Zometa
Hi all.
I have my last chemo on Wednesday. yay, I guess. Now the scary time starts. I am having a hysterectomy/ooph on 12.9 and radiation in Jan. Doc says tamox for a few months (to make sure all estrogen is gone) and then onto Femara. I had a bilateral mastectomy in July. So far I have been as aggressive as possible (Stage 3a, small multifocal tumors (1.3 and 1 cm) and 5/20 positive nodes).
I have been taking vit d since diagnosis and will go back to my intergrative health doc for more supplements once treatment is over. I really want Zometa though. I mentioned it my oncologist and she said something like "well, those studies havent been proven yet". I can probably get into the SWOG study where I would get one of three drugs - at least I would get something.
This is some scary s--t.
Comments
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Why do you want the Zometa?
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possible prevention of bone mets as shown in recent studies.
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Do you have any mets at this point, or looking for prevention? I take Zometa but already have bone mets- it is helping with bone pain, possible spread and bone loss because of Lupron and Femara use. Whats the info regarding prevention of bone mets? or is it still in study?
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I wanted to get into the SWOG study, but was too far out from the beginning of my treatment. However, my onc has agreed to set me up with Zometa, probably starting in December, as a preventative treatment. She fudged at first (last summer), saying that there's not been a lot of studies, but I kept bringing it up. When her research nurse said I wasn't eligible for the trial, she made the offer to put me on Zometa. Knowing how persistent I am, I think she was afraid I'd procure one of the trial drugs on my own (which I would have...my boyfriend and I had already found a Canadian pharmacy from which we could order clondronate. LOL!).
I'm going to see the gyn onc tomorrow to set up a date for an ooph in December (hopefully). Like you, everyminute, I'm throwing everything I can at this. I'm taking 1200 mg. of D3 per day, too. I'm leaving no stone unturned.
BTW, there seems to be some evidence that Zometa also prevents mets to other organs, not just bones.
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I dont have mets (that I know of) but am stage 3a and would like to keep from developing mets. It is still in study. SWOG study. One study was done which looks promising. Based on what I read on this board - some oncologists are prescribing it off label, others are wiating for the studies.
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What is SWOG study?
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Celtic Spirit- I am curious why you are doing ooph rather than using Lupron?
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Celtic Spirit - A recent study came out re Vit D not being helpful BUT as you may have noticed it was only using 400 IU- a Canadian study came out saying that more was better...I live in upstate NY and take 4000 a day in the fall and winter and 2000 a day in the spring and summer. Have you had yours tested?
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Statement about vitamin D and breast cancer prevention
TORONTO, Nov. 14 /CNW/ - Today, Marc Sorenson, Ed.D, an expert in vitamin D, issued a statement today in regards to the health and cancer prevention benefits of vitamin
"The recent Journal of the National Cancer Institute published study, only used 400 IU of vitamin D - an amount we know has no affect on vitamin D blood levels. This research is deceiving. In contrast, the Creighton University study (released in 2007) used 1,100 IU of vitamin D. People need vitamin D blood levels around 40-60 ng/ml to achieve optimal anti-cancer benefit, and we know that 400 IU won't get you there - in fact, it is barely enough to prevent rickets. In the winter in Canada, every adult needs about 4,000 to 5,000 IU daily. Vitamin D is called "The Sunshine Vitamin" because sun or UVB exposure to the skin is by far the most abundant source. Vitamin D deficiency is a growing concern in Canada, especially during the darker winter months. Get your levels checked." Note: 400 IU, if no other source of vitamin D were available, would produce a level of about 4, not 23. << Sources for research about vitamin D and cancer prevention include: - A four-year, randomized study followed 1,179 healthy, postmenopausal women from rural eastern Nebraska. Participants taking calcium, as well as a quantity of vitamin D3 nearly three times the U.S. government's Recommended Daily Amount (RDA) for middle-age adults, showed a dramatic 60 percent or greater reduction in cancer risk than women who did not get the vitamin. The results of the study from Creighton University School of Medicine, conducted between 2000 and 2005, and reported in the June 8 online edition of the American Journal of Clinical Nutrition. Joan Lappe, Ph.D., R.N., Creighton professor of medicine and holder of the Criss/Beirne Endowed Chair in the School of Nursing said, "Vitamin D is a critical tool in fighting cancer as well as many other diseases." - Fifteen experts from universities, research institutes and university hospitals around the world recently called for international agencies to "reassess as a matter of high priority" dietary recommendations for vitamin D because current advice is outdated and puts the public at risk of deficiency (The American Journal of Clinical Nutrition, Vol. 85, pp. 860-868). - A 2007 breast cancer study, published online in the Journal of Steroid Biochemistry and Molecular Biology, used two earlier studies - the Harvard Nurses Health Study and the St. George's Hospital Study - and found that individuals with the highest blood levels of 25- hydroxyvitamin D, or 25(OH) D, had the lowest risk of breast cancer. - A study released in 2008 by the University of Toronto researchers measured the vitamin D blood levels of 512 women who had just been diagnosed with breast cancer, and tracked the progression of the disease during almost 12 years. Almost three-quarters of the women suffering from breast cancer had insufficient blood levels of vitamin D, and almost half of them were severely deficient. Women whose levels were highest had a 75 per cent reduced chance of death and a 96 per cent reduced chance of metastasis when compared to those whose levels were lowest. - Dr. Cedric F. Garland, cancer prevention specialist at the Moores Cancer Center at the University of California, San Diego (UCSD) and colleagues estimate that 250,000 cases of colorectal cancer and 350,000 cases of breast cancer could be prevented worldwide by increasing intake of vitamin D3, particularly in northern or southern countries in temperate latitudes. >> Recently, The Canadian Cancer Society, recognized the cancer-fighting potential of vitamin D, and recommends 1,000 IU of vitamin D daily. -
Who does Vit D testing? It is something onc would do and supervise dosages?
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My onc wouldnt do the Vit D testing - I think your primary can do it if your onc wont. I am going to discuss that with Onc at next visit too.
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EWB - Doing an ooph because (1) it eliminates most of my estrogen and (2) my mother died of BC and her sister (my aunt) died of ovarian cancer, so even though I'm BRCA1&2 negative, both my onc and gyn onc think there could be a genetic factor in there. So it's both a preventative measure and a means of eliminating estrogen, which will also enable me to take the aromatase inhibitors.
Everyminute - I live in sunny So. Cal. and spend a lot of time outside w/o sunblock (I hate the stuff!), so I get a good dose of vit. D that way on top of supplements. Yes, I had read that study you mentioned. I also read an article the other day on some Internet news site in which they asked six top docs what supplements they took. Their answers varied, but everyone of them took D3. The next time my onc orders blood work, I'm going to ask her to test my vitamin D levels just to make sure. I think it's a good idea.
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I do not have any history of cancer in my family so I was given the option of having an ooph and using AIs or medically suppressing the ovaries and using AIs. I have been using the medical ovarian suppression but have been thinking about ooph. Not sure is there is any advantage either way.
Sounds like it is a really good idea-- get two advantages for the one procedure. Is this an outpatient procedure or overnight stay? I hear it can be done laprascopically (?sp) so there is less down time, quicker recovery.
I wish you all the best in the procedure!
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EWB - I had the laproscopic ooph done and it was a very easy procedure for me. Same day surgery and walked out with 3 band aides on my abdomen. Immediately post surgery I had some gas cramps (they inject gas into the cavity for viewing) but with medication and about 45 minutes later I was comfortable. Frankly I felt so well by the 3rd day I had to take care not to lift any heavy objects or be too active. You are limited to lifting for several weeks but I was able to dirve by the next day.
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Congrats on finishing Herceptin!!!
I will keep my open for the San Antonio info on Zometa. I am just finishing chemo (tomorrow) and still have surgery and radiation to go so I probably would not get Zometa til after that anyway but if my oncologist wont give it to me it may mean I switch to another oncologist.
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Woo hoo! Today, I got my first infusion of Zometa scheduled (Dec. 6) and my oophorectomy date (Dec. 15). Cancer ain't taking me without a fight, baby!
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Yah for you! I am scheduled for breast exchange, port removal and total laproscopic hysterectomy on Dec 9th. Last chemo tomorrow and radiation starts on 12/24.
I am gathering all my research on Zometa to bring to next onc appt in Dec....
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Sent you a PM, Celtic!
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Thanks to God for all of the victories these ladies are celebrating.
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I have stage 2 BC (2cm, SN +) and I am taking Zometa for prevention. I had my first dose of Zometa last Thursday and only a few hours after the infusion, I felt terribly sick..fever, chills,nausea,malaise,headache. I thought I was dying. It was worst than chemo, but thankfully, the horrible side effects lasted only 3 days. For those of you who are scheduled for your first dose of Zometa, ask your oncologist to give you Dexamethasone during infusion. It is supposed to help with fever and nausea. Take Tylenol right after infusion and continue to do so every four hours-do not wait after you feel sick. I was not given Dexamethasone and I will definitely ask for it at my next infusion.
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I have been on Zometa since May of this year for bone mets. I did some research and do like what I am reading about Zometa. I have a monthly infusion and have absolutely no side effects except for after 2 weeks I experience 1-3 days of mild nausea. The antinausia meds take care of that.
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swmmom- How did you get your doc to give it to your for preventative. My doc wont do it and I am stage 3 - hoping that the studies that come out in Dec in San Antonio convince her!!!!
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IEveryminute, I have mild ostepenia due to being on Arimidex and my insurance approved Zometa based on that. Since it was not a terribly toxic drug, I decided to get on it. I want to treat this beast as aggressively as possible. My oncologist said that the women who benefited most from Zometa were the ones who were on chemo therapy while taking Zometa. Study results didn't come out until June of this year and I was already done with chemo by then, but he thinks I will still benefit from it.
Skyrat, I am so happy for you that you are not experiencing any of the Zometa side effects. I wasn't as lucky, but from what I read, side effects lessen with each consecutive treatment. Since fever, chills and nausea are common side effects, I am not going to take a chance next time and will ask for Dexamethasone and load up on Tylenol.
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Swmmom - Actually the first study done with zometa was with women who never had chemo at all - just hormonal and zometa and still those with zomenta showed a 36% reduction in bone mets. I am asking for a bone density scan - actually hoping for osteopenia! Also excited to see what san antonio symposium says about it.
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Swmmom - was your Zometa infusion given over a 15-minute period? I've heard that that can cause a lot of flu-like symptoms, etc. I've already checked with the outpatient treatment clinic folks (who will give me my dose) where I go about the infusion time, and they give it over an hour period. Thank god! I received dexamethasone during chemo and it gave me thrush every time. You would have to hold me down, pry open my jaws, and force one of those pills down my throat to get me to take another.
Everyminute - I think my onc agreed to the Zometa either because (1) I wouldn't shut up about it or (2) she knew I'd find a way to get one of the SWOG study drugs on my own, and this way, she can maintain some control and know that I'm doing this safely (thanks, Dr. D!) or (3) she's read the studies and knows it just a matter of time until its approved as a first-line treatment. Also, she knows I'm going to have an oophorectomy soon, which can lead to osteoporosis, so should she need to justify to her boss why she's giving me Zometa, she's covered.
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Ha - I mentioned going to Canada to get it myself and she said "who would infuse it?" I said "I'll drink it if I have to" She said we could talk about it again at my december appt. I am not giving up - I need to keep an eye on the 8 weeks out of chemo for the SWOG study - that would put me at jan 14th (in the middle of radiation)
I am going to ask for a dexa bone scan in dec too
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I have been on IV Zometa for 2.5 years now, off-label use for Stage 3C ILC with 23 positive nodes. I initially got it every 3 months for the first 18 months and am now taking it every 6 months. I never had severe symptoms post infusion but I have learned that if the infusion is extended to 30 min instead of 15 and given along with a small bag (250 - 500cc) of NS IV fluids it will greatly reduce any chance of side effects...at least that has been my experience. I generally have absolutely no side effects at all. I did have mild aches and pains and feeling a bit feverish after the first couple of infusions but that no longer happens now that we have slowed down the infusion rate and added extra fluids.
I am very hopeful that Zometa will soon become standard protocol for women with positive nodes as a means of prevention, not only of bone mets but the possibility of mets elsewhere in the body also. Of course, time will tell and no treatment will be the magic bullet, but certainly the news up to this point is very encouraging for Zometa.
This past July was my 8 year anniversary of IDC in the right breast. Tomorrow will be the 3 year anniversary of the biopsy that confirmed my ILC diagnosis of the left breast. I consider Dec 5, 2005 my real anniversary since that is the day we removed both breasts and 23 positive nodes. I am very grateful and happy to say I am NED at this point. This January I get my next 6 month CT scan and IV Zometa dose. Hopefully, the news will continue to be good!
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"I'll drink it if I have to." LOL! Sounds like something I would say!
My plan of action was to order clondronate (one of the SWOG study drugs) from Canada. It's in pill form, taken daily, and a four-month supply ran about $425 USD.
My insurance is with Kaiser, which has its own health care facilities and doctors. The Kaisers in Northern California are participating in the SWOG study; the ones in Southern California, where I am, are not. I had talked to my onc about participating in the NoCal study, since my medical records are electronic in Kaiser's system, and told her I was willing to fly to San Francisco monthly if I had to. I think at that point she knew how dead serious I was about receiving a biphosphonate at a cancer preventative.
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I have my fingers crossed that something good comes out of the san antonino symposium or my dexa scan!
I just checked my oncology groups website and the SWOG trial is not listed - argh.. I will switch oncs if I have to
Yesterday the PA told me that they have to be careful since at one point they were doing stem cell transplants which turned out not to be helpful after more trials came in. I said "Yes, BUUUUUTTTT - this drug is good for your bones anyway so future studies may not be as encouraging but it is not like a stem cell transplant!!!!" She siad,,,"k - we will talk in december!"
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LindaLou, that's great news! It's hard to say which treatment or which drug keeps each of us recurrence-free, but you certainly lend credence to the argument for using Zometa.
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