ILC LADIES!

matic22 · July 2009

Hello ladies and survivors of ILC!

I am just sending you KIND AND GREAT HOT REGARDS FROM VERY HOT SLOVENIA, I have just come to see how you are doing.I am going to the seaside tonight, on Croatia coast, so I will not read this thread until 9th of August!

When I come back home, I will get in touch-I really hope you are doing fine and am proud of all of you.

P.S.:My patients with ovarian and breast cancers were very sad because of my absence in these days;:)

BUT I NEED A BREAK!

HUGS TO YOU:)

MATIC

lizws · July 2009

Matic, have a wonderful and restful time! Good to see you.

Gitane · July 2009

Hi Matic, It's so good to hear from you. I'm always happy to see a post with your name on it. I love the summer sun, but it's been pretty warm here, too. A vacation on the coast sounds like just the thing to do. Of course your patients will miss you! I'm glad to hear your practice is going strong and you enjoy your work. Hope your mother is doing well, also. Please come back and let us know what's happening in your life. You are special to all of us ILC girls, you know.

amlg1 · August 2009

Hello Matic,I am somewhat new to the boards,and have been reading your posts,your work is amazing,and reading your posts,I do feel more positive.I had many nodes involved,and am being treated very aggressive.I can't wait to see you on the boards more.Hope you enjoyed your vacation.

sandogger · August 2009

Hello,

I saw your post and noticed that your cancer is Stage 3C, as is mine. What is your treatment plan? I had 12/34 positive nodes and my surgery was in April, 2009.

Good Luck!

Anonymous · August 2009

Hi Matic! I think about you all the time! You are doing well! I am doing well... I just want ALL OF US to do well. How is Mum? Much love to you...

amlg1 · August 2009

sandogger..I am a/c every 2 weeks,neulasta shot the next day.Doing that 4 x.Monday is my last of that.Then in 2 weeks starting Taxol and herceptin every 2 weeks but herceptin every week while getting taxol.Then every 3 weeks for the rest of the year. You can PM if you have any questions.

LindaLou53 · August 2009

Hi Matic!

Hope you have a wonderful holiday and check in with us when you get back!

Sandogger and Amig1:

You both may want to have a discussion with your oncs about the possibility of adding IV Zometa to your treatment regimen. With recent studies showing it may have impact on the reduction of recurrences and possibly preventing mets to the bones, it is being more readily adopted for women with locally advanced BC. I believe there have been recent indications that its effectiveness may be enhanced when used in conjunction with chemo also, but I will need to double check the literature to be sure on that. It certainly can be used following completion of chemo also.

If you do a search on IV ZOMETA on all the forums here you will find lots of previous posts with more information.

amlg1 · August 2009

thank You for the info..

matic22 · August 2009

Hello dear survivors!

I am back from holiday and still have some vacation-free time-hope I havent massed these words up;=)

Today you can look at the online report of antiHER-2 breast cancer therapy. Our oncologist prof.dr.Tanja Cufer is having a presentation of that and I can give you a link.It is free ,you just have to register it if you wanna see at that!

Otherwise I am well, healthy, my Mum is also well, oh, I have forgotten, about Zometa, I still have not decided whether to give it to her or not, I believe I am going to wait until next study report, I do not want to miss something. I am rather cautios-you know;=)

Of course we are countinuing with hormonal therapy, because in this August she would have stopped it -that was a plan 5,5 years ago-but now therapy is different and I also believe for hormone receptor positive lobular carcinoma patients need to be on antihormonal at least for 10 years!

I hope you are all doing well, I will keep posting on threads and if you have some question, just feel free to PM me!

BYE BYE WITH BLESS AND KIND REGARDS!;)

Matic

matic22 · August 2009

Oh, I have forgotten to give you an online address for this afternoon presentation of prof.dr.Čufer Tanja!

here it is: www.e-eso.net/home.do

Anonymous · August 2009

Hi Matic! Good to "hear" from you...thanks for the update...love ya! Hugs to your mum!

Gitane · August 2009

Welcome back, Matic. Also, thank you for the comment about continuing the hormonal therapy. This very question came up on the boards in the last day or two under the endocrine/hormonal therapy forum. Women who have been on Arimidex 5 years were asking about continuing. I'll let them know about your comment on this thread. Thanks.

NancyNY · August 2009

Thanks Gitane for letting me know about Matic's post. Matic, it is so kind of you to post here for us, and I'm glad your mother is doing well. We are having a discussion on the other forum about whether or not to stop arimidex after 5 years. I too had lobular cancer, 2.3 cm. node negative. My 5 years are up in December. When I asked my oncologist about staying on longer, she said the choice is mine, but she can't recommend it. She did say, that her gut feeling is longer would be better, but, we don't know that for sure yet, and it might be worse, (like tamoxifen). why did you say your mom should stay on hormonals for 10 years? I, and alot of other women are very interested in what your opinion is. Thanks for everything..... Nancy

hrf · August 2009

Hi Matic, I'm new to this thread and this is the first time I have met you. I just started Arimidex a few days ago. Your post is the first I've heard that it might be recommended beyond 5 years. My oncologist is also being cautious about the Zometa ... said there are more studies coming and she's also worried about the potential for jaw osteonecrosis and kidney damage. Do you have any information about that? Thanks ... Helen

LindaLou53 · August 2009

My onc has told me I will be on some type of Aromatase inhibitor indefinitely. I have been on Aromasin for 3.5 years now and will continue to stay on it as long as its working. Due to the locally advanced nature of my ILC and it being strongly ER positive (94%+), she feels the hormonal treatments are extremely important to continue until further research provides other options. Also with the typically slower growth pattern of ILC, she feels a 10 year NED status is much more significant for indicating potential cure than a 5 year anniversary.

Regarding the Zometa, the research data continues to be very favorable for significant reduction in recurrence and the risk of ONJ is still very low, especially with the new treatment regimens of every 3-6 month dosage intervals versus monthly infusions. I just completed 3 full years of IV Zometa and will be going to annual infusions pending new research data over the next year. I am very thankful that my oncologist had the foresight and confidence to start me on Zometa long before it was widely accepted as a potential preventative to recurrence.

matic22 · August 2009

Hi NancyNY!

Endocrine responsive breast cancer is a slowly progressive ,chronic disease with most of the relapses ocurring 5 years after diagnosis.Therefore it is not surprising that extended adjuvant therapy with AI after 5 years of tamoxifen resulted in improved DFS rates in postmenopausal women.It is true that the first results coming from a relatively small NSABP-B14 ,SCOTTISH AND ECOG trials FAILED TO CONFIRM a significant benefit from continuing tamoxifen therapy bexond 5 years, there are new emerging data coming from two large randomized trials, with more than 18000 patients included, showing that pursuing tamoxifen bexond 5 years might be beneficial as well. It is expected that longer follow-up of patients included into these two studies will give us the final answer on the value of the extended tamoxifen therapy.

There are many studies going on with AIs ,for example DATA, NSABP B 42, SALSA, SOLE, MA 17R, and there are some results already visible and for postmenopausal women tje optimal duration of endocrine therapy would be around 9 years or even longer-at least for high risk patients.High risk patients are node positive patients-more than 4 nodes, or high oncotype patients.It is now widely recommended the switching theory-tamoxifen for 2/3 years and then AI for at least 5 years(so here is the difference-not AI 10 years, but all drugs together until up to 10 years!!!!)-I would not recommend AI TO TAKE 10 years, because we still do not know all SES of them-we have to be cautious!

We still do not have all these answers!!!

Another unsolved question is whether endocrine therapy should be administered continuosly-On the basis of experimental data on emergence of hormone -resistant clones and in analogy with other hormone-dependent cancers such as prostatic carcinoma, some authors think that superior or at least equal activity with less toxicity and costs could be achieved with intermittent edocrine therapy. Ideally the sequencing between tine and off treatment would not follow a prescribed schedule but should rather be based on a biomarker-predicting disease resistance, hopefully making hormone receptor positive breast cancer a chronic, but seldom lethal disease.

I hope I have helped with these answers;),

Kind regards from Slovenia.It is still hot;)

Matic

matic22 · August 2009

I also have read LINDALOU"s post and she has answered very correctly and precisely.ILC if hormone receptor positive is a very slowly growing and sneaky tumour and 10 years NED is much more reliable marker than 5 years-.most relapses of ILC are between 5 and 10 years after diagnosis, I would say from my practical medical job, not from books;)But there are many patients that have quite early local recurrences of ILC, and those usually relapse sistemically within the first 5 years.

hI HRF:)

I would agree with LIndaLou about Zometa also.

Itis also true that osteonecrosis of the jaw is quite rare clinical manifestation, BUT if it ocurrs to you, it is 100% for you-I hope you understand what i MEAN.-In medicine xou have to be really careful what you are doing-that is the reason why i AM still waiting for more studied-but I also believe that many metastatic women today still live because of contiunous infusion of Zometa, that in the past was not known to have antitumour activity.-I think there is future in Zometa regarding antitumour potencial-.

So, I do not know.-If I had cancer, I would have taken it-.

I am not so worried about kidney disfunction-if you have healthy kidneys, there is no panic!

I hope I have helped you.

MATIC

hrf · August 2009

Thank you, Matic. I appreciate your response.

gracejon · August 2009

I am coming up on my 5 years of aromatase inhibitor and was told by oncologist that no way would anything be prescribed after the 5 years. Would it be suggested to go to tamoxifen? I think that from what I understand that would be a no. My tumor was weakly ER + at 19% and PR neg. Think this is a bit unusual for ILC. Can I feel comfortable with nothing? I kind of feel like when chemo was done. There is now nothing left between me and cancer. I'm sure I will become acclimated to nothing but am a bit intimidated as I think about it. Thanks for your help matic. Love to your mum!

ILC LADIES!

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