking less steroid and while there is more room in the skull for the temp swelling as a result of immune response) rather than later...
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hhfp, I am sorry about your wife having to enter hospice. One nice thing about that is the care is superior to hospitals a lot of the time. My thoughts go out to you you, your wife and the rest of your family and friends who love you and your wife.
My own mother entered hospice on Jan 15 2019 and died Jan 17 2019 of lung cancer. She suffered a long time but being in hospice and kept comfortable allowed her to pass away in her sleep there. Her poor body was able to let go after all that suffering.
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Hospice is an amazing group of people, they are so caring and not just with the actual patient, but with the whole family. They are truely angels. I asked my mom's hospice nurse "how do you do this job, it's never a good ending?" and he said "I get to be there for the biggest moment of their lives and help them through it, it's an honor" I still tear up when I remember him saying that, it truely takes special, special people.
I'm so sorry you are having to go through this and you are in my prayers.
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myboobstriedtokillme, I'm sorry that your mother just passed away. It's very hard to bear, even when expected. I hope you'll be comforted by good memories. It's good to know hospice care helped her be at ease.
hhfp, sorry that your wife is at the hospice stage now. I hope she, you, and all the family and friends will find comfort and gentle care.
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Thank you muddling through. I'm sad she is gone but happy she is no longer suffering.
When my decline happens, I want to go to the same place she did. Excellent care for her.
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Lindalou,
It is wonderful to hear from you. It has been a long time.
Have done a genomic profile of your tumors? If you have the PI3K CA mutation, you can try to get on Alpelisib through a Compassionate Care appeal? So many exciting targeted therapies in the pipeline.
Please keep us updated. You are an inspiration to everyone here.
Hugs, Susan
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Hi Susan! I do have the PI3K CA mutation and will ask about Alpelisib. I did hear the side effects are nasty.
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My mother has been suffering from dysphagia.. she is not able to swallow her own saliva.. if anyone knows a possible management for it, please let me know.. Her MO is suggesting PEG/NG tube/subclavic central tube.. not sure if there is any other available treatment.. all these above come with serious caveat
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Maya I’m so sorry I don’t have any answer or experience to lend you, just some soft hug and prayers.
Looking for a little support of my own. How do you all handle new mets on your scans? Just found 2 new mets in the caudic head & left cerebellular hemisphere 3mm each and the news hit me like a truck. I also have more lung mets but that felt like child’s play compared to the additional news this week. My last brain met was in the meniges and not the actual brain matter. I also have something suspicious going on the the dura no one can figure out...still feels like I just finding out I have stage 4 cancer for the first time...what the heck. Anyone have experience treating these locations? I only ever had surgery with one shot of SRS to the 1 mets previously.
Thanks and I hope everyone is getting along well and staying warm0 -
I usually freak out at first and then calm down. A lot of my panic is the unknown. I have already had WBR and some local radiation about a year and s half after that. At this point, I try to use meditation to keep myself more calm. I figure I have done well so far, I have been lucky. When all else fails, I exercise for the endorphins. Sounds like you should be able to get spot treatments for the new burgers, I am sorry for your stress though.
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what is the best way of treating cancer in the brain lining and spine fluid in spine. I have just finished WBR and about to start chemo Erunivone
Is there any hope for me? My Onc says s poor prognosis which has spiralled me into depression
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They can put a port in your head and deliver chemo directly. I’m not sure how viable systemic chemo or radiation is for spinal fluid since it moves around.
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This is the port that goes into the head. For cancer that is in contact with CSF, Intrathecal (into the head) chemo may work.
https://en.wikipedia.org/wiki/Ommaya_reservoir
Also, ask your MO about immunotherapy. There are drugs now that work on PD-1 and CTLA receptors and are administered via IV as systemic treatment... apparently these receptors tell the lymphocites to leave the cancer alone - which we do not want.
But remember, the tumor may swell up while being attacked (immune response), so best to try early when you are stronger and when the tumors are smaller... it's pretty tight in the skull and spinal cord... swelling would be really bad. Good luck!0 -
Delvzy,
I was where you are back in Sept 2017. My radiation onc said WBR would only give me 3-6 months, but I'm still here, 17 months later. They (the doctors) don't know everything. Everyone's cancer is different. Mine's not the same as yours, and yours isn't the same as the patient across the way.
It totally depends on how aggressive the cancer is, how fast it's mutating, whether or not it's chemo-resistant and unresponsive to Tx, your overall general health, and a variety of other factors. You could still be here 18 months from now, too.
Yes, I was VERY depressed when I found out it had spread to my brain. I went into battle mode. I paid for my niche (for my urn) at the cemetery, got all my paperwork in order, reviewed the will, made sure my life insurance was paid up, wrote my memporial and picked out the music, etc. It's actually a good thing that I did all that. Now I don't have to do it.
I'm praying for you that these feelings will pass. In the meantime, FEEL them. If you try to "pretend" they don't exist or ignore them, it will only get worse.
L
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Thsnks L good advice xx
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hope that odd chest pain is gone by now. Did you get any information about what it was? Did you manage ok with the WBR ? I am having anxiety about radiating my skull mets and turned around and left two weeks ago as they were planning to make my mask. Cannot put it off too much longer .
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I used 4-7-8 breathing to relax me while they made the mask. I have heard others mention thinking of it like a facial since it involves really warm towels when shaping the mask. Overall, I only had anxiety the first time I had it on.
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