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Old 10-19-2010, 11:45 AM   #1
hezzy_9805
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too much research...im lost please help?

I'm not too new to this site, but couldn't find my old account information (hezzy)

Well about three months ago I asked for an MRI and saw the brain mets have shaped different size
Aug09- 4cm,1mm,1mm
I recieved 17 rads days and 3 SRS days. Being on steriods, herceptin,zometa,faslodox, and having many other issues I was in a nursing home for awhile. After recovering I started Tykerb, Herceptin, Zometa, Faslodox.
Months ago my last MRI showed
3cm,9mm,3mm
My ONC wasn't sure if it was from swelling due to the radiation treatment or, mass growing. Next Friday I am having another MRI and I should get results.

After talking everything over she mentioned switching my drug over to Xeloda, Herceptin. I asked her if I could take Xeloda,Tykerb and Herceptin and she said we'd discuss more after the MRI results. I've been doing research for days and hours and I'm lost and scared!
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Old 10-19-2010, 01:07 PM   #2
dchips1
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Re: too much research...im lost please help?

I started on tykerb in combo with my herceptin, My onc did not reccomend xeloda for me because neck down I have no mets. I do know that tykerb and xeloda are synergistic (they work together). But xeloda is a chemo drug and herceptin and tykerb are more of what they call biologicals (they tend not to weaken your immune system/blood counts etc) Tykerb with xeloda is what was originally approved together, but combo can be really hard on digestive system.

I am able to tolerate tykerb with just a couple days of the week, doing the bathroom Boggie!

Maybe Lani or some of the others will chime in, or you can even do a search on the site for this combo.

Good luck to you and keep hanging in there!!!!
Prayers and hugs coming your way


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dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





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Old 10-19-2010, 02:03 PM   #3
Nancy L
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Re: too much research...im lost please help?

Your onc feels a need for a new MRI to make sure you are on the best protocol. I do know that the Herceptin molecule is too large to cross the blood-brain barrier, which protects the brain from most things in the bloodstream. However, preliminary evidence suggests that Tykerb can cross the blood-brain barrier and enter the brain. So you may very well have to go back on Tykerb. It takes a while to get used to Tykerb but the side effects can be managed. There are several posts on this site to help you with that if they happen to you.

I hope everything turns out OK for you. I know you are scared and I wish I could say something to take thr fear away. But having been in that place myself, I know that there is nothing that anyone can say. The best thing to do is get those MRI results as quickly as possible. The unknown is scarier than the known.
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Old 10-19-2010, 02:25 PM   #4
hezzy_9805
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Re: too much research...im lost please help?

Actually I balance Tykerb great! When taking five pills I take diphen/atrop (control bathroom frequency) the first five min. that I'm awake than the first five minutes after taking tykerb and have no longer had frequent bathroom visits or tummy pain
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Old 11-03-2010, 11:25 PM   #5
Jackie07
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Re: too much research...im lost please help?

hezzy 9805,

How was the MRI result?
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