Hormonal Treatment for Stage IV
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Ready for some good news ladies? (I posted this last night on another thread, but was too tired to post it on all the threads I use.) I went to the onco yesterday get the results of last weeks labs and to get my Aredia treatment. The Tumor Marker Count was down from 99 to 63 and the Circulating Tumor Marker Count - I think it is the Ca27/29 - was down from 215 to 13!!! even the onco was literally doing the "Happy Dance" for me. He had everyone in the treatment room cracking up. They gave me some steriods before my Aredia so that I would not get sick and so I had a good day. The steroids have made me hungry but not too hyper as I was and still am tired.
Oh I also saw the PS for a post-op visit from last weeks surgery and he is pleased with the way things are healing and gave me some things to do to help it along. I will go back to see him next week, then the appointments will be spaces out further apart.
Hope everyone has a restful evening and a joyous day tomorrow.
Joy and blessings, Amy Jo
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Amy Jo,
That is absolutely incredible! Enjoy the steroid high, and may your "come down" treat you well.
*susan*
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Coming down off the steroids is a little shaky today. Boy and I a crab today too. My poor DH is just staying out of my way today. All I have done is fuss and that poor girl on the phone with the credit card company. They want you to make your payments online, but make it such a pain that you wind up having to call the customer support line after you are already mad. I am gald I don't have her job and have to deal with people like me. They kept telling me my bill was past due, yet the bill I had in my hand said the payment was not due until 1/28/11 GRRRRRR. Think I need to go take a nap. Glad tomorrow is another day and maybe this will all be over by then.
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Hi ladies,
Question....I have been on tamoxifen since the 1st of January along with my maintenance Tykerb. I have no hot flashes or other symptoms related to estrogen blocking. I guess I should be happy but I am actually paranoid that it is not doing it's job. I know the recent studies presented at San Antonio did not show benefit to checking one's tamoxifen metabolizer status (ie: ? slow metabolizer). Just wondering if it generally takes more than a few weeks for hot flashes to start in your experience.
Thanks!
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Hi Lorieg
I have been worried about lack of SEs in the past but have been assured that the hormones effectiveness is not related to the intensity of Side Effects. Tamoxifen worked for 2 years and I had occassional mild hot flashes, Aromasin didn't work and I had really intense muscle aches. Femara worked for 6 months and I had no SEs at all and now I am on Faslodex, it's back to occassional mild 'warm flashes' only just noticeable.
Let's hope that you are one of the lucky ones who doesn't experience the dreaded flashes!
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Re Xgeva. I think the main reason they are pushing it is the fact it's just an injection so takes no time at all....or maybe they get paid more for it, who knows? My cell search has always been zero other than the time it was one, but onco says anything under 5 is good. I worry about the CA27/29 myself, but he says I should and we are doing it again a week from Wed. when I have Gemzar again...mainly because I asked him why we hadn't done one when I started on the Gemzar.
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Jintski- thank you for sharing your personal experience!
Lori
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Susan....yeppers...let that stuff warm up good...so sorry you had that experience! Hey, we live and learn!
Hugs...LowRider
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I'm at the vaccine trial at Johns Hopkins and have discovered that I have "innumerable" mets in lungs. According to Dr. E they are small and it is safe to continue in the trial while we give the Faslodex I am on more time to work. Se was talking about doing xeloda next. I'm wondering whether I can take my left-over Tamoxifen while I'm on the Faslodex, since I only switched from Tamoxifen due to becoming post-menopausal. Has anyone here taken another hormonal while on Faslodex?
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Dear Romans8: I have the same mets you do. I was diagnosed Sep 2010, and only on Femara and Prolia (like Zometa)....YES hormonal treatment does work. I just had my ovaries takeb out b/c I ws ER (+) which makes you instantly postmenopausal and that way you start Femara, which works better than Tamoxifen. Why use Zoladex, when you can jsut have your ovaries removed and never have to worry about it again?
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Hey there ladies,
I have been on Femara since August 2010 and the night sweats had eased up when I started taking it at night instead of in the morning, but the last week they have started back with a vengeance. I wake up every 2 hours absolutely ringing wet with sweat. My last report my CA 27/29 has dropped down from 215 to 13 and the tumor marker count dropped down from 99 to 63 so I thought the night sweats were a thing of the past then BLAM here they are again. Has anyone else had this happen to them? Any suggestions on what I can do to help ease the night sweats? I am running out of PJs !!!! ;-)
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i'd love to know also, i had to start taking ambien to get through the night, because i was afraid of driving after being up every 2 hours. and now i sleep in a sports bra and panty covers come on and go off (and it's 7 degrees here lol)
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I don't get the night sweats but I do wake often because I'm hot so, maman as you say....covers come on, covers come off!.......we need some sort of system that does it automatically for us with out disturbing our sleep patterns..........sigh!!!
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Hi Ladies,
Haven't posted but once, but I certainly appreciate all of your support and "patient knowledge". Sometimes, that is really important in questions for my Onc. Femera lasted 31/2 months. After 3 month scan things weren't happening,in fact some tumors on ovaries and lymph nodes grew. So, now I have been on Faslodex -1st 2 "butt shots" 1/25. 2 more 2 wks later, and now on once a month for the 2 (500 mil). Hopefully, this will start working for a while. I am thinking about asking about another biopsy since now research says tumor can change status. Any thoughts would be appreciated. Always try to do the next best thing.
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jamnstv...Hi - I had Arimidex fail and went to Faslodex - I got the first shot in June and had 3 single shots until the FDA approved the double dose - started that with the October treatment - I got the call last week that I was stablilizing! It takes a little longer sometimes but the stuff works! dreamwriter is in a trial that combines it with another drug - she is getting relief after the second set of shots so hang in there - many have had good results from the Faslodex. For me, I am hoping it is the 'long run' drug - years of stable and just maybe getting into regression and wishing on the stars thats NED is in my future - no evidence of disease - I think I would fall over in a dead faint if I ever got to hear those words! I had to ask them to repeat themselves when they said 'stable'...LOL
Do keep us posted!
Hugs to you and all the best...LowRider
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Dear Lowrider: Congratulations, that's great news with your Faslodex, it brought a very big smile to my face (and that's not easy especially after arguing with my hubby!), xox
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Yes I am in a clinical trial combining Faslodex and Zactima - the Zactima is a maybe - its a blind study so half get Zactima and the other half get a placebo. The govt only pays for one shot of Faslodex so the study is a way of getting the other shot free of charge. They also supply the Zactima/placebo. Since my doc wanted me on the double Faslodex, the Zactima is a bonus if I get it.
I have had improvement, so quickly some feel that it may be pychosomatic. However, when I started I had a problem with my left arm.... so much so it felt broken. The doctor said that a tumor high up in the spine was leaning on a nerve causing the problem - which also explained the inability to pinpoint the exact location of the pain. After one shot of Faslodex the pain switched to the other arm. Something common with nerve pain. Then it disappeared from both arms. I can crochet and quilt again - something I hadnt been able to do for 6 weeks. I still have bone pain - doctor says L8, L9. This is new.
They are doing scans right after 3 months on Faslodex. That would be March or April. I cant wait to see if this is working or not. I have the usual hot flashes but thats about it for SEs.
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I´ve been on Faslodex now for exactly one year. It´s been a roller coaster. I´ve got very reliable tumor marker measurements (CA 15-3). At first it dropped sharply but just before I had had my ovaries out so you couldn´t really know what was causing what. Anyway, the CA15-3 went downwards for three months and stabelized for another month but then started climbing again. It climbed steadily for four months but another CT showed stable disease. So they started me on the double shots - immediately the CA 15-3 went down sharply but again only for three months and now it´s been rising again twice quite sharply and was higher that ever before. And the CEA starts going up, too, like it had before the oop.
Another CT showed stable disease, the three tiny spots on the lungs even completely gone!!! But also some liquid down in the "Douglas". Something´s definitely happening but because it´s going so well in lung and bones and tummy, they don´t want to change treatment yet but have another look, but this time a sonography of the liver, in 8 weeks. The liver!! Why, I asked. The onc said, because that´s the next place it could show up. My guess is, when tumor markers rise and nothing can be seen for a long while, it´s often growing in the liver. I have seen this again and again on my German board. So stable diseas in lung and bones and tummy is not such a consolation for me. Still doing my very best to enjoy life...
Susaloh
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Susaloh, So it sounds as if cancer treatment in Germany is the same as here, but I am not sure what a CA15-3 is.....I always have a CA27/29 and you don't even want to hear what mine is, but I will tell you anyway...as of the test we ran last Wed. it was 1,438.....Yikes, the highest it has ever been. I have only been on Gemzar for 7 weeks now so am sure my onco will say we need to give it time and the nurse said when she put my chart in front of him with the results, he did not indicate he was alarmed or wanted to change anything. I DO have mets in my liver...in fact the PET showed I had three tumors, not just two anymore. I no longer do the hormonals, but did for years and years with a lot of success so just check in here every so often to see what is going on. I hope you continue to do well, and try not to worry about liver mets.....I recall I was scared to death when I found out it was in my liver and thought Oh, no this is it, you only have one liver and need it to live, BUT that was many many years ago and oddly enough my liver function has not been impaired at all and I am still working and doing fine, all things considered. Where are you in Germany?....my cousins live in Pforzheim, but used to be in Ingolstadt. I worked in Switzerland for three years as a dental hygienist so got to visit Germany quite a bit when I was there and have also been back to visit the relatives. Viel Gluck.
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Susaloh - I also have mets to my bones, lungs and liver. I was dx in July 2010 with all of these mets present then. I am now on Femara which has been working very well. My CA 27/29 has dropped down dramatically and was at 63 with my last test and the Circulating Tumor Marker was down to 13 so I am doing very well all things considered. Like Marybe, when I was told about the lungs and liver, I thought this was it. I felt like I did not have much time left since I also have Asthma that requires daily controller medication and I also keep a rescue inhaler close at hand where ever I go. Anyway, now I feel like I have a future and I am looking forward to a long life with time to do all the things that are important to me to get done before I leave this earth. Please take courage and know that there are many of us in the same boat with the Liver mets. Some like Marybe have been living with this for a lot of years and some are like me and only recently found out. Take care of yourself and know that there are a lot of ladies on this thread that are praying for you.
Marybe - just wanted to take this opportunity to thank you for always being there for me with words of encouragement and living a life of courage that helps me to do the same. Love you my friend.
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Marybe and Amyjo,
lovely of you to reply!
Yes, most of the time I AM quite cheerful, because I can see that it is a waste of time to ponder over diagnosis, future, etc. It may sound silly but yesterday one of my chicken died (I just keep a hand full of them in my garden), I think she had a liver problem and she wasn´t young anymore, so I didn´t even take her to the vet because somehow I knew it wasn´t an infection or parasites. So I watched her getting thinner and paler for many months, she looked like a rag of feathers in the end, but she was as happy as ever, living her chicken life amongst the other chicken. I tried to take her inside on a very cold night but she wanted to go back to the others - only in her very last night she was poorly, sitting on the floor, even there accompanied by one of the others... and in the morning she was dead. So I thought, this is how I would like to live, how I really should live, because this chicken never wasted a second worrying and pondering etc..Stupid comparison, but it works for me!
Marybe, I live far away from Pforzheim, in the very North of Germany, Kiel on the coast of the baltic sea. Landscape and climate here are a bit like Wisconsin or Michigan, I guess. Though probably more cloudy and stormy wheather.
As to the tumor markers, for some reason here in Europe they measure the CA15-3 instead of the CA 26/29, but apparently they are very much alike and it´s no use measuring both.
Marybe, I want to join in what amyjo says - you are my big positive example (even much more then Daisy, my poor chicken....
) viel Glück to you too!!0 -
susaloh - how strange, I have a Daisy that give me lots of comfort too, only my Daisy is a dog. She seems to know when I am feeling bad and stays close to me during my times of pain. Here is a current picture of her. She was part of a litter that my DD#1 dog had and Daisy picked me out instead of me picking her. I have had her since she was a puppy, in fact she as born at my house when they were visiting here one weekend. She is now 8 years old. (64 in doggie years)
Joy and blessings, Amy Jo
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Nº 10 today. Not so bad... just feeling sorry for myself. So, husband says we are going out to dinner, and he will buy me a drink.
Suggestions?
*susan*
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Well, I went to get my Aredia IV today and told the nurse about the night sweats and she asked the onco about a prescription for something and he said to try taking Vitamin E and see if that works to aleve the symptoms before we do any more drugs. I really like my onco, he knows I don't want to take any more drugs than absolutely necessary. This weekend is rest and enjoy being with my DH for our 30th wedding anniversary, then Monday to the RO for the simulations and hopefully the first of my radiation treatments. Made some beef stew for dinner and it turned out okay for someone who rarely cooks anything. Don't know what I want to do tomorrow. DH says we can do whatever I want or go whereever I want. Let's see, we both have passports...... alas no money so I guess I have some more thinking to do.
Hope everyone has a restful evening and a joyous weekend. Joy and blessings, Amy Jo
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Susaloh, I love your chicken analogy. I just saw my onc and he was poking me hard around the liver probably trying to see if he gets a reaction.
Susan, time to schedule a massage. I think I'll do that, too. My skin is so dry.
33skidoo, I have heard of people on faslodex and arimidex or some other AI at the same time. They target different expressions of estrogen.0 -
Onco will be able to tell for sure if there is any progression by the scans. I went into instant menopause when I was on tamox so got lots of hot flashes as well as night sweats. It shrunk my tumors by almost 50%, but I am not sure how long I was on it before they did scans and saw this change...3 months, 6 months...can't really remember since it was a long time ago. Remember also, we all respond differently and at different rates. Many times tamox and other hormonals cause joint aches and pains, but I have one friend on it now and her only complaint is night sweats...she also thinks it is supressing her appetite...sure didn't do that for me, I gained weight.
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Hi everybody!
I am glad that you don´t think I´m crazy because of my chicken story (my family sure does...). I´d love to post a picture,too, (love the sweet Daisy further up) but apparently one can´t upload them unless they are already in the Internet?
Love from Germany !
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Numbers are in.... another month of stable. Though I do lick my wounds just a bit after the shot, I am grateful that Faslodex is working, and working well.
*susan*
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Susalo, Can you get photobucket?....if you put your pics in photobucket you can post them on here....took me a looong time to learn now, but now I can post pics.
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Woohoo! Great news, Susan. Brings tears to my eyes. Must be the Femara.
Vielen Dank, Marybe. Now I can post pictures, too, assuming I can figure it out.
Nerida, when my pain increased during chemo, my onc told me healing sometimes hurts. I've always wondered if hot flashes in and of themselves were helping to fight cancer by creating an unfriendly environment for cancer cells. Sort of like heat therapy. Just visualize the heat killing those sons of mutant genes!0
