new here suggestions welcome

jenny66 · 08-01-2010, 10:19 AM

this is my first time posting here. a friend told me to find this site, and hopefully, some input on current treatment. i am her2+++, er/pr+, stg.4, with bone mets to spine, and pelvis. currently on zometa, herceptin, femara, and have NOT had traditional chemo, mx, or bone bx of any of the lesions. wondering if anyone else is in this situation? treatment for 4 mos. and so far it is working. wondering if i should have mx, and traditional chemo, and/or bx of bone lesions. anyone else in a similar situation?

ElaineM · 08-01-2010, 10:46 AM

Welcome aboard !!
I am sorry to hear about your situation. However, I think it might be a good idea to try to add a chemo and/or change the Femara to another drug that blocks estrogen that might work better for you. You can find information on various kinds of chemotherapies on our front page at htt://www.her2support.org. Most chemotherapies that are used for breast cancer can be combined with Herceptin and/or another drug called Tykerb which is for her2 breast cancer. There are also other choices besides Zometa for bone mets. You can discuss that with your oncologist and/or a radiologist.
Be sure to get enough calcium, vitamin D and magnesium for your bones too. There have been several postings and discussions about vitamin D in our nutrition forum.
Take good care of yourself and good luck with your treatment.

08-01-2010, 11:44 AM

Hi sorry you've had to post here but it's good to get the support. I can't really make any suggestions, just wondering if you are being treated at a specialist hospital? Also what does mx and bone mx mean??.....sorry if it's a stupid question :-(

Elaine.....I am wondering why you would suggest changing from Femara when Jenny says it is working, would it not be best to stick with what's working and change later if needed?

Hope you get some answers

Jackie07 · 08-01-2010, 05:35 PM

Jenny,

From what I've been reading on the Board so far, an effective treatment ('so far it is working') usually is not replaced until it quits working (scan showing progression).

If you use the 'Search' button and look up the 'long-time' or 'long-term' survivor threads, you'll find (from the signatures - treatment history) members who have successfully treated their bone mets and/or have been in good maintenance.

To input your treatment history, click on the 'User CP' button and input it in the 'Signature'. It will automatically appear everytime you post a new message.

Your doctor may be using the 'cutting edge' method since you are newly diagnosed. Read the updated information on the Home page and the additional links it provides. You may find some good information there (such as 'clinical trials', 'National Health Institute database - PubMed'...etc)

Welcome to the Board and please keep us posted and let us know how you are doing/feeling/... etc.

Joan M · 08-02-2010, 04:21 PM

Jenny,

Sorry to hear you're facing this awful disease like many of us here. But you've come to the right place for support and information.

There's controversy over whether when diagnosed at stage 4 a mastectomy should be performed. It seems that's what you mean by not having had a "mx" (a mastectomy).

I was diagnosed at stage 2b and had a mastectomy before the bc became stage 4. But if i had been diagnosed at stage 4 I would have wanted the tumor removed from my breast, either via a lumpectomy or mastectomy, depending on the surgeon's recommendation. While reconstruction is important, I think more important is to remove the tumor.

Perhaps other women on the board can give you some input on whether to have a mastectomy, as well as any other thoughts they might have. As Jackie mentioned, it's good to input your diagnosis as part of your signature. She also provided other tips for what's available on this website.

Joan

Chelee · 08-03-2010, 02:39 AM

Jenny, Sorry you have to deal with so much...I know it's not easy. I was dx stage IIIA back in 2005...but much later found out I really was stage IV from the get go. I had a 3.5 cm tumor so had a mastectomy and SNB. I also did chemo (TCH). Then after a yr had a prophylactic mastectomy on the other side because of the stress of waiting on results of my mammo's. I thought just remove it and its one less thing to worry about. (But everyone has to make their own personal decisions as you know.) I also decided to have and ooph...ovaries removed to help reduce the estrogen that feeds the cancer.

You will find some onc's are against mastectomies when stage IV...I personally do not agree with that. If it was me...I would have a mastectomy as I believe it lowers the tumor load in the body and that's always good. In your case I might even do 6 cycles of TCH and kick your cancers butt. I got 3 1/2 yrs of NED (No evidence of disease) after doing that...and again..I was stage IV at that time. Also I believe it would be good to have a bone biopsy to see if you have any any changes since orignal dx? I had my femur biospied and there were changes. Someone here recently posted some good articles on mastectomies on stage IV's. These studies showed benefits for removing the tumors. Maybe I can find those links for you.

Since your current trt is working this will give you more time to research and get some more feedback so you can decide what direction you want to go in. Just remember...always be pro-active. Push for what you want. Your off to a great start because your here asking great questions. I'm sure more will chime in here.

Chelee

08-03-2010, 05:08 PM

Hi Chelee, hope you don't mind me asking but how do you know you were stage 4 from the start? Good luck with any new treatment plans

Chelee · 08-03-2010, 05:58 PM

Unregistered, I had a baseline PET/CT when first dx with bc the showed activity on both femurs. It was highly recommended by two cancer centers that I have MRI's to rule out mets to femur. But my cancer center talked me out of it telling me it could be caused by a number of things. (Prior to this I had been seeing a neurologist for brusitis in hips.) My onc was against anymore scans at that time so I requested a bone biopsy. Again I was talked out of that. Onc said a biopsy to hip was so painful and in my case not necessary. I was newly dx and scared and just wanted to get trt going so I let it go.

It wasn't until 3.5 yrs later those same places that lit up on baseline showed a big mass on right femur that no doubt had been there on baseline scan. So I was stage IV...which would of changed things with my treatment plan. For one I would of remained on Herceptin and might still be NED...but I'll never know now.

Chelee

jenny66 · 08-06-2010, 06:02 AM

thank you everyone for sharing. i am honestly not sure if the tx i'm on is the best thing, but it is working so far. i will keep checking for any suggestions. how do i find the areas regarding standard tx? thank you!

Joan M · 08-06-2010, 04:49 PM

Jenny,

The National Cancer Comprehensive Network has standards. Here's the link:

http://www.nccn.org/professionals/ph...lines.asp#site

Click "breast cancer." But, you'll have to log in first.

Joan

fauxgypsy · 08-10-2010, 03:13 AM

I am sorry that you are having to go through this. But you have found a great source of information and support. I was originally diagnosed as stage four but they are not sure at this point what stage I was. I ended up having a mastectomy. I know many of the women on this board have had reconstruction but I have not made my mind up about that yet for me. the main thing is to find an oncologist, in my opinion, that will spend the time to discuss options with you and be willing to answer questions. For example, why did you not receive traditional chemotherapy, etc.? Hope it goes great for you!