this is Steve, husband of Patricia.
I just noticed your posting and because my wife is an infrequent reviewer of email, she may not have gotten this until sometime next week as we are scheduled to go away for the next few days, so may I suggest that you send her a direct note to her email at ***@****, and upon receiving it, she will send you her cell number and then you can have an actual discussion that may be more beneficial to you, rather than using this thread.
While I can answer all of your questions, as I am actively engaged in my wife's treatment and recovery, I do not want to discomfort you in any way, which is why I am suggesting this course of action?
Don't think twice about emailing her, as there are no vacations while fighting this battle, and she is more than desirous of helping other women defeat this disorder and both she and I are more than willing to share eveything we are learning, as surely as others are teaching and helping us.
I wish you the best and look forward to hearing that you are in contact with my wife.
Hi I am a fellow traveler in a situation very similiar to Patrica M. I have been recently diagnosed with metastatic breast cancer which has compromised some bones in my spine, ribs, pelvis and shoulder. My oncologist has put me on Tamoxefin and like Patircia, I am in the clinical trial ( Denosumab/Zometa). Her posting and the responses were of special interest to me as it sparked some questions regarding my own treatment. Obviously, like Patrica I was perimenopausal ( very low Estrogen - on the brink of menopause). I recently went for a second opinion and I now realize the time it takes to process information (sometimes days) leads to additonal questions. I have not been given Lupron and plan to have a discussion with my oncolgist as to why. Does anyone know of any research that compares use of Tamoxefin alone vs. Tamoxefin with Lupron? If Lupron shuts down ovaries, isn't that effectively putting a woman into menopause. If this is the case, is the Tamoxefin still effective?
I was also interested to note Patricia is having another PET scan. I am concerned about the monitoring of the progression ( hopefully halting or dissapearance) of my cancer. I will be having bone survey's because of the trial but as I understand this offers little information regarding the progression of cancer. Are there certain tests I should be asking to have repeated? What is the time frame for such testing? I have already had a series of MRI's, a PET, Nuclear Bone Scan, and a baseline bone survey. I appreciate this site! Happy Holidays
Great to meet a brave, 12-year survivor of breast cancer, and I appreciate your keen interest in actively researching your treatment options.
Denosumab vs Zometa is a double-blind trial comparing the current standard drug (Zometa) with Amgen's monoclonal antibody Donosumab. Calcium rich foods like milk and cheese will further complement the calcium tablets
Sorry ,I have no idea about the Hippocrates Institute in West Palm Beach.
Regarding the nutritional supplements, you would be benefited from them and hence go along with them.But since your on Clinical trial, do kindly inform the doctor about these and get there clearance.
Wish u the best for the trial and feel happy for you making your life beneficial to others.
Well, as you already know, this is a long journey for us, for me, it started 1995 with the first diagnosis.
What I am most interested in now is utilizing the proper foods and vitamin combinations to complement the Tamoxifen, Calcium Vitam D and the bone meds. I am on a clinical trial for Denosinab and Zometa, gettign one of the two.
I have also heard of the Hippocrates Institute in West Palm Beach and know that it is receiving favorable press from the woman who created the documentary at crazysexycancer.com which was featured on Lifetime channel? But I dont know if I want to actually go into a juicing program, although it may benefit me quite a bit.
YOU ARE MOST WELCOME
IF ANY QUERY DO GET BACK
Thanks to both of you for your responses
Sorry that i could not post a reply earlier. Probably Dean536 has done in depth explanation.
Kindly do stick on to your oncologist's protocol for they are best in deciding the best available protocol on basis of an individual.
Hi. I'm glad you've found the answers useful. Answer 3 wasn't cut off. What I was trying to explain is that the decision to give a certain cancer drug (in this case aromatase inhibitors) is a complex process which the doctor and the patient go through (assuming they talk about it). The "best" drug will ultimately depend on the patient's unique situation. The doctor's task is to find out what all these factors are and formulate a treatment regimen which is "tailor-made" for his patient.
thank you for your answers, they provide confirmation for what I have concluded and coincide with my treatment to date.
Your answers though were cut off at answer 3, line 4, was there more?
thank you in advance.
Hi. I just want to give you some additional information regarding your questions about hormonal treatment in pre-menopausal women with Stage IV breast cancer.
1. Surgical removal of the ovaries is comparable to using Leupron (leuprolide) or related drugs (called LHRH agonists) in terms of treatment efficacy. The addition of Tamoxifen to either one of these treatments further enhances the treatment efficacy (increased response rate, increased survival and increased duration before disease progresses).
2. Aromatase inhibitors (AI), when used alone, will not work for pre-menopausal women. Before giving an aromatase inhibitor, an additional step has to be taken to suppress the ovaries' estrogen production. This is done either by removing the ovaries surgically or giving drugs like Leupron to induce menopause.
3. As far as I know, there is still no hard evidence available for the use of LHRH agonists (e.g. Leupron) PLUS an aromatase inhibitor as INITIAL hormonal treatment for premenopausal women with metastatic breast cancer. The treatment regimen with proven benefit as initial treatment is the combination of tamoxifen plus LHRH agonist. The current guidelines suggest the use of aromatase inhibitor/LHRH agonist combination only as second line treatment, after failure of an initial treatment with Tamoxifen or Tamoxifen/LHRH agonist.
4. There are ongoing clinical trials (no results yet) which seek to compare the effectiveness of Tamoxifen/ LHRH agonist vs. Aromatase Inhibitor/ LHRH agonist combinations. These are the SOFT, TEXT and PERCHE trials. Those being tested in these trials are pre-menopausal women, but with non-metastatic (not Stage IV) disease.
So to answer your questions:
1. What is the consensus of survivors regarding staying on Tamoxifen and keeping the ovaries? Answer: There's no difference in terms of efficacy whether you keep your ovaries or stay with Leupron injections. Tamoxifen gives an added benefit to either surgery or Leupron.
2. Has anyone actually gotten a better result with Tamoxifen, rather than the Aromatase Inhibitors? Answer: Aromatase inhibitors are better than Tamoxifen when used for women who ARE menopausal. Aromatase inhibitors when used alone, will not work with pre-menopausal women, unlike Tamoxifen. There is still no evidence available whether AI/ LHRH agonist combinations are better than Tamoxifen/ LHRH agonist combinations.
3. Are the Aromatase Inhibitors the best there is? Answer: It depends on the situation. A lot of factors have to be considered like menstrual status, the stage of disease, other medications previously given, and other diseases that the patient has (e.g. osteoporosis) which affects the decision whether the drug should be given or not.
thank you for replying.
I would not ever consider switching anything that was not in accordance with the excellent treatment that I am receiving.
I am currently taking Tamoxifen for only 5 weeks, so this is a very fresh case.
I only began inquiring about the aforementioned because I thought that I shoudl remomve my ovaries to go right to the aromatase inhibitors, but after consulting with my oncologist, he believes that this is an unecessary step at this juncture because the Lurpon is doign the same thing chemically without having to put my body (and mind) through the surgery.
I go for another pet scan in 3 weeks at which time I will know how the Tamoxifen is working.
Hi Patricia M,
Sorry to learn about your condition. Tamoxifen and aromatase inhibitors both are effective hormonal agents. With respect to your query of switching over to aromatase inhibitors, kindly do consult your surgeon and oncologist before doing so. Clinical studies have shown that aromatase inhibitors had a slightly better disease free survival period than tamoxifen alone or tamoxifen+ aromatase inhibitors. But these results do also have certain other parameters which have to be analyzed. Hope you would not do the switching over of chemotherapeutic agents without your doctor's approval.