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Old 01-05-2015, 10:35 PM   #1
DizzyDo
Senior Member
 
Join Date: Feb 2014
Location: Washington State
Posts: 49
Ugh Brain Mets!

Hello Lovelies, I need some of your advice again.

Just when things were going well....I just found out I have 3 little mets in my brain. Ugh. I had a seizure last week and the MRI found em. Doc very optimistic and I'm getting the cyber knife next week.

I remain NED except in da head. Interesting, no indication from my tumor markers on this one, all was normal low. I didn't really have any symptoms until the seizure hit.

Right now I'm on the dex steriods and Keppra. The dex is driving me batty, I am not sleeping well and crabby! I've been cleaning a lot around the house though lol! I'm off work for a bit until I get this zapped.

A couple of questions: any advice on manage the dex? I take 4 mg twice a day. I have the flushing face - thank goodness it's winter. Anything that can help with sleep?

Also - what's the cyber knife like? I had my mask made last week, now I just want to get I to get it over with. How long on Dex after the cyber is done?

Thanks as always for your help, it's good to know others have been down this road. I am very optimistic and looking forward to getting this behind me.

I guess I deserve my ID name now cuz I'm Dizzy!
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 01-06-2015, 01:25 AM   #2
JessicaV
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Join Date: Apr 2014
Posts: 204
Re: Ugh Brain Mets!

Hi, my sleep answers are:
1)A sixth to one half of a tab of Restivit and then (instead of trying to sleep) just lie down in a quiet dark and comfortable place and embrace the drowsiness. Let drowsiness flow into you and fill your mind and take you to that mmmm place where you are so drowsy you are likely to then fall asleep before you know it.
2) Meditate for blocks of 20 min to an hour or more. Lie in bed and let yourself go into a meditative trance where you bring yourself back to awareness of a word or a mantra or your breathing or a meditation tape you like. Be comfortable that this will rejuvenate the body so you will get away with a lot less sleep.
3) Remember that a recent study showed that people worried about not sleeping actually sleep several hours a night more that they think. You can be "thinking" and even "worrying" and still be asleep. People attached to machines thought they had not yet fallen asleep, but they had. So maybe you are worrying needlessly
4) Gather up a collection of really good books, and fancy flavoured tea. Or other good relaxing things (preferably not using a screen)eg massage chair, fav music, playing musical instruments , learning a foreign language, quilting, knitting or crocheting. Or just things to fill your "I can't-sleep" time well so you feel it is not wasted. "If I can't sleep at least I can have a good time lying in bed resting and NOT sleeping".
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 01-06-2015, 02:27 PM   #3
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 388
Re: Ugh Brain Mets!

Wife has been there, done that three times. Gamma Knife commonly will make you nauseous, and the steroids help. It will potentially cause minor hair loss, but it should not be significant. Brain mets need follow up MRI scans, preferably at the best place you can find. Know that if the Gamma knife does not work (it is 70% effective), that the options are there and your doctor may not know about them.
Dex steroids and Keppra will make you rough to be around, so do things you hate to do and blame your anger on having to perform those tasks. That way you do not blame the disease. Two to three weeks and you are good to go.
Balance might be an issue for a short period. The MRI scan after the Gamma Knife (actually the one about four weeks after the procedure) should be the all clear to go skiing, dancing, cheerleading or similar activities. Try not to do things that cause your head to shake significantly. Nina slept with a back pillow in a chair for the first week.
Make sure the doctors follow up with evaluations every 60 to 90 days.
And email onto this board so I can read how you are doing. It is not a death sentence or a shortened life span if you do the things needed. Tell the doctor you are in contact with someone that had brain lesions five years ago and that she is now in remission totally.
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Old 01-07-2015, 03:13 PM   #4
DizzyDo
Senior Member
 
Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Thanks for the replies Jessica and RolePaul. Love the idea of mediation and the sleep advice, I'll give that a whirl Jessica!

Your reply gave me a good teehee RolePaul, I am definitely a Dex Monster right now. I have been cleaning my house like a crazy woman. Good idea to do some crap jobs while I'm like this. Seriously this house has never been so clean.

Thanks for the sage advise, you all help make this less scary. I'm still on for gamma knife next week Tues and Thurs. After that, a couple of weeks and they will taper dex. Hopefully I'll go back to non monster mode. Doc told me MRI every 3 months for the foreseeable future.
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 01-07-2015, 03:28 PM   #5
JessicaV
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Join Date: Apr 2014
Posts: 204
Re: Ugh Brain Mets!

Hi Dizzy Do, you are currently living out my nightmare, but hearing how it is to be you going through this with such remarkable aplomb, plus informing feedback like RolePaul's, gives me the most amazing, valuable and somehow calming vision into the experience.

I love the way you are just going with it, doing all you can to make it work and to resolve the problems as they arise. You are amazing! Please keep on posting, sharing this, letting us travel with you. I will have much less fear of brain mets and cyberknives etc. I thank you deeply for this, and wish you every success and speedy healing.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.


Last edited by JessicaV; 01-07-2015 at 03:31 PM.. Reason: copyediting
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Old 01-10-2015, 11:00 AM   #6
DizzyDo
Senior Member
 
Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Thanks for all the support! I love the other posts as well about the stereotactic radiation successes. Right now I am hanging in here, my only issue is dealing with the dex. Wow this stuff is something else, hard to describe what this is even like. The rad doc's nurse helped me out a lot this week, adjusting the levels down a bit and checking up on me. So I feel well cared for, now just waiting for the procedure next week and then hopefully the taper off the dex. I have so much energy I think I will go clean the basement today. My attention span is about 15 seconds so that should be interesting.

I'm really curious about what the procedure will be like next week. Lots of people involved, rad doc, neuro doc, techs, a physicist (not sure what exactly he does, I suspect he designs the rads to shoot). I'll will be relieved when it's done and the spots are gone. It's a creepy feeling knowing these little buggers are in my brain.
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 01-10-2015, 11:45 PM   #7
Nurse4u2day
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Join Date: Feb 2014
Location: California
Posts: 426
Re: Ugh Brain Mets!

Dizzy do sorry about the brain mets... I hope the gamma knife takes care of this crap. I have no personal experience in relation to stage 4 cancer and I pray I never will.With that said I do have experience with the no sleep and 15se one attention span. The only thing that partially worked for me was 2 mg of Ativan. Even ambien was useless. Weird thing is Ativan at 1mg would wire me out but doc suggested 2 mg at night only and no narcs. Just throwing that out there for you
__________________
11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
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Old 01-13-2015, 03:05 PM   #8
embur102
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Join Date: Jun 2012
Posts: 81
Re: Ugh Brain Mets!

Hi Dizzy,

In June, 2014 I had a brain met that was discovered by seizure, also....no other symptoms, or metastasis at that time.
Did the dex and Keppra....holy cow, was I a Hot Mess!!

Hang in there, it does get better. The nurse suggested taking the dex at 6 am, 10am, 2pm ,and 6pm, and adding melatonin about 8 pm, to be able to sleep. It did help ( i wasn't decoupaging the fridge at 3 am and getting confrontational with the neighbors anymore!)

I had a successful Gamma knife treatment, then had rebound swelling 6 months after. Currently weaning down from another huge round of dex ( started in Oct., now down to two milligrams a day, will finish Jan 31), but it has taken care of the swelling.

Switched from Keppra (which made me severely depressed) to Vimpat.

Liver mets discovered about the same time as the swelling, so now in treatment for that (Taxotere/Herceptin/Perjeta).

Know that you WILL get through this!! There is lots of love and support and "success" stories from the women on this board.

Good luck with the gamma.....let us know how it goes.
Holding you in Love and Light, and sending healing energy ~~~~~~~~~~
__________________
Dx 4-12-2012
R unilat Mx 5-25-2012 (no reconstruction)
Stage 2B, Grade 3, Her2+++, Er + (15%), Pr -
4.2 cm, 2/14 nodes +
3 AC, 4 T/H
Zoladex 4 months
Oophorectomy Feb 2013
AI daily
Herceptin every 3 wks until Sept 2013
Gamma Knife June 2014, 2 cm brain met
Liver mets Oct 2014
Taxotere/herceptin/perjeta-CLEOPATRA trial Nov 2014-Mar 2015


"RISK BEING SEEN, IN ALL OF YOUR GLORY!" Jim Carrey
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Old 01-13-2015, 06:45 PM   #9
DizzyDo
Senior Member
 
Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

I had my first session today with the gamma. Pretty much a non event, I almost fell asleep! Lots of people they made it easy. I get 2 more treatments over the next 2 weeks because there are 3 spots. They zapped the 5 mm one, they think that one game me the seizure because of the location. Right now I'm a bit tired, even with the Dex madness this seems to fatigue me a bit.

Nurse thanks for the advice, I asked for some Ativan today I will try it. They also put in for a sleeping pill, ambient, I'll leave that as plan B.

Embur thank you for sharing your experience that is so helpful to me! I laugh at the Fridge decoupage omg! I scrubbed the crap out of my fridge yesterday and then cleaned and arranged the magnets on the front of it. I don't know why, just some strange complusion. I also have been ordering lululemon clothes and forgetting it did it. This dex stuff is strange. The doctor cut me back a little bit more on dex starting Thursday, maybe I scared him today.

Thanks everyone for the support, I feel so less alone in this, it really helps!
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 01-13-2015, 07:41 PM   #10
JessicaV
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Join Date: Apr 2014
Posts: 204
Re: Ugh Brain Mets!

Well done for getting through it so well. I was intrigued to learn that after 6-9 months the tumor/s should swell as a sign the process is working, and then start to shrink, and continue to have changes for up to 18months as tumor the cells die and necrotize. It is amazing to have such a relatively non-invasive process able to target metastatic brain tumors so well. Sounds much better that Whole Brain Radiation! I hope it is completely successful as StephN's was, and that you will continue to give us feedback and share your amazing experience of this process with us.Thank you so much and hope the next few days and weeks are gentle on you.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 01-14-2015, 02:25 PM   #11
embur102
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Join Date: Jun 2012
Posts: 81
Re: Ugh Brain Mets!

Yea! One down!

Glad to hear it went well. You will notice some fatigue, even with the crazy-making Dex. ( my therapist said the steroid-mania is like the mania in Bipolar Disorder. You may do things like compulsive spending, committing to projects that you can't complete, or compulsively scrubbing the fridge , and then not remember. Wild stuff!)

Allow yourself to rest when you need to.....especially with multiple treatments. Don't push too hard.....There will be plenty of time for that later.

Keep on keeping on....we will keep sending good energy and prayers your way!!
__________________
Dx 4-12-2012
R unilat Mx 5-25-2012 (no reconstruction)
Stage 2B, Grade 3, Her2+++, Er + (15%), Pr -
4.2 cm, 2/14 nodes +
3 AC, 4 T/H
Zoladex 4 months
Oophorectomy Feb 2013
AI daily
Herceptin every 3 wks until Sept 2013
Gamma Knife June 2014, 2 cm brain met
Liver mets Oct 2014
Taxotere/herceptin/perjeta-CLEOPATRA trial Nov 2014-Mar 2015


"RISK BEING SEEN, IN ALL OF YOUR GLORY!" Jim Carrey
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Old 01-24-2015, 10:48 AM   #12
DizzyDo
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Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Hi everyone! Just an update - I'm still doing good - I had my second treatment this week and I am scheduled for the final one next week. Definitely the worst part of this is the Dex, my skin is breaking out and I am acting crazy! Embur that is interesting that it is like the manic phase of bipolar, it does feel like that. It is a bit better since the dose was cut. Also Nurse thank you for the advice on the Ativan, that worked for me and I am sleeping better than I was. The other issue is a bit of fatigue like embur described and some confusion at times, but really not too bad. I am still working as I can. I can't drive because of the seizure (6 months restriction Washington state) but getting by with lots of rides from coworkers, family and friends.

Some of my craziness - I'm now a strawberry blonde, redid My wardrobe mostly lululemon and still cleaning the house on a daily basis. Last night I woke up at 2 and decided I needed to cook some bacon.....Dex taper will start after next treatment sometime, my poor husband will be so relived I am sure....
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 01-24-2015, 12:23 PM   #13
embur102
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Join Date: Jun 2012
Posts: 81
Re: Ugh Brain Mets!

Two down, one to go! You are making it thru, girl!!

I love the "cooking bacon at 2 am" and strawberry blonde! Have fun with this...it makes all yukky stuff easier. ( I almost miss the mania....now just have the puffiness/weight gain...acne is starting clear up, too)

Keep us updated and know that we are praying/sending healing to you.

{{{{{{{{{{{{{dizzydo}}}}}}}}}}}}}}}}}}}}}
__________________
Dx 4-12-2012
R unilat Mx 5-25-2012 (no reconstruction)
Stage 2B, Grade 3, Her2+++, Er + (15%), Pr -
4.2 cm, 2/14 nodes +
3 AC, 4 T/H
Zoladex 4 months
Oophorectomy Feb 2013
AI daily
Herceptin every 3 wks until Sept 2013
Gamma Knife June 2014, 2 cm brain met
Liver mets Oct 2014
Taxotere/herceptin/perjeta-CLEOPATRA trial Nov 2014-Mar 2015


"RISK BEING SEEN, IN ALL OF YOUR GLORY!" Jim Carrey
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Old 01-24-2015, 05:21 PM   #14
JessicaV
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Join Date: Apr 2014
Posts: 204
Re: Ugh Brain Mets!

Hi, I think you are absolutely amazing and I really admire your courage. I find myself that the important thing about periods of madness is to continue to like and understand and accept yourself, and that must be easier if you are not attacking people and or doing dangerous, risk-taking type crazy stuff eg becoming totally promiscuous or spending hundreds or thousands of dollars you cannot afford. All your mad things are actually quite quirky, admirable and ones that will not hurt anyone. I do hope you are keeping a journal of this period. And I wish you all the best for the third treatment and overall outcomes. My thoughts and admiration are with you.
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1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 02-15-2015, 09:40 AM   #15
DizzyDo
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Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Hi everyone - just an update - I finished my treatment two weeks ago, it was pretty straight forward. Now it's wait and see - MRI will be in 2 months. Tapering off the Dex is a bit rougher than I expected, I hated it so much I could not wait to get off. I've been fatigued and have had to back up a couple of times due to headaches, right now I on only 1 mg per day versus 12 at the Max so I'm getting there. Slow and steady seems to work. Definitely the Dex was the worst part of this.

Thanks for all the encouragement and sharing of your personal experiences, that really helps make this less. Love you all!
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2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 02-15-2015, 11:45 AM   #16
sassy
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Location: Mountains of Virginia
Posts: 2,267
Images: 4
Re: Ugh Brain Mets!

Fingers crossed and prayers going up!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 02-15-2015, 12:19 PM   #17
Mtngrl
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Location: Denver, CO
Posts: 1,427
Re: Ugh Brain Mets!

Thank you for keeping us all in the loop. I'm glad you're done with treatment and tapering off the steroids.

For me, having to take Decadron was the worst part of being on Taxol. Nobody warned me that it would make me crazy and bitchy. I would say things that, while "true," were completely inappropriate.
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Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 03-03-2015, 10:19 AM   #18
BevinSomerset
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Join Date: Sep 2014
Location: English and living in Somerset, England.
Posts: 10
Re: Ugh Brain Mets!

Hi I have read your post a few times. Have Gamma Knife on Thursday in the UK - here it is a relatively new treatment so few people I can link with and your post fills me with hope. I have been on Herceptin with NED continuously for 3 years so the new sudden diagnosis was a real shock.
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Old 03-04-2015, 08:09 AM   #19
forher
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Posts: 83
Re: Ugh Brain Mets!

Hi DizzyDo,
How are you feeling now?
I had stereotactic surgery in Dec 2014 for 4 brain mets. I didn't really need the dex. Have you tapered off now? I had an MRI about 1 month later. Did you have your mri yet? And they are checking me every 3 months. I don't have systemic disease so there's not much to do. I can take Tykerb, but opted to wait until the results if my next MRI. I also asked my onc to start back up on herceptin which I know doesn't cross the BBB, but I'm hoping it will keep my body clear. Are you on any other treatment? Keep us posted.
__________________
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 03-04-2015, 08:20 AM   #20
forher
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Posts: 83
Re: Ugh Brain Mets!

Hi bevinSomerset,
I remember being newly diagnosed with brain mets. I was also in shock. I had 2 days back to back of SRS treatment that left me fatigued. I just wanted to lie down all the time and had some trouble concentrating. Honestly, i just keep wondering if it worked. But I'm still working and try to do the usual things in my life. I wish you the best and please keep us posted.
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