Brain Mets Sisters
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If she is having whole brain radiation, expect fatigue for a while and maybe nausea, meds can help with that. If she’s getting short and targeted radiation to the specific spots, side effects should be minimal and pretty easy. Be sure to ask the radiation oncologist what to expect in the coming weeks and months.
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Roro11 - I was on Enhertu for 10 months in the DESTINY04 trial for HER2 low patients. I am ER+/HER2 low (IHC 2+). My brain mets were first found on a pre-trial screening brain MRI and were treated with Cyberknife. I have not develop any new brain mets or progression of treated brain mets while on Enhertu. There is some evidence in the early Enhertu trials that Enhertu is effective against brainmets. A number of women in the Enhertu facebook group had brain mets shrink.
Semeentaj - Brain mets are scary for sure, but radiation is a very effective treatment in the vast majority of patients. As illimae said, patients with HER2+ breast cancer also have good systemic treatment options for brain mets, like Enhertu and Tukysa. I had 6 brain mets treated with Cyberknife in April 2020 and did not have much in terms of side effects.... a little fatigue. One of the treated mets did develop radiation necrosis starting about 9 months after treatment. It is very difficult for doctors to tell the difference between radiation necrosis and tumor regrowth/progression, so I had that area surgical removed 3 weeks ago. Thankfully is was all radiation necrosis. Best wishes to your mom! I'm glad that she has such a caring daughter who is taking an active role in her mom's treatment!!!
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illimae - thank you for the suggestion. I will for sure be asking that. I have a list of questions written down so we can ask the RO when we meet him.
Theresa - yes, it is scary. It feels like the end, but I have to remember that things are not always as they seem! I’m happy to hear that it wasn’t progression for you, rather it was just necrosis. Thank you for your kind words, they are definitely comforting. I hope to be Able to come back and chat with you ladies and we go along
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Leftfootforward, thank you for reply. I'm glad Tuksya is working for you, it gives me hope that it might for me too. Your picture you posted with your i think 18 year old son (8 years since brain mets diagnosis, keep living your life) gave me hope when I was diagnosed in October. So thanks for that too
Kikomoon, wondering how you are doing since are timelines/age are so similar and we both did WBR. Hope you're well and that the radiation and Xeloda are working for you.
An update - I received WBR, and have been on one cycle of Xeloda/Tuksya/Herceptin since I had my brain progression 1 month ago (innumerable mets and leptomeningeal disease). I don't have a brain MRI until mid July, so I guess I won't know if it's working until then. But I want to know what's next if this doesn't work, so I asked my MO yesterday, and he said that I don't really have any good options left and he would consider a clinical trial. This devastated me as I really wasn't expecting that. To clarify he said this is if my brain mets don't respond, and not necessarily my leptomeningeal disease (which we do have an option for, IT Herceptin.)
But, after I came home I searched my notes and read Bestbird's Insiders Guide (which is so so helpful, thank you Bestbird). I don't understand why he would say that I have no options left. It appears there are lots, or at least some, other chemos to try that might get into the brain. Any thoughts or insights about this? All I have been on are carbo/gemzar briefly (which did shrink my brain mets a bit), then Taxotere/Herceptin/Perjeta, and now Xeloda/Tuksya. Don't I still have options for my brain?
I used to have a feeling that my MO had written me off as a sad case with a poor prognosis, and that maybe he has even given up on me. But I really like him as a person, he's very relatable as he's my same age with the same age kids (3 and 6). His treatment plans so far have seemed good. I'm just sort of baffled by this.
Thanks in advance for any thoughts, best wishes to everyone.
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SuperDeNovo,
So good to hear from you. I am doing ok since WBR. Since starting the H+T+X two weeks ago, my biggest issue has been no appetite, like a kid, everything is yuck. I have never needed to track calories to make sure I eat enough, as it’s always been a life of trying to LOSE weight! I started Remeron to try to stimulate the appetite and I’m not sure it’s working just yet, maybe a little.
Fatigue has been incredible the last week until today, I don’t know what happened but I have a lot of energy, enough to start cleaning out some of my things. This new life makes you question material objects, and DH said this is one thing that would help his stress levels, to get rid of some “stuff”. Fine with me as a main priority for me is to make this is as “easy” as possible for him.
I have to believe there are more options for us but have not asked my MO yet, for fear of hearing the same thing. Sticking my head in the sand for now I guess, although I look at these boards on BCO constantly for hope and to not feel alone, even the topics that don’t apply to me.
I do like my MO too although she is super young and fresh, we just jive, but I got virtual second opinions from MDA in Houston after we discovered brain mets. They said to call them if my scans in late June/ early July don’t look so good....so maybe there is something. I just can’t deal with “no more options” right now so will cross that bridge later.
I’m really hoping there are more options. I’m just going to ride this wave of random energy I got today and try not to worry, will have enough of that at scan time 🙃
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superdenovo and kikomoon, I had my 6th gamma knife brain radiation almost 2 weeks ago and am on the Xeloda, Tukysa, Herceptin combo too (since September 2020). Last month we found 2 new spots in my brain but we’ll wait to see if this was a blip from being off treatment in December (due to cardio concerns) or not.
Now to my point, my MO at MDA had noted that if there is further progression, we should try Enhertu, which got FDA approval in December 2020. You may want to ask about this too. “No options” is not good to say or hear, especially with many trials and news meds coming down the line.
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Thank you, illimae!! 😘💐💐
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Kikomoon, glad to hear you're doing ok. I hope you can get your appetite back soon. Clearing stuff out is on my to-do list too, I know my DH would be thrilled to get rid of some clutter/old clothes. Definitely lowers the stress level in the house (and the garage lol).
I haven't had much fatigue yet, but I've had some nausea and vomiting that I'm trying to get the right meds for. I think it might be from the Xeloda and not the WBR but who knows.
Illimae, I did ask him about Enhertu and he said it doesn't really cross the blood brain barrier. But, I read that it does? It's good to hear your MO thinks that it is an option. I am also interested in TDM-1 as a possible option, although I need to research that some more. (Not sure if anyone here has tried TDM-1, if so I'd like to know if it helped your brain.)
I got a second opinion a month ago on my leptomeningeal disease from a brain specialist. She was great, so I think might go back to her for another opinion... I just need to know what's next if this doesn't work. Although, I guess there's no predicting what 'doesn't work' might look like.
Sending good wishes to all, as always.
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SuperDeNovo37 - I believe that your oncologist is misinformed with regard to Enhertu crossing the blood-brain barrier. It is an extremely effective treatment for HER2+ patients. There is evidence from the Phase 1 trial of Enhertu that shows that it crosses the blood brain barrier. Also, there are patients on the Enhertu facebook group who have experienced shrinkage of brain mets on Enhertu. You can check out the facebook group here:
https://www.facebook.com/groups/478640293032630
I was on Enhertu for 10 months on the DESTINY04 trial for HER2 low patients. My brain mets found in a screening MRI just prior to entering the trial and they were treated with Cyberknife. I did not have any new brain mets appear while on Enhertu and the treated tumors have remained dead. I did have radiation necrosis to one tumor that I had removed recently, but there was no active cancer.
Best wishes! I believe that you have options. Local treatment alone of brain mets is very effective.
Theresa
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Has anyone had high AST and ALT after WBR? I just finished two weeks and went for my chemo treatment today and my AST has jumped from 44 to 160. And my ALT has jumped from 31 to 142. I don't take any medications not even Tylenol aspirin or ibuprofen. I am taking melamine for memory loss but they said that wouldn't cause an increase. The only other thing I had done was radiation and a filling to one of my teeth so I did get the local anesthesia for numbness.
I have never had these numbers increase before. Any thoughts?
Thanks
Julie
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jjzn, I haven’t had WBR but my numbers went up after my craniotomy last year. I think it was the pain meds or other meds they gave me and returned to normal after labs a few weeks later.
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Thank you Illimae hoping this is the case.
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Theresa, thank you for that information. That is tremendously helpful and gives me hope.
Jjzn, I also have WBR recently and am on memantine, I didn't have that spike in my liver numbers. Hoping it's just a blip for you.
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SuperDeNovo
Me too my tumor markers also jumped 300 points each. I know I was off treatment for 4 weeks but that seems like such a high jump.
Thanks
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super de novo- I am on TDM1. It definitely slowed my progression of brain Mets. I have a scan in end of July to see if I have any new lesions since match when we treated 6 spots. Those 6 included 5 areas of previously treated lesions to clean them up. I am hopeful to have no new lesions or just a few new ones. I was growing 10+ prior to tukysa.
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Hi Everyone,
I have been hesitant to post an update on my brain MRI because, as it turns out, it was good news. My MO said my brain is "perfect" -- I'm not sure about that but no mets. I feel so very fortunate and I am with you all every minute of every day. My scans did show two nodules in my right lung 2mm and 3 mm - which my MO has not discussed with me yet. The results were just posted to the patient portal on Friday,. I will have to check out some other threads to gain some insight on them.
In the meantime, please stay strong and know that I am sending love and positive thoughts. I am in awe of the grit and resilience shown in the face of this horrible disease.
Thanks,
Nancy
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nowaldron, I love good news. A perfect brain is great. I forgot though, did you receive treatment for brain mets or did it turn out that you never had any? Either way, congrats!
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Nowaldron, never feel bad about good news, we all get encouraged by it.
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Jjzn
I have recently had wbr with some added gamma knife in spots the wbr had to leave alone due to past skull rads. And had similar increase in liver labs. I have been a month off treatment and have liver mets. My MO said my numbers would be crazy for a month but I had to heal before I go back to treatment. Hang in there. The fatigue is kicking my but. I do try to walk daily even if it's just around the outside of my house.
Take care all,
Mary
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leftfootforward, I added TDM1 to my list, glad to know that is an option as well. Thank you and I hope it continues to work for you
Jjzn and Mary, now my liver numbers are elevated as well, just sharing. Although I have been taking a lot of Tylenol for a fever (I’m currently admitted to the hospital for fever while on chemo) so maybe that could be contributing. Who knows but I think I will ask my RO about it.
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Mary how long do they have you off treatment before you go back?
I wonder if I should have taken some extra time but they didn't suggest that option. The fatigue is funny because some days I feel really tired and other days not so much.
De Novo hoping this fever clears quickly for you. I will see my MO Thursday and will ask her to. I saw her last week before I received my numbers so didn't get a chance.
Julie
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Jjzn,
I have some fair days but no good days. I will be 45 days off treatment if we stick to plan. The days of treatment and the month after. Holding my breath but my mo is still doing labs weekly and seeing me every other week. I feel well cared for.
Hang in there all,
Mary
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nowaldron: I was wondering where you have been Your name popped up here. A perfect brain!! That is great news. I am so happy for you. I don't think my brain would come out so well. I'll blame it on the acid I took at the Strawberry Mountain Fair all those years ago. Ha ha. Keep us all posted on the lung nodules.
SuperDeNova: Tylenol is hard on the liver. That could be a contributing factor. I hope you are out of hospital now and at home.
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Elderberry, still in the hospital unfortunately. They can't find the source of infection and I'm still getting fevers. They're taking good care of me though
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Hi Elderberry,
Great to hear from you, as always! I hope you are doing well!
I had a virtual visit with my MO yesterday about the lung mets - she wants to take a wait and see approach. They are tiny so she is not too worried. We will scan again in three months. To be honest, I feel guilty sometimes that I am doing so well while so many of my sister warriors are fighting so hard. I tell my therapist all the time that I consider myself lucky and she says "well, in a certain context you are lucky." I am in a breast cancer support group now with four other women and they have all had recurrences. Two of the women are in their 30's and one has a 10-year old and a one-year old baby. I hope that they see in me someone who is beating the odds and maybe that will give them some hope as well. I know my number will come up, but, for now, I am still coasting along.
Best wishes to you and, again, I was so happy to see your message! :-)
Nancy
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About two weeks ago, I was diagnosed with 15-20 brain mets. I will start WBR next week. I am moving quickly but I am being careful and deliberate. I am not a pull-out-all-the stops person. I am 72 and am ready to leave this world. I will try the 15 treatments my RO is doing and see how it goes. It took me until today to settle down and understand what is going on. Brain cancer causes cognitive decline as do the treatments. I am working on getting Namenda with my doctor and pharmacy right now. The brand name was $600 so I asked about generic. It is available so it may take all day (week?) but I'm working on it.
This whole mess started with my J&J Covid vaccine that I got on March 8. I have MS also but do fine with it. Only slight disability and nothing cognitive. Exactly two weeks after the vaccine, I had a major crash. 24 hours of whole body pain and then my brain took a vacation. My brain function was gone. I dealt with my MO and several other doctors but no one knew what was going on. Too many variables. My regular PET scan was due and done and that's when they saw the brain mets. I don't want anyone to think that I think the vaccine caused the brain mets but what a coincidence. My mental clarity came back after taking the Dex I am on for the last few weeks. I don't mind not sleeping as long as I can think.
So I plod along in this situation. I have been on BCO since my first diagnosis with stage II. I love and need the support and appreciate you being here. I know I have a different attitude but please bear with me. I've known ellamae for a while and know that I am in good hands here.
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Jaycee, welcome to brain mets, although I wish I didn’t have to say that. I have every expectation that you’ll do fine with radiation and while cognitive issues are definitely a concern, I can say that my initial chemo caused far more problems with focus and memory than any mets or meds since.
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Jaycee, one thing I do want to clarify is that at least in my own case, WBR did not cause cognitive decline for me and I was not on Namenda. I will say for a couple of weeks after the radiation, I had trouble following books but I have gained that all back. Once your brain is treated, you should be restored to where you were before the mets were found. Mae is right, chemo and other meds cause just as much cognitive issue as anything else.
I am sorry you had to join us here though but sure that you will have good results with your treatment. I am five years out almost and feel the same as before the WBR. I hope that helps a bit.
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I took Namenda (Mamentine) during and for several years after WBR. My insurance continued to pay for it. No SEs. It was controversial back then but I figured, why not? If I can reduce the risk of getting Alzheimer's unrelated to brain mets, why not?
Well, since then, they have found that it only potentially helps with moderate to severe Alzheimer's. It won't help to slow onset and thus would not help with cognitive decline from WBR. I'm not sure if it was canceled by my RO or the insurance company but I was not given any more refills.
I definitely experienced a loss of short-term memory. Don't know if it is the WBR, other cancer treatments, or age. Probably a little of all of these. I had testing done by a cognitive specialist and she did find some short-term memory impairment but said that my high-level functioning was well above average. I can use a smart phone to help me with short-term memory loss. High-level cognitive functions are irreplaceable.
Hugs, Susan
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My liver numbers are almost back to normal. AST 65 ALT 66. So it looks like maybe it was from just being off treatment for four weeks? 🤔
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