Hormonal Treatment for Stage IV
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addendum: just came back from the Ladies' Room where the back of my pants caught on one of the band-aids and pulled it off. eeeeyow! That's probably the worst pain of the whole day.
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Well, I have had some tenderness now that I am getting shot in each cheek, each time - it was better when it was 1 shot in alternating cheeks. The warmer the stuff is, the better!
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Hi Everyone, i'm just about to replace my Zometa with Prolia. This is a new biphosphonate that you just take every 6 months only subcutaneously! Apparently it's better than Zometa, and less invasive. Anyone have experince with this?...xox
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Not me, but so far Zometa's the only thing I'm taking that works, so I'm not going to switch to nothin'.
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Home from shot No 9. No question that this past month my butt was just plain tender. Both cheeks. Talked it over with my nurse [who really is marvelous] and she says there isn't too much she can do. She is only allowed to use a very small width as a target in order to avoid the sciatic nerve. However, she promises to continue removing the faslodex from the fridge before I arrive to keep the injection pain to a minimum.
Before the shot I had the most fascinating discussion with my oncologist which included some interesting news from San Antonio. I am going to take some time to formulate what he told me into my own words and post back. Very encouraging stuff for us Faslodex gals.
*susan*
p.s. I am stable! Three months with the same marker numbers. He doesn't want to see me for three months, though of course I will get the injection monthly.
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susan_02143 - I missed the San Antonio discussion....can't wait to hear from you....or anyone else who has info. Maybe we need a new thread ?????
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Hi Susan (and of course everybody else)
I am keen to hear from you about results in San Antonio about Faslodex!
As to problems in the injection areas: so far, three different people have given me the shots, all of them doctors with long experience of giving injections. To my surprise, each one gave me the shots in a completely different area of my butt (of course each one told me that theirs was the right area) and I had very different reactions. I found, the higher up the stuff is injected, the better, that is, less irritations later. For the last two times the nurse came to the waitingroom to give me the syringes in order to warm them up with my hands while in the waiting room. Must have looked quite silly holding on to the two syringes....
but it sure made a huge difference! She found the injection itself much easier to apply and last time I had absolutely zero reactions to the injection. Next day, after the plasters had come off, I couldn´t even locate the spots anymore!Since being on double dose my tumor marker has gone down twice, just a little bit, but after watching it rise more and morefour times in a row, it´s a reason to celebrate!!!
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Here is a recount of what I heard today from my oncologist regarding the current status of ongoing clinical trials regarding Armidex vs Faslodex. Obviously, it is possible that I heard something incorrectly so please talk with your own oncologist about this if you think it might pertain to your own treatment plan. The most likely thing for me to get wrong is the actual %.... but I will be close.The average length of time on Armidex for women who have presented with mets before a progression is 18 months. The average length of time on Faslodex for women who have presented with mets before a progression is 23 months. However, he added that there is a lot of discussion regarding compliance. Every study regarding compliance with drug protocols when taken at home indicates between a 40%-70% non-compliance. [I find this totally shocking!]So, this means there is a question regarding the results. Because Faslodex is administered by medical staff, compliance is 100% while the Armidex group was self administering the Armidex percentage might be inaccurate for women who religiously take their drugs daily.We also discussed Armidex vs Aromasin. He stated that either drug can be taken with the Faslodex. I only asked since the cost difference is huge. We will discuss switching from the aromasin to the armidex after my current three month supply is gone. He doesn't see any reason to select one over the other. I was taking aromasin since that is what I drew when entering the Armidex vs Aromasin Phase 3 trial.I hope that this is helpful to someone. All the best,*susan*0
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*susan* WOO HOO...I am so happy for the stable...that is excellent! Enjoy your Holidays!
Hugs...LowRider
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That is helpful to know as some where I had heard there was a contraindication with Arimidex and Faslodex...If this MRI shows us what is going on - if it is real progression - I will strongly advocate for the adding back the Arimidex which only failed to control 1 lesion that the Faslodex is reducing. The use of both makes sense to me - I want to try it.
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I wonder whether my onc would ever consider this. He is an advocat for sequential treatment. He even thinks that it was good we started off on the single dose of Faslodex and only added the second in later when the one dose began to fail. He said, this way we might get 8 plus 8 months out of it while if we had started on the double dose it might also have been just ten months altogether. I guess every single woman is different and you probably can´t predict the outcome.
23 months, that´s unbelievable. If I were that lucky! Though on my German board there ist one girl who´s been on Faslodex for 6 years and in remission! But interestingly she is having terrible side effects. She ist basically ill for a week after each injection. My side effects with Faslodex are close to zero. I get more hot flashes during the week after the injections and close to the end of the four weeks I get almost none. I wonder whether it still works then`?
Anybody here had good result taking an AI after Faslodex? I don´t understand how it can work - hasn´t the Faslodex killed all the receptors? I haven´t really been on any AI yet, I only took Arimidex for 6 weeks but at the same time my ovaries went crazy and started producing lots of estrogen so it had no effect at all and I didn´t have any side effects at all, on the contrary!
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You can hear the results of the San Antonio seminars on January 6 via teleconference at LBBC.org.
Faslodex took care of the 3 tumors in my spine in just 6 treatments. I think that is a short time. What do you all think?0 -
Donsuzbee - Did you have 1 shot or 2 shots each time?
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Hi, everyone. I am new to this forum, I live in Europe, Romania, a country with not a very good medical system .I'm been diagnosed, at the beginning, stage IV breast cancer, bone metastases. In October 2008, one morning I could not leave the bed. A strong and deep pain cut through my spine. Investigations: tumor markers: CA 15-3 and CEA elevated beyond normal MRI revealed a suspected fracture, the bone disease of L5 vertebra PET-CT and concluded the existence of a 1 cm tumor located in the extension of the mammary gland in the left armpit and metastatic tumor located in the vertebra and bone breast L5.Biopsis confirmed ductal carcinoma, grade 3, er + 90-95% 90-95% Pr +, Her 1. Treatment: chemotherapy in November 2008-January 2009 : FECx4, left arm surgery - February 2009, spine surgery, L5 vertebra by vertebra replacement titanium - March 2009 TAXOTERx4 April-June 2009, July-August 2009 - Radiotherapy. Investigations 2010: PET-CT: no abnormal accumulation of FDG, MRI, CT, without changes to the nature of oncology, bone scan: substance accumulation in the left shoulder, possibly arthritis periarthritis (?). Tumor markers CA 15-3, CA 125, CEA normal. Current Treatment: Femara, Zometa ZOLADEX and - all from 1 December 2008, concurrently with chemotherapy
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Welcome Raluk,
I am sorry to hear about your diagnosis, but we welcome you with open arms. You've been through a lot in a short period of time. I was diagnosed with mets to my sternum almost 2 years ago. I'm currently on Femara and Zometa (for my bones) and this combination has kept me with NED for a year and a half now. I'm sure others will join in to welcome you and provide lots of information and support. This is a great discussion board. I've learned so much from others who are in the same situation. Much more than I've learned from my oncologist, especially about side effects.
Feel free to ask any questions you might have, and to share both the good and the bad whenever you want. That's why we're here. It's a wonderful outlet for our feelings. I wish you the best in your treatment, and am sending lots of hugs your way.
Lane
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Hi Raluk, It's great that you have found this site to join. You won't feel so lonely knowing there are many more women in this world in a similar situation as yourself. I have exactly the same picture as you, I too was diagnosed with Stage 4 from the onset, same size, same histopathology. It sounds like you are doing very well considering what you have been through. I wich you a very merry Christmas, and hopefully an uneventful & happy 2011! ...xox
Everyone: MERRY CHRISTMAS AND HAPPY NEW YEAR!!! XXOOXX
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Does anyone have the circulating tumor cell (CTC) test done? I was diagnosed in 2008. After having my ovaries removed a few months after diagnosis I began taking femara and zometa which kept everything at baseline for about 16 months. This past summer the breast tumor started growing back so I had a double masectomy in September and was started on falsodex in conjuction with the zometa. My tumor markers have remained within normal limits but my CTC numbers are climbing (they were initially over 200 when diagnosed, down to 0 over the summer and now back over 50). I have had 4 double doses of falsodex thus far. I feel good but I am concerned if all those cancer cells are floating around they will eventually settle down somewhere. I meet with my oncologist in two weeks for another injection and more blood work.
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I was diagnosed in Nov with IBC stage 4 with mets to the bones, sternum, spine, pelvis, ribs. I just had my 5 rad treatment today due to my back pain. My onc is giving me zometa and zoladex for my initial treatment. She has also scheduled me for a bone biopsy. Does hormonal treatment work? I am new to this and I am coping well with God's blessings.
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I am so happy for you Lane, with NED for a year and a half now. Does this disease alter your lifestyle?
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Romans8,
I have to say that right now I feel very well. I do have some stiffness and soreness in my muscles and joints, but my onc thinks a lot of that is osteoarthritis, which I probably would have developed despite the cancer. I believe some is related to the Femara, since it seemed to come on pretty quickly after I started treatment. But, keeping the muscles active really helps, and I am getting used to it. I do have more fatigue, but just try to get more rest.
I have adjusted to the idea of Stage IV. It took over a year until I came to terms with it, and there are times when I still can't believe it, but I have accepted it. I guess it's harder to believe when you feel well, but I'm so glad that I'm able to live a pretty normal life, other than my monthly visit to the onc for my Zometa infusion. I'm so grateful for this time, and hopeful that I'll have a few more years. I'm taking advantage of this time to do things I enjoy.
I hope you are doing okay!
Lane
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Hi Romans8!
Bone metster here too - 16 months on the antihormonals and still in the bones. Have had mixed scans but only changed from arimidex to Faslodex and continuing on the Aredia (similar to Zometa). Some complete resolution, some healing and shrinkage and some minor progression - MRI on Friday to see just what the heck is going on.
As far as lifestyle, I keep trying to do things and when it hurts, I have found a limitation. Due to a root canal, I was not able to get the Aredia this past treatment and boy oh boy - I expected a little more pain but wow - I can't wait to get the Aredia back on board on the 21st! There are bumps along the way and it seems if you can accept that all will not be perfect, you can get through it. There are all sorts of things to counter side effects from the treatments - just ask and you will get a range of things others have done.
So, welcome to the SS Mets Cruise Line, the trip no body wants to take. Wishing you the best.
Hugs...LowRider
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momofbraj - I was dx in July 2010, ILC Stage 4. ER+/PR-, HER2- I have mets to bones, liver, and lungs. I had a BMX on September 2nd and finished the reconstruction surgery on January 6th. I had Tissue Expanders put in and then after the inflation was where I wanted it to be they were replaced with High Profle Saline permanent implants. I started on Femara at the time of diagnosis and have the CTC done every other month. My counts have continued to go down from 155 - 115 - 99 and I will get the results of the last test on Friday. I had 12 rounds of radiation to the T4-T11 area of my back due to sever pain. The rads improved the pain situation a great deal. I was going to physical therapy 3 times a week that really helped with the joint and mussel pain. It has enabled me to take fewer pain meds and it has helped increase my stability and stamina. I still get really tired, but I seem to be able to do a little more before I get so tired. I do all the exercises at home now so that I can do them on my schedule and not have to take the extra time to drive the 60 mile round trip to go to physical therapy. Now I just go in once a month or if I am having a specific problem that I need extra help with. I also get an Aredia IV every month and the next one will be this Friday. They give me something with the Aredia that helps keep me from getting sick. Not sure what exactly it is but it works and that is all I care about so now I feel pretty good after my treatments. I have about 3 days where I need extra rest then I am good to go until my next treatment. I am hoping the Femara works for a long time for me. I know I will be getting the Aredia for 5 years. This was probably more information than you wanted to know, but hope that there is something in all of this that helps.
Joy and blessings, Amy Jo
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Susaloh, I know I was doing faslodex for a long time....maybe two years?...will have to look it up to make sure. Biggest mistake I did was not keeping a journal , but I do have my report from MDA which gives my history in chronological order.
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Hi Marybe, I very much hope you feel better now than last time I heard from you around Christmas! I don´t come around the boards much, too busy living, like you I love my job and hope to be working full-time as long as I can.
I´m writing now because I´m afraid my Faslodex days will be over sooner than I thought. The double dosis has given me three extra months of (slightly) falling markers, but last months it has risen again and today my gyn has spotted a cystlike area of 2,5 cm he didn´t like in my pelvic....Hope it´s not just the tip of the iceberg, because this type of ultrasound isn´t really good for the purpose. Next marker result is due on Monday and onc visit on Wednesday, so I have got everything reasonably organised....
My big hope is that progression is limited to pelvic area, because then they can do something locally perhaps and we can give the AI a chance. Or otherwise, it´s chemo. Wait and see.
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Hi Lane,
Thank you for your encouraging words. My onc said that my cancer is triggered by hormones so she prescribed zoladex but my insurance denied it pending bone biopsy results. I had the biopsy done today. I was wondering, what other options do we have if we are still in premenopausal stage? What other treatment are your having aside from zometa?
God bless you and hugs!
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Hi lowrider,
Hope your MRI turns out well. Yup bone metser we are indeed! I guess you just have to continue to live life the way you used to and act like every day is your last day. The first few weeks were tough on me, I could not sleep and I was so scared, but I have accepted it and I am hopeful and faithful that one day, I will achieve NED. I have talked to 2 ladies who are bone metsers, one has been living with it for 11 years and the other for 7.5 years, and pretty much live normal lives.
Hugs to you too!
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Hi, Romans8,
I am postmenopausal, and have been treated with Femara, an aromatase inhibitor, from the start. I think Tamoxifen is usually a first option if you are premenopausal and ER+
It's wonderful to hear of bone metsers with 11 and 7.5 years behind them. After almost 2 years, this is becoming a way of life for me, and has treated me pretty well so far. I realize the hormonal meds will stop working at some point, but, for now, I've not had any progression. I have heard that there is often a long life expectancy when the cancer remains only in the bones.
It can take a long time to make the adjustment and accept the diagnosis of metastatic bc. You will most likely have good days and bad days. That's just the way it is. It's a long adjustment process. But, keep in mind we are here for you, and try to focus on the good. My heart goes out to you.
All my best,
Lane
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Oh dear, was I feeling sorry for myself when I posted and complaining....things are actually never all that bad, especially when I look around me when I am at treatment. I am doing the gemzar with no SEs so far other than the constipation, but that can be taken care of with Senna. I had some sinus congestion, but think it may be just that, sinus...or maybe allergic who knows as I am allergic to so many things. They had me a little worried as a nurse called me not once, but twice to see how I was doing so I was wondering oh dear, what's going to happen to me....I mentioned this to Dr.Cody and he said he had told them to call since it was the start of a new treatment. My counts were normal so no signs of anemia or low white count which are supposedly common with the gemzar so maybe I will luck out and not have anything like that. I got the new drug that is replacing zometa, Xgeva the nurse called it and had no SEs with that either and it is so easy, just a jab in the stomach (or arm if you prefer).
How high are your tumor markers Susaloh? Mine have gone to the 1000's,which is the highest they have ever been, but my onco said the cell search is the important one and it just came back zero recently. Hopefully the cystlike area is just that, a simple cyst and you can stay on faslodex. Roman....can't your onco go to bat for you and write a narrative saying you need the zoladex?....it's been around long enough and has been proven to be effective so it isn't like an experimental drug or anything like that. I think it is BS the way the ins companies tell you what treatments should be allowed. Have you done tamoxifen....I was on it for years and it actually shrunk my tumors 50%.
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Yesterday was injection no 8 of Faslodex. With all the snow, I left early, and arrived even earlier since there was no one on the roads. To be nice, Nurse Linda took me back to the infusion room early so that I wouldn't have to wait. WHAT A MISTAKE! The Faslodex hadn't come to room temperature, and the injection burned in ways I can't describe. We have both agreed that I would prefer to wait in the future. This woman is so good to work with!
Blood markers are back and though my CEA has crept up, my CA2.29 went down three points. So with a single dose of Faslodex, I have four months of stable. I am highly encouraged and pleased with these results. Stable Boy is my friend.
*susan*
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That's great news, Susan.
Marybe, zero cells sounds promising. It's interesting to hear that people are being switched to Xgeva. I should ask my doctor about it, although for the moment I'm on a bisphosphonate holiday.
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