Brain Mets Sisters
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Rhahimalove, I have heard of gamma knife being used for as many as 15, though this is not common, it’s usually 1-4 mets and I don’t recall gamma knife to a 2cm spot but maybe someone else has. I’m sorry it wasn’t very successful, I wish you and your mom the best of luck.
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As far as I know, large mets are not usually treated by radiation. I had a 10 cm tumour when first dx back in 2016. It was surgically removed before my WBR. I had a spot treatment on two tiny lesions that came back to the same area but they were mm in size. That treatment was in 2018.
I would recommend asking your doctor about possible surgery first, see what they say. They answer would depend on your mother's overall health and body strength at this point. No problem to ask, you could also ask if there are any drugs she could be given to try and shrink the tumour. Good luck to you both, I will be thinking of you.
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I had cybernknife to 6 brain mets. Five were small, but one was about 3cm. The mets were found in March 2020, just when COVID19 was really heating up. They offered me surgery on the one large met and Cyberknife to the rest OR Cyberknife to all. Given the unknown COVID19 situation at the time, we went with Cyberknife to all. Best wishes to your mom!
Theresa
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Good to hear your information theresa45 and glad it sounds like it worked out for you.
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I have had gamna knife done to over 15 Mets all at once. I had to fight to get approval. It took 3 appeals and a discussion with the head Neuro oncologist the insurance company here deals with. At other times I have had gamma knife gone to 5-10 spots at one time. I can’t remember how big the largest one was. I’d say still fight for it if you can.this last go around, I had cyber knife done to 10 spots.
As far as meds, tukysa has worked for stopping my brain Mets from sprouting after my last treatment. First time in years. Xeloda also kept my brain Mets at bay.,
I am sorry you have to battle for your mom. She’s lucky to have you. Many hugs snd I will keep you in my thoughts.0 -
Ironic,
So sorry about your Mom's condition. I'm also sorry that the doctors gave up on her so quickly. It's always possible that a different treatment could turn things around, in my opinion.
I have a friend who has been volunteering at a hospice for decades. He said most people would be surprised at how many people walk out of hospice after having some time there.
I am a big believer in some Chinese medicine doctors. Since there is no certification process that I know of, finding the few good ones is all word of mouth. I believe that my Chinese medicine doctor (Master Hong, qimaster.com) has prolonged my life and cured my Mom of Lymphoma (she didn't do any Western medicine, just Chinese medicine. But she got tested by her Western doctor so she knows it has slowly regressed and is now gone). He also helped my sister-in-law when she had colon cancer and she has been cancer free ever since. I know MANY other people who have been cured by him from a number of different ailments including the daughter-in-law of a former Governor who was within hours of dying of flesh-eating disease. Her husband actually came up to me in a restaurant to tell me about the experience since my Mom had referred Master Hong. Since SIP, I haven't been able to see him in person but he does do remote sessions.
That being said, he cannot cure everyone and will tell you on day 1 if there is nothing he can do. That is a hard thing to hear. He said that to two of my Mom's friends and they both died.
My approach includes Western medicine, Chinese medicine and Yoga. I also believe that Dance keeps me strong and helps my balance. Piano, studying languages (Japanese and French), reading huge tomes (reading the 3rd of six 800 page books by Proust) and doing the NY Times Crosswords help my brain. I feel like all of these activities together have given a good quality of life for almost 7 years metastatic. But who knows? Could be random luck.
Wishing your Mom lots of random luck!
Big hugs, Susan
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Hi everyone,
This is most likely going to be my last post on here. Yesterday morning my mom unfortunately passed away at the hospice hospital. It's was a tough month of having to take care of her as she declined. I didn't cry yesterday when I was told the news and I haven't cried today either. I don't know if that means the news hasn't hit me yet.
My mind has been full of what ifs. We know the doctor said that chemo wasn't working and with the way she was at the time another doctor would not accept her. But maybe if we pushed harder to get her another treatment she would still be here. We tried to give my mom the Chinese Medicine but it seemed like we had to fight with her all the time for her to drink it. So my dad just kind gave up on it. At the end of her life it seemed the cancer got her fast spreading to her spine, liver and when she was sent to the hospital 2 days ago they thought they saw some new mets in her lungs.
I said all my goodbyes to her on Monday and I'm glad I did. I feel bad for my brother as he will not have her in his life like she was in my mine. She wont see him start middle school or go to high school. Thing's she got to do with me atleast. My brother also seems to be taking the news weirdly, I know everybody grieves differently and I know he Is sad but he has only cried once and I think he may be too young to fully understand the situation. He's 11 years old.
Thank you Illimae and SusaninSF for always answering any worries that I had.
I thought you guys should atleast know some things about her. Her name was Marie, she came to America as a teenager, lived in Florida for more than 25 years, her favorite color was pink, she was 45 years old, she had 3 sisters and 2 brothers, her parents, my grandparents are still alive and me and my little brother were her only children.
Thank you all for being with me through our journey.
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Ironic, I’m so sorry to hear about your mom. I didn’t realize she was only 45, I’m 45, geez.... if there’s a positive to this, it would be that she passed relatively quickly when it got bad, one of my biggest fears is to just linger and suffer for a long time. Best wishes to your family as you process this.
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Ironic, I am so sorry about your Mom too. You and your family have been through so much. I am sending healing thoughts your way to you, family and friends of your Mom.
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ironic- my heart goes out to you and your family.
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Hello ladies!
I am new to this thread and will greatly appreciate your guidance and support as a new brain metszer.
I have been battling MBC for four years now and I blew through my treatment options and I'm literally hanging on by a thread! I was diagnosed de novo while pregnant and had extensive liver and bone mets at the time of dx. My mets have been growing and shrinking with treatments but now I feel I am back to square one plus some.
I was on an immunotherapy trial (TAPUR) for the past 7 months but it did nothing for me. The 3 CT scans I had during that time led me to be believe I was stable or minimally progressing in liver but PET and MRI showed an explosion in mets in liver (about 15) and bones (extensive to major bones in my body). I also found out that now I have brain lesions! Seriously what are CTs even good for? If I was on Vit C it would have been probably better 😂 Quality of life was not bad though the past 7 months until suddenly it wasn't and 💩 hit the fan very quick. I experienced severe bone, leg and back pain and now possibly looking into another femur/hip stabilization surgery.
I'm really bummed by it all especially the brain mets part! All of sudden, I feel like I have reached a whole new level in this $#*& whole. I cried a lot for a couple of weeks and unfortunately couldn't shield my little ones from the heartache this time.
I'm ER/PR positive and Her2 equivocal for reference. I knew immunotherapy for me was a long shot but since I tried almost everything I needed to explore out of my comfort zone.
I did do Y90 and ablation before when my liver met load was small but obviously it all comes back with time. I have been on several lines of treatment: Ibrance/ Latrezole, Abraxane, Xeloda, Doxil, Verzenio/ Faslodex, Lynparza, Halaven, Gem/Carbo, Immunotherapy study (Opdivo).
Now I just started Afinitor/ Aromasin... which I have been putting off due to side effects but beggars can't be choosers. I did develop the ESR1 mutation and I might possibly switch to Faslodex again instead of the Aromasin.
My F1 (2019) and Guardant blood test (2020) do not show a lot of helpful info. I have the somatic BRCA mutation, FGFR1 amplification among a few other things that probably are not targetable at this point.
My MO said if my first blood test after Afinitor showed an increase in TM she'll switch immediately to a different treatment. But I'm not sure that's a good idea! I really have very limited options.
I will be going in for gamma knife on Friday but I'm really scared of it all! The procedure, the mask/ cage, the side effects, possible deficits.. I am a mess!
I apologize for the long long post! I know that many of you have been braving this territory for a long time and I would greatly appreciate any insights, words of wisdom and prayers!!!
thank you!!!
Heba
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Heba, gamma knife is scary at first because of the mask or frame but it’s doable, usually very successful and has an easy recovery. Ask for anxiety meds. Once the mask or frame is on, the procedure itself is like an MRI, easy.
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I agree once you are fit with the frame or mask the rest is pretty easy. Anxiety meds are a must if you ask me. Recovery was not bad at all.
What about taxol for taking your liver?I did weekly taxol treatments for about s year snd it crushed my cancer. Side effects weren’t too bad. You be would lose your hair but mine started to grow back during my treatment.
Good luck.
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Heba,
You are not at the end of treatment options. The ADCs have been game-changers for many MBC patients. Like you, I am ER+, HER2 equivocal. I am on a trial for Trodelvy (Sacituzumab Govitecan). Trodelvy has only been approved for TNBC but you can get on the trial or get access to the drug through compassionate use. There is also a trial for HER2 low patients for Enhertu, another ADC. Don't know much about PARP inhibitors but I know there are several in trials. Is it possible that a different one would work? There are also all of the chemos. Don't know much about them since I haven't taken any yet.
Regarding brain mets and brain radiation, like many others, I have found this to be tolerable. I was diagnosed with brain mets from day one of my metastatic diagnosis almost seven years ago. Have had WBR (whole brain radiation) as well as two gamma knife treatments. My first gamma knife was with the heavy metal cage and that was trying but not painful. My second gamma knife was with the mask and was very easy. The treatment itself is very quick but they have to do a brain MRI and then plan out your treatment so the entire appointment takes a couple of hours. Brain radiation seems to be very effective. My RO told me in the beginning that she could keep me alive for years. That has been true.
I understand how terrifying it is. We are here for you. There are a lot of kind and knowledgeable women on this thread.
Hugs, Susan
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I’m so sorry to hear of your mom’s demise. I’ve been praying for both of you. Thanks for sharing her name with us. Now I can pray for the eternal repose of her soul. May your family find comfort in the knowledge that Marie is now in the arms of the Lord and she is beyond pain and suffering.
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Heba, hope the gamma knife went well for you and few side effects. You wanted to hear from longterm survivors. A couple have already answered. I am also a long term survivor, cancer found in 2015, too small to be seen in my brain as I only had a head CT but grew to 10 cm tumour by 2016. Had a craniotomy first and then radiation to my whole brain. Recovered from that, had some up and downs, mostly stable, one spot retreated which grew in 2018. Now I am No Evidence of disease from the brain or body. That is very lucky for me and I will enjoy this as long as I can. Still get Herceptin to prevent further mets in my body and get a few SE from those. I am able to walk a great distance, feel pretty good. Fatigue is one of my worst things but manageable. Weight gain is a problem due to my love of peanut butter. Am shrinking those portions WAY down.
Everybody is different and some will go for a long time and that is the thing to hold onto, do everything you can for yourself, nutritious eating, moving as simple as walking as well. Makes drugs and treatments easier to deal with. If food ever becomes a problem, digestive enzymes cured my problem with peanut intolerance.
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Hope you are all safe and well.
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J414, I have no experience like that but this behavior change would be very alarming to me. I’d recommend the ER and a brain MRI to see if there’s a physical reason for this. It doesn’t sound like a side effect of medication.
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Thank you!
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J414, I’m glad she’s showing improvement but so confused by the behavior. I wish I could offer more but it’s honestly got me stumped. It it possible that it’s an emotional thing, like denial or an inability to process this? I’ve never heard of this issue. I was worried about brain mets changing my personality in ways that might make me treat my husband poorly but acting like a child is just so bizarre. I wish you and her the best luck.
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Hi. I finished my WBR in September. I remember that my radiation oncologist warned me about possible changes in character after WBR. She said some peopleturn aggressive or angry, may lose cognitive function and she told me to warn my family that it may happen. Thankfully nothing of the sort happened but I am glad that she warned me about the possibility of personality changes. Your family member might be experiencing this personality change as a side effect of the WBR. Best to talk with the radiation oncologist immediately so they may suggest a solution. It may have something to do with the brain swelling.
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I did experience irratibility and lack of control when it came to losing my temper. That was a large part of not being able to work any longer as I would have screamed at abusive customers. I will say that aspect did subside, but it took a while until the inflammation was out of the brain. I was also depressed but I am not sure WBR was the cause versus the Stage IV dx.
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Thank you again for your thoughts. Wishing you all a wonderful year ahead!
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Glad to hear your cousin is doing better. Speaking from experience, steroids given by IV do cause you to almost vibrate in your body so the personality changes don't suprise but again, I am glad to hear she is doing better.
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Hello,
Popping in quickly to say hi and to say that after almost 8 years of Stage 4 de novo, I have1 brain met the size of a grain of rice. I will receive 1 dose of radiation on Monday January 11th, 2021. In addition, I had a tissue biopsy that showed a complete flip in cancer properties. Inotherwords, I went from ER/PR positive to negative and from HER2 negative to positive. My question is, does this give me a whole range of new chemotherapies since my receptors have changed as well as HER2?
I'm sure it's not that easy and yes, I will discuss this with my oncologist when I see her next, but wanted to get experience from you all.Happy New Year!
Amy
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Oh Amy... 8 years is amazing. And HER2+ should open absolutely new possibilities for you, huge amount of very effective drugs. I am confident for another 8 years for you... Saulius
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Hi All,
Hope everyone is doing well.
I had a PET scan done last month and the results show “something “ in the back of my neck,so I’m going to have a scope done through my nose so they can biopsy the area.Im not even sure which area it is that we are going to biopsy.I was just numb when I received the news and couldn’t even utter a word.
Anyway,I wanted to find out ,how effective PET scans are in showing if there’s anything in the brain?
I’m worried about some symptoms I’ve been getting since November,numbness in different parts of the body,vibrating sensation near my groin,tinnitus,losing my voice but now it’s back,Feeling like there is something clamping my ankles,knees,calves (come and go) Just to add I was diagnosed with Mets to my T11/12 and went on ACT(2019). Had a few months on Herceptin and that stopped due to finances,but I am trying to see if I can go back.Currently taking tamoxifen.
Recent PET: met on vertebrae has resolved. Now it’s this new “stuff” at the back of my neck.
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PET scans aren’t great for tge brsin because the brain utilizes glucose. Even with the glucose diet they put you on before imaging isn’t enough to ensue that the imaging of the brain is accurate. MRI’s are much better for imagin your brain.
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brain mri back. 2 new tony lesions on the top of my brain, 22 lesions either stable, getting smaller, or gone.
I should be happy with these results but I’m not. I will have cyber knife done at the end of feb to see how fast lesions are growing or if any new ones appear we can treat those as well/ I am not happy to do this again but it has been 10 months. In that 10 months I’ve seen my kids grow. So in the end it’s worth i
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leftfoot, I hear you about the results. I’ve had 6 months between 1st and 2nd brain mets progression and a year each the last two times but new spots are always disappointing.
In September, at my MO’s recommendation, I volunteered to switch from H&P to the new Herceptin, Xeloda, Tukysa combo with good results so far. This has been good at longer progression free time and less need for radiation. I don’t know if your on it but it’s an option.
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