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Old 03-04-2015, 02:11 PM   #21
Barbara H.
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Re: Ugh Brain Mets!

Hi DizzyDo,
I had surgery and stereotactic radiation for a 3 cm tumor to my pre-frontal cortex in 2004. I also hated the Dex. I am on Tykerb and Herceptin and continue to be NED. My thoughts are with you.
Barbara H.
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Old 04-16-2015, 02:16 PM   #22
DizzyDo
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Re: Ugh Brain Mets!

Thanks everyone for the kind comments and support! I just got the results of my MRI two months post treatment. No new lesions, the large one is down to 8 mm from 15. The small ones are about the same or a bit smaller. No indication of active disease was the call from the radiation onc. I am so relieved! The onc said it will take a while for the body to reabsorb the tissue from the lesions and possibly might have some scarring. No edema was present (thank goodness, I don't want any more dex!). The rest of me stays NED (well sorta Ned, I have some bone scars).

I still have some fatigue and I gained 20 lbs on the dex. Doc said that should continue to improve, I'm walking about an hour a day and that seems to help.

So the stereotactic rads seemed to have worked. I will be getting MRIs every 3 months for a while now. I'm still on Keppra and probably will be for another 6 months at least. Hopefully I'll get a break for a while, though it's hard to tell on this roller coaster ride!
__________________
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 04-16-2015, 02:32 PM   #23
StephN
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Re: Ugh Brain Mets!

Hi!
So happy to hear from you and good news to boot!

Looks like all the right things are in place for a long, slow dance with NED.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-16-2015, 04:05 PM   #24
JessicaV
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Re: Ugh Brain Mets!

Hi, I am delighted for you that your treatment has worked, and hope the 18-24month process of "tumor-disintegration and reabsorption" is not too anxiety-provoking for you.
For losing weight, I found three-to-four-day "fasting diet periods" (ie max 600 calories per day of really healthy food) every 3wks really helped drop the 10kg I gained on chemo. It is also meant to do wonders for the immune system-Volter Longo at University Southern California has been researching this for a while.
http://www.medicalnewstoday.com/articles/277860.php
http://news.nationalpost.com/health/...ew-study-finds
Worth looking into maybe?
__________________
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 04-16-2015, 09:00 PM   #25
forher
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Re: Ugh Brain Mets!

DizzyDo,
Good to hear that lesions are smaller and no new ones!

@JessicaV: I have been trying to "fast" as well and find this topic fascinating. I would love to have more discussions on fasting, but won't side track from DizzyDo's great news!
__________________
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 04-19-2015, 08:52 AM   #26
BevinSomerset
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Smile Re: Ugh Brain Mets!

What a challenge - brain mets and a failed implant. You are braver than you think. Things sound positive. Forget the implants and concentrate on survival.
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Old 04-19-2015, 09:50 AM   #27
Lucy
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Re: Ugh Brain Mets!

I'm glad to hear things are improving. I hope things only get better.
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Old 04-19-2015, 10:09 AM   #28
KsGal
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Re: Ugh Brain Mets!

Hello! I haven't posted here in a while. I had five brain mets. I first was treated with whole brain radiation. Two mets were still there on my next scan, and I received Cyberknife on those. Like others said the sex was the worst part of the whole thing. I was on them for months. Gained fifty pounds! My house was soooo clean. Lol. I just wanted to tell you that since the cyberknife I have been all clear. It's been about eight months now. Definitely an effective treatment and pretty painless.
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Old 04-19-2015, 10:11 AM   #29
KsGal
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Re: Ugh Brain Mets!

Lolol. The Dex was the worst part! (Although the sex wasn't that great either))) haha
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Old 04-19-2015, 06:20 PM   #30
Crn
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Re: Ugh Brain Mets!

KsGal, thanks for the belly laugh! Glad to hear to hear of your positive results DizzyDo.
__________________
Jan 2014 -mammogram, targeted mammogram, and ultrasound.
Feb 2014 -stereotactic biopsy (IDC, lobular growth pattern, grade 3, ER+ 30%, PR+ 1%, HER2+ 3+, ki67 10%), MRI - tumor up to 7cm, Lymph node biopsy - malignant.
Mar 2014 -port placement, chemo begins (TCHP)x6 every 3 weeks, Neulasta shots.
June 2014 complete chemo series, Herceptin only until Mar 15
Aug 2014 -Bilateral mastectomy with left axillary dissection (PCR in left breast, cancer cell found in lymph node).
Sept 2014 -radiation 28x
Oct 2014 complete radiation
Nov 2014 - begin Arimidex
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Old 04-20-2015, 12:03 PM   #31
DizzyDo
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Posts: 49
Re: Ugh Brain Mets!

KSGal - oh loved the typo, too funny! I spit coffee on my iPad when I saw it, I was laughing so hard. Thanks all for the positive thoughts and best to all of you. For those of you doing the SRS, hang in there, it does get better!
__________________
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 09-28-2015, 08:12 AM   #32
BevinSomerset
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Question Re: Ugh Brain Mets!

Hi All This is Bev in Somerset England
Just thought I ought to update and maybe get some advice. After the Gamma Knife in March I eventually came off Dex and tumour reduced to 1.4cm. However, in Sept they found signs of"progression" and the current wait and see view is a hard way to live. The MultDiscipline Team are hoping it is necrosis. Some symptoms returned - mainly nerve pain and back on 6mg Dexamethasone plus Gabapentin. Anyone else had this 'necrosis' issue after Gamma Knife?
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Old 09-28-2015, 01:38 PM   #33
embur102
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Re: Ugh Brain Mets!

Hi Bev.

I had rebound swelling and necrosis from Gamma knife 6 months after the treatment. Was put back on a heavy dose of dex----how we all know the UGH that comes with dex!!--and watched and waited. ( discussed the very real chance of awake craniotomy needing to happen...on Christmas Eve! Dodged that bullet, thankfully)

Symptoms subsided with the steroids, and the follow up MRI showed significantly decreased edema. The next MRI showed minimal edema and a slight decrease in necrosis and tumor size, no new lesions. Scheduled for a 6 month MRI in November...so far, no neurological symptoms, so I am hoping for continued good news.

I was on Keppra....made my depression worse.tried Lamictal but had an allergic reaction, now on Vimpat, hoping to wean off that if good MRI report in November.

Surprising to say, and experience!, but there IS life after/with brain mets...I am alive, and functioning well, 16 months after brain mets diagnosis, and subsequent liver mets dx. A year ago, I was sure I wouldn't be alive in September 2015....yet, here I am. This disease is a difficult thing to track, it can change course at the drop of a hat. I am so grateful we have each other!!
__________________
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 09-28-2015, 01:57 PM   #34
BevinSomerset
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Re: Ugh Brain Mets!

Hi Embur
Thank you so much for your quick response and information. Sleep would be so good. Feel it is months since I slept through the night. I am going to try to reduce Dex starting tomorrow. My met is wrapped around the Thalamus so have sensory issues, vision and nerve pain all down right side of face/body. Thinking of exploring alternatives for pain management such as acupuncture as pain medication almost seems futile. Knowing someone else is in this world who has been through similar is strangely comforting. Dont feel so alone. Bev
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Old 09-28-2015, 04:20 PM   #35
embur102
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Re: Ugh Brain Mets!

Funny, Bev, I am not known for quick responses! Quite the opposite...I am not on this forum regularly, and rarely respond. I just happened to be on the site today!

Yes, I know the sleeplessness very well...spent 8 months on high doses of dex...you should see my house hahahaha....while most women are spending those frantic hours cleaning, I was suddenly "artistic" and felt compelled to do things like decoupage the refrigerator, paint inspiring words like "believe" "vibrant healing" and " focus outward" all over the walls, and scotch tape pictures of sunflowers all over the kitchen! It is quite the masterpiece

For the sleeplessness, I found valerian, and Yogi Kava Stress Relief tea, to be somewhat helpful. Also, the neuro nurse said to stagger the doses throughout the day, getting all doses in before 6 pm, and not take any dex after 6 pm so that maybe I could get some sleep. That worked a little bit, too.

I don't have too much pain, I do have monthly acupuncture and sound therapy ( more if needed) I meditate/pray daily, practice yoga. I do what I can to look forward...obviously that is easier to do when I'm feeling well. This past winter was a rough haul, and I wasn't really feeling the whole "holistic, positive" vibe hahaha
One day at a time

We are out here for you, Bev...maybe not physically with you, but always spiritually. You are never alone

Peacelovehugsjoy
__________________
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 09-29-2015, 04:42 AM   #36
BevinSomerset
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Smile Re: Ugh Brain Mets!

Embur You are a star that message was just what I needed. Ordered the glasses today and will have prisms fitted next week so double vision should be obliterated from my life. Looking into acupuncture and will stagger Dex - so helpful. Not one for praying but with two of my 3 children now living in USA and discovering they have gained from a Georgia/Florida 'Southern' life adaptation I think its time I learned from them and at least look into Yoga.
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Old 09-29-2015, 05:13 AM   #37
Freakzilla
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Re: Ugh Brain Mets!

Hi Bev, Can I ask where you had your SRS done?
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Old 09-29-2015, 05:26 AM   #38
BevinSomerset
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Re: Ugh Brain Mets!

hi godzilla

Carried out by NHS in Bristol, UK, there are 7 gamma knife centres in uk. Due to funding issues the equipment is only used 2 days a week. Crazy when so many more cancer patients could benefit.
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Old 09-29-2015, 05:32 AM   #39
Freakzilla
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Re: Ugh Brain Mets!

Thanks, My Girlfriend and I have got an appointment at St Thomas's in London on Thursday to talk about SRS to thhe tumour bed.

Agreed, more should be used of the facilities.
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Old 09-29-2015, 06:05 AM   #40
BevinSomerset
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Re: Ugh Brain Mets!

So so sorry that I used wrong name! Bit weary today. Good luck with St Thomas - main centre in UK for cancer related illness is Royal Marsden in London. I am hoping to transfer my case to them soon.
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