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Old 11-17-2014, 10:40 AM   #1
catalina
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Psuedeo-progression in Brain Mets

My wife has her2+ BC and was diagnosed last year with brain mets. She had whole brain, then gamma knife in May when they started progressing. Now she has edema again causing her to be dizzy, fatigued and nasueous.
They put her back on Decradon and she had almost immediate improvement.
We are meeting with the Doctors in a few days. She hates decadron and wants to get off it as soon as possible.
So, is this raditioan necrosis, psudeo-progression, or progression? The MRI report says it is either psuedo -progression or progression. All the literature on psuedo relates to different brain tumor. Are there any resources to explain this?
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Old 11-17-2014, 02:06 PM   #2
JennyB
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Re: Psuedeo-progression in Brain Mets

I wish I knew some answers for you! I am hoping you get some good answers from the Docs and your wife some relief.

Jenny
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 11-17-2014, 04:14 PM   #3
KirisMum
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Re: Psuedeo-progression in Brain Mets

My daughter had a similar occurrence. She had WBR for multiple brain mets last November, her mets shrank back to almost nothing, then started growing again. In June she was put on ARRY-380 in a clinical trial. She had a great summer with stable mets and no side effects. Then in September she was taken off ARRY-380 because of a slight progression, and planned to spend 2 weeks in a washout period before starting a new trial with neratinib and Xeloda. She was fine for a week and then suffered sudden headaches, nausea and vision problems. An MRI revealed the tumors had all doubled in size in a matter of 10 days. EEEEK. She was put on decadron right away and felt much better within a day or two. The assessment then was that the increase in size was due to edema, not progression, and a rare side effect of discontinuing the ARRY. They started her on Xeloda and Tykerb right away, not wanting to risk waiting for the trial. She's been on decadron since and is asymptomatic, though they're weaning her off it now--she hates it as well. She has scans next week. My understanding is that the decadron shrinks the edema, but not tumors, so it sounds like that's what's causing your wife's symptoms if the decadron is improving them. I really don't know, but will keep you in my prayers and hope for a good outcome. Keep us posted.
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Old 11-18-2014, 07:38 AM   #4
catalina
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Re: Psuedeo-progression in Brain Mets

We found out late yesterday that her condition was caused by tumor progression. There are no more radiological options. Where can we find the ARRY- 380 clinical trial info?
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Old 11-18-2014, 07:42 AM   #5
KirisMum
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Re: Psuedeo-progression in Brain Mets

I'm sorry to hear this news. But you still have options. Here's the link to the trials: http://clinicaltrials.gov/show/NCT01921335

Has she been on xeloda and tykerb yet?

There is also an ongoing trial of neratinib and xeloda. I'll find that link and post it too.
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Old 11-18-2014, 07:45 AM   #6
KirisMum
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Re: Psuedeo-progression in Brain Mets

Neratinib & xeloda trial: http://clinicaltrials.gov/show/NCT01494662
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Old 11-18-2014, 08:06 AM   #7
catalina
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Re: Psuedeo-progression in Brain Mets

Thanks! I found it at Dana- Farber. We have tried Tykerb with no luck.
I sent the Dr and email and she quickly replied. They are sending the exclusion checklist to her Drs.
I can't tell you how much this helps. Even if this does not work out, at least it is something. Thank you!
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Old 11-18-2014, 08:36 AM   #8
'lizbeth
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Re: Psuedeo-progression in Brain Mets

KirisMum, you are such a blessing to be able to help. Catalina, I hope you quickly find the right treatment.
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Old 11-18-2014, 03:34 PM   #9
KirisMum
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Re: Psuedeo-progression in Brain Mets

I think both trials are at Dana. Nancy Lin is in charge of them. I wish you the best of luck. It's a phenomenal institution! XOXOX
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