Zometa

Nancy, that's a good idea. My ob/gyn recommended it for osteopenia, although she wasn't the one who prescribed it. 

Thanks everyone. This may be off topic but how to you like to Sloan? We are considering getting a second opionion there. Do you like your doctor?

I think Sloan is a great place to get treatment. The doctors are some of the best. There are specialists there for all aspects of cancer, and I have been very impressed with the ones I've seen. They even have a dietician on staff who consults with patients at no charge. And everyone at the breast center is so nice, even the non-medical staff remembers you by name. 

Initially, when I wanted to get a second opinion there before starting chemo, I didn't have a choice of oncologists. I had to go through their referral service. But I've been very happy with the oncologist I ended up with. He's extremely knowledgeable and involved in some of the latest research. Another thing I like is that they put all your medical records and appointments into a computer system. The treatment is more organized and comprehensive than the place I started.

If you have more questions, feel free to email me directly.  

Just wanted to give an update on my progress towards getting Zometa. I had my teeth evaluated by both my general dentist and my periodontist 2 weeks ago. They agreed that there were 4 teeth at risk of needing extraction in the next few years. I had 1 extracted 10 days ago and the remaining 3 today. I've talked with my oncologist and I will be having my first infusion next month, most likely coinciding with my follow-up visit on the 17th. He agreed that just for my osteopenia alone at least 1 infusion is the way to go, but I am anticipating that when we talk at my visit the plan will be to receive a full 3 year course.

I'm totally psyched about this. I have to laugh at myself- weird the things that can make you all cheerful and like "oh I'm so lucky" once you've been diagnosed with breast cancer. I'm sitting here minus three teeth feeling like I've won something. I need to have some orthodontic treatment too, at least on my bottom teeth since one of the teeth that had to go was an incisor.

Now I'll really look like a 12 year old with my flat chest and braces.

I see Vit D3 levels mentioned. I take between 800-1200 of supplemental D3 daily. My PCP checked mine and it was either 41 or 43. I can't find the paperwork. She said this was in the normal range but that's all I know. I searched on line trying to find out what is considered optimal and came away confused. Usually I can figure these things out on my own but in this case not. Does anyone know what the optimal range is?

 FYI there was a good article in yesterday's NYT on-line about Zometa as an adjuvant treatment for breast cancer.

Warm wishes for health and happiness to all of you breast cancer sisters and fellow Zometa seekers here.This thread has been so helpful in motivating me to pursue this additional avenue of treatment.

Just a question Timothy - have you asked your Onc to prescribe it? I am planning to ask mine about it when I am done Chemo, just wondering what your response has been.

Thanks for the info Timothy. I would be interested in any other info you have from the Mayo Clinic. I, too, have thought your wife and I are in very similar situations.

As I am still in the middle of chemo so I hasven't even discussed Hormonal Therapy or Zometa with my Onc. Interesting his stand on Tamox vs an AI. I thought for sure an AI would be what was reccommended to me. Anyhow, I would appreciate any other info you have - did he seem to think FEC-T was the most effective Chemo option?  My Onc told me it was better for my situation that ACT, although most people I come across on these boards are using ACT. I find it really hard to know who or what to believe. At the end of the day I think you have to find a Dr you trust and have faith that they know what they are doing. And I really believe there is so much the Dr's don't understand themselves.

Anyhow, I hope your wife is doing well. I hope her Chemo goes well. I am coping with it fine. The first week is a bit unpleasant, but she will get through it. If she wants to PM me or email let me know

Paige-Allison,

You are so right about the things that make us happy pre and post cancer dx! Really changes perspective Good luck with the Zometa. I was on monthly infusion for 2 yrs until tooth issue became a concern.  Good thing is that it has a VERY long half life, something like 10 yrs, so I will get the benefits for a while more even w/o infusions.

I just had an e-mail exchange with my oncologist and he mentioned the need to check with my insurance company re: whether they'll pay for Zometa. Per him they may not because it's not yet the "standard of care." We are certainly going to push. As I mentioned before, I have osteopenia. I also have the impression that I am not a good candidate for cheaper, oral drugs because I have longstanding GI problems- reflux and gastritis.

 How have you done with getting insurance to pay?

My insurance (Kaiser Permanente) covers whatever their doctors recommend.

I looked into how much Zometa infusions (drug+nursing assistance) cost if purchased w/o insurance. It ran from around $800 to $1500. I would have paid out of pocket if I hadn't been covered.

Paige Allyson, I would think that the insurance company would pay for it if you have osteopenia.  My bone scan was normal so I had to pay for it - $1,128.00.

I had mild osteopenia at time of diagnosis, so they watched me closely and after 2 years of Arimidex my onc said it was time to get a bone supplement. I was hoping for infusion as I also have a long history of GI problems - most noteably IBS - and he said he wasn't sure if my insurance would pay because I don't actually have osteoporosis. He sent me to a specialist who did indeed recommend the infusion (Reclast, another name for Zometa, given annually). I called my insurance company and they said NO PROBLEM! Got the drip on Feb 5 - a couple of days of low fever, slight headache & mild fatigue, and now I'm good for a year. Hope it goes this well for everyone else!

As the specialist put it "Reclast is the exact same drug as Zometa, just marketed differently" (and apparently less expensive). I am assuming that means its effect on recurrence is also the same - sure hope that's true, anyway...!

Paige-A

AMEN SISTA!!!!!

Spring- Yes! Thank you.

Rachel- My oncologist mentioned this same "standard of care" issue but Anthem says they pay 100%. It pays to advocate for yourself- whether you're in the states or in Canada!

Paige

Dear Paige Allyson,

My Vit D level was 42 or 43 also. It was on the low end of normal.

I believe the range is 40-80 or 40-100. My nautralpath has increased my D3 intake to

5000 units from 2000 units. I have seen an increase in bone density, not a lot but it's an increase.

I do not take calcium, my calcuim level test fine.

I take lupron (ovary ablation) and a A.I. I have been asked also by my oncologist to take Zometa.

I'm still checking it out. I have braces also and a half flat chest. Implants (teeth) are coming in 1 year and I don't want jaw bone necrosis. Magnesium is very important as well.

You can request a print out of your blood test results; the range will be on that printout.

The Dr office must give this to you upon your request. I have an entire file with every

test result.

Dr Susan Love is my GURU she has a great website. I belong to her army against breast cancer.

Stage 1 , 0 nodes ER + 3 years ago single mastectomy.

Good Luck.