Hormonal Treatment for Stage IV
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When I was diagnosed Stage IV in98, they treated me with tamoxifen since I did not have it as preventative the lst go round (mastectomy in 90) It shrunk my tumors 50 %. When it stopped working, and the tumor markers started going up and up, I was briefly on arimidex, but the onco then put me on aromasin because he heard it got more dramatic results. It did,....took my CA 27/29 all the way down to 18 and I was in remission for quite a few years on it. When the numbers once again were going up, my onco switched me to faslodex which was nice because it was just a monthly injection which I got when I was there for my monthly zometa. I continued with faslodex when I did a year of oral chemo, but it was stopped when they discovered new mets to my sacrum which they treated with radiation before I started Abraxane/Avastin. After a trip to MDAnderson for a consultation last fall, I am once again trying the hormonal route...did Aromasin again for 3 months since it was the one I had so much success with before (but not this time) and am now doing Megace which is rather outdated form or treatment, but one they used to use a lot before tamoxifen. So far my tumor markers have gone up 200 points since the end of Dec., so I would guess it is not working, but I feel great and am staying on this one until I have scans later this month and my onco says it is time to move onto something new. The only actual SE with megace is weight gain. If you have had success with hormonals and they stopped working, there is a theory that if you are off of them for a period of time, there is a possiblity they will work again....that was what we were hoping for, but so far, don't think that has been the case with me. I believe you can sort of jump start the process with high dose estrogen (estridial ) sp? which the onco at MDA did recommend, but my onco feels it is too risky since I have a history of DVTs and am on coumadin for life due to this. Also Halotestosterone was on the list of hormonals I have and it is actually a male hormone and can cause SEs such as excess hair, male pattern baldness and you voice deepens and an enlarged clitoris.....my onco said he didn't think I would be happy with the SEs and I don't either so we aren't even going to try that one.
Even if they aren't working for me now, I cannot praise the AIs enough because they DID work for me, had very few SEs and the ones I did have were nothing I couldn't live with, and they kept me in remission for many years.
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Marybe, it seems the hormonals for hormone positive women many times work very well. I think there's a new way of thinking about using them as first options. I'm happy they worked so well for you. I hope I get as much time from Aromasin without having to go to chemo for a long time.
Renee (that's my oldest dd's name...well, it's Natalie Renee, but we call her Renee), this is OUR plan for now. I do know dentist are very much aware of the problems with onj and bisphosphonates. My sil had dental work done..extraction and bridge...and the first thing the dentist asked before doing it was if she was on a bisphosphonate. She doesn't have bc. I'll have to ask about the "blue light" thing...LOL I've never heard of it. On Gina's site (nosurrender), Constantine (the "researcher" whom I adore and so do many other gals) gives suggestions as what to use for oral hygiene while on bisphosphonates. He talks about some bacteria that is the problem. He believes in using Listerene and Arm and Hammer toothpaste. Do you have her website addy? If you want it I'll post it.
Fidelia, yes, Bonefos has been approved by the FDA in 2005. I found that out by Constantine. He says Bonefos is not a thread for onj. Cannot remember exactly what he said, but something about some ingredient in it...nitrogen something...I can't remember. I'll have to go back and find it. Anyway, it's been approved for metastatic disease. I NEVER hear about it here though.
Oh, and somewhere I was reading about hormonal change with mets. Yes, it definitely should be tested. I was strongly ER/PR+ with initial dx. With this dx I was only ER+ and I don't know how much. I need to ask and I need to get a copy of that biopsy report. Gina's (nosurrender) first dx with bc was triple neg. Then she had a new cancer in the other breast and she was ER/PR+.
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Hi Ladies,
Good idea for discussion.
I was 43 at initial dx stage 2B ILC, estrogen pos 90%. I had a lumpectomy and 9 nodes removed/2 were pos. I had dose dense AC x6 and 33 rads.
I took Tamoxifen for 11 months. At first it was mostly hot flashes, sleep issues and a little forgetfulness. The longer I took it, the worse those symptoms got. I was always in a fog, couldnt focus on anything or remember anything and I had leg spasms out of this world. By the 6th month the leg spasms were coming every 30 min or so, all day long. By the 9th month I was a zombie from no sleep and my legs felt like someone had beat them and the spasms were every 15 min. All this time my onc told me that my symptoms were from chemopause etc. One weekend my hubby and I went out of town and I forgot my meds. By the 3rd day of no Tamox..my mind felt much more clear and my leg spasms were only coming every 2 hrs. I went to my onc on the 4th day and told her about my experience. She advised me to go off Tamox mostly due to the leg spasms as she feared it would lead to blood clots. I then tried Arimidex and it literally put me in bed. So I went with nothing and ended up with mets to bone in L5, 3 yrs and 9 months after my oiginal dx. I now take Aromasin and it works well with few side effects compared to the Tamox and Arimidex. My onc said that often if you try the AIs again later on, they will not have the same effect on you. She said I will stay on Aromasin til if/when it stops working. I do have hot flashes and have gained 25 lbs on Aromasin but part of that is probly from my reduced activity level.
Edited to add ...all my scans are clear and bloodwork is great. So far it has not appeared anywhere else. I also take Zometa infusions.
Hugs, Mazy
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Okay gals, so I've been on Femara now for a whopping 3 weeks and I'm having a variety of aches and pains. I'm hoping someone else can tell me, "Oh yes, that's the Femara..." because frankly I'm getting paranoid that it isn't working and the symptoms might be progression. Here are my symptoms in order of severity/annoyance:
1) twinges of pain/aches on my right side under the rib cage and in my back. Mostly this comes and goes, but I did have a couple days of constant pain last week. Could this be my liver mis-behaving?
2) Occasional heaviness/ache in my chest
3) Fatigue. I am more tired than when I was on chemo, but maybe this is in my head...such a subjective thing.
Thoughts anyone? I SO want to be on Femara for a long, long time.
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I find that femara does contribute to various aches and pains. However, you do want to rule out progression. Ignoring symptoms could shorten your life span. I suggest that you discuss this with the oncologist and when you have had a ct and bone scan which rule out progression you can then blame the femara. Unfortunately a liver acting up or pains in the back or the weight on your chest can be symptoms of progression.
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getwell and dreamwriter, I too am on xeloda and experience bone pain frequently. my onc. always runs more tests to rule out bone mets, but really I think it might be my low white cell count. Aren't white cells made in the bone marrow? My body is trying to keep up with the Xeloda. BTW, I've only had 3 cycles of Xeloda so far, and my CT last week showed no progression of disease. YAY!!!
When I had my mastectomy and chemo the first time around in 1999, I only took tamoxifen for a few months, then decided not to take it. I feel like if I had kept taking the tamoxifen that I might not be stage IV so far advanced right now. But, maybe not.
LuuAnn, I also gained like 30 pounds (went from 125 to 155 lbs) when I was put into med.menopause and if I stick to low glycemic diets, eat lots of veggies and lean protein, the weight comes off eventually. It does make you feel horrible, and short of breath, and less attractive. Try sticking to low carbs, and you'll see a difference. Sorry - bread goes straight to the hips.
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nancyh, I had a pleural effusion (fluid on lung) when I felt heaviness in my chest. Have you ruled that out? Now I notice that if I take a steroid, the heaviness goes away. I know steroids will illeviate fluid on the lung. I keep some dexamethasone at home. BUT - you cant take it anywhere near bedtime or you will never get to sleep. I found that out the hard way. lol
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Dreamwriter and Chocolate Lover - thanks for your replies, I see my onc in two days, so I'll ask her. I know her well enough that I'm sure she'll order a scan. I guess it was good for me to post and just admit to myself that I am having symptoms...I've been trying to talk myself out of it and feel like my brain wants me to float down the River DeNile.0
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I too agree that you have to be religious about taking your tamox. I was stage II three years ago and felt that I didn't need to take the tamoxifen everyday after going through the chemotherapy. I am now stage IV and am going to CTCA monthly for a Zometa infusion, a Lupron injection, and a Faslodex injection. My onocologist told me that the meds could stop working for me after 18 months I am now thinking "what could I do then".? Would a hysterectomy help as my cancer thrives on hormones? Please, tell me what you know.
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I am taking Femera and it seems to be working I guess, joint pain all over and it is making me tired but I am ok!! I also have the twinges of pain where the tumor is before the scan I thought it was growing but it shrunk 60% and that was a month ago it is still twinging now as a matter of fact.
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Surviving the Lupron does what a hysterectomy does. I to am on Lupron and don't get why they just don't do the surgery.
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Am I the only person in the world to have her ovaries radiated to kill their functioning? One session and no surgery, no scars, no recovery ... couldnt have been easier. So why is this not a common way to kill off the ovaries.
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Woo Hoo...I go on vacation and lookie lookie...we got it! Thanks to all who helped and suggested - it is a beginning and the Moderators listened!
Nice homecoming....thanks ya'll
Big big hugs!
Sharon
ps my desk is piled with work...just popped on to see what was happening...when I get unburied, let you know about the vacation...xxoo
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Welcome back Sharon! Sorry I stumbled on giving kudos to Patti earlier in the thread (though she also deserves credit for being the first to post) - you both have such awesome avatars I goofed.
Anyway, thanks again for getting the ball rolling on this thread! Good luck getting unburied at work. 0 -
Does anyone else get a very sore arm after zometa infusions? I just wondered before I call the doctor to complain and have to go for more tests.
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Ive only gotten it twice so far and no sore arm.
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I get my zometa thru my port.
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I've never had a sore arm from zometa
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Diana,
I had bone pain everywhere when I first started Zometa, but only for one night. I've been on it for 8 months now and never had any pain with it. I do have arm pain from Femara, however.
Terri
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Diana: Just wanted to say that I had my first Zometa infusion last Monday. Before the infusion I was at the lab and had blood drawn. The blood was drawn up by the inside of the elbow and the Zometa was infused down by my wrist. Both the Zometa infusion site and the blood work site are still sore and it has been 11 days. I was definitely going to let my onc know. Jean
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Nancy: Was reading your post about the aches after the three weeks of FEMARA. Does breast cancer spread that fast? I think you should mention the aches and pains to your onc anyway, but I'm not sure that in a couple weeks breast cancer spreads that quick. I thought the spread of the disease was sort of slower than that. At any rate, you should tell your onc when you go to your next visit. I'm three months on FEMARA now and do have aches and pains, and the couple days of aches and pains from the Zometa. Feel kind of old sometimes, ya know? Jean
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Hey Padiddle, thanks for reading/asking about my post. Yes, I do feel old! :-)
I saw my onc yesterday and here's what I learned. For starters, I have been feeling better and the aches in my right side are pretty much gone now. My onc poked around on my liver and said everything felt normal, so based on that plus the fact I'm not having symptoms now, she wasn't worried. She is checking my CTC (circulating tumor cell) test, which is basically a tumor marker for me to make sure it hasn't gone up and then I'll have a scan in a couple weeks. She did say however, if I have more/constant pain or if my CTC is elevated she would want me to have a scan right away. From what I understand, liver mets, in particular, can be very sneaky and come back really fast. Since I still have about a dozen visible mets in my liver and just switched from chemo to Femara, my onc is being very cautious.
Anyway, I've rambled on...probably more than you asked for, but that's what I found out.
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There is one deep lower arm vein (kinda on my wrist above my thumb) that gives me a lot of pain for days when I get the Aredia infusion. If I can get good sticks closer to the surface, there is little pain afterward. I have found that bulking up on water prior to the infusion and drinking at least 2 bottles during helps with all the se's.
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Thanks everyone for your input. This was my third zometa treatment and I don't remember feeling all these aches and pains. I see my onc in three weeks so if it doesn't go away I'll address it then. As Padiddle said I don't think it spreads that fast and I just had a good bone scan a month ago.
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oooh, Lowrider you reminded me of the last time I went for blood work, they stuck me in the wrist (cant use left arm & crook of right arm was bruised from CT) Anyway, they hit a nerve and I nearly jumped right out of the chair! Shooting hot buring pain. Like lightening was coming in my finger, down my hand and into the wrist. Very Weird. It's the only time that has happened, but it was over a week ago, and my wrist still aches at night. After three pokes, they finally decided to use my port. DUH!!! Use the port!
Nancyh, good to know your pains have lessened! I know what it's like to worry about it all the time. I can't tell you how relieved a good CT report makes me feel. Like i can live again for a few more months! Hopefully your pain stays away, and your next test clears your mind too.
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I had my first Zometa infusion on April 12th. Before the infusion, I had blood work drawn at the lab and blood was drawn on the inside of the elbow. The Zometa was dripped in a vein by my wrist. Both areas ached a lot for days after the infusion. Does anyone else get aches and pains in the area where blood was drawn or bisphonates infused? Just curious.
Edited verb tense.
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I did have a little pain at the infusion site, but I had so many sticks in that arm for for scans and MRI I just did not think about it. One of the things they looked for was a change in color around the site.
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I've had 8 months of chemo so I have a port so I get Zometa in the port as well. (no pain).
Terri
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Padiddle - an little achey around the infusion site seems pretty normal - especially if it is around the wrist area for me. I prefer the top of my hand - but they are pretty rolly polly - I think sometimes it is a challenge for the nurses so they try to stick the rolly ones...LOL. I get no after-pain from the infusion there.
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It really burned when I got my infusion of Zometa. To help the nurse gave me a heating pad and slowed the infusion rate to twice the normal time. It helped a lot.
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