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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

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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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Aug 23, 2020 05:04PM illimae wrote:

Seilien, I’ve heard that WBR and Xeloda can both be pretty tough, hopefully those who’ve had WBR can offer some info on the recovery time and balance issues. Has you neuro onc given you any expectations?

The not eating was scary for me too, I actually went to the ER twice for dehydration and continuous vomiting, the vomiting only resolved when I was able to eat real food, everything got better once I was able to drop the protonix med and quit drinking the boost shakes (the bubbles really messed with my stomach).

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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Aug 24, 2020 01:06PM mara51506 wrote:

That's awesome to hear LFF. Wow, your son is so tall. That is just great. Inspiring to me. I am on 5 years. Hoping for longer myself. Want to get to those once a year scans and Herceptin. I am at six months now.

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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Aug 24, 2020 01:19PM mara51506 wrote:

Seilen, I did not have any balance issues post WBR. My most prevalent issues were lack of appetite, extreme fatigue and a lot of depression going on since I was so scared I was going to die. For me it probably took a couple of months to start exercising again and getting some activity helped the fatigue and appetitie issues. Once I was eating more normally, I was able to function. So I had WBR in sept 2016 and by dec 2016 I was out walking an hour a day no matter the weather. Winter, spring and summer. That's what spurred the WBR recovery.

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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Aug 26, 2020 12:27PM Caillou wrote:

Hi everyone,

I just wanted to introduce myself. I'm new to BC.org but not new to BC or brain mets. I'm glad to see there's an active community here. I'm in my 30's and so grateful to be able to say I've been NEAD for a year. Besides cancer, I'm generally in good health, not on any treatments right now, and I have a scan every 3 months. My brain hasn't been systemically treated, and there are surely some cancer cells floating around in there, just waiting to pounce, so there's a psychological burden.

I'm afraid to ask, but is anyone here also triple negative?
Dx TNBC at 32, brain mets at 34. Crainiotomies 12/2018 & 02/2019, partial brain radiation 03/2019, SRS gamma knife 07/2019 Dx 7/2017, IDC, Stage IIA, ER-/PR-, HER2- Dx 12/2018, Stage IV, metastasized to brain, ER-/PR-, HER2- Radiation Therapy Whole-breast: Breast Chemotherapy Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) Chemotherapy Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery Lumpectomy
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Aug 27, 2020 01:20PM mara51506 wrote:

Caillou welcome to the thread, glad to hear the words NEAD and in good health without treatments. I am sure any TNBC people with brain mets will respond soon. So happy to have another fellow Canadian as well.

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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Aug 29, 2020 05:06PM MyMiracle13 wrote:

Hello everyone. Just posting an update on my WBRT sessions. I have finished 5 sessions and still have 5 to go. It has not been plain sailing. After 5 sessions, I feel more tired, no appetite and less energy. I can’t walk as far as I used to. I hope I get through the next 5 sessions with less difficulty. My radiation oncologist did say that the side effects should get better a couple of weeks after the sessions. Hope she is right! Any one willing to share their experiences post WBRT are most welcome. I need encouragement.

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Aug 29, 2020 05:43PM mara51506 wrote:

MyMiracle, what you are experiencing is normal. I will say that fatigue is one of the biggest issues post WBRT. Treatment and steroids take so much out of us. I would not be a good person as far as how long it took me to get over fatigue and SE as I was severely depressed and scared to death. I did maintain walking, got stress fractures in my feet walking. My appetite returned few weeks after radiation was complete. I mainly survived on boost or ensure type shakes with protein added. I really did not like food for about 6 weeks. I did not lose too much weight. Once my appetite kicked back in, I recovered very quickly.

Your recovery will depend a lot on your mood as well. I was almost suicidal and wanting to just die at the time. Took me a long time to put those thoughts aside. I also got a social worker. A lot of people who have had WBRT have had fatigue and appetite issues but recovered quicker than me.

I will say once I felt like walking, I was out an hour a day and that sped up the recovery. Walked in all weather as well. The biggest thing you can do is move your body. Keep up your strength. March in the chair you sit in, or walk if you feel safe. This will help the appetite quicker. If eating is a problem, do get the ensure or boost shakes with lots of vitamins in it and add protein wherever you can. If there is anything you like, eat a lot of it. When you do start eating again, I found that black beans, shredded cheese and a bit of spinach nuked for 90 seconds in the microwave. I would add some wheat bran mixed with taco seasoning. Topped with queso, it is delicious and nutricious. Helps avoid low RBC so if that is possible once you can eat, I do recommend this. A digestive enzyme is also recommended after being treated to help you with eating and avoiding a lot of side effects. It does not need to be expensive to work either. Steroids and the forced menopause of treatment can wreak havoc on digestion. After adding the beans and the others mentioned above, I feel much better. If you can eat that kind of stuff, it is really good.

I have been going at Stage IV according to my MO from the start, came out of a 10 cm tumour, most aggressive form of BC, IBC and HER2+ I have been going for 5 years. I am strong, physically active and a lot of the cognitive issues I had, not being able to read and retain books anymore and all of that has lifted. I have had some short term memory stuff but even that has improved. If this helps to hear at all, I am glad to say it. Give yourself time to process everything. It takes a long time and treat each day as a new start as far as recovery. Good luck.

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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Aug 29, 2020 07:16PM Seilien wrote:

Miracle and Mara, I've had similar SE after my wbrt. But I also chemo now so I get some SE from that. The worst part for me is lack of appetite and leg weakness. The radiation oncologist also told me that it would take time to recover (its been like a month and I don't feel so much better guess no one knows the actual answer) my cognitive ability seems affected. I don't remember a lot of information.

Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 5/31/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Aug 30, 2020 05:47PM Caillou wrote:

Mara, thank you for the welcome. Your presence and advice here are helpful, and 5 years is so inspiring.

Miracle, I haven't had WBRT, but I found even partial brain radiation to be really exhausting. My energy started to recover as soon as treatment ended. Good luck.

Dx TNBC at 32, brain mets at 34. Crainiotomies 12/2018 & 02/2019, partial brain radiation 03/2019, SRS gamma knife 07/2019 Dx 7/2017, IDC, Stage IIA, ER-/PR-, HER2- Dx 12/2018, Stage IV, metastasized to brain, ER-/PR-, HER2- Radiation Therapy Whole-breast: Breast Chemotherapy Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) Chemotherapy Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery Lumpectomy
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Aug 31, 2020 09:00AM Sary wrote:

Selien - It's interesting you mentioned leg weakness. I had WBR at the same time as you. I have mostly recovered from the side effects, but I feel like leg weakness is getting worse. I wondered if it was from previous bone radiation, but now I'm not so sure since you are experiencing the same thing. I am having trouble walking up stairs (normal walking is ok) and if I crouch down for something I can't stand up. I'll be talking to be my RO on Friday.

Age 38 at diagnosis, Oncotype 23 Dx 3/14/2014, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Hormonal Therapy 5/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2015, Stage IV, metastasized to lungs Dx 6/2018, IDC, Stage IV, metastasized to liver Dx 11/2018, Stage IV, metastasized to bone Targeted Therapy 5/31/2019 Afinitor (everolimus) Chemotherapy 10/31/2019 Xeloda (capecitabine) Chemotherapy 1/28/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 2/2020, Stage IV, metastasized to brain Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Aug 31, 2020 09:23AM Seilien wrote:

I am exactly feeling that! I can move around if i got up but if I get low enough I have a hard time to get up! My drs gave no advice other than exercise and move my legs more! When you look at where the motor functions on the brain, it made me wonder too

Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 5/31/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Aug 31, 2020 11:13AM Sary wrote:

Selien - I just had a call with my MO and mentioned this to her. She said it could be a side effect of being on the dexamethasone. I was originally on it for brain swelling and then had to go back on for liver pain. If you google side effects of the steroid, muscle weakness (steroid myopathy) comes up and seems to describe what I am experiencing. Are you on steroids?

Age 38 at diagnosis, Oncotype 23 Dx 3/14/2014, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Hormonal Therapy 5/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2015, Stage IV, metastasized to lungs Dx 6/2018, IDC, Stage IV, metastasized to liver Dx 11/2018, Stage IV, metastasized to bone Targeted Therapy 5/31/2019 Afinitor (everolimus) Chemotherapy 10/31/2019 Xeloda (capecitabine) Chemotherapy 1/28/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 2/2020, Stage IV, metastasized to brain Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Aug 31, 2020 12:11PM mara51506 wrote:

For those recovering from leg weakness, if stairs or walking are not yet options, a mini elliptical that you can use from the couch may be the way to go. I use a cubii jr. Not selling for them or anything, but I supplement my exercise with it. It does not require anything, though I would get a mat. It is more substantial than simple mini peddlers. It usually is available at shopping networks on TV. It will definitely strengthen leg muscles and take any fear out of falling or losing balance.


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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Aug 31, 2020 12:54PM - edited Aug 31, 2020 01:30PM by Sunshine99

First, I don't have brain mets, so kick me out if I shouldn't be here. :)

I do want to say that I just purchased this Under Desk Elliptical after reading Mara's recommendations. I bought mine on Amazon. I did not buy the mat, but it seems to be stable on my floor. The little doo-dads for under the wheels are perfect for keeping my rolling office chair stable. There is a fancier version of this elliptical that has Bluetooth, etc., but I just went for the Junior at around $250 on Amazon.

My review, is "Man, I love this thing!" I'm suspicious of too many good reviews on Amazon, but Mara convinced me (Thank you, Mara). It's heavy duty, weighs about 27 pounds, and if I put my Fitbit in my sock, then it counts my steps. No regrets.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Aug 31, 2020 01:28PM Seilien wrote:

I was weaned off the steroids last week so hopefully I'll get better soon. My chemo dose was also lowered and I actually just had a cosmetic surgery. Theres too many possibilities! Let me know when your legs seem better 😌

Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 5/31/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Sep 1, 2020 05:23AM leftfootforward wrote:

I haven’t had WBR but I am on steroids. I definitely have leg weeknesd. I also have anemia. Might want to have blood levels checked as not having enough red blood cells or hemoglobin also makes me unstable.

I have had gamma knife and cyber knife radiation:


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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Sep 1, 2020 05:22PM mara51506 wrote:

I was also anemic earlier this year myself and can definitely agree this would help contribute to the leg weakness. The only way I could turn this around for myself was eating a lot of beans and spinach with meals. Cooked spinach as well. I no longer have anemic blood counts.

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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Sep 7, 2020 05:35PM Seilien wrote:

Update: I have stopped my chemo because I ended up getting hospitalized for blood clots. I will say I had horrible diarrhea and terrible rash on my hands and feet while there (5 days). I am so glad that I stopped the chemo. I felt so awful but I still don't feel like eating. I guess we will have to see what we have to do next. My legs are still weak.
Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 5/31/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Sep 8, 2020 06:18PM mara51506 wrote:

Seilen, I am so sorry to hear that you had to be hospitalized and all you have gone through, I can totally see why eating would not be an option right now. Hopefully the break from chemo and the treatment for the blood clots gets on a better path. Hugs going out to 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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Sep 8, 2020 08:10PM illimae wrote:

Starting the Herceptin, Xeloda, Tukysa combo on Tuesday, hopefully with good results on my brain mets. I’ll keep you updated. My MO wasn’t pushing it, as I had the option to remain on H&P but she was a lead researcher in the her2climb trial and was excited about its effectiveness in the brain. Fingers crossed :)

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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Sep 9, 2020 07:07AM Goodie16 wrote:

Good luck illimae! Fingers crossed this does the trick.

Dx 4/18/2014, IDC, Left, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 2/2015, IDC, <1cm, Stage IV, metastasized to brain, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Brain Surgery Mastectomy: Left Hormonal Therapy Arimidex (anastrozole) Targeted Therapy
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Sep 9, 2020 07:22AM mara51506 wrote:

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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Sep 9, 2020 11:31AM Seilien wrote:

Hoping all the best for you illimae! I'm finding its finding the right dosage amount that makes the treatment bearable.

Thanks Mara =)
Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 5/31/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Sep 9, 2020 11:34AM mara51506 wrote:

HeartGlad to be here for you Seilen

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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Sep 12, 2020 10:38AM starlove wrote:

Hi Lumpie,


I have leptomeningeal brain tumor. I was diagnosed on April 2020. I got 2 radiation treatment for the whole brain and couldn't tolerated it, so I decided to stop those treatments. I almost died from radiation treatment. My life was hell for 2 months.


After healing from radiation damage (2 months), I was put on Capecitabine, Tukysa and Herceptin on July 16th. I am handling these drugs well. However, I have hand and foot syndrome. Bottom of my feet burns and hurt. So my MO has suggested that I use 'udderly smooth' cream for my feet. It seem to work. I try not to walk a lot. Also, my knuckles have darkened in color. Which is annoying, and I have read that is one of the side effect of Capecitabine. I am not sure if this treatment has helped me or not since I haven't had any scans yet. I may have scans next month. Also, They give me bad stomach burn so I take pepcid AC every day. I take 3 capecitabine (1500 mg) twice a day and 4 Tukysa (200 mg) twice a day. Capecitabine is 2 weeks on and one week off.

Overall, treatment seems just fine. I also take CBD oil every day to prevent seizures. I was on Keppra (one of the worst medications I have ever taken). I stopped taken it as it was making me crazy. I was hearing voices and feeling angry all the time. CBD oil has helped me relax and sleep good. I also stopped taking steroid as it increased my blood sugar and caused diabetes mellitus type II. I am on insulin now as a result of the damage caused by Dexamethasone (steroid).


I hope that you can handle the medications well. Do not fear the medications. It is well tolerated. Better than IV chemo for sure. I pray that God bless you with healing light.


Love and Peace

Star

Love and Peace Dx 1/13/2017, ILC/IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone/liver/lungs/other, 3/3 nodes, ER+/PR+, HER2+
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Sep 12, 2020 11:58AM leftfootforward wrote:

star- that’s a lot of meds. Xeloda is very hard on some people. have you found the xeloda thread?


I am also on tukysa for brain Mets. I take it with kadcyla .

You g

Have been through the ringer and I wish I could do more for you.

Big hugs.

I

Pm me if you’d like.

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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Sep 16, 2020 08:45PM SusaninSF wrote:

Thanks lulubee! Good to hear from you. Looks like you are almost at your 10-year metastatic anniversary. Congratulations and hope you get a lot more years!!!

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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Sep 16, 2020 09:00PM SusaninSF wrote:

LFF,

Love the photo of you and your son! Your hair has grown back and looks terrific! I'm still completely bald with no eyebrows or eyelashes but feeling good. Our air finally got better today. My son has been in Seattle all week and the air looks like it's still bad there.

Hope you are doing well.

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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Sep 18, 2020 01:31PM - edited Sep 18, 2020 01:31PM by Seilien

Has anyone felt a lot of fatigue with xeloda,tukysa,herceptin? I've been really tired and weak lately. I'm hoping it's only in the beginning of the treatment and I can shake it off. I also got H and F and diarrhea. I'm just tolerating to SEs but the results have been positive.

Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 5/31/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Sep 18, 2020 03:08PM illimae wrote:

Seilien, it’s only my 4th day on this combo and I haven’t noticed any SE’s or weakness yet.

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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