Early stage BC and Zometa

kathylev

Hello Ladies,

I'm wondering how many stage 1 and 2 ladies are receiveing Zometa infusions.  My oncologist wants me to have one every six months for 3 years even though my bone scan was good.  I've seen some studies online, mostly European, that suggest Zometa prevents recurence.   Have any of you received the same advise and if so, what have you decided to do?   

1Athena1

Yes - this is as a result of a landmark Austrian study finding that Zometa (zoledronic acid) along with hormone therapy could reduce recurrence by about a third in premenopausal women. The results were published in the New England Journal of Medicine. It was one of those rare, practice-changing moments that we early stagers are lucky to benefit from and which received much publicity. I am on 4mg every six months for thee years, which was the protocol used in that study.

Link to the study:

http://www.nejm.org/doi/full/10.1056/NEJMoa0806285

Good luck, and ask them to go very slowly on the first infusion.

OneBadBoob

Another here whose oncologist suggested Zometa every six months.

I have four treatments "under my belt" and have three more to go.  My onco feels that seven treatments is the best way to go.

voraciousreader

Me too!  Six IV treatments over 3 years for stage 1. 

OneBadBoob - 7??  I've heard of all different courses of treatment for later stages, but 7?  I thought the protocol was for 6.  Where did your onc get 7 from?  Did s/he give you supporting data?

1Athena1

Frankly, I wouldn't mind having Zometa for life. OBB - interesting that your onc sugggests an extra infusion. I sometimes wonder if I should go, bright eyed and bushy-tailed to mine, after I have rejected most of the treatments he has offered, and ask, "more please," just like Oliver Twist.  

OneBadBoob

Well, my onc is very involved with research at Yale, and he feels that that one extra infusion can make a difference.

Do all oncs feel this way?  No, I have met with several who said six treatments were fine, and one who thought Zometa was "overkill" but I love and trust my onc, and I will go to seven.

Edited to add that my tumor was 8mm, and my onc recommended CMF chemo, which I did, and  I do not regret.  Oncotype score I believe was 24--

Good grief--has it really been 3 and a quarter years since this journey begann for me?

kathylev

Thanks for your input ladies.  I saw another oncologist yesterday for a second opinion on the Zometa and she said that while it's not yet standard of care it probably will be in a few years and she saw no harm in my getting the infusions started now.  Infact, she said that if you are going to have them you should start within a year of finishing chemo.   

Jane - I notice you are in the NYC area, I am in Westchester County.  Our stats are very similiar. I also did CMF chemo for a 1.3 cm tumor.  Would you mind telling me where you are being treated? 

OneBadBoob

Kathy--I am being treated by Dr. Barry Boyd in Greenwich.

roberta37

I've been doing the zometa thing also (This will be my 4th) and 2 other ladies that I went through chemo with are also doing it.  We actually approached our oncologist about it and he pretty much said what was stated above - that it wasn't the standard of care right now but that it was coming.  I go once every 6 months (up again in November) and I've never had any issue with it.  I think again it's one of those decisions that each of us has to make.  It's nice now that it coincides with my checkups as I just starting going for cancer checkups every 6 months instead of every 3.  

skmarm

Probably a stupid question, but does anyone know if there is any science to support using Zometa for a hormone negative, HER 2 positive, post menopausal woman (was perimenopausal and chemo sent me straight to menopause, did not stop at Go)?  I would appreciate any info...want to do everything I can. 

Annabella58

Hi, I'm in CT, and my onc is pushing zometa at me.  Have you gals read up on the SEs of that stuff?  I for one am terrified of it.

I don't want to take anything that isn't the "standard of care" yet and certainly not by infusion, waaaay to reminiscent of chemo for me.

They found in that study also that all biophosphates for bones give the same recurrence protection, tho Zometa was the clear winner.

I have to get a bone scan, as they don't approve it unless your bones are needing some kind of biophosphate I was told by onc.  None the less, I'll be waiting to get it for a bit (if not forever).

Anyone suffer from the ghastly flu effects from it?  I've sure heard enough about those and it's refreshing to hear from ladies who did not.

I will, if bones need it, tho, take a biophosphate, as there is protection for us all there.  Just scared of Z.

Thnkx!!! Be well, all

OneBadBoob

ANNIEALSO--

I certainly would never compare my Zometa infusions with chemo!!!

Yes, after my first infusion, I did get the flu effects, not ghastly, since my infusion nurse did not use a pump but just gravity (since it was going into my foot, and it took a longer time, which I understand affects side effects.)

I was prepared, drank lots of water and took looks of Advil and rested for a few days afterwards.

The three additional infusions were a piece of cake!

We each have to make our own decisions about what is best for us individually, and I decided, after much research and many opinions, to go with the Zometa, after also thoroughly discussing it with my oncologist, dentist and rheumatologist--fortunately the implants I have in my mouth are ten years old, ha e never given me problems, and since then, my dental hygeine is meticulous to say the least. 

I am on the three month teeth cleaning plan, and take anti-biotics before cleaning just to be on the totally safe side.

Remember, it was only a few short years ago that AI inhibitors were not the standard of care unless you were Stage IV.

Annabella58

That's good to hear all of that...I don't mean to offend anyone on Zometa, but where I go for cancer care, the chemo room is adjacent to the waiting room.  You ring a bell when you are done, and that signifies a great deal, most people weep, it is very emotional.

For me, to have to go back to that room to get an infusion, no matter of what, would be a psychological backwards step....the thought really frightens me.

I also have the most horrific teeth........good to know that one can help with the 3 month cleaning thing.

Some of the Zometa SEs stories that have been posted are truly horrific.  Good to know there are others out there who do not feel that way.

None the less, I'll be going with another way, other than an infusion of anything, let alone Zometa.  It simply has not been out there long enough for me to have any comfort level with it yet.

1Athena1

Anniealso,

actually, Zometa has been "out there" for a while, both as a bone drug and as treatment for (metastatic) breast cancer and also lung and prostate cancer. The only new aspect is its use in early stagers. For more information:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000306

kathylev

Sorry, skmarm, I don't know if the study included hormone negative women.  Maybe you can google it and find out or maybe someone on these boards will write in with the information you need. 

Thanks, Jane, we are not that far from each other.  I'm being treated by Dr. Mittelman in Purchase, NY.  Thanks aslo for the advice and encouragement.  I'm going to start Zometa  next month and will drink plenty of water before, during and after.  I'm happy to feel like I can do more to protect myself from recurence.

I'll let you know how it goes.

1Athena1

Good luck, Kathy!

OneBadBoob

Small world Kathy!

I had a consult with Dr. Mittelman and chose between him and Dr. Boyd, both of whom had basciallly recommended the same treatment.  I liked them both very much--very kind, considerate, capable doctors.

weety

I'm one about to start zometa as well.  Early stage, premenopausal (now post because of ooph/hyster) 38 yrs old at diagnosis.  My bone density showed osteopenia (how in the world did I get that at such a young age!)  but my onc said that warrants her the okay to give zometa.  I'm waiting on dental insurance to go through to get my last 2 wisdom teeth out.  They are not bothering me at all, but my dentist has recommended getting them out now since they are impacted.  I guess he's worried that they might give me trouble in the future.  I wish it would hurry up and go through.  I just want to get the zometa started. 

I guess I'm just worried that if I wait too long, the bc will take root in my bones before I get started since it's already weakened (the osteopenia)  Does anyone know if that would increase my chances of getting bone mets?  I worry about everything.  How long after I get the wisdom teeth out, do you think I would have to wait to heal?  I do have the option of paying for the procedure myself at my regular dentist's office rather than waiting for a "plan-provider" to do it.  I was told it would be about $400.  Is time of the essence?  Does anyone know?  Has anyone read up on the study, and did it mention how soon after chemo the zometa began in the patients?

OneBadBoob

weety--

I seem to recall that the optimum time to start Zometa is within one year after finishing chemo---someone correct me if I am wrong.

And I would certainly wait until TOTAL HEALING has taken place after having your wisdom teeth removed before starting Zometa.

Someone with more scientific knowledge than I have will hopefully come along and explain the importance of this, since I believe  Zometa affects two different types of cells and their turnover rate in the bones and their healing--which is why dentist do not want to do any extractions or implants once you are on Zometa.

I there is anyway you can afford the $400 now to get the wisdom teeth out post haste, I guess that is what I would do, and then wait for clearance from your dentist/oral surgeon and onc before starting the Zometa.

kathylev

Weety - Only last week my oncologist told me it's best to start Zometa within a year of finishing chemo.  I agree with Jane: Pay for the extractions now and wait to be reimbursed from your insurance company.  That way you'll be able to start Zometa as soon as the oral surgeon gives you the go ahead. 

Jane - Small world Indeed!  I also saw a Dr. Lo in Stamford.  He was very nice and comforting, and had a very good reputation as did Dr. Mittelman.   I also met with a grumpy doomsday guy who sent me flying back into the arms of Dr. Mittelman.  I'm very satisfied with his care.  

OneBadBoob

Cracking up here Kathy!!

Have a dear friend here who saw Dr. Mitttelmen, Dr. Lo and Dr. Boyd, and did a "crap shoot" to choose, she thought they were all so competent and wonderful!!

Thank goodness I missed the grumpy doomsday guy!

But, I must admit, I had an appointment with an onc at Mt. Kisco Medical Group (our daughter is an ob/gyn there) and after waiting 45 minutes, an elderly women with her husband in a wheel chair asked the nurse how much longer the wait would be.  That B*&^hh told her to sit down and zip it and wait.

Well, I went over the top--I told the nurse I was leaving--she said you cannot leave--and I said you think so?  Watch me--any doctor who cannot train and control his "help" past the point of telling elderly, sick people to "zip it and wait" certainly was not wise enough to be my doctor!!!

So I left and got a cell all from DD says Dr. "Big" is so sorry, and please go back and he will see you right now--I said forget it--I will never cross that threshhold again, and please let Dr. "Big" know that he had an elderly woman and her husband in a wheelchair crying and I wanted to smack her silly, but just left instead.

Long and short of it, the B*&^hh nurse was fired, as she should have been, for not properly doing her job.

WTF!!!  We are the customers, they work for us, we pay them, be it through insurance or otherwise, and that reallly taught me a good lesson!

p.s.  Dr. Mittlelman has cared for many members of my family, and they all absolutely love him and has done right by them.

I guess the "main factor" over which I chose Dr. Boyd is because is is much more holistic, and diet-oriented than Dr. Mittelman.

kathylev

I can't believe this! 

My grumpy doomsday guy was at MK Medical.  Since your daughter is there I'll not name names, but I will tell you that my gyn is in that group and I believe she saved my life.  She felt a lump and even after her pinpointing the location it still did not show up on the mammo, not could the tech feel it.    When I went to the breast surgeon he could not feel it, but the ultrasound found it and the breast surgeon (not part of the group) said that my gyn had "magic fingers".  I will always be grateful to her!

kathylev

Hi ladies,

I went ahead, after consulting with 3 oncologists, and had the first Zometa infusion today.  All three said that it's not the standard of care yet, but will probably be so soon.   I'm told I may feel as if I have the flu for a day or two.  I have so many aches now, I'm not sure I'd notice a few more.  Have a nice night!

Kathy

1Athena1

Good for you, Kathy. I am sure you will feel better soon.

susand

Hi Girls, I feel silly that I dont know anything about Zometa.  I always ask my Oncologist if there is anything new out there for me.  I actually start my 3 mo's appt by asking my oncologist "Is there a cure yet?"  she has responded "You might be cured...as far as we know". Not a good enough answer for me. Anyway, she has never mentioned Zometa.  I have also had consultations at Memorial Slone Kettering and it hasnt been mentioned.  I know that I have osteopenia from my bone scan and that I am only 44.  My questions for you girls getting it are: Do you know if it is still effective if you are 2 years out from chemo? and Do you know if it is effective in postmenopausal women?  I was premenomausal until I opted on an oophorectomy last year.  If you know any answers I would love to hear.  Meanwhile I am gathering up info on Zometa to bring to my next oncology appt in a few week.  Thanks!  Susan

shadow2356

Oct 29, 2010 09:28 am skmarm wrote:

Probably a stupid question, but does anyone know if there is any science to support using Zometa for a hormone negative, HER 2 positive, post menopausal woman (was perimenopausal and chemo sent me straight to menopause, did not stop at Go)?  I would appreciate any info...want to do everything I can. 

I read the study and it specifically states that it is for ER+ breast cancer. Bummer

susand

BTW..Dr Mittleman was recommended to me also.  I chose an oncologist that is located much closer to me.  Maybe I should have opted for a longer comute.  He seems more progressive.

sgreenarch

I had my first dose of Zometa on Sunday. (Zomera here in Israel. 'Zometa' means 'she died' in Hebrew, so they had to change the name. At least this made me laugh.) I was very tired that day and had fever and aches yesterday, but except for some residual fatigue I am fine today. And so happy this is behind me. I went through dental hell to get there, doing all the dental work I had neglected to do over the years, including 2 extractions. I was nervous about time passing, but there doesn't seem to be any greater priority than getting one's dental health in top shape, according to my oncologist. Took me 3 mos. I was told to drink lots of water before and after the infusion, which I did, and also to ask that the infusion be given more slowly than as prescribed. Over 1/2 hour rather than 15 minutes. This all helped and I would say that Zometa is not something to be scared of.  Grateful it's there for us.

kathylev

Susan, I think that with osteopenia you should have no trouble getting Zometa, in fact, you probably should be on something to treat you bones.  I drank a lot of water too to prepare for the infusion.  I felt a bit sick today - stuffy head, tired and aches here and there.  Not sick enough to stay home from work, just a constant vague blah feeling.  Hopefully I'll feel better tomorrow. 

Regards,

Kathy

lago

Just got home from my 3rd chemo treatment today. She said there was a slight change in my treatment because I have slight osteopina according to the recent bone density test.

She will be putting me on Zometa ( every 6 months) when I go on Armidex to protect my bones. She also said that it reduces recurrence of breast caner by 35% as well. She gave me the NEJM print out of the study too: http://www.nejm.org/doi/full/10.1056/NEJMoa0806285

She was also concerned with my Vitamin D level because they find people with low D get more aches on Zometa. She's having my vD tested again (was tested last year) to be sure I'm getting enough with my supplements.

I'm going through all this eventhough my ER+ is only 30% and my PR+ is 5%... and my gut says it was only in my breasts but I could be wrong so I'm buying insurance with chemo, Herceptin & Armidex).

MaiTai

Hi all,

I'm now a year after finishing chemo. finished with herceptin last August.

I have to have dental work done, but my onc is not pushing for zometa.

I'm sure it will be more than a year when I finish at the dentist and I'm only ER+ (PR-),

which I think makes me a little less sensitive to hormonal treatment.

I'm afraid of SE especialy the harm it can do to the jaw.

Any PR- getting the zometa?

sgreenarch - Funny story about the zomera. greetings from TA