Brain Mets Sisters
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I haven't experienced that...I'd call your MO or a pharmacist and see what they have to say.
L
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My mother tried Tykerb+Xeloda for a month with too many side effects with nausea and diarrhea alternating day by day. After consultation with our oncologist, he has asked us to start with Tykerb only without Xeloda to get her on something atleast.
illimae Checked with my onc regarding Gamma knife surgery. He said that will not improve things. So the best bet for us is going for Lapatinib and wait for results
Has anyone started with Tucatinib? How effective is it? Have been reading that its efficacy is certainly more than Lapatinib. Also please check the phase I clinical trial of CAR T-cell therapy started by CITY of HOPE hospital and Mustang BIO. This trial is specifically targeted for HER2+. Certainly a step in the right direction.
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Hi Ladies,
I hope everyone is doing well. You all seem so knowledgeable and was hoping you could help me with a quick question. Is it quite common to have targeted radiation to the tumor site after craniotomy?
I had a crainiotmy about 4 months ago and met with a radiation oncologist shortly after. He didn't recommend radiation for now but I think he was just assessing me for whole brain radiation, thinking that the gamma knife team would assess me separately but I don't think they ever did. Should I be insisting on targeted radiation?
I guess that's two questions, I'm just worried about Dr's dropping the ball because there's so many of them involved.
Thank you 😄
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Allybee, I think any future rads to the tumor bed would depend on the latest MRI. If the craniotomy didn’t resolve the issue or new growth is seen, I think rads would be used to finish it off. Hopefully some more familiar with craniotomy protocol will add their input too.
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ok, just had a brain mri about a month ago. The radiologist said the changes she saw were consistent with changes from cyber knife. Yesterday I started having some pains (short little jabs) in the place where I got cyber knife. I have no other indications anything might be going on. Anyone else have this happen?
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Thank you illimae, that seems to be the position they're taking. My latest mri showed a tiny spot but they couldn't determined if it was scaring or a miniscule bit of tumor. We're going to rescan in a couple of weeks. The waiting is the worst.
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I had one session of SRS a few weeks after my craniotomy even though they were able to get all of the tumor (I was lucky to just have 1). It was a precautionary measure. My tumor wasn’t in my brain tissue so maybe that means a different protocol? I also get periodic and quick head pains, but have swelling in my brain we are trying to deal with that I attribute the pains to. Scans have been clear tumor wise since the surgery
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Gracie, I get frequent and sudden twinges of pain, not always painful, sometimes like an itch. It began after my first gamma knife procedure, happens at random and happens regardless of clear scans or new tumors. I’ve asked my neuro rads onc about it but she isn’t familiar with this particular complaint.
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Parry and Mae, thank you for the info. My scan was really good but you just never know! I’ll probably just mention it to my chemo nurse so she’s aware of it.
Mae, mine is exactly like you describe. Very fast too and then gone. Hoping it’s just from healing
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sorry ladies, but I’m logging in to report bad news;
My brain MRI on Tuesday showed significant progression and I feel it. My neurological symptoms are vastly worse (I can't walk more than 5 feet without a cane now) and have been having alarming personality changes. I lived by myself in an apartment in Manhattan for 8 years, now sadly, my parents are helping me pack up my life to move back with them and get a home health aide to help me with personal hygiene and other things (right now, showering, even while sitting) gives me major anxiety. That's a key personality change, I've never had any anxiety or panic attack's ever in my 37.5 of life before.
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Becs, so sorry to hear, especially from a fellow TN in their 30’s. This is such an unfair deal
Is there anything they can do? SRS, WBR or a trial maybe? I know everyone has their own beliefs about diet, but I’ve been trying different diets the past year+. When I was on the Ketogenic diet for 6 months my tumors were growing very very slowly, so much so, my onc was hopeful the spots in my lungs weren’t mets bc they were so small and barely grew between scans. Part of that time I wasn’t on any treatment for various reasons so I think the diet may have helped me. It’s not an easy diet to follow though. I’m on a basic regular healthy diet now and they are growing much faster so I’m going back to Keto to see if it makes a difference. Maybe it could help you as well? What about CBD oil? Hugs 0 -
Becs, I’m sorry about these results. Are there any trials or treatment changes that could help?
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Becs,
So sad to hear about your progression and that you have to give up your independent life. Thank goodness you have supportive parents and can have a home aid. What does your MO say about your next treatment? I agree with Parrynd1 that a keto diet may slow things down.
Keep us updated when you are able.
Big hugs, Susan
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becs what crappy news. I am so sorry. The personality changes must be terrifying. I can only imagine. I recently developed some major plane anxiety just within the last two months and I think it’s tied to being so worried I may die by cancer that any turbulence just thrusts me into an anxiety attack that like you is totally abnormal. It’s more terrifying that I can’t control my mind than anything else My thoughts are with you. Any anti anxiety meds / techniques that may help? I have the same questions and comments as others so will wait for you to respond.
Much love and hope,
Josee
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Becs, like everyone else, I am very sorry about the progression and changes at home. Have they offered WBR at all?
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Lumpie posted the below in the breaking research thread, I thought some of you ladies might find it interesting.
New City of Hope CAR T cell trial focuses on HER2-positive breast cancer patients with brain metastases
The phase 1 trial will be conducted in an outpatient setting and will also be the first to use intraventricular delivery of CAR T cells directly to the brains of these patients. It will test the safety and effectiveness of the CAR T cell therapy for patients who have tried other types of treatment that are no longer effective. "Our hope is that the HER2-specific CAR T cell therapy will target and kill HER2-positive cancer cells, and safely and effectively treat brain metastases in these patients," CAR T cell therapy is a type of cell-based immunotherapy in which a patient's own T cells are reprogrammed to actively seek out and destroy cancerous cells. For this trial, the patient's T cells will be isolated from the blood and genetically engineered to express a CAR that allows these immune cells to target and eradicate HER2-positive cancer cells.
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No mention whether this trial is approved by the National Cancer Institute, a requirement for my wife to sign up.
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AllyBee,
Thanks for sharing. So exciting! Since it's customized, I wonder why it's only for HER2+?
Hugs, Susan
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Interesting point Susan. Could it be because Her2 positive are generally more aggressive? I've seen posted a few times that immunotherapies seem to work better on "hot" tumors, like triple negative . I'm just guessing though and might be on the completely wrong track, I don't really know enough about it to give an educated response. I did see some research a while back about trying to make "cold" tumors "hot".
Or maybe it's just that this particular trial is focusing on Her2 positive. Hopefully other researchers are working on it for other breast cancers.
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Does anyone else find it confusing how they write "HER2-positive" and "HER2-targeted", it hurts my brain. It's like they are saying people who have tested positive for being Her2 negative. Hope it's not just me
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Becs,
So very sorry to hear of the progression. You are in my thoughts as you navigate these new developments.
Much love.
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thanks everyone! I'm not a candidate for WBR because they are not new mets, they are the same stubbornly heavily pre-treated ones since Feb 2016.
I do have an appointment tomorrow to meet with the lead researcher of this trail. He already spoke to my neurologist and MO, so maybe I've cleared all barriers already and can sign up tomorrow,,. I'll keep you updated!
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For those who have had a craniotomy with a plate put in. Out of curiousity did your surgery area heal back smooth like how your head was beforeor lumpy? Mine feels like the surface of the moon & is in the back so I only have my fingers to go by. Nothings wrong I don’t think...just curious how others have healed up.
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I have a flat spot and two little bumps, I assume that they are screws. They hurt when I lay down on a hard surface. I'd hate to think what it would look like if I lose my hair
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My beautiful mom passed away yesterday morning. I miss her more than words can say. 😢 Thank you for your advice and answering my questions along the way. Reading about your experiences and hearing your stories helped more than you know. I wish you all the very best.
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So sorry about your loss. I am sure your mom is proud of you even now while she is looking down. You both are remarkable warriors. xoxo
Daniel
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Tre4, I'm so sorry about your mom
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I am so sorry to hear about your Mom.
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Parryand1, my craniotomy plate is mostly smooth. There's a tiny, about fingerprint sized, indent on the one side.
Tre4, I'm so very sorry to hear about your Mom's passing. May you find peace and comfort in the coming days and months.
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Thank you for your encouragement! I have been in a scary place since the brain Mets diagnoses in April 2018. I had wbr and it was very successful but having progression. Started xeloda and tykerb made it thru one cycle and was hospitalized with dehydration from the diarrhea. Then I recovered from that and had an episode that they thought was a TIA but decided was just a symptom of my Mets. I’m still on hold from chemo waiting to have Omaya placed for IT herceptin. Hoping that will be successful since herceptin wiped out my bone and lung Mets in 2016
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