Ladies in their 30s
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Not sure if anyone here is on Zometa or talking to their Onc about Zometa infusions to prevent recurrance - but here is an article about the latest findings. My Onc suggested I get Zometa infusions next year - but he mentioned this when I was first diagnosed.
http://www.google.com/hostednews/ap/articl...4e92639385f263b
Bone drug Zometa flops in breast cancer study
(AP) - 2 hours agoSAN ANTONIO (AP) - One of the most promising new approaches for fighting breast cancer took a stunning setback Thursday when a major study showed that a bone-building drug did not stop cancer from returning or extend life for most women fighting the disease.
However, the drug Zometa did seem to help certain post-menopausal women. Its maker, Novartis AG, is considering further study, but will suspend plans to expand it beyond its current use as a treatment for patients whose cancer has spread to the bone.
"Ten years of work and to have essentially a negative study is disappointing, particularly on a tremendous wave of enthusiasm for this based on some positive trials in the past," said the study's leader, Dr. Robert Coleman of the University of Sheffield in England. He presented results at a cancer conference in San Antonio.
Bone drugs called bisphosphonates, sold as Fosamax, Boniva and Actonel, have long been sold for treating osteoporosis. Those are daily pills; Zometa, sold as Reclast for osteoporosis, is given as an infusion twice a year.
Hopes that these drugs could also prevent cancer soared after a study two years ago found Zometa cut the risk of cancer recurrence by 30 percent in younger women forced into early menopause by hormone treatments they received.
The excitement grew last year, when a large study found that women who were not cancer patients and were taking daily bisphosphonate pills to prevent bone problems were about one-third less likely to develop breast cancer.
The new study was meant to be definitive. It tested Zometa in 3,360 women of all ages in seven countries who had breast cancer that had spread to lymph nodes. All received standard cancer treatments, and half also got periodic infusions of Zometa for five years.
After five years of followup, about 400 women in each group had died or suffered a recurrence.
However, among the roughly 1,100 women who were at least five years past menopause when the study began, Zometa cut the risk of recurrence by about 27 percent and improved survival odds by about 29 percent.
"We don't believe that's just a chance finding," Coleman said. It fits with the benefit seen in the earlier study of younger women. It may be that Zometa works best when no or little estrogen is present, he said.
Side effects are a concern: 26 women on Zometa - 1 to 2 percent of the group - developed confirmed or suspected cases of jawbone decay, a serious problem long linked to bisphosphonates. Blood clots in the lung also were more common among those on Zometa, although not significantly so, Coleman said.
"That makes the case that these drugs should not be given without a clear indication of their value. They're not totally innocuous," he said.
The study was sponsored by Switzerland-based Novartis, and Coleman consults for the company. Zometa costs more than $1,000 per infusion.
Herve Hoppenot, president of Novartis Oncology, said the company would withdraw applications in the U.S., Europe and elsewhere to expand Zometa's use to premenopausal breast cancer patients like those in the earliler successful study.
"We need to decide what to do from here," he said. The new study's result "was a surprise, I would say."
Zometa's role in cancer prevention remains uncertain, said Dr. Peter Ravdin of the University of Texas Health Science Center at San Antonio, one of the organizers of the cancer conference.
"There are some indications that in some patients it may still have value," but the side effect profile "certainly means that this drug shouldn't be given without confidence that it will cause benefit," he said.
Studies testing other bisphosphonate drugs for breast cancer will have results in a year or two.
Breast cancer is the most common major cancer in women. About 207,000 new cases and nearly 40,000 deaths from it are expected in the United States this year.
The cancer conference is sponsored by the American Association for Cancer Research, Baylor College of Medicine and the UT Health Science Center.
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Karebear - Good luck today - we are there in spirit!
Bonita - So sorry that you have to deal with BC again! But you sound like you have a great spirit and will get through treatment just fine!
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in_cognito: thanks for sharing the info on Zometa .
I am part of the Zometa clinical trial... It is really scary to think that I've been putting Zometa in my body for no benefit whatsoever and have been running the risk of developing awful side effects.
I am actually going to the cancer center tomorrow to get a Zometa infusion and I will discuss this findings with the research nurse. I might drop out of the trial. I had been thinking about it anyway for a long time.
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Karebear good luck today...
I just want to say again that i love reading everyone's post..here's an update
Yesterday I went to UNC meeting my multidisciplinary team...wow...its a lot of dr's....I would say this was my best experience since finding out about breast cancer.. I began the day with a mammogram, then ultra sound, fine needle biopsy of lymph node, then up to the team...here at home it took me a month to get completed what they did in a day. They were great, left no questions unanswered. I feel so much better about the entire process...for all you you who said once you have plan it gets a little easier i completely agree! After 12 hrs at the hospital, we have decided that we made a good choice asking for a 2nd opinion and then going to UNC..They seem to know so much and it says something that each dr. knew what the previous dr had discussed and what my family and I questioned and our concerns. Here's my plan....tomorrow i will find out if the lymph node has cancer cell, if not i will then go on to the sentinel node biopsy, putting a clip in the lump in my breast, and putting in a port...then right after Christmas Chemo-8 weeks of AC going every 2 weeks, then Taxol 12 weeks one day a week...if we decide to do the clinical trial then that will be in the 12 week period...If i need radiation then it will come next..after that mastectomy with reconstruction...Its great to be able to have this plan!
Has anyone ever had this order of treatment, participated in a clinical trial? Im TN so that is why they have mentioned participating in this clinical trial...
Can anyone direct me on the process of wigs, scarfs, hat, or anything for loosing my hair? Surprising for me, I find this more intimidating than everything else !!!
Thanks ladies for listening!!!
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Melissa, congrats on your big day! I'm so glad it went well. You know, I think losing my hair was the hardest for me too. I knew I'd survive chemo but giving up my long hair- aaaaahhhhh!
The American Cancer Society has a web site tlcdirect.org , and they have really nice, affordable wigs and other hair covers. I was also lucky enough to have a nice wig shop in town where I could try things on. It's really traumatic once it starts falling out in clumps so it's best to cut it shorter at first, to help you adjust, and then shave it off at the first sign of loss. The shaving can be kinda fun if you take a friend and have your hairdresser give you a mohawk.
My friend did this regimine and although it's tough- gotta knock out those triple negative bc cells- she looked great and always had a fantastic spirit. She's doing rads now. We went out to PF Chang's for dinner one night and while we were in the bathroom, both of us in wigs, and she still in the T portion of her chemo, me during rads, this lady said "You both have such pretty hair! You look great!" We said "Thanks!" and just cracked up when we left!! If only she knew we were cancer patients with wigs, going thru treatments! LOL!
You can do this, and we'll be behind you 100%!
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Hey moe0279,
Don't sweat the hair loss. It's almost like a uniform, that only a select few get to wear. : )) As far as finding wigs, etc... I couldn't tell ya. But... just like everything else, have a plan. The first time I cut my hair short, because I didn't want long strands of hair everywhere. Then on the night that I KNEW it was going to ALL come out, my family and I shaved my head. We took pictures as we went. I already had a wig that looked EXACTLY like my hair. The next day at work, NO ONE could tell the difference. This time I plan to get in one of those Hurricane Simulators. (My family has a weird of since of humor.) If it doesn't get sucked out, I'm gonna let my boys vacuum my head. It's gonna happen... so why not make a good experience? You sound like you have it under control. Best of luck on finding head gear. : ))
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Melissa,
I had a much different course of treatment, but I can comment on the hair loss. For me (I had 6 TAC every three weeks) my hair started falling out day 14 after first chemo- just a little bit at first- when I ran my fingers through my hair a few would come out. Then on day 16, I went to brush my hair and a bunch came out- I was having a hair cutting (to donate as my hair was pretty long)/head shaving party that night, so I didn't brush my hair anymore and wrapped a bandana around my head so I'd have something left to donate! Some women opt to cut their hair short before it starts falling out. Complete hair loss is almost guarnteed with AC- but there is a thread on using cold caps to try to save hair. There are a ton of threads on hair loss on here.
The actually process of losing my hair wasn't so bad, but as the months wore on, being bald gets really old. I opted not to wear a wig- I'm kinda an outdoorsy tomboy kind of gal, so I didn't think it was for me. If I went through it again I'd probably get a wig just to be able to go out in public and feel somewhat normal. I wish I had gone to one of the Look Good Feel Better classes as I'm not very good at the makeup thing. I did feel it necessary to wear some eye makeup once my eyelashes were gone (that took a few months- it was a very slow attrition until they were mostly gone, eye brows too. ) Your local American Cancer Society might have some free hats/headwraps and freewigs, or try a local wig shop- there are some online as well. I've heard it can be good to go wig shopping before you lose your hair.
This time of year hats are vital. I had a collection of comfy hats for wearing at home and to bed. Ideally there are no seams to irritate. I found the ones with soft fabrics were my favorite. I got a buff- they are little pricey (24 bucks or so) but they are totally seamless and come in lots of cool prints. I found I didn't like solid colored headwraps, I felt like my head looked like an egg or something. My favorites were prints and just regular bandanas. I also went and bought some fabric pieces- alot cheaper than buying a bunch of headwraps. Thrift stores can be a good source for scarves.
You can get a free silk scarf or headwrap from http://www.franceluxe.com/i/goodwishesscarves/Good+Wishes+Scarves.html
i would go for a headwrap- the scarf they sent was HUGE- a little too large to wear on the head.
I would also suggest joining the Dec or Jan chemo thread where you can connect with people going through it at the same time as you.
Dayla
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Hi Ladies,
I'm 34, married and have three children. (5.3.1 years old) I had been in graduate school for less than a month when I was diagnosed in September. The worse thing for me is not being up to my normal speed--which is of course full tilt. Glad to see there are others my age facing the same thing that everyone kept telling me I was too young for.
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I wanted to chime in here - I'm 37, was diagnosed last year at age 36. I'm a single mom to 2 super daughters. Went through lumpectomy, chemo and rads. I'm still going through other unrelated health problems, which is frustrating because I always considered myself basically "healthy" until I was diagnosed last summer. It would be nice to go to a doctor and be given a clean bill of health!
Plujenn, I am also a grad student, started last June and was diagnosed in August. I've been extremely fortunate in that my program is very small (only 9 of us in the program), and the program director as well as the professors and my fellow students have been so supportive and helpful. I think that school and my kids have been what has kept me sane to this point.
Nice to meet all of you ladies!
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TXstardust, thanks for sharing that. I had many people tell me that I should drop next semester, but I went ahead and signed up for classes. I'm going to Sam Houston so it's a rather large class of people and I haven't told anyone at school except my teachers. I will be taking some online classes this coming term though. I too was "healthy" until a couple of months ago. I don't even take asprin usually and everyone was really shocked. Although my family, friends, and coworkers are really supportive, I haven't told everyone what's going on in an effort to remain sane. My co-workers were told when I didn't show up the day I started chemo. I'm worried that I'm pushing my husband away. The smallest smile from my children will make me sob because I want to see them grow up. I am so happy to see other women here struggling with this too because it's really hard to remain positive right now.
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(((HUGS))) plujenn. I am just starting on this long journey and have found that if I just take each day and each moment at a time it helps. Try to find the small victories in everything. You will beat this and you will see your babies grow up. Just move moment by moment. (((HUGS)))
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Thanks KareBear! It helps knowing that I'm not alone.
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Dr. Update: Dr. White called and he said that the MRI pretty much confirms what he had said it was but it also confirmed that there is NOTHING in the left side!!!!!! Also it showed something in my lymph node and it is about 2.7cm but they couldn't really tell how big the tumor was in my breast. It is def. 1.5cm but there is a lot of area that they can't tell if it is tumor or just swelling.
Monday morning I am to call the Breast Center and get my appts for the Oncologist and the PET scan. He also said that the course of action will be chemo and then surgery.0 -
hard day...found out that lymph node is malignant...this really hit hard today, i think i almost had convinced myself that it would come back negative...not that this will change my treatment plan but makes me stress that it has spread somewhere else...what type of tests will they do to make sure that it has not spread..
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Moe0279: be encouraged. I've read studies here online that 1-3 nodes positive yield the same outcomes as node-negative! I'm so sorry, it will add worry. But do keep the faith.
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moe0279,
10 years ago I had 1/18 nodes pos. (maybe 2, can't remember) They could do a PET scan to see if it's anywhere else. But, you're right, it won't change your treatment. That's kinda the point in the chemo. If it has entered your system, the chemo will find it, and kill it. As far as stressing over, "if it has spread"...I think we all do that. When you're done with treatments, you may stress about, "what if it comes back?" There is always a, "what if." Just remember... try not to waste your energy on the negative. Stay positive. My tumor was -,-,- also, and that was 10 years ago. They've come a long way with treatments. : ))
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Hi Everyone,
I have not posted here for a week or two but decided see what everyone is up to. Sad to see that more people have joined but I know everyone gets support and comfort, so welcome.
I have my BMX this coming Monday, 12/13. I don't even know what I am feeling right now! Nervous, scared, freaked out, hopeless, hopeful, mad (that I have to go through this), happy (that the wait is over).... Nothing begins to describe it.
I am most terrified of the fact that when I wake up, I will find out whether the SNB was negative or positive. I hate feeling so out of control!
I will try to keep busy this weekend and prevent too much thinking. I have a lot to do.
Plujenn, I have an almost 5 years old, a 3 year old and a 1 year old, just like you. It is tough. It is not natural to not see your children grow up! But lets hope we do. So many people make it and this place is give you proof of that. We just have to take it one day at a time (and I am preaching to myself now too).
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vis0121,
I'm not up on all the lingo. Is BMX a bilateral mastectomy? If so, is there a reason why you are being so aggressive? (especially before knowing if there is lymph node involvement.) I'm am not judging in anyway, just trying to feed my ignorance. I know we all have to make the decisions that are best for US.
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Hi Ladies,
I saw this topic and decided to jump right in. I turned 36 on Sept 21st and by Oct 11 I was dx with Stage 2 and a week later after scans, was dx at Stage 4 with mets to liver, brain and poss bone. I am married and have 3 children 13,9 and 7. Started tx Nov 4th of herceptin and taxol once a week. I have not had any surgeries just chemo. But I feel really good! I stay positive and pray lots. I lost most of my hair so I shaved it off. It was quite liberating as now I don't have to worry about styling it every morning. I just tye a scarf on and Im ready
Gotta look for the bright side of anything.0 -
I have to say that I find the women on this forum to be extremely brave. I too have found my shaved head to be a bit liberating. I live in Texas and even in December it is hot it's kind of nice to feel the wind hit my head! That part was scary because at first I was diagnosed with DCIS. There would be surgery and nothing else, but the lump was so big I was suspicious. Then before it was scheduled I had an MRI that showed it was in my lymph nodes and so immediately I went to a stage 2. I didn't want to lose my hair because I didn't want my children to know something was wrong. It wasn't easy to explain to them, and at first my 5 year old was freaked. Now she thinks it's hilarious to rub my head.
I did get some wonderful news from a friend this week. She went to her 5 year check up and was told the cancer is gone. She was a stage 3, border line 4 when diagnosed.0 -
An update to encourage you all. I really needed that as I went along! I'm 3 weeks post radiation. My hair is coming in more dense every day, I keep it clipped tight and one of my docs forgot I did chemo (she and everyone else tell me it looks like a fashion statement now, not a post-chemo look). I am on fish oil, D,and Tamox (day three). No side effects to report (save a little constipation). I've even lost a pound, because I've been careful about food (I have a candy problem...).
My skin is doing well, I am using Weleda Everon Face Balm from my dear friend who wanted to give me something special. I'm going to the gym as often as possible, and my energy and all other functions are great.
The breast looks amazing. Three weeks and the peeling and burning is just a very light tan.
So gals, there is light at the end of the tunnel. Push hard, take good care of yourself, and we'll all get there.
For those of you with discouraging news, there is one thing I believe wholeheartedly: the answer is not in the stage, it is in the genetics. We don't know what that means for each of us, but what it does mean for the short term is that the "bad news" is very often not as bad as we think. And it means those of us in Stage 1 should be humbled.
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Everyone indeed is very brave! That is why I come here and read about people's experience. It gives me courage.
Bonita - I am being aggressive because I know myself and that I won't be able to have anything resembling peace otherwise. I work in the medical field, my husband and all of my friends are doctors and I know that studies show that medical care professionals have a hugely higher rate of doing mastectomies than non-medical people. Which is strange if you think about it because the data in terms of survival of people with lumpectomies vs. those with mastectomies is very much the same. And medical, scientific people certainly know that. But I think we see the worst around us and we want to minimize the chance as much as possible. For me, it is not enough to be alive in 10 years. I don't want the cancer to come back and want to do whatever possible. For me, going to screening is not enough because it is reactive. But I realize this is just me. Different decisions are right for different people. Sure, I am told from the limited sample of the biopsy, it appears there is no lymphovascular invasion. But the SNB will tell and that we won't know for sure until I wake up. I don't think I will regret the decision but of course, I can't be sure of that now.
I have little kids. The baby just turned 1! I want to see them group up!
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vis0121,
I totally agree. We all have to do what gives us peace. I was 29 with my first diagnosis, and had a 5 year old and a 14-month old. I knew I had to fight, because they needed me. Now 10 1/2 years later, with a second primary, (not a recurrence, a brand new cancer,) I know that my 16-year-old,11-year-old, AND 8-YEAR-OLD : )) need me even more. Put up a good fight, and do it your way.
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...today i feel better...thinking positive is the way i keep going...its a set back but i know that I can't get down on it because i have to keep moving forward. Thanks for all the words of encouragement!
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Another check in: I'm now filling out my paperwork for the ovarian cancer early detection program at my hospital, will start screening and genetic counseling next Friday. For those of you under 40, talk to your doctor about this kind of screening. Our risk is increased given our age, my doctor recommended this screening!
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I will be going thru this testing also at some point. My dr said that if the cancer is estrogen fed that they will want to take my ovaries. That is a tough pill to swallow. I have 3 beautiful children which helps but it is still hard to think that the option of any more kids would be taken away. They can wait to take them if I want another but given that I have 3 kids I don't think it would be the best decision to get pregnant knowing what that could do to my body with the risk of the cancer. I feel that I have to put them first and think about them.
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Make sure to get as many opinions as possible. It is so important, particularly in the younger set where there is less study and evidence of long-term efficacy,Karebear.
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Hi ladies,
i am 30 years old and doing weeklu taxol + herceptin on week 9. i got my period on week 4 and then last week was due for it again and it never came. i have terrible hot flashes...guessing this is chemo pause. but scared that my period will never return and i wont be able to have more children. i have a 10 month old and greatly want to have more children. any one have an experience iwth this? i hate breast cancer!
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jpmercy- I lost my period during chemo too- had one period right on time a couple weeks after first chemo and then nothing til about 6 months after chemo it came back and was regular right away. I was 35 when I was going through treatment. One woman in my march 09 chemo group who was 31 at diagnosis is about to have a baby. Don't give up hope!
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Hi everyone
I joing a while ago back in Oct, i was very nervous and terrified when i first started this whole procedure of finding out i had cancer, going thorugh this at 31, is a shock you dont expect it, , but I guess the chemo hasent been so bad, i mean is not fun, but I though it would be worst...althoug my first ac was a nightmare i had the worst sores/thrush to the point i could not drink water, ended up with 2 day with iv at home, second one was not too bad (if anyone is experiencing this ask for 100 ml flocunazole and sulcrate and eating ice and popcicles through my chemo, it worked for the second time thank God , this friday I will be having my 3rd out of 4 ac and then moving on to Taxol 12 weekly, my hair is gone all i have left if a short short stubble, wich i dont know if ill loose that too...I do miss my hair, it was my best feature and i took suck good care of it...it really hurt loosing it, now once chemo is done my breast will go as well...this disease really sucks, but we are all strong and with God's help and prayers we will make it!!
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