Hormonal Treatment for Stage IV
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Were you doing anything in addition to Xeloda? Were you on it two weeks and then off one? I just finished my first cycle of Xeloda and Taxotere. I will get my CTC done tomorrow and then two more cycles before my next scan. I hope the Gemzar works for you. That one is out there for me, too.
Treso
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I was on xeloda and zometa. My second dose of gemzar is tomorrow. No side effects from the first dose. I go for lab tests on Monday to see if it is working. I get nervous when I don't have any side effects,
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Faslodex anyone? Any side effects? I've had 2 injections so far. Bruise on one of the sites (on coumadin), and tingling in mouth. Anyone else?
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Faslodex has been very tolerable - been on the double shots since October 2010 and started to stablilize in January and by April 15th after all the scans including a full body scan - the results were 'significant reduction in both size and number of lesions throughout the spine'. In addition, I was just switched to Xgeva from Aredia and find that very tolerable as well.
*susan* - I am so sorry - perhaps its time for the double shots...I wouldn't give up on the Faslodex yet - it took the double shots to get it to work for me.
Hugs all...LowRider
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Lowrider, That is encouraging news. I am possibly going to be doing Faslodex when I see the onc in June. I had concerns because a year ago, when my tumor markers went nuts, I was given Faslodex loading dose then had 1 shot for the next month but I had terrible rib/hip/back pain and my scans showed progression to the liver, lumbar spine and R hip. I was on the old protocol of 250mg dose but now found out that that dose was not effective per FDA and was changed to the 500mg dose. I am a little nervous about going back on it but it would be the new dosing. Dawn
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this is my second request for HELP this week. got scans back today and i have either a lymph node or a mass in the hilar area. it has grown to 1.5 cm from 1.0 cm about three months ago. CA 27 29 has also increased from around 256 three months ago to 374 now. so he decided to continue zometa but change me from faslodex to aromasin. i started with arimidex, went to faslodex and now the aromasin. so it looks like this could be my last hormonal effort. any comments or experience with this protocol. thanks again in advance.
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I wonder if my protocol would be an option. I am doing both the aromasin and faslodex together. Wish the studies were done on this one. I know there was a preliminary presentation at this year's San Antonio conference, but not much more than that.
Other women have had success with one AI over another even though you would think they would all be the same. I certainly hope that this is the case for you.
All the best,
*susan*
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ejnova - have you ever been on Femara? That is what I am on and been having good success with it.
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how was halavan? I may be on this dr appt 6th to see if cea 439 and 27=29 436 what are the side effects? also how high has tumer markers gone for other people? this is the highest I have had
thanks
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carol -my tumor markers went up to over 3,000 at one point and are now down to 115 since I have been on Femara. Femara is the only one I have been on so not sure about the halavan SEs. I have had very few SEs with the Femara. I just hope it keeps working for me. There will be someone along soon with information about the Halavan.
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Carol, I have had three treatments of halaven so far....very few SEs....hair is shedding and the usual constipation, but I am getting used to that. The part of this treatment that really hit me hard was the neulasta shot I got the day after the 2nd treatment....I am due for it again next week, but I responded so well to it that next time they may only have to give me a half dose. I will not know if this is working until we complete two cycles and that will be the middle of June. I do have times where I feel like a huge cloud envelopes me and I can barely hold my eyes open...perhaps this is fatigue or maybe just too much late night HBO and SHowtime.
Ejnova, Aromasin was the hormonal drug that was the most successful for me....took my tumor markers from 700s down all the way to 18. I had the normal joint aches and pains, but it was nothing compared to chemo and I think every ache is worth it if the drug works. My CA 27.29 was 2,709 or maybe it was 2706 I forget , but AmyJo had me beat with the 3,000s
Susan, How is your treatment combo treating you?
Edited to add response to Sharalou....sorry I did not look back a page....yes, in 98 it was a recurrence....it had gone to liver, sternum and lung. I was lst diagnosed in 1990 and had a mastectomy then. The faslodex did just as you said, kept things stable, but many of the hormonal treatments, tamoxifen and aromasin actually shrunk my tumors and put me in remission.
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Hi,
I´ve been on Faslodex now for 15 months and will know next Wednesday whether we have to start something new or whether I will keep going on the double shots for a bit longer. The Faslodex has indeed been quite a rollecoaster ride with me. First my marker (CA 15-3, very similar to your CA 29...) went down from 37 to 12 (had ooph at same time, one ovary was one big met) and then slowly went up again to 30. Tried the double shot and they went down again to 26 but then up again to stabilize around 30-34 for three measurements. With all this, three CTs showed stable disease!!
Last month now sudden rise to 43 (for me the highest ever)! At the same time my gyn said there was excess fluid in my abdomen which probably means progression so had CT today. My feeling is that I´m still responding to Faslodex but possibly not enough. We´ll see, appointment with onc is next Wednesday.
But one thing is really worrying me: My estrogen levels are strangely high, a month ago at 40, now over 50! This is within the range of postmenopausal women, but considering that I have no ovaries anymore and not much fat to produce this estrogen, where does it come from?? Both my onc and my gyn were puzzled. The estrogen is scaring me, a) because, if the next step is hopefully an AI rather than chemo, will it be able to deal with such estrogen level and get it down? And b) this is silly, but maybe I am this exceptional freak case, where the tumor is itself either producing estrogen or stimulating my body to produce estrogen - I was told this was nonsense. But it was strange: After keeping quiet for 4 years under Tamoxifen (with estrogen levels between 6 and 30) these ovaries, full of mets, went completely crazy after a failed switch to Arimidex - my estrogen level was at 140 when they finally got them out!!
I know the Faslodex binds very strongly to receptors and should do the job even with estrogen around, but maybe it is only failing me because of the stupid estrogen around???? Remember:only the double shots did the trick, the single shot wasn´t strong enough to control the tumor cells (but then estrogen was low). Maybe now it´s the same?
Anybody had their estrogen levels measured after an ooph?
Best wishes to you all!
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Hi,
I´ve been on Faslodex now for 15 months and will know next Wednesday whether we have to start something new or whether I will keep going on the double shots for a bit longer. The Faslodex has indeed been quite a rollecoaster ride with me. First my marker (CA 15-3, very similar to your CA 29...) went down from 37 to 12 (had ooph at same time, one ovary was one big met) and then slowly went up again to 30. Tried the double shot and they went down again to 26 but then up again to stabilize around 30-34 for three measurements. With all this, three CTs showed stable disease!!
Last month now sudden rise to 43 (for me the highest ever)! At the same time my gyn said there was excess fluid in my abdomen which probably means progression so had CT today. My feeling is that I´m still responding to Faslodex but possibly not enough. We´ll see, appointment with onc is next Wednesday.
But one thing is really worrying me: My estrogen levels are strangely high, a month ago at 40, now over 50! This is within the range of postmenopausal women, but considering that I have no ovaries anymore and not much fat to produce this estrogen, where does it come from?? Both my onc and my gyn were puzzled. The estrogen is scaring me, a) because, if the next step is hopefully an AI rather than chemo, will it be able to deal with such estrogen level and get it down? And b) this is silly, but maybe I am this exceptional freak case, where the tumor is itself either producing estrogen or stimulating my body to produce estrogen - I was told this was nonsense. But it was strange: After keeping quiet for 4 years under Tamoxifen (with estrogen levels between 6 and 30) these ovaries, full of mets, went completely crazy after a failed switch to Arimidex - my estrogen level was at 140 when they finally got them out!!
I know the Faslodex binds very strongly to receptors and should do the job even with estrogen around, but maybe it is only failing me because of the stupid estrogen around????
Anybody had their estrogen levels measured after an ooph?
Best wishes to you all!
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I mentioned to my onc. yesterday about getting my hormones checked, and he said there was no need to. Had my ovaries removed in 2006. But now cancer in supraclavicular. I see him in a month and it will be like 10 weeks since first faslodex. Going to ask to get hormones checked, for my piece of mind. SHIT with all this!
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my doctor took me off arimidex in sept-2010(since 2005)-because developed rt. breast ca,then on tamixofen in jan-2011,but off 3-2011-because of supraclavicular. Now I am wondering about the ace inhibitors, if that had a big factor. I think you have to be your own researcher.
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sharalou - so sorry you are having such a bad time. {{{{{{{{{{HUGS}}}}}}}}}}} Hope everything settles down and you get the answers you need soon.
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sharalou, I agree 100%. You have to be your own researcher and talk to your doctor about your findings. Ace inhibitors may increase risk 50%!
http://www.breastcancer.org/risk/new_research/20110422.jspSusaloh, sorry to hear your your estrogen levels going up. Estrogen is produced also in the adrenal glands, liver, muscle and skin cells. Maybe it would be good to go with another aromatase inhibitor concurrently like Susan. Also estrogen from farm animals could be affecting your fresh water supply. Try drinking bottled water if you're not doing that already (and if my mermory serves me right that you live in the country).
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Hello ladies, I saw the mention of zometa and thought I would add my experiences of this yukky treatment! When I had my first treatment, I was fine all that evening but into the night I started vomiting and feeling generally flu'y - quite dreadful for a day or two, not getting out of bed.
This was last Novembr as I recall and I came along to these forums to ask for advice. The main points were to drink plenty of water before and after treatment and to try doubling the time that the infusion took. I took this advice and found a great improvement and I thank the ladies on this site for such wonderful advice. However, I did have two more occasions of vomiting, though not quite as debilitating, even with the 30 minute infusion....then a disaster happened a couple of treatments ago (I have them 3 weekly), a nurse set the infusion to go in over just 15 minutes...aaaagggh - I didnt realise until the alarm went off to say I was done! The reaction actually skipped a night, but the following night I started vomiting at 2am and simply didnt stop for 24 hours - there was nothing left and I felt SO ill. I had no choice in the end but to call on a nurse to come to me to give me a jab to stop the vomiting - that worked like a dream, and before long I could catch up with all my pain meds, which of course I had gone without all this time, and i then recovered quickly. However, it was just so awful that to avoid any chance of it happening again, I now have my infusion done over 45 minutes to be on the safe side, and I have found that to be very beneficial..no sickness and less aches and pains generally. It would seem like some of us just cant tolerate it being put into our bodies too quickly. My consultant tells me that some ladies take it over hour or even two, so its worth a thought if you do suffer from any side-effects from zometa, to extend the time...and continue extending it until hopefully, you no longer suffer. And dont forget the water too!
I thank the ladies for the original advice I got on here as I wouldnt have known how to improve my experience otherwise, you are so wonderful for sharing!
I now find myself heading for the chemo journey, for the first time since my relationship with cancer began three years ago, and I am confident that I will get lots of great advice on how to prepare and cope with that too!
Thanks for being there ladies!
Healing hugs, Sue x
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Hi, Heidihill
thanks for your reply to my estrogen question. I very much doubt that my onc would like the idea of going along with Faslodex and an AI at the same time. He is a big advocate of sequential treatments, and there are no studies and the guidelines say otherwise... But I will ask him anyway at my apointment on Wednesday. Anyway, hopefully progression is mild so they will not have to say, it´s chemo now....
As to the water, yes, I live in the countryside and I do drink a lot of tap water, but it´s mainly arable farming here, no animals, and also, Germany is very meticulous as to measuring and publicising water pollution.
I will keep you informed!
Love Susaloh
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Hello,
just to tell you, I´ve had my CT and blood results. To make it short, there is progression in my abdomen, typical lobular growth pattern - that is, a thin layer about everywhere. Additionally, one of my three ostoblast bone mets has also grown a bit (from 0,9 to 1,3 cm). I am not too shocked, had expected worse (lung and liver so far free, pfew).
But here´s now the strange part: my estrogen level has risen to 68! Three weeks ago it was at 50,3. Weird. FSH and LH are postmenopausal.
I am really keen to see what my onc says tomorrow. I am hoping for an AI plus another round of Faslodex at least to start with, because somehow it still seems to do the job at least partially. The tumor marker has even gone down a bit.
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Susaloh - let us know what your onc says tomorrow. Glad to hear that the liver and lungs are clear, but sorry there has been some other growth. Adding the AI may be just the ticket for you in addition to the faslodex. {{{{{{{{{{HUGS}}}}}}}}}} Sending love and prayers for you and that your onc will know the best treatment plan for you to proceed with.
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Faslodex is supposed to degrade estrogen receptors. Are you on the double dose? That's another option. Don't know if you can get that already in Germany. Just thinking maybe estrogen levels don't matter so much with fewer estrogen receptors? Cyberhugs!
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Well I'm on Fasoldex a second time. The first time I took it (around 3 1/2 years ago) my markers did go down a lot but only for a couple of months. Hoping that taking 2 doses this time might work.
Annie
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Hi Amyjo, Heidihill and Annie,
actually, both oncs showed up together to see me, but they were in a terrible rush and had no time at all for long discussions. They say, it´s very unlikely that my body is producing this estrogen and that it might be a technical problem, i.e. that Faslodex itself is mistaken for estrogen by the lab. I didn´t get the chance to tell them about the body signs that tell me that estrogen is around. It doesn´t matter anyhow why it´s there, they said, it just needs to go down, and that we are going to have a go with Arimidex now. When I get my Zometa in 5 weeks time, they want the estrogen level to be tested again. If it hasn´t gone down, it will be chemo, they said, "a light" chemo...
And no, I should not get the Faslodex shots once more just to be on the safe side, because they don´t want to risk test results getting confused because of their theory about the lab problem. As I said, they believe in sequential treatments....
So now I have taken my first pill and am just hoping for the best
Oh, and yes, I did get the double dose! Same thing happened to me as to Annie, with the single dose markers dropped sharply only to start rising steadily again. I had a hard time convincing my onc to give me the double dose which had just been approved! But it made the CA 15,3 drop again, rise again and finally stabilize for a few months, so it´s given me an additional 7 or 8 months!! Altogether it´s been 16 months, so not too bad....
I hope that now I will finally sleep again. Another month - lif partitioned in 1-months-portions...
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Hi, It's Saturday morning and I am just sort of checking out the threads I am familiar with. I have completed four treatments of halaven and after next week which will be my week off, that will be what he calls two cycles and we will retest my tumor markers which had gone up to 2,706. I got my neulasta shot yesterday and premedicated myself with claritin the way the women on the threads told me to do and so far so good.....but as I recall last time the SEs did not hit until the afternoon of the day after the shot so I still have about 6 hrs to go. Re zometa, I really never had any problems with it at all, but know some women do.....and I got it in 15 mins....that is what I liked about it, it was fast. I was on it for probably at least nine years and now get Xgeva which is just a simple injection and takes no time. Maybe you could ask about it, but I would imagine if the zometa bothers you, this one would also. I have said this before and I will say it again, the AI that really did the most for me in taking the CA27/29 to normal range and put me into remission for years, was the aromasin. But there again, I know we are all different and react differently to these treatments and medications.
Isn't it amazing how estrogen, a substance women need, turns on us and ends up being what is feeding our cancer. Seems rather cruel.
I hope you all have a nice weekend.
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Hi Marybe,
Hope the "so far so good" continues and that the Halaven does its job!
Lane
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Hi Marybe, good to hear from you! I was beginning to wonder whether I had sent this thread to sleep with my boring postings
.To hear from you is always so encouraging, the way you drop things like "took it for 9 years" or "put me into remission for years" is just fantastic for all of us who might be thinking that to survive another 3 years woud be great....
I guess your case is fairly unique, but still, if I lasted only half as long.....I hope so very much that your results on Halaven will be good and that your tumor markers once more will have dropped significantly!!
I´m having a brilliant long weekend (Thursday was Ascension day) with the weather beeing as gorgeous as it´s only at this time of the year. My husband went off sailing with old friends and I spent half a day in bed sleeping and eating chocolate, licking my wounds, so to speak, but since then have been outside all day either walking, running or cycling in the fields or at the waterside, a symphony of blue and green and bird´s song everywhere....or just sitting in the garden watching my four young hens...
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Oh, yes, as to the estrogen - I keep thinking, if I had been allowed to be more aggressive and have an ooph like you do in the States - who knows, I might have been in remission for years and years.... It´s been a constant theme in my story, with things going wrong with my antihormonal therapy, the failed switch to Arimidex, and now estrogen once more going up to everybody´s surprise...It´s ironic, my body seems to be determined to produce this estrogen that it needs for a "healthy" life....
Marybe, you have been on so many therapies, have your doctors ever tried a so called cox-inhibitor to reestablish estrogen dependency?
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I don't know about that cox thing.....I did try the aromasin again after my consult with the onco at MDAnderson who thought that maybe after having been away from the AIs for awhile they might work again, but alas it did not.
I still have my ovaries, but they are probably pretty shriveled up by now. I will never forget when I got a scan report back and it said something about the patient having had a hysterectomy and I thought Whoa, is this me they are talking about? I never had a hysterectomy. So I called to check and they looked at the films again and said Oh, well your uterus is so small, about like a walnut, that they must have not looked closely and thought you had a hysterectomy. That gives me a lot of confidence in the people reading my scans. A walnut!!
You are right about the estrogen wanting to come back.....it is a lot like when someone has orthodontics....if there is a gap between the two front teeth, unless you have some sort of a permanant retainer, that gap will try to return and the crooked teeth will try to return to being crooked. The body wants to revert back to it's so called normal.
Oh, and I know I have had a good run, but I am not as unique as you might think.... really you would be surprised at how many others there are out there who have been Stage lV for a long time. I think there was another woman who posted on BC.O and she was something like 13 a year or so ago and then of course there is that Kathy Rich who breaks the record....what is she 19 or 20?....way up there. I see a woman at my onco's office and she's been undergoing treatment for the last 8 years and she is triple negative so that is really good.
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So, another month has passed. Blood markers are up for the second month in a row, so will head into the scanning tubes next week. This has been a hard month overall. My oncologist, who I adore, has taken a leave of absence, blood markers are up, and as I look towards a potential change in treatment, my support system has this huge hole. I find myself just very sad.
My oncology nurse was out this week, at a workshop, so I got Nurse Pam. Nurse Pam was good. No injection pain, no aftermath. She can do my injection any time.
Bonus, I was there for so long they gave me a sandwich. :-)
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