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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: ZOMETA

Topic: ZOMETA

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Oct 19, 2009 12:53PM

matic22 wrote:

Hello dear ILC ladies! I have to tell you I miss you all so much and am glad to write to you. 

How are you?

Well now I have some questions for you;)

As you know I have decidec to get Zometa to my mum, now my decision is much easier because she has osteopenia , but I am still not worried about that.She is a very active woman and looks healthy and young.But I really would like to know your experience with Zometa., also would like to know about past periodontal disease and Zometa connection, because she has some troubles with her teeth in the past.So, I still have not decided yet what to do-I would give her twice per year, 4 mg i.v., and I believe Zometa is the best bisphosphonate.I would start next Thursday so I really need to know your experience, you can write even what your oncologists say about that.

I know this is a promising drug, in this year I think in December there will be more and more studies presented in San Antonio Symposium.I am so excited.

I am working with lung cancer patients at the moment, and have to say that I like breast cancer patients more-lung cancer patients are so worrisome, not enthusiastic people, they would just die.Oh my God!

I believe everyone needs to be strong and brave and not let the cancer go its own way!

I am sending you cold greetings from Slovenia!

I hope you answer me some thoughts, experience, that I will make my decision easily.I really appreciate your help

Regards to all of you;)

Matic:))**

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Posts 1 - 15 (15 total)

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Oct 19, 2009 04:24PM nash wrote:

Hi, Matic. I'm getting Zometa 2x a year as a bone mets preventative. I've had two infusions and no problems. I had a lot of periodontal problems that required surgery about 15 years ago, but don't have any current dental/gum issues.

My late Stage IV mom was on monthly Zometa for 3 years, and never had an problems with side effects.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Oct 19, 2009 09:24PM Gitane wrote:

Hi Matic,  Welcome.  I love hearing from you.  Sorry about the cold in Slovenia.  I'd send you some California sunshine if I could.  It's good news to hear that your mom is doing well.  Like others, I have been getting Zometa infusions every 6 months.  My only side effect is mild sinus pressure for 24 hours afterward.  I have achiness, too, but I always have that from the Femara.  I have my teeth checked and cleaned regularly by a periodontist.  No problems for me so far.  I have had 3 zometa infusions so far.  Let us know what your decide.  I hope it is as good a treatment as everyone thinks.  I'm looking forward to the new reports out in December to bring us some encouraging news.

Warm greetings (had to say that..... : ) from California,

G. 

Dx 8/18/05, Pleomorphic ILC, multifocal, multicentric, G2, 1/9 nodes positive, OncotypeDX 23, ER+ PR- Her2-

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Oct 19, 2009 09:29PM stateofgrace33 wrote:

Hi, I'm stage IV and have been taking Zometa for 11 months.  Just a few months ago I started having profound side effects (severe joint and limb pains so that I can't walk or sleep).  The pain isn't just annoying it was excruciating and now I don't know if I can continue on it.  The pain is continuing weeks and weeks after the infusion - it's pretty scary. 

everyone's different, but I do think all of these toxic treatments have side effects, I hope your mother does not.

Chrisinte 

love, blessings and peace!

Dx 11/28/2008, IDC, 2cm, Stage IV, Grade 2, 2/4 nodes, mets, ER+/PR+, HER2-
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Oct 19, 2009 10:49PM tifan wrote:

Hi Matic!

I am receiving Zometa twice a year; I have some dental issues but so far no problems with the zometa and teeth or jaw issues.

I feel very fortunate to be receiving Zometa,however, I've had other side effects from  it and think it is just good to let people know about them so they are prepared.
I have had 3 infusions and have had flu-like symptoms each time, even though some people say they only have the flu-like symptoms the first time. I also had extreme exhaustion - sleeping 14 - 15 hours for 3 - 4 days, post-infusion, and with one infusion, crushing chest pain.

All symptoms go away in a few days and as I said, I feel fortunate to get the Zometa and am happy to put up with the side effects.

Dx 6/2008, ILC, 4cm, Stage IIb, Grade 2, 3/10 nodes, ER+/PR+, HER2-
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Oct 19, 2009 11:15PM Marybe wrote:

  I have been getting a monthy infusion of zometa since August 2002.  Before that I was on pamidromate(sp?.) which I think it the same as aredia. I started with that in 98.  I have had no ill effects that I am aware of.  I am a dental hygienist and know for a fact that I do not have any perio issues or signs of osteonecrosis.  The infusion itself does not cause me any discomfort when given and I have no SEs after.  I  was having severe bone pain when the mets were first diagnosed in my sternum and after a few months on aredia, these subsided. 

Marybe Be you own advocate and keep on your toes. I went from no stage (1990) to Stage lV while under an onco's supervision.

Dx 4/1998, IDC, Stage IV, 0/19 nodes, mets, ER+/PR+
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Oct 20, 2009 06:12PM MaureenA wrote:

After reading the posts here and on other areas of this site, I asked my oncologist today about beginning Zometa infusions twice a year as a bone mets preventive.  She indicated that I would have to be in a clinical trial; the only patients who receive Zometa routinely are those who have been diagnosed with bone mets.  I am wondering if that is correct or if I should be looking for a new oncologist who is more current. I am currently taking arimidex and had an oncotype score of 16 if that makes a difference.

I sure appreciate any thoughts or comments.

Dx 1/29/2008, ILC, <1cm, Stage Ib, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Oct 20, 2009 09:16PM theprettiestmess wrote:

I'm starting Zometa tomorrow, and I don't have any mets. My onc wanted me to start Zometa after I had my ovaries removed. I'm also currently on Aromasin.

That's all I've got. 

Laughing

Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith." Completed 3 FAC and 12 Taxol on Feb 18, 2009

Dx 7/29/2008, IDC, 1cm, Stage Ia, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Oct 21, 2009 12:12PM MaureenA wrote:

Thanks for the information Prettiestmess; will be thinking good thoughts for you.  I had been hoping to share my oncologist's view with Matic so she would have some additional perspective for her Mum. 

Dx 1/29/2008, ILC, <1cm, Stage Ib, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Oct 22, 2009 07:06AM LindaLou53 wrote:

Hi Matic!  So good to hear from you.

I was started on Zometa in August 2006 right after I completed 6 rounds of Xeloda/Taxotere chemo and 6 weeks of 3 field radiation for my Stage 3C ILC.  Zometa studies were just beginning to explore its potential use for preventing mets, but no published results yet at that time. My onc was very concerned about my high risk for mets due to my nodal count and strongly urged me to start the Zometa infusions. 

I initially took 4mg IV infusions every 3 months for the first 18 months, then she spread  them out to every 6 months for the last 18 months as more clinical trial data began to be available.  I had my 9th dose this past July which marked 3 full years on Zometa. Because current clinical trial data does not support continuing infusions for more than 3 years in women who are not Stage IV, we have decided to switch to annual infusions in the hopes there will be more data available by July  next year.  Neither of us are comfortable stopping the Zometa entirely until there are either new treatment options available for very locally advanced Stage 3 cancer or strong evidence that continuing Zometa longer than 3 years would be detrimental.

The only other treatment I am getting currently is daily Aromasin which I have been on since April 2006.  I have tolerated the Zometa infusions very well with only occasional, brief episodes of flu like symptoms, achyness, low grade temp etc.  This happened more commonly with my first few infusions and hardly at all for the last 2 years. 

I have made it a point to have the chemo nurses slow down the infusion rate so it takes 30 minutes vs the standard 15 min to infuse.  I also request they hang an additional small bag of fluids to supplement the Zometa.  Since Zometa can adversely affect the kidneys in anyone who already has kidney disease or if you are not adequately hydrated, I feel it is reasonable to request these small compromises.  I also believe that the slower infusion rate with increased hydration may translate into less side effects but it is possible that is just coincidental to my personal observations.

During the 3 years I have been on Zometa I received dental cleanings and checkups every 6 months.  I have had 2 broken teeth during that period that required crowns and have had a couple standard fillings.  I have had no signs of ONJ or peridontal disease.  I am purposely avoiding any dental procedures that would involve surgery on the jawbone itself.  I still have my wisdom teeth on one side and do not plan to remove them barring an emergency.  I would love to have my front teeth straightened but am not willing to risk injury to the jaw unneccessarily.  Perhaps as more data comes in about the actual half life of Zometa and just how long it continues to affect normal bone regeneration after stopping the drug, I will be more comfortable considering more invasive dental procedures.

I also am anxious to hear any new data on Zometa from the San Antonio Symposium.  While there is no way I can definitively attribute my current NED status to the use of Zometa, my personal belief is that it along with the Aromasin has certainly been effective at keeping my cancer under control.  Next month will be my 4 year anniversary since diagnosis.

Good luck to your mum and I hope she continues to do well!

Life is not measured by how many breaths we take...but by the moments that take our breath away! ...I am a 14/8 yr survivor of 2 Primary BCs, 23/23 Positive Nodes (Zometa x 5 years) Started Paloma-3 Clinical Trial 4-14-14

Dx 7/14/2000, IDC, 1cm, Stage IIa, Grade 1, 2/7 nodes, ER+/PR+, HER2-Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2-Dx 3/21/2014, ILC, Stage IV, mets, ER+/PR-, HER2-Surgery 08/11/2000 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 08/30/2000 Adriamycin, Cytoxan, TaxolRadiation Therapy 02/26/2001 ExternalHormonal Therapy 05/10/2001 TamoxifenSurgery 12/05/2005 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 12/23/2005 Taxotere, XelodaRadiation Therapy 04/07/2006 ExternalHormonal Therapy 04/07/2006 AromasinHormonal Therapy 04/14/2014 Faslodex
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Oct 24, 2009 07:47PM mcgaffey wrote:

Matic, I am in Cyprus and my onc told me I was able to get Zometa injections two times a year since I am now osteopenic. I am going to up the exercise, my diet and supplements are o.k. for the bones but up my vitamin D and recheck my bones after a year. If they are worse I will go with the Zometa program. If not, I won't. I just don't want to take any more drugs if I don't have to. I am on Arimidex now and am approaching my third year from being diagnosed. Best wishes to your mom.

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Oct 29, 2009 12:35PM matic22 wrote:

Hi all lobular ladies!

THANK YOU SO MUCH !!I REALLY APPRECIATE YOUR COMMENTS AND SUGGESTIONS.Thank you, dear Gitane and LindaLou and all other ladies.Today Mum has been given the first Zometa infusion.I was there at her and she felt fine.Everything is fine now too.We went to ¸her father together and to the cemetery because the first November is coming soon.

I will keep in touch and be well.I can not wait the results from San Antonio in December.It will be soon;)

Matic

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Oct 29, 2009 12:46PM lrsreyes wrote:

Hi Matic,
Good to hear that your mum got Zometa. I read a post by a lady with stage 4 bone mets ( bone scan showed black in a lot of areas in spine,ribs etc) & after Zometa IV monthly & Arimidex her scan 6 months later showed NED.
What do you think Linda Lou;s post Breakthrough for Lobular cancer? I am stage IIIC with mitotic rate 1 grade 1 so I am always looking for good news.

Lou

Dx 5/5/2008, ILC, 6cm+, Stage IIIc, Grade 1, 15/30 nodes, ER+/PR+, HER2-
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Oct 29, 2009 12:57PM hrf wrote:

I had my first Zometa infusion last Friday and it went well with no immediate se's. I have osteopenia and I'm taking Arimidex every day so onc thought Zometa would be good for bones and also hopefully provide protection. I'm not part of a clinical trial and worked through Access Zometa which made all the arrangements. A nurse came to my house to do the infusion. It will happen 2 times a year for 3 years.

BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary

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Feb 3, 2010 01:27AM jhoncena1941 wrote:

Because current clinical trial data does not support continuing infusions for more than 3 years in women who are not Stage IV, we have decided to switch to annual infusions in the hopes there will be more data available by July next year. ccie training Neither of us are comfortable stopping the Zometa entirely until there are either new treatment options available for very locally advanced Stage 3 cancer or strong evidence that continuing Zometa longer than 3 years would be detrimental.

The only other treatment I am getting currently is daily Aromasin which I have been on since April 2006. I have tolerated the Zometa infusions very well with only occasional, brief episodes of flu like symptoms, achyness, low grade temp etc.microsoft 70-270 This happened more commonly with my first few infusions and hardly at all for the last 2 years.

I have made it a point to have the chemo nurses slow down the infusion rate so it takes 30 minutes vs the standard 15 min to infuse. I also request they hang an additional small bag of fluids to supplement the Zometa. Since Zometa can adversely affect the kidneys in anyone who already has 70-290 exam kidney disease or if you are not adequately hydrated, I feel it is reasonable to request these small compromises

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Feb 8, 2010 01:59AM LindaLou53 wrote:

Just noticed that the above post by jhoncena194 has unofficially  "quoted" my previous post and then inserted various links to commercial websites for computer training.  Just a sly way of spamming.  I have reported the post.

Life is not measured by how many breaths we take...but by the moments that take our breath away! ...I am a 14/8 yr survivor of 2 Primary BCs, 23/23 Positive Nodes (Zometa x 5 years) Started Paloma-3 Clinical Trial 4-14-14

Dx 7/14/2000, IDC, 1cm, Stage IIa, Grade 1, 2/7 nodes, ER+/PR+, HER2-Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2-Dx 3/21/2014, ILC, Stage IV, mets, ER+/PR-, HER2-Surgery 08/11/2000 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 08/30/2000 Adriamycin, Cytoxan, TaxolRadiation Therapy 02/26/2001 ExternalHormonal Therapy 05/10/2001 TamoxifenSurgery 12/05/2005 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 12/23/2005 Taxotere, XelodaRadiation Therapy 04/07/2006 ExternalHormonal Therapy 04/07/2006 AromasinHormonal Therapy 04/14/2014 Faslodex