Anyone with HER2+ do the brain Mets thing?

[Rhwright12]

Hi! Was just diagnosed today with brain Mets...anyone with any advice with radiation whole brain or otherwise...and what meds to take next?

Thanks!

[klhowe]

Rhwright12, I do not have any info to share about brain mets.

I am very sorry that you are going through this.

Please stay strong,

Karina

[MyMiracle13]

Hi. I had 10 sessions of WBRT last August. I had multiple lesions, most of them small (around 21 I believe.) I experienced a lot of fatigue afterwards especially the month after my sessions ended. And yes hair loss. I also experienced loss of appetite, loss of weight and muscle mass but I don’t know if these were due to the Mets in my lungs and not because of the radiation. The radiation sessions took only around 5 minutes and didn’t hurt. Your radiation onc is best placed to explain the procedure to you. I do suggest that you ask for hippocampal sparing if you are going to undergo WBRT and also Memantine tablets. These are to prevent cognitive impairment.

If you have few lesions, you might be offered SRS. It’s a 1 day procedure I believe. Fast forward to today, I had a follow up MRI last Saturday and the results showed that all the lesions have been reduced. I will most probably have SRS on the remaining larger lesions in January. I am also less fatigued, able to eat more and regained some weight.

It was a struggle for me then but there is light at the end of the tunnel. I’m on Xeloda now for my extracranial Mets. Prayers for you🙏

Maria

[Rhwright12 in reply to MyMiracle13]

Thanks for the advice on the meds and Hippocampus sparing. I haven’t talked to anyone yet that appears to know what to say when I talk about impairment from WBRT. It doesn’t matter if they are full proof or not just say something that makes me think u care and you’re trying! 😀 Take it or leave it doesn’t work for me.

[MyMiracle13 in reply to Rhwright12]

So far I have all my cognitive functions. Maybe the hippocampal sparing and the Memantine are helping. But it’s early days for me and I know that some side effects can come in long term sometimes 6 or more months after WBRT. I am not Her2+ by the way. I am ER+ Her2-. Oh someone also mentioned Prednisone. I was given Dexamethasone prior and during my WBRT and yes I suffered from it. It gave me GERD which made me lose appetite. After I stopped the steroids, I felt so much better. Some patients do well with it. Others not. I’m glad I only took it for about 3 weeks.

[Andersl in reply to Rhwright12]

Partial whole brain radiation is not a recognised protocol in many hospitals. Hence its not often offered/talked about. I was adamant i didnt want whole brain radiation. They listened to me. They knew i had worked in brain cancer research for several years (non clinical role) and hence knew the potential side effects.

[Hidden]

Oh, dear! I'm so sorry about the new mets! I have no insight about the radiation but am wishing you the very best...Love, Lynn

[Paigeparker]

My Mom is HER2- but had a small spot when she was diagnosed a few months ago. She had 3 or 4 rounds of CyberKnife. No side effects, just lost her hair in the spot. I assume it 'worked'. (All she told me was that "everything looks good. Everything is shrinking." in terms of all her mets) She currently only takes Letrozole.

Best of luck to you.

[Iwasborntodothis]

Although I have cancer now, my sister also had breast cancer and fought it bravely for over 6 years so I will probably be a little too blunt - I apologize in advance.

My sister had full brain radiation and had some minor side effects related to her vision (which was never great anyway) and loss of feeling in her foot (which could have been other chemo) that caused her to stop driving. She continued to work and live a very normal life for 2 years after this.

I felt that her cyber knife two years later when mets returned caused more damage but maybe it was just 6 years of treatment. I really hated - as a caregiver - when she was on prednisone because she was an angry, impulsive, eating machine. I would want a very strong reason for being given this medicine as part of my treatment.

She also was given IV Kadcyla every 3 weeks for several years and did not seem to suffer many side effects from this.

I hope this helps and I am praying for you on your journey.

[Rhwright12]

Thanks! I’ll take any info. I can get

[Andersl]

I wrote a lengthy reply.... the screen froze before I could send!

In a nutshell... switching to kadcyla and having partial whole brain radiation have worked/continue to work for me.

My rt avoided the cognitive and memory areas.

I had steroids to cover me during rt. Wanted to reduce any inflammation as I also have a brain aneurysm.

I was very tired for a few months and ate like a horse. I developed a brain fluid leak (can happen with mets on lining but rare),. Im over that now... bed rest helped.

Treatment was in April. Only long (?) Term side effect from rt (?) now is slght memory impairment. I forget a word im searching for. Its frustrating but not worrying.

Hope this helps. Please ask if you have any questions.

Xx

[Rhwright12]

Only concerned until I see how motivated this personnel said is to help me and move forward in this field and not do more than what needs done. I’m a mover and a shaker and I expect no less from others... That is definitely part of my problem....🙈

[Amf1983]

Hi

In early 2019 I was diagnosed with Her2+ MBC with mets to lungs bone and brain. Started on perjeta and herceprin , taxol and xeloda. Had stereotactic surgery for 3 brain mets and changed to kadycla , Herceptin, xeloda . Next mri showed brain mets gone. After 3 months stopped kadcyla because mri showed too many lesions to count as kadycla didn’t get through brain barrier for me.

Had whole brain radiation last October and switched to neratinib , herceptin , xeloda and xgeva. MRI in June shows zero brain lesions and lung and bone almost gone . Also recently stopped neratinib and replaced with tukysa instead which has better success getting through brain barrier . So far MRIs are good . Also took momentine after whole brain for 6 months to help retain memory. Only side effect of whole brain for me was a section of hair hasn’t grown back .

[Rhwright12]

Thanks for the on-site....this really helps...

[Mindysooty]

Reading all these responses with much interest. Ive recently been dx with mets to lining of brain, everything confirmed yesterday. Ill be having WBRT because theres too big of an area to do the stereotactic radiation, not sure how many areas in total but widespread. I asked what other options I had and she told me the only other option is not to have WBRT but she said I was fit and healthy enough to endure it so I will. Having 5 initial sessions then review and may have another 5. Afterwards looking at which meds to move forward with. So disappointing as Palbo (Ibrance) and letrozole has worked really well for me for 19 months with few side effects, in fact I had just had progress scan results on other mets which were all good, then this happened. Ill write down the cognitive assisting meds mentioned so once again thanks to this group I can go in armed with info. The onco put me on steroids to reduce inflamation too because on a daily basis I was having numerous episodes of going numb all down one side and violent headaches. Its been awful but the steroids have helped already. Good luck with everything rhwright. Take care and thankyou to everyone for information x

[Rhwright12]

Had second Radiation today...So far so good...And yes I asked for the Mementine...and got it...yes was great to have the advice...Bought a wig and some slouch hats today just n case. 😀 This is my first progression and med change in 41/2 years...kind of been on auto pilot so this is a big change for me! So I’m n to finish up radiation by Dec.10....then hopefully back to peace and quiet by New years...😀

[kduck in reply to Rhwright12]

Do you know what your treatment plan will be after you finish radiation?

[Rhwright12 in reply to kduck]

No... I go to my Onc on Wednesday.... hopefully he’ll have a plan then! ...😀

[Rhwright12 in reply to kduck]

Hi! Found out yesterday that we will keep with the same meds...Herceptin/perjeta...Onc said PET scan shows I’m normal from the neck down....Lol! Thanks....I said I’ve been hearing that my whole life 😀 So radiation will be treatment for brain Mets and Herceptin/perjeta for neck down...been working for 4 1/2 years...Hopefully we settle down for another couple years...😀 But if numbers raise over 500 then we switch to Kadcyla...

[kduck in reply to Rhwright12]

Great news! I’m praying for you and I hope you have many many more years!

[Rhwright12 in reply to kduck]

Thank u! My team doesn’t seem like they are overly excited about this one! Treat it and stay on same meds as long as we can....still on 1st line of treatment....just added 15 RT...then back to auto pilot hopefully for a few more years...😀

[kduck]

I’m praying for you!

[mariootsi]

I'm praying for you as you face your new treatment.

[NamasteLove]

I have brain mets. And a new oncologist. My other oncologist moved to Dana Farber in Mass. She was awesome. Her replacement, not so much. Disengaged, not encouraging.

[Rhwright12 in reply to NamasteLove]

Sorry! A little encouragement goes a long way...Totally get it...Tell me there’s new awesome trials in the works!

[Supermary]

stage 4 HER2+ Uterine cancer

In the ENHERTU trial two years this June

No brain METS but ixrosses the brain blood barrier and is FDA approved for MBC HER2

You might want to ask about it