Brain Mets Sisters
Comments
-
illmE- I am currently on kadcyla and tukysa. I am thankful for 10 months just disappointed.
Thanks for your response.
0 -
FYI the HER2CLIMB study showed that it was better to stay on Tukysa rather than switch at the first brain progression.
0 -
thanks mycellsmurated. I am not planning on stopping the Tuksya anytime soon. I do believe it has slowed my progression.
0 -
LFF,
Oh crap! New lesions always scary even though your other 22 (!) lesions are stable/shrinking. I assume they are tiny and can be easily zapped to oblivion.
You are right that 10 months more with kiddos is huge. They change so much so quickly.
Are you changing treatments? What do you have in mind for a next treatment? Have you talked to your MO about NKTR-102? I know the Phase III trial (NKTR-102 Trial) was closed last August but don't know the current status. Perhaps it will be fast tracked or you can get compassionate use? Overall efficacy wasn't great but it is supposed to work well on brain mets.
Call me if you want to talk.
Hugs, Susan
0 -
Dear LFF, I was thinking about this clinical trial for you at City of Hope, California: https://www.clinicaltrials.gov/ct2/show/NCT03696030. I am pretty sure you know it, just it sounds very promising to me... Saulius
0 -
thank you Saulius. I will look into it
0 -
I am sorry LFF for the progression. Hope they can zap the new ones and glad others are shrinking. Mixed bag overall.
0 -
brain MRI snd CT mapping on Feb 25th. Cyber knife treatment in March 5th snd 6th if all goes as planned. Here is to hoping this is the last time I have to do this for awhile.
0 -
LFF, I am hoping the same for you. Will be thinking of you.
0 -
Hello! It looks like I have joined the brain Mets club! I was diagnosed with stage 4 BC to the liver in 2018. Was NED by 2019. Then just On 02/11 I came to the ER for dizziness and nausea and they discovered 10 lesion. Four are what they called a descent size. There is one lesion they are concerned about and I’ll be getting a stent because it is partly blocking the brain barrier. I’m Her2 + and ER - . The remainder 6 were visible on the NRI but he wasn’t every concerned about them compared to the o my blocking the brain barrier. My oncologist came by today and stated after the stent he would like to start radiology and then Chemotherapy (although he was not specific on what kind)
I have 3 questions: 1) what are my options at this point with 10 lesions. 2) Is this the end? I realize it is stage 4 but because of the amount of lesions, what my projected life expentacy for my situation? 3) what chemotherapy would you suggest with the amount of lesions?
I’m sorry my Info is vague. Staying in ICU the last 2 nights, I have only don’t have a lot to go off of at this point.
Thank you. I appreciate all advice. Blessings.
-Tricia0 -
Tricia,
I am sorry you joined us. I hope I can alleviate some fears. I have been living with brain Mets for 8 years and I am still here. I have had 5 gamma knife treatments ( use a halo) and will be getting my second cyber knife ( use a mask)treatment the first week of March.In the beginning I had to get multiple spots treated with radiation. Now however they have routinely treated 10. IMO last brain mri showed that 20 previously treated spots were either stable, Shrinking, or gone. I have had lots ( over 30) spots treated in my 8 years with good results.
In terms of treatment options I also have liver Mets so am on a combination of kadcyla and tucatinib. Kadcyla is my systemic treatment and tucatinib ( tukysa) is for treating cancer in the brain. The later is a newer treatment. Another drug used to treat brain Mets is Nerlynx ( neratinib).
You can still have a good prognosis with numerous brain Mets. Sometimes they will treat it with radiation to shrink it and then surgically remove the rest.
I have not had full brain radiation.Feel free to ask me and everyone else questions.
0 -
I had a 10 cm tumour almost 5 years ago. Had brain surgery to remove it and whole brain radiation in 2016. In 2018, my lesions grew and I got more radiation to the original tumour bed. I am on Herceptinand stable in body and brain. I take Herceptin for the neck down, nothing for my brain. Treatments are better than they were so don't assume the end. Just take it one day at a time. Meditative music overnight in your ears will aid sleep as well.
I am on year 6 of cancer, I only lost parts of my hair, the rest is strong, walks a lot and has good QOL. If you are mobile, start walking if you don't already. Indoors on the spot or outdoors, it will be good for your body to withstand treatment. Good for your mind as well. Good luck keep us posted on your progress as well.
0 -
thanks for the information left foot!! I’ll be praying for you.
Quick question, for Gamma Knife are there restrictions for the treatment, for example to amount or size of the tumor. I might be confusing that with something else. I love my doctor but I have Kaiser and they do t seem to have that much experience with Brain Cancer. I feel like the They think this is a death sentence and the radiation and chemotherapy will only buy me a couple of months at the most, I’m considering getting a second opinion at City of Hope once I’m done with the radiation. Thank you!
0 -
The standard protocol for gamma knife is 1-4 lesions and less than 3cm but it is somewhat negotiable and I’ve heard of others treated for 15 or so lesions but I think that is rare. The smaller and fewer mets you have, the easier that are to treat generally. I’ve been lucky in that respect and after 3 years, 5 gamma knife treatments and 1 craniotomy, I’m living a mostly normal life. My best advice is to fight for the least invasive option and don’t let anyone write you off. Good luck.
0 -
Although I did well with the whole brain radiation, gamma knife that targets just lesions is preferable if you can get it. WBR can be done later if needed but less downtime with gamma knife since less of the brain is inflamed. Good luck with everything.
0 -
Tricia, prognosis is also very different if you have actual brain cancer vs breast cancer that spread to the brain.
0 -
I don’t know why I read this thread this morning; please excuse my butting in! I just want to say to Tricia, if your doctors are so pessimistic and possibly inexperienced, why wait for that second opinion? Get it asap. They may recommend something different from what you currently have planned.
0 -
Tricia, I missed the part about your doctor's pessimism in your post. You definitely don't need that. Again, I have the most aggressive form of breast cancer that also spread to my brain. I had whole brain radiation because of this to avoid rapid growth of many lesions. If I get them, they can still be spot treated but I have done well for many years. I agree with SP about getting a second opinion. There are lots of us who have been around for years.
0 -
hello everyone,
It's been a while since I've been on here. Looking for some feedback regarding Enhertu. In 2013 my mother was diagnosed with stage 4 inflammatory breast cancer HER2+. Brain Mets since 2016, with 4 tumors and possible LM, treated with WBR and Xeloda and Tykerb (which was brutal caused kidney failure) and gamma knife. Anyway, it was successful. My mom remained “stable" for 4 years. my mothers balance as been an issue since feb. 2020, possibly due to all the treatment over the years. In July 2020 my moms had three new tumors in which she received gamma knife. The dr also started her on tuykusa and xeloda along with herceptin. Unfortunately, on New Year's Day my mom fainted and collapsed, we found out that she has another tumor that grew so quickly and big in such a short amount of time,that she needed a craniotomy. So this was her 8th tumor in the past four years. The tuykusa and xeloda combination did not work for my mom.She is starting Enhertu this week. As anyone else started enhertu? Side effects? Please give some feedback. Thanks!
0 -
thank you Mara. We meet with the oncology radiologist tomorrow. And then I’m suppose to start radiation next Tuesday. Not sure what that all entails, but maybe we will have more information tomorrow. I’ll keep you posted.
Tricia
0 -
Hello, just joined the forum and I've learned so much from all you brave ladies! To those contemplating SRS, I would say it is fairly short (they can treat 5-6 in one session) and other than the tight mask, tolerable. I've had several SRS done and the WBR as well. I believe I have like 20 spots treated over the past year. The only downside is the time away from other chemo treatments which have to be temporarily stopped, which for me, allowed progression just in that 6 week period!
Reason I finally joined here is for additional hope because radiation is typically effective but I have 2 tumors in the brain that are growing even after those got SRS and WBR and Rad Onc says can't radiate the same spot 3 times. Is that what everyone has understood from your conversations with your doctors?
The largest one is now 2 cm. We've been following these for several months (from 1cm, to 1.5 cm, to 1.7 cm, etc) and its been a year since the SRS and 6 months since the WBR.
What other treatments can be offered? Doc mentioned Avastin, I've also researched cesium seeds. Not sure if a craniotomy in order, but they always follow a radiation series post surgery and if onc says no more radiation, this doesn't seem feasible. I'm MTNBC receiving Tecentriq and Abraxane for lower body mets. Although Tecentriq can cause inflammation that could be "pseudo progression", the MRI doctor clearly stated that its growing a blood vessel and each MRI getting larger.
Please share anything with me, meeting with radiation oncologist this week and she is ready to refer me to a neuro-oncologist for next steps.. Blessings to all!
0 -
I just have the general side effects of the Enhertu pulled up in the following link, I am sorry for what you both are going through.
Not sure if anyone has had this treatment here but doing a search of Enhertu might be productive here as well in case anyone else has had it.
0 -
Elligtr, I have heard of Avastin being used to shrink tumours in the brain. This may be an option if they are trying to control the size of the ones that cannot be radiated further. May be an option. Craniotomy may be another option give. I am not familiar with TNBC drug treatments that cross the brain. A website I quite like is BrainmetsBC.org. They cover multiple types of brain mets from BC and the latest treatments and such.
0 -
Cissy8 - I've been on Enhertu for the last 9 months. I'm ER+ HER2 low and have been on the DESTINY04 trial. My brain mets were treated with Cyberknife just before I started the trial and they have been stable to shrinking while on Enhertu. My main side effect from Enhertu has been nausea. Emends and Aloxi premeds with the infusion helps a lot. For lots of information on Enhertu, join the following Facebook group: https://www.facebook.com/groups/478640293032630
Elligtr - I have heard that a given brain meet cannot be radiated more than 3 times. A woman in my metastatic support group is having a craniotomy at the end of the month for a tumor that has already been radiated 3 times. She's on Xeloda, Tucatinib, and Herceptin. I believe that her oncologist will keep her on that treatment after the craniotomy.
0 -
Thank you Mara, for that website. I was researching last night too Laser Interstitial Thermal Therapy, which is heating the tumor to shrink it/kill it by a minimally invasive procedure, it still takes hours though with the set up and recovery is very short as opposed to craniotomy which takes 5-6 weeks to recover. Not sure if they do that where I live or only in places like MD Anderson TX.
0 -
Thank you Mara, for that website. I was researching last night too Laser Interstitial Thermal Therapy, which is heating the tumor to shrink it/kill it by a minimally invasive procedure, it still takes hours though with the set up and recovery is very short as opposed to craniotomy which takes 5-6 weeks to recover. Not sure if they do that where I live or only in places like MD Anderson TX.
0 -
I will say, craniotomy recovery can be slow or quick depending on the person and location of the mets. I started out with a 10 cm met behind my right ear. That part of the brain was not critical for cognitive function. I recovered very quickly, back out walking the day after I got out of the hospital until I fractured my feet due to the steroids. Had to take it easy after but I did not have trouble.
I would tend to go with the day by day approach, if you feel OK after a particular treatment, go for some physical activity. We all react different so go into it with hoping for the best, assuming you have a craniotomy. If you can, I recommend a mini elliptical that you can pedal on the couch or chair to keep legs moving and walking if balance is not affected, even in the house is fine.
0 -
- Thank you gals! I will join the Enhertu Facebook group. My mom had her first treatment with the Enhertu. She is feeling nauseous and fatigued. Her recovery from the craniotomy was rough but each day bit by bit the pain lessened. She had the surgery on the cerebellum. She has a brain scan coming up next week.
0 -
Thank you for posting this. I had craniotomy 12/31/2020, have new protocol with Xeloda and Tucatnib. 1st of 3 radiation sessions start tomorrow - Dr is very positive they will get all the remainder. WHat did the Dr replace the Taxol with? I am still on Herceptin every 3 weeks, don't like the Xeloda and Tucatnib. No feet issues but the skin on my torso is so dry it sheds like sno when I take my clothes off. I'm constantly using lotion and oil. Very yucky. Hoping I don't lose much hair with radiation.
0 -
My case is similar to yours. HER 2 + , mets to the brain. Starting radiation tomorrow. HAving 3 sessions. Did you lose any hair with radiation?
0
