Hormonal Treatment for Stage IV
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Hi all,
Just chiming in to advocate having your ovaries out, or radiated! I took Lupron for 8 months and found that it made me nuts, or maybe I was already nuts and it made me more crazy!! I couldn't stand this med and opted for having my ovaries out as an alternative. It was a minimally invasive surgery and I feel so much better. Once I stopped taking Lupron, the side effects from the Aromasin, seemed to go away.
I also am an advocate for getting a port. I receive my Zometa through a port and am so relieved not to have my veins poked and prodded. I am so sorry for the additional pain, some of you have gone through in receiving your treatment through a vein.
Question for all: For those on hormonal treatment for bone mets - how did you and your doc. make the decision to switch from one treatment to the next? Was it after one more spot showed up...or something else?
Thanks much, Joani
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Hey Joaniji
Just curious, as I get monthly Lupron shot... I currently don't have any real side effects (well, persistent ones) from this or the tamoxifen or the zometa. Tho I don't enjoy the monthly Lupron poke, my doctor said having my ovaries out would snap off my estrogen like throwing a light switch. She says some people have bad hot flashes as a result. I currently don't have any hot flashes...did you have these or any related SEs after having your ovaries removed? As I am doing pretty good with the status quo, I'm not contemplating a change, but just wondering what your experience was...
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Hi Joani,
I was wondering the same thing on the hormonal treatments for the bone mets just like you. I have been on Tamox and Zometa only so far since August 2009 so I haven't changed hormonals. But what hormonal drugs do you go to next once you get progression after the Tamox.
Kathy
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You probably would either go on to Femara, then Faslodex and then Aromasin and I think there are 2 others.
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My oncologist and I discussed my progression and then she suggested the hormonr treatment be changed to femara. It was simple... tamoxifen was no longer working.... so she went to the next one on her list.
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I found that I had horrible nights sweats on Lupron but since getting my ovaries out, I have had some but not nearly as many. Englishmajor - so glad to hear that you are doing well on the lupron shots, maybe each person metabolizes this drug differently. I just found that my mood became more stable and the aches and pains decreased, after having my ovaries out. Hope you continue to do well on this combo. When is your mastectomy? I wish you much comfort.
Has anyone experience progression of bone mets while on hormonals? I know that when the cancer spreads to the organs, then treatment is definitely changed but I am wondering what happens when bone spread is confirmed.
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Please don't assume that dentists are aware of problems associated with biphosphonate treatment. I had been receiving Zometa injections since January 2003, right after my bc metastasized to my spine. In August of 2008, my dentist recommended that I have my left lower wisdom tooth extracted. I wa very worried, but my dentist assured me that the risk was "vanishingly small" and that "the entire onj story had been vastly overblown by the media."
Long story short, the pain from the extraction site continued until February of 2009, along with a painful earache, at which time I went to a maxillofacial surgeon, who did oral surgery and found dead bone in my jaw at the site of the wisdom tooth extraction. (I had gone back to my dentist three times, complaining of pain in my jaw and ear. He kept assuring me that the site was healing, albeit slowly, and that the pain in my ear could not be related to the wisdom tooth removal, although I had never had an earache before in my life.) In addition to enduring excruciating pain, having to take antibiotics for sixty days, and use an oral rinse that turned my teeth the color of tobacco, my oncologist will no longer give me Zometa, on which I had been doing very well, because I have a confirmed case of onj.
Had I known what the outcome would be, I would have chosen to live with the wisdom tooth, but I trusted my dentist instead of myself.
My ear and jaw still hurt.
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Gee whizz, just noticed I posted the same thing twice....sorry ladies for being redundant! Anyway, I believe there is a trial going on to see whether Zometa monthly versus every three months makes any difference. I didn't qualify for the study because I had radiation and they were looking for people with bone mets that were not radiated. Wouldn't it be nice to go for Zometa every three months rather than once a month!
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queleanorirk I just wanted you to know that there ia another drug out there for bone mets. Denosumab has been in trials and has been shown to do better than Zometa (although not much) It is not a bisphosphonate. So maybe it it is an option for you. Might s well as your doc if it is available. I really do not know if onj is a s/e.0
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Thanks, Reneepals. I'll ask my onc.
Can you also tell me how to add info to my diagnosis information? I used the checklist, but it doesn't tell the whole story. It's a kind of mishmash of my first diagnosis of Stage III bc in 1994, and the spread to my spine in 2003. Do you use "biography"?
I'm new here; thanks.
Also: if you've had your ovaries out (I have) do you still need AI's? I thought that at least my bone pain would improve, since I've been off Zometa for a year, but no such luck. (I started on Femara in 2003.)
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Hi, I started this journey on Femera, 1 year till progression, Aromasin, 7 months, slight progression and steadily rising tumor markers, now Faslodex. According to my onc, I have two more hormonal options, Arimidex and Tamoxifen. I was puzzled because Arimidex and Femera are so similar; she said that is the reason. Her argument is since Femera worked well, that it stands to reason that a drug that works in much the same way but with slight differences could also be effective. Has anyone else's Doc used this same rationale?
Thanks, Jackie
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regarding the question about need for AIs after getting ovaries out -- it is my understanding that some of the hormonal meds actually are more effective after menopause. The meds aim to prevent any residual estrogen from feeding the cancer cells. While the majority of estrogen comes from the ovaries, other tissues/organs do continue to produce estrogen. So, it is highly recommended that even post-menopausal women use anti-estrogen medication if they are hormone positive.
Take care, Joani
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Jackie my doc said the same thing. It can't hurt.
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Padiddle,
I would love to get Zometa every 3 months instead of every month just because I'm afraid of the ONJ stuff. I will say it has done fabulous at taking care of my bone mets. I no longer have any pain from it now. I think my Onc will have me on it monthly for 2 years.
Terri
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My Onc told me I was on Zometa for the rest of my life. Ugh!
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Has anyone had withdrawal syptoms from going OFF Femara. I know we talk alot about SE's when starting a hormonal. How about going off? I stopped Femara to do radiation and quite frankly I can't get much bitchier. I feel like I am outside myself and I am going to lose it over the stupidiest stuff. Everything is nails on a chalkboard right now. I have been off two weeks.
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Renee, thanks for responding. I need to learn to trust my onc., for some reason we have developed an almost adversarial relationship. I am so glad you got the same info., and I agree, it can't hurt.
Thanks again,
Jackie
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queleanorir, I work in a dental office as a hygienist....even I knew about the possiblity biophosphonates could cause osteo necrosis and not just because I have been on zometa myself for many many years. Your dentist obviously does not keep up on things and I certainly would ask him why he didn't think you would be putting yourself at risk when he extracted that tooth, especially since you even asked him about it.
With the AIs, some are used premenopausal, some post. I took tamoxifen when I was still premenopausal, afterward moved to aromasin and faslodex. I will be on zometa for life, but we did cut my dose to every two months the beginning of this year. Up until then I received it monthly. I have never had any problems with it.
I was told we have estrogen deposited in many areas of our body and it is supposed to help with skin elasticity and holds out fat cells together and does a lot of things. Believe me, I miss it, but since it was feeding my tumors am much better off without it. I would chose hormonal treatments any day over chemo.
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Dear Marybe:
I was first diagnosed with breast cancer in May of '87. Even though I was pre-menopausal, my oncologist put me on Tamoxifen and CMF (7 mos.) I had 5 of 14 positive nodes and poorly differenciated ductal cancer. Being ER+, I chose to keep myself on Tamoxifen for ten years. I watched my blood work "like a hawk" and when my liver enzymes (SGGT & SGOT) shot up, I chose to go off thinking I was cancer free. Five years ago, I was diagnosed with Stage IV with mets to sacrum, T7 and three other places in the bone. Apparently one node (which couldn't be reached during the node dissection of my mastectomy) lived. It wrapped itself around my right arm axillary nerve and a vessel. The only symptom I experienced was a feeling like "hitting my funny bone" which would last a few hours. Again, thinking I was cancer free and feeling great otherwise, the last physician I contacted was my Oncologist. I had a double free lap in 1994 (was great...all my own tissue) and my oncologist was sure my symptom was related to the surgery i.e. scar tissue. Then the bone scan, followed by the PET...diagnosis...Stage IV mets to the bone. I have been on Aromasin and monthly Zometa for almost 5 yrs. and so far, so good. My oncologist slipped me a note yesterday while getting Zometa which read: "Live today as if yesterday was your last day on earth." WOW, I thought I was already doing that, but it really made me more aware of everything. I LOVE LIFE AS I'M SURE MANY DO...NOT THAT THERE ARE NO PROBLEMS IN MY LIFE. When my cancer group (we've been together 20 yrs. and started at Stanford as an under 50's breast cancer group) asked me how they could help me die, I told them I wanted them to help me LIVE, as we're all terminal. I feel the fear of all who live with cancer. It's scary and we never know what's going to work. I have no idea when the anti-estrogen drugs will no longer be effective and hope to be with all of you at that time. I just found you and plan on not leaving just yet.
My love and many hugs (which are so important) to all.
Lindy
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Lindy, I am so glad the hormonal drugs are still working for you. Aromasin was my very favorite...no real SEs and it took my CA 27/29 back to normal range and kept it there for quite some time. Alas, they don't seem to be working for me the 2nd time around with them, but I won't know for certain until I get scan results so have all my fingers and toes crossed. I totally agree with you about living, not dying with cancer and get a funny look from people when I tell them we are all terminal as you pointed out. No one lives forever, some of us just get a warning that it may be sooner than later and that is when we get the choice as to what to do with our lives...my philosphy is to live it to the fullest. Keep living...sounds as if you are doing a wonderful job of it.
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queleanorirk
You need something to fight the cancer. Getting your ovaries out or being on Lupron only acts on the estrogen made by your ovaries. The Aromatase Inhibitors attack the estrogen made by fat cells, liver, adrenal gland, and a small amount of breast tissue.
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Dear Marybe:
I was so excited to hear from you. Thank you! I'm scheduled for my third PET on May 11th (it's been two years) so naturally, it's on my mind. I'll keep positive thoughts for you and I'm "in love" with your puppy! When is your scan scheduled?
Hugs to you and that precious "fur person."
Lindy
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My Mom just switched from Arimidex to Femara because of side effects. She did 5 years of Tamoxifin before being diagnosed with stage lV. She's ER+. If you're ER+, and the tumors feed off of estrogen, why would the hormonals quit working? Why does the cancer start spreading again if estrogen is what fuels it?
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Sincity, I don't know if my answers are correct, but I will tell you what I think...i think that after awhile you build up an immunity to a treatment, just the way after awhile one allergy pill stops working and it's time to move onto another one. It is my understanding tamoxifen is used for women who have not yet gone through menopause. Sometimes you can be on an aromatase inhibitor or hormome blocker and think it is working, but mets can develop because in reality it stopped working. I know that is sort of a messed up sentence, but as an example....I developed new mets in my sacrum when I was on faslodex. My onco thought it was working, but obviously it was not or I would not have developed new mets. I hope your mother does well with the femara.
Lindy, So pleased you like my furry friend.....his name is Harley which is not a name I would have picked at all for such a sweet little guy, but we got him off of Craigslist and he came with his name. Today I had my CT and I am having the bone scan on Monday. I hope they can do a good comparison on the CT scan since I did not have the IV contrast because of the allergic reaction I had last time in spite of premed.
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Thanks, Marybe. You're answer makes sense. I guess it's like anything else. You can build up an immunity to almost anything. Actually, my Mom was 74 when she had her first bout with BC, and she is 82 now so she was post menopausal. They thought they got it all....a pea sized tumor with no lymph node involvement. They gave her radiation and Tamoxifin and sent her on her way. She took the Tamoxifin for 5 years. Two years after she stopped taking it, the cancer came back in the bones and liver. I don't know if she got it back because she stopped the Tamoxifin or if it would have happened anyway. Hopefully, the Femara will keep it stable for a while. The chemo she was on helped to shrink the tumors. I really appreciate your input.
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Dear Marybe:
I'll be holding positive thoughts for you and hoping for good news on your CT. Is there any reason that you didn't have a PET Scan? They really show every tiny detail. I too have allergies, but did not have a problem with the PET Scan. I've heard of several who have had reactions to the contrast, but still had clear readings.
Sending hugs to both you and Harley!
Lindy
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Dear Pattih,
I took a 7 week mini-vacation from Femara. On the 18 day off the drug, I notice some of the side effects had stop. Stage IV with other medical conditions and I wanted to see what was the problem and what was side effects. I restarted Femara after 7 weeks. I noticed the side effects that had stop began again by 21st day back on the drug. Had a ct scan on the 5th week back on the drug and the progression was minimal. Had I waited another 2 weeks, I will to bet that everything was back to normal.
Now on, it feels as though the mini vacation never happen. Hope this helps.
DJ
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I am going to ask my onco when I see him Wed. why I never have had a PET scan....am sure he told me before that I didn't need one, but I am going to ask why I don't need one. I am normally never too concerned about the outcome of scans....guess it is a false sense of security because I have done so well for so long...BUT this time I am worried because if the megace isn't doing anything and the aromasin already failed the 2nd time around and my onco refuses to have me try high dose estrogen, it is most likely going to mean chemo. I have never been on femara and when I asked about that one time was told that it was the same as such and such and cannot recall what...arimidex perhaps?....know it was compared to something I had already been on. All I can say for sure, is that I actually feel better than I have for a long long time and everyone says I look great and I hate to give this feeling up by going back to chemo. And if I do agree to chemo I am sure my onco will say I have too many stipulations as to what I do NOT want....the hair is not something I care about, although that was my #1 concern back when I was 40 and first diagnosed...Will I lose my hair? Hard to believe how naive' I was back then. Things I do not want are the losening of the nails and the tenderness that went with them and interfered with using my fingers......neuropathy since you can never be sure it if will go away.....the clogged tear ducts since I am still seeing the opthalmalogist to get my eyes back to normal...and last even though it probably sounds petty, I would like to keep my sense of taste. Being a foodie who loves to cook, that really took away from my quality of life. I know this is a lot of demands on my part and am sure that is what he will tell me. I guess it I had to put up with all those things I would take them over fatigue since I really do want to keep on working and know that won't be possible if I am feeling wiped out. Sorry to whine....maybe should be posting this on the chemo boards and perhaps will. I have said it many times....in my opinion hormonal treatments are great and I am so grateful they worked for me for so many years.
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Earlier on, I asked about Wellbutrin (antidepressant) and tamoxifen. I was told that there is no known contraindication between the two. Well, I thought about it a bit, then I went searching. I found this:
http://www.pharmacytimes.com/issue/pharmacy/2009/2009-03/2009-03-10041
This article has a list of drugs that can apparently render tamoxifen ineffective:
Amiodarone (Cordarone)
Bupropion (Wellbutrin)
Chlorpheniramine (Chlor-Trimeton)
Chloroquine (Aralen)
Chlorpromazine (Thorazine)
Cinacalcet (Sensipar)
Diphenhydramine (Benadryl)
Duloxetine (Cymbalta)
Fluoxetine (Prozac)
Halofantrine (Halfan)
Haloperidol (Haldol)
Imatinib (Gleevec)
Paroxetine (Paxil)
Perphenazine (Trilafon)
Propafenone (Rythmol)
Propoxyphene (Darvon)
Quinacrine (Atabrine)
Quinidine (Quinidex, etc)
Quinine
Terbinafine (Lamisil)
The last entire year I was on tamoxifen before, I was taking Tylenol PM, which has the ingredient for Benadryl (diphenhidramine) in it, not to mention was on Wellbutrin. Benadryl?!? I am wondering if being on those meds made the tamoxifen useless for me and helped bring on the mets. I don't usually get all worked up about things, but this seems like a reputable web site and it has me wondering. What do you all think? Is this a fuss about nothing, or is it something to be concerned about?0 -
This is something I would definitely ask my oncologist about. Also if you use the same pharmacy for all your Rxs they are supposed to know aobut intereactions, but maybe would not catch something unless it was on a life threatening list. Nothing is a fuss about nothing, when it comes to our health.
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