Final study results!!!!!!!

I am sorry Matic.  I did not intend to insult you or be rude. But I did not know your background, and you were making some very specific treatment statements.  I just signed on to this posting and took your recommendations as if a Dr doing research were giving an opinion.  I don't think I was the only one to Mis-understand your background. On yesterday's post, some one else asked if you were a dr based on the specifity of your statements. 

I do appreciate your sharing your information, it is very helpful...as the users say, there is not a lot out there.  But can you understand, when you say "Our Research", some of your readers may not know it was something you and another medical student were doing on as part of you education.  "Our Research" could have meant many things.  Without knowing your background, when you make statements like, "This is what I tell my patients", someone just signing on looking for information could misunderstand. 

Again, many women look to your posts for information and reassurance. This is a wonderful thing. I would just be more comfortable if new members understood the source of where spefic recommendations were coming from.

Well wishes for your continued progress as a knowledgeable Oncologist in matters of ILC.

Grandma Wolf

I am one that appreciates the time and effort Matic takes to answer our questions, and do understand grandma's concern, too. 

Please, please keep up the research Matic.  You may be the one to find the cure some day. 

Matic,

I've certainly appreciated your effort here. I feel like I was an "old hand" at IDC, then was recently diagnosed with ILC.

Final path report from surgery came in today. (I had bilateral mastectomies with implants.)

7 mm (yes, mm) tumor, grade 1. Some mixed LCIS features. Node negative.

The previous biopsy netted 3mm of tumor, so all combined, I found this sucker at 1cm, same as my IDC 5 years ago.

What I need to find out now is whether getting back on an AI is the right thing. I'm thinking it may be. I took Femara for 4+ years.

I think it's entirely possible that this ILC was present when I was dealing with IDC in the other breast. The Femara may well have suppressed it, but after stopping the meds, it started growing again.

Is this logical? Would an AI be the right thing, or did this all start growing while I was ON the AI, and hence may be resistant?

I've got my research cut out for me before I see my oncologist next week.

I consider myself amazingly lucky to have a body that sends strong signals to me, that I actually pay attention to. I mean, there just aren't many of us who find our own ILC at Stage 1.

Anne

Please don't stop posting, Gma! You are obviously a thoughtful and intelligent woman, and I for one would miss you.

I have been reading this thread for several months and must have missed the part about the title of this study, what the indicators were for those who participated, how many participants were there and for how long? Who was the principal investigator? Was the study done according to international guidelines? Could someone fill me in?  Thanks.

I think we need to reemphasize for new members sometimes that the information we gather here on this discussion forum should not be used alone to make treatment decisions but rather a way of gathering new information and new ideas that will help us open dialog with our medical treatment and keep us on the cutting edge of treatment as we have to be our own best advocate.   I appreciate Matic's insight and look forward to reading his posts as I did Edge's.

Matic---I sent you a PM. I was diagnosed with LCIS 4 years ago; my mom had ILC with lumpectomy, radiation and tamoxifen and is coming up on 21 years of survival without a recurrence!

Dear LindaLou53,

I actually "agreed" with Matic's recommendation to my question about tx, for the same reason my noted Breast Surgeon gave.

However, you mentioned my confusion was not unique, that his identity has been questioned before I arrived on the scene.

However the misunderstanding of Matic's use of the terms "research" and "my patients" could easily be avoided if he would fill out his log on profile more specifically, as you did.  I know who you are and where you are located to the degree that would relate to this site.

I made this suggestion to him... for continued flow of good information.

thanks to you for trying to acheive that.

Grandma Wolf   AKa  Dakota

The question of Matic's credentials has come up before but as you indicated that information may not be readily available to new members of the forum.

Nosurrender and Nash,

You raise the question about Abraxane and Xeloda being typically used only for Stage IV mets.  My understanding is that these drugs are also being more commonly used in cases of locally advanced Stage III breast cancer as a means of trying to prevent mets from ever occurring.  I took Xeloda along with 6 rounds of Taxotere this time around for my new primary Lobular cancer. I also continued the Xeloda at a lower dosage throughout my 6 weeks of radiation. 

After officially completing chemo and rads, my onc has me taking infusions of Zometa every 3 months for 2 years.  Zometa is a bisphosphonate drug typically given to women who already have bone mets, but a recent clinical study completed here at Washington University in St. Louis shows less incidence of bone mets developing and improved positive outcomes for women with locally advanced stage III cancer when given IV Zometa.  The results of that study will be formally announced at the San Antonio breast conference in December this year.

Obviously, with my pathology of 23 positive nodes including extranodal extension I am at very high risk for mets.  I am more than willing to utilize a drug combo which new research indicates may be able to keep me from ever crossing that line into Stage IV. So far my 6 month scans are NED and I will hit my 2 year mark since surgery on December 5th.

So Nosurrender please do not assume you already have mets because of your oncs drug choices.  I think it means you are in good hands with someone who keeps up with the latest research. 

LindaLou

Hi Peggy,

Yes I had a Stage II Invasive Ductal BC in the right breast in 2000 when I was 47. I had a Lumpectomy, SNB with micromets to 2 nodes, AC/T chemo and 37 single field rads treatments with an axillary boost. The chemo put me instantly into menopause but I then took Tamoxifen for 1.5 years, switched to Femara for about 3 months and then stopped all hormonals in 2003 due to SE's.

My new primary BC was only found in the LEFT breast on palpation in Nov 2005 but being Lobular it had been "sneaky" and avoided detection all those years even though my docs now say it was present when I was being treated in 2000 for the Ductal BC.  Since I was 52 when the Lobular was found and had been menopausal 5 years I was started on the AI's.  I have found the Aromasin to be more tolerable.

The clinical study at Washington University in St. Louis has been going on for 3 years I believe.  Katherine Weilbacher is one of the research physicians involved in that study.  The theory is that the Zometa which is NOT a chemo but a Bisphosphonate (used also for Osteopenia or severe Osteoporosis), may be able to prevent bone mets from ocurring by blocking the receptor sites in the bone.  I am not privy to the specific details of the study, but my onc who is closely associated with Wash U and friends with Dr. Weilbacher has indicated that the study results are very promising and will be formally presented in San Antonio.  My onc made the choice to put me on the Zometa over a year ago based on that ongoing research.

On the other side of the coin, Zometa does not come without some inherent risks of its own.  Zometa has been directly associated over the last few years with OsteoNecrosis of the Jaw (ONJ) which is a rare but very serious side effect being found in heavy use of the Bisphosphonates.  Medical research has not yet been able to define the safest frequency of administration that gives the cancer protection benefit and also avoids serious SE's.  It used to be given on a monthly basis for years in women with Stage IV bone mets and it is still is in many cases.  Recent treatment protocol however is showing the same benefit may be found giving Zometa at less frequent intervals and for limited total time spans.

Patients planning to take Zometa must get all necessary dental work done first and then practice good oral care throughout treatment and beyond. Any invasive dental surgery or oral bone surgery should be avoided if possible while taking Zometa.  I think over time and with more research they will be better able to define the most beneficial length and frequency of treatment with this drug.

Best Wishes,

LindaLou

Hello All,



I just wanted to give a word of support to LindaLou's post about IV Zometa and new studies on it's benefit in hopefully preventing bone metastasis, and stablizing them should they occur.



We have a thread under hormones where we've been discussing this, and I have posted a recent Italian groups work, which reviewed the modality bisphosphonates work, the animal studies supporting it's use in multiple methodologies, clinical trial results for bone metastasis stabilization as well as new studies in process on adjuvant use. So take a scroll up should you wish (have to finish one post which got cut off).



I'm happy to hear LindaLou's report of new findings coming out near her. It's very encouraging, especially that general feel that quarterly, half-yearly, or possibly annually IV Zometa may suffice in the mission to prevent bone met, given the drawbacks of the drug. But it is largely Zometa that keeps getting mentioned, and I think this is important to share. Something about it stands out.



Lastly, many oncologists are also beginning to utilize bone turnover markers while monitoring for bone loss. Strange in a way, yes? that they might be able to give the drug in response to quarterly monitoring or so of bone turnover markers which suggest a loss of bone? I haven't posted on the bisphosphonate thread on this, but it would be good to provide this information. I also started a do you know your markers thread, and perhaps should add a bone marker link there.



Anyways, a tip of the hat to you ladies and men here for all the great experience and knowledge sharing. It's so appreciated by everyone with breast cancer.



All the best,

Tender

Peggy,



Here you go. It's under our hormone link, thread entitled:



Conversation: Food for thought Bisphosphonates in Osteopenia at

http://community.breastcancer.org/topic/79/conversation/694138?page=1#idx_22





So here are some more conclusions, this time addressing your question "so do bp's prevent bone mets?":



From "New developments of aminobisphosphonates: the double face of Janus" by Dr. D. Santini, et al, Rome Italy: Annals of Oncology 18 (Supplement 6): vi164–vi167, 2007





I'll try to complete the post soon, as I got too tired and computer malfunctioned twice.



Tender