Hormonal Treatment for Stage IV
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Thank you chrissyb. I am so nervous. This will be my 3rd Pet Scan since my diagnosis last June. I haven't met anyone whose bone mets are as extensive as mine! Are there any? They are all through my torso, skull to tailbone and that one arm. I am nervous. Also, how many are on just Arimidex and Xgeva? Is it working? Anyone, please answer too. Thanks
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wandering spirit,
My bone mets are not as extensive as yours but I have been on Arimidex for 2 1/2 years and did two years of Pamidronate (bone strengthener). I have been NED since then. It is different for everyone but I wish you the best.
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Hi everyone, a friend suggested this site to me and I'm glad she did. I was dx with stage 4 breast cancer dec 2013 with mets to liver and spine. I was having back pain for a few months, but as a nurse I do a lot of lifting. I then started having pain in my breast and a golf ball size tumor appeared. Long story short, when I was first diagnosed the cancer was so aggressive they didn't think I would make it past Christmas. Luckily meet a wonderful oncologist who started me on 3 different chemos right in the hospital. I just stopped chemo and now am on the injections, zometa monthly and tamoxifen. I am having some nasty side effects and thought it was from tamxifen, so we stopped that for a week and it continues. About 90% of my body feels like it has been shot up with Novocaine. It worsens as the day progresses. My onocolgists states he doesn't know what it is from. My family doctor says its side effect from chemo. I also have intense heat coming off my bald head at night, like you can seriously make scrambled eggs on my head. That along with severe bone pain that worsens at night. I can't tolerate pain medicine, so I've been using heat and ice packs. Has anyone had the numbness like I have? I thought it could be from the lesions on my spine, I have several but the doctor said no. Any input would be appreciate, and I am so glad I found this.
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Hi Tracyjo and welcome, so glad you found this site as it can be a sanity saver. I haven't had that SE but it does indeed sound like nerve damage from chemo. There are treatments available but I think you would need t see a pain specialist. If your bone pain gets too severe, talk to your doc about some radiation to the worse spots......it helps kill the cancer and ease the pain, a lot.
I sure hope you get some relief soon as there is nothing worse than uncontrolled pain.
Love n hugs. Chrissy
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tracyjo ... welcome, you are NOT alone, as you will read on these boards. The numbness could be neuropathy from the chemo. Hang in there.
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Tracyjo, a big old welcome to the group. That chemo can be a butt kicker. After my chemo I was so exhausted I could barely walk up the stairs, and had funky weird nails. I think it effects us all differently. There is also a thread on here just for tamoxefin users as well there has to be something for people on zometa. I did tamoxefin with very few side effects but a lot of ladies complain of a huge variety of SEs. All that to say be sure to check out other threads to see if you can get answers.
Michele
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WanderingSpirit, I too have extensive bone mets. Mine is "throughout a majority of the large bones in the body with mets in smaller bones of both feet and arms." I think this may mean that you and I have a similar spread of bone mets.
I began Arimidex & Zometta in 1/2011 so I have just finished my third year. I have not received any other cancer-related meds in that time. My bone mets are stable, with no new mets and some "sclerotic" (healing) activity, initially I was havin. Bone and CAT Scans every three months. Because of the stable nature of things my ONC had me wait six months this time. I have been a nervous wreck for about six weeks now & will be having my scans in a couple of weeks.
So, aside from joint pain, stiffness & fatigue I am very happy with my treatment. I understand that most of the pain is SE rather than mets pain. For me pain meds have kept that under reasonable control. The SE affects hVent been difficult enough for me to consider changing regimes. That little white pill is my best friend at this point! My son was 12 when I started Arimidex and wasn't very happy when how saw the pills for the first time. I think he wanted something huge and scary looking rather than my little, tiny, white pill. Now we are thankful every day for that tiny white dot!
ChrissyB, Thank you so much for your steady voice and continued support and information. You area such a dear member of this group. I am always glad to see a post from you... You are my Arimidex Role Model!!
Sweet dreams & peaceful rest, ladies.
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This confuses me, my friend, Cheryl, originally dx'd in '06 with TNBC has been getting chemo all this time now her onc is saying he wants to try her on a pill and depending on her scan results possibly a pill and a shot. WTH... I'm asking all these questions and he said they received a "stain" that says she may benefit from hormonal treatment too. Dx'd with mets in '11. Has "greater than 50 lesions to lungs" extensive bone mets. Her scalp and forehead is so bumpy. I'm worried that this is not going to work and then again I'm a little angry thinking --have they been treating her wrong all this time? I'm so confused I'm not even sure what questions to ask. Any thoughts from you all would be greatly appreciated. Thanks, Bernice.
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Hi Bernice, take a deep breath and try to relax your friend has been treated just right as TNBC normally can only be treated with chemo.
Sometimes BC can change and go from being negative to even slightly positive and this is probably what has happened with your friend so it has opened the door for her onc to consider trying one of the hormonals.
There are also some chemos that are given in pill form, Xeloda, Cytoxan, Idamycin and Navelbine so if she has been taking a pill, she probably was taking one of these.
I hope this can ease your mind somewhat.
Love n hugs. Chrissy
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Thanks Chrissy, it helps. She hasn't started on a pill yet, supposed to start on the 5th. Really, really hoping this works and improves her scan and tumor markers better than the Halaven she is on now. thanks for your time. Bernice
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Cardsfan,
One of the most difficult lessons I have had to learn (over and over again) since my diagnosis in 2011 is that ⭐️No two Breast cancers are alike!⭐️ When you visit sites like this, or support groups that lesson is so easily forgotten. You hear people speaking of treatments and begin to doubt the choices you and your MO have made. Then, on top of that, in the middle of treatment small almost non discernible things shift and your MO suggests a change. I know that I have become almost superstitious about my 'little white pill.' I know that at some point I will change meds and I dread it because my Arimidex has given me three years!
Chrissy is so right. Deep breathing. Remember that you & your friend chose this MO and have put your trust in their knowledge and skill. As things shift, and they will, remember that there are lots of smart people making decisions and you are one of them!
I hope that the sun is shining as beautifully where you are as it is here. Relax & enjoy,
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Hi, I am also new to this forum. Dx'd 2007 IDC then tx with chemo to include ABraxane, rads and 3 yrs of AIs. .....arimidex,femara, and lastly aromasin....and oh yes Herceptin. Life was great until rib pain and some nausea, tiredness this past summer. Scans showed mets to lung with malignantpleural effusion. Had VATS procedure with talc pleurodesis this past Dec. Started Faslodex and Herceptin in January. No side effects there butnthe usual constant runny Herceptin nose. The rib pain continues and limits lifting or pulling activity...arrrgh! I would love to connect with a sister here who is stage 4 with mets to lung. The stats on this are not user friendly so this usually "can do" me would welcome a boost hearing some positive stuff. Blessings to all here. Hugs, Mammo
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Hi Mammo and welcome to BCO! I don't have lung mets, I have bone but there are quite a few girls who have combination who, I'm sure, will pop in soon enough.
There is also a 'lung mets only' thread and if you click on the search heading and type in 'lung mets' it will come up with a whole heap of posts from others. You can also use the main index scolling down to the Stage IV heading, clicking it and then scolling through the multitude of threads that are for stage IV only.......oh, maybe you have already done that to find this thread ......lol.......sorry, wasn't thinking there for a minute.....doh!
Anyway, I think you will find loads of women to welcome you as BCO is the best place for all sorts of things, including friendship and support, information, tips, tricks and venting. Yes, venting is certainly allowed.
Hope your treatment continues to treat you gently and the cancer harshly.
Love n hugs. Chrissy
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Hello all. Have just gotten off the plane from Jacksonville, Fl from the Proton INstitute.
OH my what a wonderful place...I am honored to have the director of metastatic cancer in charge of my care. I am not going to be totally cured but many many are cured. I am well within the guidelines of chronic disease with parameters that all of you are familiar with. The radiation is fractionated...That means that the radiation comes at the cancer, in my case, T7 from many angles. There is little wash or radiation flowing past the site of intent. The cancer in my spine is ablated. I had ZERO side effects from 2 weeks of radiation. I will answer any questions to anyone. I highly recommend this option for care. By the way, the facility was full of older gents with prostate cancer. They go into the proton machine. With 39 treatments they leave with a total cure. Totally awesome and positive experience. The Proton Institute sits next to Shands Hospital in Jacksonville, Fl. Carolyn from Fl/Tn
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car2tenn,
Sounds as if you had a very positive experience. You might want to post this on the bone mets thread, since more members are likely to see it, rather on this thread which is about hormonal tx. Hope you continue feeling good.
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That's great Car2Tenn! Sounds great!
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Carolyn, sounds like a wonderful place.
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Wandering Spirit,
I'm very newly diagnosed. PET scan 12/1/13 confirmed stage IV with mets to thoracic, cervical spine and sternum. I am on Arimidex and XGEVA. Took my first shot and pill on 12/2/13. I've taken the pills every day since. I went back 1/17/14 for a checkup and another dose of XGEVA. Everyone's cancer is different but so far, Arimidex is kicking the main tumor's butt. When I went to Cancer Treatment Centers at the end of November, the intake oncologist suggested I have a PET scan rather than a sentinel node biopsy as my local breast cancer surgeon and oncologist suggested. I had the scan that weekend and was given the diagnosis on Monday. At that time the oncologist measured the mass in my breast at 8cm. When I came back January 17th, the same tumor measured 1cm! I, like you am very afraid even with results like that and I have some anger to get over - I had lymphoma and was actually under the care of an oncologist locally since 2/09 who never caught this. My next trip back is April 12 and it's time for me to see a psychologist while I'm there, they truly do treat the "whole person" there. Best of Luck on your next PET scan, we're all pulling for you!
Sharon A
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Hi TracyJo,
My experience with all the symptoms you're listing was from RCHOP chemo when I had lymphoma. Some of the drugs in the RCHOP cocktail are also used to treat breast cancer. I did not go though chemo for my breast cancer. I can't handle pain meds either, they make me deathly sick. I still have the neuropathy though it's much more under control and is worse in my feet - hands and fingers improved quite a bit. I also have systemic nerve and muscle pain. All is helped quite a bit by Nortriptyline - I started off taking 20 mg, but I'm up to 50 mg now. It doesn't bother my stomach at all and actually makes me sleep a couple hours at a time at night which is a lot better than I can do without it!
SharonA
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Bump
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I first joined here in 2010 .. returning now for the knowledge and support of others in the same boat dx with stage 4 bc with mets to lung!
I'm still in the shock mode I think... still trying to absorb it. Dealing with telling family and friends is terrible
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I have no idea of treatment ahead but was told by my old oncologist I will probably start on another hormonal treatment since the tamoxifen seemed to be working well as my "spots" at that time were not growing. Since I could no longer tolerate my always being totally overheated with severe hot flashes on top of it every 20 minutes my oncologist and I agreed to stop taking it. That was 9 months ago and now the spots have multiplied and growing extremely fast. Now I'm waiting for a referral to a new medical oncologist since the stage 4 dx with mets to lungs.
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I have been on Letrozole and Xgeva since diagnosis in Aug,2013. Bone mets were to the spine
Legs, and shoulders. Tumors in both breast. My last scan was Jan,2014. The wait was 2 wks
Of horror. My oncologist floored me with fantastic news. The breast tumors have shrunk to
Almost nothing and she read from path. Report "no bone mets found."
I have rheumatoid arthritis in my knees, spine, and arms anyway so I normally suffer with pain.
I asked if they could differenciate between the mets and the RA. Trying to make sure I was
Hearing correctly.:-) The report stated just where arthritis was found so I have been thrilled since!
This is not NED but a lot of progress.
Be patient, all bodies are not programmed the same. Wishing you and all of us with this
Drastic disease the very best and positive news soon.
(( ((HUGS)))
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Wow, that is awesome to hear! I so need to hear these stories now. To give me the strength and help I need. Thank you and wtg!
Oh are these hormone treatments? Also for mets to lungs?
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I also have suffered tremendously with RA in my knees, neck and back since chemo. My onco confirmed that the chemo can make an existing condition much worse in some cases.
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Tryn, So sorry you're going through this. The shock/horror of the initial news is beyond description. But there are a lot of good news stories out there and I'm sure you'll be one of them! I only have bone mets, but have run across a lot of women here at BC.org who have lung mets and are still going strong years after diagnosis. I was doing well on Tamoxifin, but my five years was up and I still wasn't in menopause, so they stopped giving me anything. And a year later, bone mets.
I'm now on Femera (letraccord) and have no active bone mets at this time. I had one active lymph node in my CT scan last Sept, but am holding steady according to my March bone scan.
Sending hugs your way.
Terre
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Thanks Terre, I am hoping for a replacement for tamoxifen as it was doing the job but makes life unbearable to live. My onco said now they are recommending 10 years of it rather than 5.
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Hi Tryn. Yeah, they're recommending 10 years elsewhere, but New Zealand has caught up yet. Femera isn't too bad for me. The hot flashes suck sometimes, but they've lessened for me over time. And it's kept me stable.
Good luck!
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Tryn, yes, my treatments are
hormonal. Xgeva is to strengthen the bones.
I forgot to mention that I NEVER had chemo or rad.
We are all here for you. I was an emotional wreck for weeks after diag.
But, upon joining this forum, I have learned a lot, laughed and cried with
These fantastic ladies. They do keep it real. I rarely comment but believe me the knowledge and comfort of these ladies is awesome.
Everyone have a Blessed day.
Barb
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Hi ladies,
I am a newly diagnosed metster and have benefitted greatly so far from looking through this and other threads. I was first diagnosed stage IIa in 2010 and have been on tamoxifen (after a bilateral mastectomy and ACT chemo). Because my cancer is highly hormone sensitive, and because I am 28 years old (ergo, chock full of estrogen), everyone I've spoken with so far recommends removing my ovaries and getting on an AI as a first line of treatment.
Currently I only have visible mets in my lungs - between 20 and 30 of them, all smaller than a centimeter.
Being young and strong and whatnot, I cant help but feel like I have a lot of fight in me and it makes sense to hit it as hard as possible now, in much the same way we did last time around. Hormonal manipulation seems like a conservative choice, despite every onc I've talked to telling me otherwise. My goal is not palliative care. I'm not looking for someone to make me "comfortable" for the next two years and then send me home with pain medicine.
Despite reading a lot about this, I still don't feel like I have adequate knowledge about the real power of hormonal therapy on an individual level. Do people actually see disease regression just with hormonals, or they just keep you stable for a while? Do people get to NED on antihormonals alone?
Thanks in advance for any information - I'm grateful for the collective wisdom of this group.
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