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Old 05-08-2014, 07:20 AM   #1
Join Date: May 2014
Posts: 16
The cancer roller coaster

And it is not a fun one. My wife was diagnosed with HER2 BC August 12. She had a great response to herceptin and chemo, then had bad headaches in August 13. She had 10+ brain mets but cancer free neck down. She had wbrt and had an excellent response. But, nine months later the mri shows growth of 8+ remaining tumors, so now they will try the gamma knife. She is on Tykerb also but it did not seem to have an effect. She is still working and feels ok other than a lack of appetite.

How do we keep our spirits up at the continued bad news? It seems that we get good news now and we wait with baited breath for the next blow.
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Old 05-08-2014, 08:08 AM   #2
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,148
Re: The cancer roller coaster

The oral chemos, Xeloda and Temodor, cross the blood brain barrier (as does Tykerb). Were these suggested? Is she still taking Herceptin to keep the body clear?
Kind regards


Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 15 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-09-2014, 07:18 AM   #3
Join Date: May 2014
Posts: 16
Re: The cancer roller coaster

She is still taking Herceptin every three weeks. She had significant pan colitis and the Oncologist thought that Tykerb was the least disruptive to her stomach. The Radiation Oncologist and Neurosurgeon both think that these tumors in the locations they are will not respond well to chemo based on their experience.
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Old 05-10-2014, 02:57 PM   #4
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,802
Re: The cancer roller coaster

Gamma-knife is quite effective in controlling brain mets with the least side effect. Though she will probably be feeling 'tired' after the treatment as I imagine they are going to do the 'zapping' 8 times. I'd had the GKRS 13 years ago for a rare type of brain tumor (now reclassified as Grade II) They did 3 'shots' because there were 3 tumors.

Several long-time members are brain mets survivors. Exercise will help improve the neurological function. I was feeling 'smarter' each day during my rehab ( physical therapy, occupational therapy, speech therapy) after a 23-hour brain surgery in 1990. The GKRS was done in 2001 and was listed as one of the factors of my cognitive decline. (I've had pretty severe memory problems in the short-term memory region.)

Sending you both good vibes.

Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.


Advocacy is a passion .. not a pastime - Joe
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Old 08-18-2014, 10:45 AM   #5
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Join Date: Aug 2014
Posts: 2
Re: The cancer roller coaster

How is your wife doing now? I just joined, been reading, mom had cancer, and found an herb that crosses into the brain cancer cells, but a little too late for mom. She had no cancer from her neck down, started with breast, then lungs, then liver, she chose to take alternative with chemo. Also, what didn't help at all, was the stress she was under, but not to cancer.... I also found L-theanine for stress, does not make you drowsy. I take it myself now. I take most of the herbs she took, as a preventive measure.
her website shows alternatives she took
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Old 08-18-2014, 12:13 PM   #6
Join Date: May 2014
Posts: 16
Re: The cancer roller coaster

She is doing better. She had an 8 hour course of gamma knife treatment for 12+ tumors, and responded well to it with no side effects. The oncologist took her off of Tykerb because it had no affect.
We have had a great summer.
The Oncologist also gave her information on a clinical trial and that seems to be the next steps.
We rescan in a few weeks. So, we wait, hope, pray and try to enjoy things in the present.
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Old 08-18-2014, 02:28 PM   #7
Junior Member
Join Date: Aug 2014
Posts: 2
Re: The cancer roller coaster

That is good to hear...if you didn't visit our webpage, Tumeric Indian spice is the herb I found late for mom, but it does get to the brain cancer cells, and any cells in the body. You might want to give it to her to prevent any recurrance, I wish I had found it earlier for mom. OK, keep up the good work, God bless.
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