Brain Mets Sisters
Comments
-
Just read on another thread that Jaycee49 passed away at the end of July. I am so sorry for her family and friends both here and in real life.
0 -
My heart goes out to Jaycees family and friends.
0 -
My heart also goes out to Jaycee's family and friends
Thank you Goodie, Mara, Kathy, Kiko and Leftfoot for your kind words! It has been a relief, I just hope the good news lasts and also spreads to everyone on the thread.
Mara that's frustrating news but as you say, it makes sense not to be too stressed as yet. You are always such a reassuring and level-headed presence on this thread and I know your strength will carry you through
0 -
Phet, I have a friend who had brain mets more than a decade ago! One year past her Gamma Knife for 4 large tumors she had an MRI that showed a mass and they did brain surgery. The mass turned out to just be radiated tissue! She's had no more MBC since.
I pray that all of you do as well as Judy!
Love from PatGMc
0 -
Thank you Pat, I am sure we all would hope for such results. Always encouraging to hear that. Some are approaching a decade here as well and it is good to see people persevere through such a diagnosis. I appreciate your thoughts.
0 -
Hi. Im 44 - ER/PR+, Her2-. Dx stage 3, and after chemo MRI showed tiny brain mets. Started as 2, then had 5 total. All zapped during stereotactic radiosurgery a week ago. Im on Verzinio & Letrozole. Re-scan in 5-7 weeks.
I'm already so incredibly nervous for this scan.
Can anyone tell me what forums to read here?
Id love to have a brain mets community.
Thank you.
0 -
Ssmith, I’m 46 and have been dealing with brain mets since 2017. I’ve been treated with gamma knife SRS 6 times over the years (1 to 5 mets each time) and had a craniotomy in Jan 2020. Overall, the few and tiny spots have been easy enough to handle and I’m doing well with no limitations on general life.
I don’t know if your current meds cross the BBB but if you find more brain mets popping up, you may ask about something that can get to the brain, many medications cannot cross and are ineffective in the brain.
Good luck with the next brain MRI.
0 -
Verzenio does actually cross the blood brain barrier and will help any leftover mets or possibly prevent new ones.
Besides this forum, do a keyword search for letrozole and ER+ve threads in the stage IV sections since you mention letrozole. For brain mets, this is the place to be, lot of people here and quite a few of us are long term survivors of brain mets with decent quality of life. Good place for questions with any of us.
0 -
Hi,
I wanted to add my mom the the list of those getting whole brain radiation. She completed her 10 treatments Aug 13 with minor side effects. However now, day 3-5 post radiation, she is experiencing extreme fatigue and lack of appetite. I'm hoping the fatigue and lack of appetite will not last long!
0 -
I’m done with wbr as of Monday. But have zero energy. Zero. Any tips.
0 -
If you can do it, a morning walk first thing, even as little as 5 to 10 minutes can help set a better energy result during the day. I say short because I find sometimes if I go to long, I wind up very tired. Add extra protein to whatever you are eating. I like pb and me powdered peanut butter. I sometimes add it as extra on my meal I am having. By the time I season everything, I cannot taste it. Also blend up some skim chocolate milk with some of the PB and me. Thickens it up and is good. Lot less expensive. If can eat it, cook up spinach, can shop and add to meals, help your RBC. These things can be helpful and the small walks should stimulate your appetite as well. Walk throughout the day, even if your march on the spot or march your feet up and down watching TV. Anything that brings blood flow helps. Recovery comes faster and SE are fewer.
0 -
Kathyamelie, I am also on Tukysa.(tucatinib)600mg daily along with Herceptin (trastuzmab). We dropped the Xeloda after 3 months due to many side effects. I am clear from the neck down.
Had my second SRS for a spot 1.6cm in the cerebellum June of 2020 and began Tukysa in Sept 2020, almost 1 year. Brain MRIs have shown that the spot in the cerebellum is only necrosis, no new growth. One very small 2mm brain met showed up on my June MRI in the right lateral temporal lobe. Neurosurgeon says to stay the course with Tukysa.
I have another Brain MRI on Sept 8, will let you know how things progress. The tukysa has been easy to tolerate, but we have to watch that liver enzymes don't elevate. Very grateful to have Tukysa that can pass the blood brain barrier.
0 -
hi. So I finished wbr 2 weeks ago. I’m still a bit disoriented had to shave my hair no energy not even to hold my cell phone. I’m eating tho. Thank goodness. They say I might have it in the spinal cordz, now they want me to get chemo. These 10 tads ckicked me hard. It’s getting harder. To b taken cared for. I do have two small children that need me. But I’m just a vegetable what good is that. I’m just frustrated. I’m very young still ro said by week3 I should b back to normal. Well see. Good bless u ladies.
0 -
Hopefull2- I just got back from dropping my t Er karat of at college. He was 8 upon my initial diagnosis and not yet 10 when I was diagnosed with brain Mets. I’have avoided WZvR but have had over 6 radiation treatments to my brain snd 1 crainiotomy. Keep fighting if you can.
my youngest was 3 months old at the time of my diagnosis.
0 -
Hopefull 2, it did take me much longer than three weeks to recover. I am glad that you are able to eat, if you are mobile, even if you are tired do some walking if you can. It can be walking on the spot if watching tv, lifting your feet up and down from a chair or just a regular or short walk outside, 5 mins even. Part of recovery is waiting for the brain to be less inflamed from the rads. The eating is good as I said as that is a first step, activity will help for a faster recovery time from the worst of the fatigue. There usually is a point a few weeks out from WBR that you will be the most exhausted but once that happens, recovery is just around the corner. Keep eating, as much protein as you can, even if you add a powdered to a drink or meal. I use Pb and Me peanut butter powder and add it to meals or a smoothie too.
Basically, eating and moving, even if seated will go a long way to make you feel better. As far as what doctors say when telling us how long it should take to recover, it is different for everyone.
0 -
Received a clean scan report yesterday at my annual brain MRI. My neuro onc discussed moving my scans from 12 months to 18 months, but I'm just not comfortable going longer than a year at this point. Next up a discussion with my oncologist to see if we can try a break from Arimidex. After 6 years, the SEs are really starting to effect my quality of life and I having terrible pain in my joints - especially the hip.
0 -
Congrats Goldie 🎉
0 -
Congratulations Goodie, cannot imagine a year between scans let alone a year and a half but that is wonderful for you.
0 -
yay Holdi
0 -
Goodie, that is awesome news - so happy for you!
0 -
I come to the forum when I am feeling down and the love and support shown to each other makes me feel better but this is the first time I've posted, not sure if I'm doing it right.
I have brain mets and had wbr Dec 2020, now I've been diagnosed with leptomeningeal disease. The neuro onc wanted to place an Ommaya port and give me Topotecan for treatment for several months now but I've been terrified of having it done. I've gone to 2 other doctors hoping someone would say I didn't need it and they both strongly suggested that I should have the Ommaya port and Topotecan treatment. So I am having it done in 4 days. Has anyone else had this done? What is recovery like, did recovery require prolonged bedrest? Will that Ommaya port always be visible?
Thank you for any information anyone can give.
0 -
An Ommaya port would be quite similar to a chest port except of where it would be located. It would be inserted under the skin and the drugs would be injected directly into it so it could cross the BBB and get to the brain and spinal fluid as well. In the article I read, the woman did say she got some bad headaches along with chemo injected but it turned out she needed steroids and stopped having that reaction. Her experience is relayed in the following article.
https://thechoskichronicles.com/my-experience-with-an-ommaya-reservoir/
0 -
Mara, thank you so much for sharing this article, it answered many of the questions I had and helped ease a lot of the fear I'm feeling.
0 -
Glad to be of some help.
0 -
hi. I’m supposed to have the Miata port or for leptomeningeal disease. I just got through 10 rounds wbr. I’m still suffering these se. I don’t think I’m strong enough for this new chemo. I’m scared I’m making wrong decisions but I don’t feeel like bee in bed ridden for abother 5 weeks. Uhhhh. Idk. I have two kids to watch. A husband. I want my old life back. That. All.
0 -
I just want to say hello to everyone and to let you know I’m still around. I haven’t been very active here since I had my WBRT last year. Well, it is my 1 year anniversary and I just had my MRI results. Still all good, stable and no new lesions. I am sharing this news to give hope to those who recently had WBRT and not to give up when experiencing fatigue and no appetite after WBRT. It took me 3 months to recover. I agree with Mara that exercise plays an important role in getting strength back. I used to walk 5 km almost daily before my brain mets but after my WBRT, I could hardly walk and needed to use a wheel chair sometimes. But slowly, I started walking 10 meters till I progressed to 1 km. Now I walk 4 km twice a week and have regained my appetite. What I want to share is that you should let your body heal. Give it time and start slowly until you are confident that you can do more. I am very grateful to this community as they helped me a lot by sharing their experiences. That is why I am sharing mine in the hope that I can help somebody too. Maria
0 -
Hopeful and my miracle, thank you both for sharing. I haven’t had WBR or a Cranial port yet but it’s so helpful to read others experiences and tips.
Best luck to you both
0 -
Maria, I am glad you are recovering and very glad to hear you are stable. That is great news.
I am being scanned a little early myself in October as there was some enhancement that the RO wants to be sure is not more mets, still in the original tumour location. I am hoping it is nothing more going on but will find out, not having any issues due to this.
0 -
Hopefull, I am sorry about the exhaustion you are feeling and being bedridden. It is really tough at first, you've got through the WBR which is grueling for a few weeks for sure, I am hoping the Ommaya port is helpful as well. I also empathize with wanting your life back. I miss my old life too, between cancer and the pandemic, life has really changed. Hope it gets better soon.
0 -
Mara and Illimae, you two are my inspiration. Shoofoo as well. There are others here too but I can’t remember all their names. It took me 3 months to recover but it turned out well in the end. Mara, I had a very tiny enhancement in the right pons of the brain in my last MRI and we thought it might have grown but my latest MRI showed no change so I’m hopeful that it isn’t a new lesion. I
0
