and another change for me as well...

Shell · 06-14-2007, 08:44 AM

Well, you would think you could rely on a bone scan and x-ray. I had them to the left pubic bone area as I had pain there. Results were negative, but pain persisted, so doctor ordered MRI. Unfortunately, it shows extensive bone mets in that area, so it's time to change regimes again.

As you can tell from my signature, I am one of the more heavily prtreated women still walking!! We switched to abraxane today, and I'll stick with the tykerb as well...hopefully that will show great results.

Does anyone have any different thoughts? I have an app't with a radiation oncologist tomorrow to zap that area. I'll probably get a second opinion on treatment options, as I usually do when major changes like this occur. Any thoughts? Am probably thinking Sloan Kettering as I'm on the east coast (Phila), and have already visited Johns Hopkins.

Thanks for any thoughts...

Kind regards,

Lala · 06-14-2007, 09:47 AM

Shell

I am sorry you are dealing with new mets. I can tell you of my experience on Abraxane. I found Abraxane to be a great drug, I responded very well. I took Abraxane with Carboplatin, Herceptin and Zometa for 6 months. I would think you should also be on Zometa as well.

I think getting a 2nd opinion is always a good idea. I find it helps when you have treatment changes ahead. I wish you the Very Best.

Becky · 06-14-2007, 09:55 AM

How about Fox Chase? One of their 3 specialties is breast cancer. I could get a name for you as the Cancer Center I go to is an affiliate of Fox Chase. My onc will let me know. You just let me know.

Adriana Mangus · 06-14-2007, 07:33 PM

Dear Shell: I'm sorry to hear this about your pain and bone mets. I have had pain in that area and have been wondering what to do about it. Maybe next time I will ask onc for an MRI. Why can we just have a little break? uh??

Bev · 06-14-2007, 08:25 PM

Shell, sorry to hear your news. I would have thought the low tech scans would have picked up something.

Not that I have any experience with these places, just things that come to mind on East Coast near you. Washington Hospital Center and Georgetown University in DC, INOVA centers in Virginia and Roswell Park in Buffalo. Maybe a clinical trial @ NIH in MD.

Best of luck. Bev

Adriana Mangus · 06-18-2007, 09:16 PM

Dear Shell: I have had pain in the pubic area as well, and the pain is also on the left side. How long did you experience the pain before having the MRI?. At first when I noticed the pain it was on both sides, and now I can only feel it on the left side, it goes away when I take tylenol.

Please let me know what the onc said to your problem, I won't be seeing mine until August ? Is it possible to radiate that area? Thanks for your response.

Shell · 06-19-2007, 09:06 AM

Adriana-

I definitely would not wait until August. I tend to follow the 2 week rule for pain, but my onc asks me every time before treatment what symptoms I'm having, so we go to the tests rather quickly. I am totally non-medical, but the bone scan picks up only blastic lesions, and mine were lytic, and thus the MRI was required.

I start radiation to the area today for 10 days. I am concerned that the CTs I've been having every 2 months or so didn't pick it up, and I'm going to ask to have them re-read. I also had a pet/ct done yesterday from my "eyes to thighs" so that we can see if there are any surprises lurking.

The abraxane is fairly easy to tolerate - unfortunately I have been losing weight and am working diligently to keep the weight on - after all of those struggles to shed the 10 lbs. I always wanted to lose!!

The radiation should be very straightforward with few side effects, and while I hope yours is just a muscle-ache, I would get it checked out...

Kind regards,

vickie h · 06-19-2007, 08:27 PM

Dearest Shell, so sorry to hear about those mets. You have been on a long road... and you deserve to get better and feel better. I go to sleep tonight with prayers for you. Let me know how you do on the Abraxane. Much love and hugs to you, Vickie

jojo · 06-19-2007, 09:52 PM

Hello Shell,

If memory serves, the CT picks up 8mm or 3cm?.... Can somebody help us out here?

Shell, I am sorry for not having the answer for you -- I am embarrassed! <covering face with hands>

Thanks in advance to the person who will be able to assist us.

Good luck Shell! You are in my thoughts. :-)

Lolly · 06-20-2007, 02:45 PM

Hi Shell; Just wanted to cheer you on and add that Abraxane/Tykerb has been very good to me so far, and hope you do well on it also; radiation should do a number on the pesky pelvic mets!

<3 Lolly

Shell · 06-22-2007, 06:54 AM

Today is day 4 of 10 for the radiation, so that should be done soon- no side effects so that's nice ... I stopped the tykerb for a day or two because of the diarheea, as I kept losing weight, but I think I'll tackle that issue in other ways and resume the tykerb.

Regards,