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Old 02-15-2012, 07:12 PM   #1
binghamk101
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My Mom-Brain, Lungs, Bone

In 2007 my mom was diagnosed with HER2+ stage 2a. She had a lumpectomy, radiation and chemo. In July 2011 we found out she was stage 4 with mets in her lungs, bones and brain. She had WBRT, navelbine and tykerb (made her really sick and had to stop), then taxotere and Herceptin. In December she went in for what was supposed to be a routine hernia laprascopy. She developed a fistula and almost died. She was on TPN and in the hospital for 7 weeks. She hasnt been able to have chemo for almost 10 weeks becuase she still has an open wound in her abdomen from the surgery. In the last few days we have found that the spot on the lung has increased and lymph nodes are now involved. Today we found there are new spots in her cerebellum and front lobe. They are considering WBRT again or Gamma Knife. In the last week she has lost all control of her right leg probably due to nerve damage from the brain or spine (waiting on spine MRI results). Other than the leg, she feels okay. Our family is terrfied and needs stories of encouragement. Has anyone had gamma knife in the cerebellum? Anyone done WBRT more than one? I need help! I am lost!
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Old 02-16-2012, 03:05 AM   #2
Jackie07
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Re: My Mom-Brain, Lungs, Bone

Clin Transl Oncol. 2012 Jan;14(1):43-9.
Predicting compliance and survival in palliative whole-brain radiotherapy for brain metastases.

Sabater S, Mur E, Müller K, Arenas M.
Source

Department of Radiation Oncology, Complejo Hospitalario Universitario, Albacete, Spain.

Abstract

Objective Brain radiotherapy is the main treatment for patients with brain metastases but its goal is just symptom control. Our aim was to study if different performance tools, used in geriatric practice, could improve patient selection for decision-making in the palliative brain radiotherapy setting. Patients and methods Data from 61 consecutive patients were analysed. In addition to Karnofsky Performance Status (KPS) their physical activity was assessed by means of the activity of daily living (ADL) and instrumental ADL (IADL) scales. A neurocognitive evaluation was performed with the Pfeiffer Short Portable Mental Status Questionnaire (SPMSQ) and with the Mini-Mental Status Exam (MMSE). Radiotherapy compliance and short survival were the endpoints of the study. Results High rates of cognitive impairment were found by both neurocognitive tools (Pfeiffer: 19.7% of patients; MMSE: 30%). Dependence was also highly prevalent, either measured by the ADL (50.8%) or by the IADL (43.3%). Nearly one third (27.9%) of patients died soon after radiotherapy evaluation. Longer survival was related to female, younger than 60 years, breast cancer primary tumour, steroid response, RPA class, and higher performance and neurocognitive score tools. A premature death was associated with neurocognitive tools, IADL and longer interval from brain metastatic diagnosis to radiotherapy. Twenty-three percent of patients were not able to finish the WBRT course due to clinical deterioration. The only variable related to compliance was a low MMSE score. Conclusions Results suggest that the geriatric tools analysed could offer information on brain palliative radiotherapy complementary to that offered by the more usual tools. It will be interesting to study if our data could be extrapolated to the general palliative oncological field.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 02-16-2012, 03:18 AM   #3
Jackie07
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Re: My Mom-Brain, Lungs, Bone

Couldn't find anything published after 2008:

J Neurooncol. 2008 Jul;88(3):331-7. Epub 2008 Apr 8.
Metastases to the cerebellum. Results and prognostic factors in a consecutive series of 44 operated patients.

Pompili A, Carapella CM, Cattani F, Fabi A, Giannarelli D, Giovannetti M, Mirri A, Occhipinti E, Telera S, Vidiri A, Pace A.
Source

Division of Neurosurgery, Regina Elena National Cancer Institute, Via Elio Chianesi 53, Rome, Italy. pompili@ifo.it

Abstract

BACKGROUND:

Recent reports on large number of patients with brain metastases report that Whole Brain Radiotherapy (WBRT) and Radiosurgery (RS) should be the treatments of choice, particularly in multiple lesions cases. Among the prognostic factors, the cerebellar location was never considered, although this results in hydrocephalus, brain stem compression, ataxia, intracranial hypertension.
MATERIALS AND METHODS:

We evaluated 44 patients with cerebellar metastases operated over 6 years. Primary lesions were: Lung (15), Breast (12), Gastrointestinal (9), Gut (3), Ovary (2), Melanoma (1), Salivary gland carcinoma (1), Unknown (1). Lesions were <3 cm in 11 cases, > or =3 cm in 33. Average KPS scoring at admission was 69.9. Twenty nine scored > or =70, 15 < 70.
RESULTS:

Two patients died for surgical complications, 2 died within 1 months for other causes, 2 were lost to follow up. Eight had postoperative hematoma requiring reoperation, 1 had an occipital infarction. Average KPS scoring at discharge was 76.4, P < 0.002. Those patients that had complications scored less, the difference is significant (P < 0.008). Median survival was 8 months, 1 year survival rate 29.9%. Survival was correlated with either admission or discharge KPS (> or =70 vs. <70): P = 0.05 and P = 0.0001 respectively. None of the other parameters considered reached statistical significance.
CONCLUSIONS:

Open microneurosurgery is probably still the most effective therapy in improving survival and KPS in patients with large cerebellar metastases, given that the proper surgical technique is used and that complications do not occur. Specific data on cerebellar metastases as an independent subgroup are needed from radiosurgical series.
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-16-2012 at 03:20 AM..
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Old 02-16-2012, 11:50 AM   #4
ElaineM
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Wink Re: My Mom-Brain, Lungs, Bone

I don't know anything about brain radiation. I just wanted to say I am sorry to hear about your Mom.
I wonder if some physical therapy might help her leg.
Keep strong. Stay positive. Take care.
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Old 02-24-2012, 02:02 PM   #5
Gabrielle
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Re: My Mom-Brain, Lungs, Bone

I am so sorry you and your mom are going through this. Keep the faith.
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Old 03-04-2012, 07:41 AM   #6
Mtngrl
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Re: My Mom-Brain, Lungs, Bone

I don't have experience with brain mets, but I want to join in telling you I'm so sorry for you and your family.

Cancer sucks.
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4/19/11 Diagnosed invasive ductal carcinoma; 2.3 cm tumor, 1 axillary lymph node
HER-2+++, weakly ER+ (10%)
4/29 CT scan shows suspicious lesions on liver and lungs
5/17 liver biopsy
5/24 liver MET confirmed--
Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin
7/18/11 Switch to Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 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 (mediastinal lymph nodes)/spine
5/22/12 Stopped taking Arimidex
6/5/12 CT scan
shows everything stable
6/11/12 Started Tykerb and Herceptin
8/1/12 CT scan--stable. "Osteolytic" lesion seen 5/15 now "sclerotic'" i.e., healed.
9/24 CT scan--No new mets. Everything stable. The way I read it I'm now NED.
11/19-Stable CT scan
12/13/12 CT Scan--NED

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 (but it says cancer cells are "scant").
4/30/13 Began 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 got 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. I have an inhaler for that now.
2/18/14 PET scan shows a new lesion and newly active lymph node in lung, other progression. Bye bye TDM-1.
2/28/14 Herceptin/Perjeta every 3 weeks.
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Old 03-05-2012, 07:24 AM   #7
Delaney
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Re: My Mom-Brain, Lungs, Bone

I find out tomorrow if gamma knife worked for single brain met. Really hope so. Have no symptons but am on steroid so dont know if symptons being masked. Tomorrow wil tell for sure.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 03-06-2012, 02:36 PM   #8
schoolteacher
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Re: My Mom-Brain, Lungs, Bone

Delaney,

Please let us know the results. I am hoping you get a good report.

Amelia
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Old 03-07-2012, 10:38 AM   #9
Delaney
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Re: My Mom-Brain, Lungs, Bone

Amelia, results not as good as I had hoped. A new spot showed up, small but still there and we will do gamma on that. Also skin more active than it was so new weekly chemo will be started as soon as I finish rads to my back. I have just decided to accept this and move on , hope for the best. I feel and look well. Its out of my control and some people are facing worse so onwards we go.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 04-09-2012, 06:21 AM   #10
schoolteacher
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Re: My Mom-Brain, Lungs, Bone

Delaney,

Glad to hear from you. Let us know how you are doing. You sound very positive. Are you still taking the steroids?

Amelia
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