Brain Mets Sisters
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Dorimak, I am sorry to hear that you had to spend time in the hospital and about your vision. I hope your surgery preserves your vision as well.
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dirimak- thinking of you. Best wishes.
I wore headbands to cover the scar. You can be quite fashionable with those.0 -
Hi all! We thought you'd be interested in this new Research News story we just published:
Adding Tukysa to Standard Treatment Reduces Brain Lesion Growth Risk in HER2-Positive Metastatic Breast Cancer
June 4, 2020
For people with HER2-positive breast cancer that has spread to the brain, adding Tukysa to standard treatment improved survival and reduced the risk that the brain lesions would grow. Read more...0 -
Thanks mods 🙂
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nice article mods. Thank you. I started on this drug two weeks ago. Hoping it helps stop the growth of my brain Mets.
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can this drug be taken alone? It is unclear in the article.
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Hello, Everyone -
Long story short my brain MRI/Contrast on 6/5/20 was not good. My 6 month check came back with a swarm of 10 micro brain lesions/mets. My clinic has fast tracked me for whole brain radiation starting next week and I'm already on Dexamethasone for the brain swelling. It also turns out that a drug I had just been put on - first cycle over - Xeloda/Capecitabine is a good drug on it's own for brain mets but in combo with a new drug - approved by the FDA in April I believe - called Tukysa/Tucatinib along with Herceptin/Trastuzumab. Phase III trials were amazing. Along with the whole brain radiation my oncologist is already consulting with the clinic Jedi council to see if I'm a good candidate.
The mods here couldn't have posted the article at a better time.
My question for you all is the whole brain radiation thing. Some of those side effects are petty scary, even just doing Google searches with a two year limit. Amazing results, but scary. I was wondering if I could get the down-low from people who have actually had it done and what their reactions were. My radiation oncologist has said that my reactions to previous radiation treatments were non existent - bone and liver - and it's a good sign that I should have a minimal reactions to this... but no promises.
Any help would be greatly appreciated.
Thank you!
- Kathleen
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First things first, DON'T follow google when it comes to this treatment. It is extremely scary to read about and not everything that may be mentioned will happen. I had WBR 4 years ago. I was terrified. Had to surgically remove a 10 cm brain met first. That was easy. Then came the radiation. Reaction to radiation on the brain is different person to person. Universally, fatigue is a major issue. Loss of appetite can happen as well. Being on steroids for a long time can be draining as well.
Speaking on my experience, WBR made me tired and I was already deeply depressed. That was my major issue to deal with. I took a good couple of months to get used to being without steroids and wanting to eat again. I do not have any neurological symptoms from the WBR that I can tell. I had some chemo brain before having radiation. It has largely resolved. I also found that once I felt like walking again, the appetite and energy level improved. Little bit of short term memory issues, like where did I put something came up but they have improved a lot. Just keep things in the same place ALL the time, make reminders on your phone or write things down. It will not be the end and a couple of us are years down the road from WBR and still fit and fairly healthy I must say.
The only permanent loss was the hair on top of my head never grew back. Now I can wear wigs which are much nicer than my own hair was after chemo. We can always adapt. I will also suggest to take digestive enzymes since I found that after being on steroids for so long, I developed a lot of food intolerances. Those enzymes allow me to eat anything now without an issue. Makes life easier.
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LFF and Mara,
You guys are amazing! Thanks for sharing your photos.
Hugs, Susan
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Mara51506 -
Thank you so much for the reassurance. I'm sure you already know how information from fellow travelers down this road can relive anxiety and panic attacks.
What you've described seems to be the best case scenario and I've got my fingers crossed. The fatigue, hair loss, depression - I have a Chihuahua who is an expert at pulling me out of that pit - are all things I'm already familiar with as far as treatments go. It was the blindness, seizures, etc. ect. ad nausem that gives you a serious pause.
Another quick question if you don't mind, but were you warned about driving a car during your WBR treatment? I did have to sign paperwork that I had been told it could be an issue. I can get rides but I'm a stubborn, grouch old lady who rather likes having my own independence. I know it's compensation for all that's going on with the cancer, but it is something I can control.
WBR isn't easy by a long shot, but the prognosis for the time being is good and you've certainly given me the hope I need to take that next step.
Thank you!
- Kathleen
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I'm sorry, I'm not sure if this was talked about before but the posts are too many for me to read.
Has anyone had continued treatment after being diagnosed? My oncologist strongly suggested that I may be in treatment for the remainder of my life and I am wondering if anyone else has experienced that. As I have already gone through many treatments and surgeries, it is a daunting thing to think about (I am also 28 and not sure how long I will live, cant comprehend this). I am sure it is doable but also I am kind of scared of hospitals, pandemic, medical procedures now. Is there a point where drs decide I dont need treatment and I can stop? I guess it's my decision but I dont want to make that decision just because I'm scared of hospitals right now.
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seilien, I’m HER2+, so I have IV herceptin and perjeta every 3 weeks with scans every 3 monthsand plan to continue as long as it works. So far it’s been 3.5 years, you get used to the routine.
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seilien, I've been in treatment for 5 years since my met diagnosis. Surgeries, radiation, and currently on Arimidex. You do get tired of the appointments and the medicines and the procedures but at some point you stop grieving for what your life was and accept the new "normal" of what you life is now. As to when you want to stop treatment, that's a personal decision and each of us approach it differently. Talk through your feelings and thoughts with a trusted friend and your MO. Decided where that stopping point is for you and make sure your loved ones know it. Much love to you.
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I’ve been in treatment since my recurrence in December of 2012. It is clear that I will always be in some sort of treatment. Some days it’s hard I won’t lie. I’m feeling pretty tired of it right now. But I’ve seen my kids grow up and my baby is now 10 and oldest is almost 18. Itt has been totally worth it for me. At some point I will be done with treatment I am sure. I’m just not there yet.
You are in control of what treatment you want and when you have had enough. I just wanted you to know that you can go on living a good life while undergoing treatment for a long time.
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hi Ladies ,
I apologize posting here, but since you amazing ladies warriors of this ugly disease have helped me in the past , I am asking for help again , have any of you experienced high calcium levels in the blood ? My mom is being hospitalized because of high calcium in the blood and the oncologist's nurse didn't give me much hope, as far as her coming back from this, I am really worried please share any experiences or knowledge you might have Thank you
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holy hope- no experience with high calcium but you and my mom are in my thoughts.
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LFF- thank you again , I know you ladies have told me in the past do not google, and I can across an article sayign prognosis was poor once they have hypercalcimia, so now of course I'm on edge what makes it worse is that I can't be with her because of COVID they don't allow visito
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Seilien -
I've been in treatment since 2015, Stage IV from the get go. Been on chemo, oral chemo, targeted and several rounds of radiation for bone, liver and starting tomorrow whole brain radiation for brain mets. I was told right at the beginning that treatment would be ongoing for the rest of my life My longest NED period was the first 3 years, but I take each victory as it comes. So much is being learned, so much changes from year to year. You can't help but be scared, goodness knows I am. And long before Covid came around I was afraid of my lowered immune system responses - no spleen, which makes things so much more... challenging.
I learned early on that I can't worry about all those things, but can only do the best I can each day, one day at a time. This past weekend with the diagnosis of brain mets really floored me and I went through the same questions you are. In the end, I decided it's just another journey, another battle I suppose. I had to remind myself of my mantra when I began all this -
Not today.
Not tomorrow.
Not the day after or the day after that.
What am I going to do today?
A LOT of things today, including the final set ups for the WBR tommorrow - 10 days, with only weekends off. I don't know exactly what is going to happen, but today I cuddle Brewster, my chihuahua - whose been the guardian of my mental health - talk with friends, yell at my brother - high point of the day! - and relax.
I'm scared. but I'm a grouchy old lady. And stubborn. That works for me.
I hope this helps.
- Kathleen
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Kathleen, that attitude will serve you well, being stubborn is a wonderful thing as it can help make you more determined than ever. I too have had brain radiation, WBR back in 2016 along with brain surgery and more local radiation in 2018. I have been lucky to have had no real lasting effects from the WBR, the first little while after, I felt fatigued and depressed. Mostly because I was so scared at the time and all the steroids I had been given to remove the brain swelling I had.
My attitude is similar to yours. I worry about what is happening now, don't spend time worrying about the future other than to be good with money. My health is good, I am physically strong and back to reading and multitasking. Still get my Herceptin every 3 weeks and only scan my body every 6 months. MRI were moved to every 4 months once they were both coming out stable.
I very much hope the same result for you. Your attitude going in is much more balanced than mine was and will go a long way for your WBR treatment and recovery. Though I am sorry you had to join us, I am happy you are here.
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Hi Seilien, our editorial staff did a bit of digging and as far as they can see, tucatinib is always given with something else, however, it is worth talking with your doctor in case they are using it differently, off-label.
The Mods
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Thank you mods and everyone who has responded to my questions.
I have another question. I am continually amazed at what people do to survive and persevere but how do you do it?
When I got gamma knife, it was such a traumatizing experience and am absolutely convinced that I wouldn't be able to do it again any time soon. I think it is likely I will have to do it again in the future. How do I get over the fear? Maybe I'm finding it more difficult during pandemic because I am always alone at the hospitals but I am so scared of going to hospitals for anything. Honestly, I really wish the world would get back to normal so I dont have to worry about that too.
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seilien, I was so freaked out about my first gamma knife too but realized that the worst was over quickly for me. I hoped I’d never have to do it again but 6 months later I had 5 more spots and 2 more a year after that. What makes it tolerable was the normal life I was able to enjoy in between.
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Good Morning, Everyone -
This is just me but my mind tends to zoom when new information is offered and roadblocks introduced. I keep having to tell myself to slow down and think, which is pretty big task. My appointment yesterday with my onc was a bit disappointing in that, by not listening the first time around I got my numbers and information a bit skewed. Turns out I'm only a possible candidate for the new Xeloda/Capecitabine and Tukysa/Tucatinib along with Herceptin/Trastuzumab regimen for brain mets. I'm HER2-Negative, not Positive so pending genetic testing for mutation - which is a bit of a catch-22 - we're going with an Araxane/Xeloda/Capecitabinen when the WBR is finished.
New mantra: Breathe and Listen.
Anybody familiar with this regimen along with WBR? I tolerate Abraxane very well and along with the Xeloda/Capecitabine I was wondering at post WBR reactions and results. I've had my first two rounds of WBR and aside from stuffy head/headache and a sore throat seem to be doing quite well. But I still have 2 weeks to go.
Any advice or help would be appreciated.
- Kathleen
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Hi,
It has been a long time since I shared anything. I was diagnosed in Feb 2018 with IDC, microcalcifications, March 2018 lymph nodes, rib, and then in July 2018, brain. I did 6 rounds of TCHP, radiation for brain and rib, Xeloda, and got my first clean scans in November 2018. I am still NEAD. My middle daughter has Mental Health issues and almost committed suicide also in November 18 and was in ICU 3 days and the hospital about 3 weeks total. During which time, my daughter Jen and I took care of Elijah, her son. I then had to take him for a while because she still was not stable and would not allow us in her home. There were concerns of neglect. She got him back after 4 months and getting stable. He is almost 3 now. Things there are going more smoothly. I have been continuing my treatment and trying to manage my pain and fatigue and live! (I have had fibromyalgia, arthritis and herniated disc for 20 years.
I still get treatment, Herceptin, every 3 weeks. It is so weird that in November, if all goes well, i will be 2 years NEAD. I think about all my sisters here and pray for you regularly. I get new scans 6/24/20. The scanxiety is real. still. But I am so grateful.I am attending an online conference and ran across the new study about Tucatinib for HER2+ and was excited that it showed promise for people with HER2+ and Brain Mets. I just wanted to be sure everyone has heard about it.
Love and Prayers,
Angi
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Hello everyone ,
Angit- my mom is on Tucatinib , similar to you she had brain mets in 2018 , august craniotomy and srs and gamma knife September and October of that year . Yes her oncologist is very excited about Tucatinib , this is the reason why I’m actually here today , we had her follow up brain mri end of May , everything was good , recently she was hospitalized for high calcium, during her hospitalization they did another brain mri( this is a different hospital than where we do the follow ups) and they said where that where they did the gamma there is an 11mm lesion now and a lesion where they did the craniotomy there is a lesion there too, so now im confused i don’t know what to do , I’m hoping there’s no lesion and this Tucatinib will take care of it. Has anyone experienced two different mri results
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holy hope- get confirmation from the center you usually get scanned. Also sometimes radiation necrosis will be the cause of growth in an area that has been treated by SRS. I don’t know about the crainiotomy sites scar tissue can grow there as well.
id go back and talk to the team who treated your mom to see wha t they think and go from there.I will be thinking of yo
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holyhope, I had a similar situation happen 2 years ago. During a routine scan an area lit up at the site of my craniotomy and Gammaknife radiation. My neuro onc felt it was new growth and ordered Gammaknife for the following week. During the mapping MRI to do the Gammaknife treatment, the area of concern was completely gone. Further comparison led my neuro onc to the conclusion that the spot seen on my routine scan was in fact the contrast dye not clearing the area around the tumor bed quickly enough and thus was picked up as a new spot. I was scanned with a different machine that day too and he also said it's not uncommon for different machines to pick up contrast differently. A repeat scan 3 months later showed I was still clear, NED.
As LFF recommended, get back to your "home team" with a copy a of the new scan report and go from there.
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Thank you so much for writing back, I was thinking the same thing too, but hearing your opinions from personal experiences helps me a lot , I called our home team spoke to the nurse i have to go to medical records and deliver images and report to the home team, in the meanwhile she is supposed to get discharged today but keeps having low potassium and now her calcium is a little low I don’t know why her potassium keeps being low?
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Hi Ladies,
Had 3 fractions of SRS on June 1,2, and 3. This was my second round of SRS as the same single met was treated back in November of 2018. Had 2 questions for all of my bm sisters. I have 3 spots on the back of my head where I have lost hair in the last week due to the radiation treatments. They are 3 bright white round spots, ugh, Trying to cover it with some eye makeup as I have a short dark haircut and it really stands out. Any suggestions? Will the hair fill in with time?
Also excited about a recent study article https://medicalxpress.com/news/2020-06-common-cholesterol-drugs-breast-cancer.html. Has anyone talked to their One about common cholesterol drug to slow brain mets? Wouldn't it be awesome if something so simple worked to control tumor growth? Maybe its too good to be true, but I'm bringing this article to my apt Aug 5th.
This brain met in my right cerebellum is my only met. Only drug I am taking is tamoxifen for hormone therapy. Gave the nerlynx a try back in 2019 for 1 month and couldn't tolerate it, severe diarrhea. Might be time to push my Onc and see if I am a candidate for tucatinib or maybe try this cholesterol drug therapy.
I am no longer a candidate for SRS on this same brain met as they won't treat a third time due to risks of radiation necrosis. Craniotomy would be on the table next. Want to do more to prevent a recurrence not just wait around for MRIs to show this coming back.
Any advise for radiation scalp and asking Onc to consider new treatment options are much appreciated, thank you!
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The article was a little vague in terms of whether this would help people with already brain mets or for preventative measure from primary site. I appreciate the idea of finding already safe drugs and altering it to potentially help though! Saves a lot of time and effort.
I think I created a bald patch on the back of my head because I was pulling the hairs when it got itchy from my hair growing. In my case, the hair is growing back but I have some long hair bits that cover it so I basically got a comb over happening lol
I completely understand wanting to do something more! My dr suggested no treatment right now but I do take tamoxifen (he wasnt sure how much it was helping though)
I also had a craniotomy on my right cerebellum couple months ago. Personally, I am enjoying the time that I feel good and dont have to do treatment. I'm plenty worried about my scans in a couple months and I have approached my condition aggressively since the beginning so it depends on your feelings whether you do more. My dr suggested tucatinib but also suggested to do nothing. I went with nothing.
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