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Topic: Brain Mets Sisters

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Nov 5, 2011 12:21PM - edited Jun 9, 2012 05:56AM by K-Lo

K-Lo wrote:

Starting this for a friend.

Edited to explain that the friend was imbell who was feeling overwhelmed by wbr. She helped us all by starting this. Shes in peace now. See you in the clouds, imbell.
Kathy Dx 8/30/2010, IDC, 4cm, Stage IV, 8/12 nodes, ER+/PR+, HER2-
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Nov 24, 2020 09:56AM illimae wrote:

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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2020 11:12AM mara51506 wrote:

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.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Nov 24, 2020 01:54PM theresa45 wrote:

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

Dx 4/20/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Nov 24, 2020 03:05PM mara51506 wrote:

Good to hear your information theresa45 and glad it sounds like it worked out for you.


2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Nov 27, 2020 10:24AM leftfootforward wrote:

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.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Dec 1, 2020 07:38PM SusaninSF wrote:

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

Mets to brain, lung, eye, femur bone. Currently on Sacituzumab Govitecan TROPICS-02 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, 4cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 2, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy)
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Dec 2, 2020 09:21AM Ironic wrote:

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.

Dx 6/2019, IDC, Left, Stage IV, metastasized to brain/lungs, ER-/PR-, HER2+
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Dec 2, 2020 11:43AM illimae wrote:

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.

Heart

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 2, 2020 01:22PM mara51506 wrote:

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.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Dec 3, 2020 12:02AM leftfootforward wrote:

ironic- my heart goes out to you and your family.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Dec 12, 2020 05:09AM - edited Dec 12, 2020 03:13PM by NouzayO

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

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- (FISH) Hormonal Therapy 10/2/2016 Femara (letrozole) Targeted Therapy 10/15/2016 Ibrance (palbociclib) Chemotherapy 4/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/9/2017 Xeloda (capecitabine) Chemotherapy 2/13/2018 Doxil (doxorubicin) Targeted Therapy 5/13/2018 Verzenio Hormonal Therapy 5/15/2018 Faslodex (fulvestrant) Targeted Therapy 1/11/2019 Lynparza
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Dec 12, 2020 08:54AM illimae wrote:

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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 12, 2020 07:35PM leftfootforward wrote:

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.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Dec 14, 2020 02:36PM SusaninSF wrote:

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

Mets to brain, lung, eye, femur bone. Currently on Sacituzumab Govitecan TROPICS-02 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, 4cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 2, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy)
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Dec 19, 2020 06:44AM MyMiracle13 wrote:

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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Dec 19, 2020 12:56PM mara51506 wrote:

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.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Dec 22, 2020 01:08PM j414 wrote:

Hi everyone,

Hope you are all safe and well. A young family member (early thirties) just completed WBR. Her doctor prescribed dexamethasone, which she wasn't taking regularly. A couple of days after treatment ended, she became very disoriented and then catatonic. It seems her brain swelled - a lot. We brought her to the hospital and they gave her dexamethasone intravenously for a day, the swelling went down, she woke up and seemed fine. However, over the last couple of days, we have all noticed that she is acting very childlike - talking and acting like a child. Her parents said it's like she is seven years old again. I would greatly appreciate any thoughts or insights.

Best,
Jen


Dx 4/2009, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Dec 22, 2020 02:12PM illimae wrote:

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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 22, 2020 02:21PM j414 wrote:

Thank you, illimae. She took a brain MRI the other day and it showed the tumors shrunk. Overall, she has responded really well to treatment (Herceptin and Perjeta); lower body and bone scans are clean. I have a call into her oncologist. It's crazy, she was sending me texts of cartoons this morning.

Best,

Jen


Dx 4/2009, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Dec 22, 2020 05:42PM illimae wrote:

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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 27, 2020 10:04PM MyMiracle13 wrote:

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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Dec 28, 2020 07:14AM mara51506 wrote:

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.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Dec 30, 2020 04:13PM j414 wrote:

Thank you all for your thoughts. I am very happy to report my cousin is doing well. The doctor said the changes in her personality (the giggling and childlike playfulness) are from the high doses of dexamethasone that she has received over the last two weeks, which makes sense because the personality changes began after she received the dexamethasone intravenously. He said "acute euphoria" can be a dexamethasone side effect. She is reading (she normally reads a lot) and journaling as usual and her doctor said her personality should normalize as they taper her steroid dosage. She also had her first dose of ENHERTU, which went very well. No side effects (so far), she slept well after and is eating normally. I spoke with her earlier and she sounded good.

Thank you again for your thoughts. Wishing you all a wonderful year ahead!

Dx 4/2009, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Dec 30, 2020 06:30PM mara51506 wrote:

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.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Jan 5, 2021 12:18AM AmyQ wrote:

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

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/19/2013 Femara (letrozole) Radiation Therapy 11/25/2015 External: Bone Hormonal Therapy 1/10/2016 Faslodex (fulvestrant)
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Jan 5, 2021 01:08AM BSandra wrote:

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

Since Sep2019:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 16, 2021 10:50PM Faith123 wrote:

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.


dx'd with Stage IV Dx 5/2019, IDC, Left, <1cm, Grade 3, ER+/PR+, HER2+ (FISH) Surgery
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Jan 17, 2021 12:22AM leftfootforward wrote:

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.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+

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