Hormonal Treatment for Stage IV
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I don't know what stage I am in now. Guess I don't even want know! Had recent rt. mastectomy in 2010-with chemo taxotere and cytoxan. Also had lt. mastectomy in 2004, chemo/rads. Just finished my chemo in dec. and low and behold found a lump above clavicle. Just had biospy last week _POSITIVE!!!!!!!! SHIT, SHIT AND MORE SHIT! Having pet scan on Mon.day. I AM TOTALLY FREAKING OUT
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Dreamwriter... I had my ovaries radiated in 1984 after a full masec...still here but a few reacur on chemo first line now navelbine and avastin fingers crossed hope you are doing ok
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Hi Sharilou
I hope the results today give you some comfort...do come back and let us know...having it twice is enough - I pray that you will get results that it is no place else and you can get on a treatment for the lump!
We are here is you need us...
LowRider
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Anybody been on Fasoldex a while ago (when it was only 1 shot) on now on it again with 2 shots? I was on it 3 years ago and worked for a couple of months and that was that. Just off Halaven which worked pretty well for 5 months. Just wondering if anyone has gone on it a 2nd time with good results.
Annie
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I sat next to a woman today who is getting the double dose faslodex.....she used to get one dose, but since the lst of the year has been doing the double. So far she says it is working, but she has some urinary tract infection problems and thinks there is a correlation there, but of course onco will not confirm this.
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Maybe I need to consider the double Faslodex shots if onc recommends it. I did not like the SE but my twins are still 11 and have many years to go. Has anyone been on faslodex and then go back to aromsin? I skip that hormone so was wondering if I can go back to ones I have skipped.
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I have a question. I was started out on Femara and Zometa as first line of treatment for Stage IV with bone and lung mets. Doctor said this is normal protocol. I am worried that we are not hitting it hard enough and questioning if primary tumor should be removed. Have any of you had mx if dx from get go was Stage IV? My onc said they only remove if causing problems like infection.
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Cathy,
I've been on the same treatment as you for over 2 years. Mine was a recurrence after a lumpectomy and rads 14 years ago. It recurred without cancer in the breast; but in the lung pleura and sternum. I think I've heard that sometimes they remove the tumor, sometimes they don't. Or they wait a while before any surgery to see if the tumor responds to treatment. I'm sure someone will respond that has more information than I do. Femara started working for me within about 2 months. I've been NED for almost 2 years. It's still very early for you. Your onc chose the same treatment as mine, which is normal if you are ER+. I hope this treatment works for you as well. They probably want to give it a little time, which, I know, is frustrating.
I wish you only the best!
Lane
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Hi cathy, i just copied my answer from another thread:
Yes i was diagnosed with mets (liver, T10,T12) from the get go.extremely hormone receptive and normal tumor markers and liver enzymes, and if you hadn't told me (since i went for my mammo every year - grrr) I would have never known, I had an ooph and went on femara and zometa.
3 months later a litlle regression all around and stable bloodwork. I had a little retrospective study that showed a slight improvemnt in longevity if women had the primary tumor removed, i spoke to my onc - she and the BS presented me to the "tumor board" who agreed that i could have a mastectomy and reconstruction, since i am stable and feeling well.
Had the mast with tissue expander in dec, and got the implant and lift in march (the PS wanted me to go bigger, but i just wanted to stop thinking about breast and have plans for the summer - can't SCUBA with a tissue expander) so i kept my b almost c cupps and i am very happy. I am of the school of thought "why let the primary tumor remain there to continue to "seed". But i do understand the other school of thought.
If she is stable and feeling strong and wants it done, get a 2nd opinion and google - primary tumor removal with metatasis - for a little ammunition. i just find that when you come into the docs armed with a little info they listen well and really consider what you think is best.
Good luck to your friend and to you
p.s. my most recents scans showed a little more regression
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Thank you Lane and Gigi for your help! I will probably have scans first part of June and am hoping for good results! Wishing you both continued regression and NED!
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Damn! This month's numbers are back.... one year to the day and they are going up. I will have another blood draw in early June, just before my next meeting with Dr. Roger. In the past, these darn markers have been eerily accurate for me.
Crapola!
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Oh, Susan,
I'm sorry. I'm hoping that something else is affecting the numbers. I know mine have also been a pretty accurate indicator, although they have gone up then back down over time. The waiting sucks. Sending wishes for good news on your next visit. It's one hurdle after another along this bumpy road, that's for sure.
I'll second the Crapola! Whatever happens, we're here.
Lane
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Cathy2 - I had a bilateral mastectomy (my choice), but I did not be the final diagnosis until after my surgery. They thought just one breast was involved, but both were and so I had made a good choice. They knew of the mets to the bone, liver, and lung before the surgery and so that had already made me Stage IV, I was started on Femara before the surgery and Aredia afterwards. I have not heard of not doing the surgery with Stage IV, but every cancer is different because every person is different. I would get a 2nd opinion if I were you.
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Thanks Lane. I am a bit discouraged, but will wait for next month's numbers before wallowing. But I can't help but be a bit sad.
*susan*
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Amyjo,
Nice avatar. You look great, and so upbeat and relaxed. Hope that's how you're feeling!
Susan, It does get sad and discouraging. Keeping busy does help, but, dang, the dragging yourself out of the chair can be the hardest step. And, sometimes, just lying there in the sun and saying, the hell with it today, is just fine, too. That's what I'm going to do today. Finally, it's supposed to be in the 70's here. My daughter said she'd email me a recipe for a Limoncello cocktail.....Limoncello, cranberry juice, and fresh mint. Just the ticket today, in my mind!
Hang in there, everyone, and enjoy Mother's Day weekend. We beautiful gals deserve it!
Lane
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Thanks, Lane. That is what a visit with DesignerMom will do for you! I got to meet her this week and we had a very good visit and fun time together in NYC.
Susan - try not to worry too much, my numbers went up for a couple of months after having gone down from over 6,000 to 115 over the course of 6 months, but now they are going down again and are doown to 39.2 for the CA27/29 and the CTMs are down to 13!
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I was also diagnosed with stage IV from the get go and placed on femara and zometa without surgery initially. For a year and a half I was stable and able to go on with my life without any major interruptions. After a year and a half my breast tumor started to grow (initially it shrunk on the femara) so we decided to have the bilateral masectomy at that time. The thought was that we had to get everything else quiet before doing the surgery because if things start to grow quickly elsewhere after surgery you can't really treat until some weeks after surgery, so your body can recover. That being said the surgery went well but they changed me to falsodex (right after the surgery) which unfortunately did not work well for me and I went from being stable right before the surgery to having wide spread mets. I was taken off the hormones and put on xeloda. I am going back to the oncologist on Tuesday for test results and keeping my fingers crossed for lower numbers. I have had escalating numbers now for 7 months and need some good news.
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momofbraj - my background is very similar to yours. I have been on Femera and Zometa for almost 2 years and just switched to Xgeva. I did have lumpectomy when initially diagnosed but now a biopsy confirmed cancer is back in the original site but NED everywhere else. I am looking into a mastectomy but hearing your story I am pretty scared about perhaps disturbing the mets in my bones! There is data showing mastectomy helps in overall survival for stage IV but it still not an easy decision. Where were your mets before surgery? My onc is also talking about Faslodex and may be Aromosin....was that offered to you?
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Happy mother's day to all of you!
I am on double dose Faslodex. This is my last hormonal and I am so hoping it works. I had 2 injections so far and the third one is scheduled for May,19. I have been having some pain in my left ankle for the last three days and a couple of minutes ago when looking for Faslodex side effects I noticed this same ankle is swolen. I did not see this is a common side effect of this drug but wanted also to check with you. Did any of you had such experiance?
Thanks,
Pakize
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I had two injections (first dose) of Faslodex two weeks ago. Going for second one this Wed. Also going for second opinion tomorrow (Ann Arbor). What is suppose to be so good about this Fasoldex, or not so good. I can't take this crap. I am hoping Ann Arbor is on the same page as my current oncologist (that I have been going to since 2005). This totally sucks!!!! BC-twice-each breast, now above clavicle-SHIT!!!!
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I had some bone mets when I was first diagnosed but prior to my masectomy the femara and zometa had put them into remission. It wasn't until after surgery that they switched me onto the falsodex when things got out of control. Supposedly it can take falsodex 4 to 6 months to "kick in' so even though my numbers kept climbing each month while on the drug I was encouraged to stick with it as its effect sometimes doesn't show up in the first months. By the 5th month when my numbers had really escalated I was sent for a PET scan which showed that the bone mets were back in multiples and I now had liver mets (unfortunately I was pretty asymptomatic so I didn't realize the cancer was spreading like it was). I am now on xeloda and had my first scans done last week so hoping that they show some improvement. I was in a really good place when I went in for my surgery. I felt it was a good thing to take out the factory since it had been shut down from the initial treatment but it appeared to be gearing up to start production again. Unfortunately we put our faith in falsodex (which has been very helpful for a number of people) but it just wasn't the drug for me.
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Mom..... my sis was also diagnosed ILC stage IV (in 2006) and has never had surgery. I don't quite get it, but it is a fact. She has breast cancer but no "tumors" detected in the breast. I have read that ILC cells behave a little differently than other breast cancer cells in the way they group together in sheets rather than lumps and that explains why it is often not found in a mammogram. I hope the Xeloda works well for you!
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Thanks for your response momofbraj. I hope xeloda works for many many years. My oncologist has a patient who has been on it for 7 years and still stable! I think I am going for a double mastectomy and trust as you pointed out " taking out the factory" is a good thing.
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Anyone that is on Fasoldex, how did you injections go? I had one (rather two at once), 2 weeks ago, then today, then they said in 2 weeks. Does that sound right?
Shari
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I did the single dose faslodex and it was only once a month....I honestly did not find the shots to be too bad, but then I had done cortisone injections for years in my knee before getting it replace so I was used to rough shots.....also have quite a bit of fatty tissue to shoot into in my butt!
Sharalou, What is supposed to be good about faslodex is that IF it works, it keeps the cancer stable. None of these drugs are fun, but for me a simple injection is easier that remembering to take my pills....you would think if your life depends on it, you would remember, but not always if you have chemobrain the way I do.
I am so sorry you are discouraged and sad, Susan. You have always offered me encouragement so I hope I can offer you some. It doesn't have to mean things are progesssing....remember a lot of things makes those numbers jump around. And it doesn't have to be the end just becasue the numbers are up there. I am at the point now where I am just so amazed at how high mine are that I actually find it sort of funny......2,709!!.....gotta admit that is pretty impressive...but remember way back you told me about that woman from France who was in the 3,000s for years. I was telling them today when I was getting my 2nd halaven that I thought I should get some sort an award since obviously all the nurses were quite taken aback when they saw how high they are....and the amazing thing is I actually feel just fine, good in fact. So try not to worry, stay busy and do fun things. I have decided to eat whatever I feel like, and am planning a trip because I love to travel....I am not thinking this is the end, but sometimes when I get a bit of bad news it spurs me into doing things I have been putting off and I know there are places I still want to travel to so I am going to do it.
Hormonal treatments are a good way to go....I wish they would come out with a new one that would work for me.
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Well no more xeloda for me. Circulating cancer cells went from 450 just after falsodex to 116 after the first month of xeloda to 636 after the second month. Drug worked for one month then quit. I started on Gemzar today. I am so trying to avoid the heavy chemos for as long as I can but hope I am not waiting too long. I know have two new lymph nodes (an inguinal lymph node and a lymph node somewhere behind my pancreas involved) as well as liver mets that stayed relatively stable except for one which grew by 50%. The part that sucks (well not really) is that I feel good and my friends and family treat me like I am a very sick person.Any advice on the gemzar?
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Gemzar was very kind to me with SEs....constipation the only complaint....unfortunately it did not work for me, but I know of many others that it did. Good luck and prayers that it works for you.
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Marybe,
Thank you. I have regained my natural optimism. [If you knew me in real life, you would know that was funny.] To be honest, all of a sudden my company has more work than one woman with mets can handle but this recession has been hard, so I am not saying no. I have no time to think about tumor markers. I am too darn exhausted!
I really appreciate your post. Only the third time I smiled today.
*susan*
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Just logging in today after a long break, including a trip to Munich, Neuenschwanstein and the Allgäu in Germany. It wasn't like scuba diving in Palau but still nice and relaxing.
sorry to hear about the TM's, Susan. I don' know what my numbers are and never have. I know they stll test for it. next time I should ask what they are. I hope it's a temporary blip for you or that it's a sign of something else not so insidious, like being too exhausted!0 -
Marybe-reading all your messages, you give me some real hope. Looking that you were dx in 1998 Stage IV, and here you r! Did you have a recurrence? The faslodex isn't suppose to shrink what you have, correct? Only stop-keep it stable? Hoping the rads shrink this damm thing, which is what the rads onc. said.
Shari
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