Stage 1, grade 1 and pre-menopausal
Comments
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VR Wondering about Dr. Gnant's Zometa study - was this for early stagers, Grade 1?
Thanks all for contributing to this thread - lots of great info.
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Joy... All of the women in Dr. Gnant's study were premenopausal, node negative and receiving ovarian suppression. 76% of the women were Stage 1. The grade was not noted. None of the women experienced renal or jaw issues.
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VR, you've been so helpful, thank you.
One question I hope to pursue regarding my own treatment (and perhaps some of you already know the answer to this, so forgive my ignorance), is once the SOFT trial and the TailorX study outcomes are published, if I can pursue their recommendations despite the fact that my adjuvent treatment (tamox, most likely) is already under way.
If SOFT shows the benefit of OS + Tamoxifin for premenopausal women, can I benefit from starting OS a year out from the beginning of my hormonal treatment. (I would assume so.) More drasticly, if TailorX shows the need for chemo in the 11 - 18 group, is it too late to do a chemo regimen... 3-4 years from now, once that information has been published!? (I would assume... yes, it is too late.)
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Esmerelda....My guess is that if the SOFT trial confirms that O/S is effective, I think patients will be lining up to receive it regardless of where they are in their treatment protocol. Regarding chemo, I don't think that is likely to occur.
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Right, my MO isn't starting OS until 5 months out from surgery. I asked the same question about doing chemo later and she said I really need to start it at most 6 weeks out. (I didn't end up needing it).
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Esmerelda Interesting point about the delay of OS - I asked my onc today that very question, and her response was "nobody knows". She said that OS is of greater benefit to pre-menopausal women, and she groups peri-menopausals with post-menopausal women, when thinking about ovarian suppression. As I am 50 and knocking on the door of menopause, I'm deciding to not go for OS. If I were in the States and had easy access to medical care, my decision might be different. If I were 40 years old, I would be making the effort to suppress ovaries. Both oncs that I've seen this week do not recommend OS without Zometa.
I look forward to the SOFT trial results, and as VR says - may be one in line to start OS treatment, should the results show great benefit. The SOFT trial, from what I understand though, will not indicate the benefit of OS if it is delayed.
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Where's a crystal ball when you need one.....
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Indeed, VR - wouldn't a crystal ball be great right now?
Something that I find interesting. I've had 3 oncs tell me that the newer data coming in about the oncotype test is showing that prognostics are even more favorable than what is currently being reported. The recurrence percentages may be even lower than what is being shown on our reports. Has anybody else heard this too?
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Joyh119, I was told something similar as it relates to the hormone receptors. My MO told me that because I am 99% positive my score is probably really less thab then 19 that I am.
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Joy....You can't go by what my doctor said about me because even though I was Stage 1 Grade 1 Premenopausal, my type of bc, mucinous, the OncotypeDX test is not as strongly validated for it, as it is for the more traditional types of BC.....With that said, he did think that with my score of 15....the OncotypeDX test was OVER estimating my chances of distant recurrence. Furthermore....if you look at your score.... there is a "range." So, while I might have had a score of 15 which means my chances of distant recurrence is 10%....the range is between 7-12%. My doctor thought my chances of distant recurrence was closer to 7% rather than 10 or 12%....with Tamoxifen.....
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As treatments improve survival rates are improving but it takes years for the improved survival rates to filter into established evidence. So it is widely thought now, for example that the adjuvant on-line! that is used by oncs to estimate survival is overly pessimistic and certainly did not until recently take account of HER2 status for example. With oncotype, the data are from the 1990s as It studied 10 year survival rates and landmark study was published in about 2005. Treatments have definitely improved since the 90s, so it seems logical to assume our stats may be better now! Of course we still have to live with and accept the uncertainty that this all brings which is another issue!
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I'm happy to think that the prognostics are better than the percentages given, but it's sobering to think about the "what-ifs" in the years to come. There are no guarantees for any of us, BC or not.
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Hi ladies, it's been a little quite on our thread so I thought I'd throw this out there... Have any of you grade 1, stage 1 ladies considered Metformin? I've been reading the active thread about the clinical study, and have noticed that a lot of women who cannot participate in the study have simply had their oncologist or general prac prescribe it, because it looks like it really might be a good thing. It's a trusted, old and cheap drug that has practically no side effects (loose stools at the beginning).
Because I am doing chemo and just started Tamoxifen last week, I am really open to adding an additional regimen and this seems to be a no-brainer. Of course, the results of the study won't be available for 5 years, but preliminary results might be available in 2013. If you are not aware, it's a drug that treats type II diabetes. They've found that the cancer incidence and recurrence among people on Metformin is low...
At any rate, I'd love to hear your thoughts. I'm considering talking to my docs about it. Thanks!0 -
I ran it past my doctor and he wants to see more data before he prescribes it. However, in recently diagnosed patients, he is offering participation in clinical trials. My friend is a pharmacist and diabetic and takes it. She has side effects from it. I have heard good things about it, none the less, I am in no hurry to try it until there is more evidence.
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VR, Do you know what type of side effects your friend is experiencing?
I'll be interested to see what my onc says - if they'd be willing to prescribe it based on preliminary findings in 2013, if the outcomes look good. Hmmm...0 -
She gets very bad stomach cramps. Her doctors also started her on a statin and she gets occasional muscle aches too. The endocrinologist is monitoring her very carefully. She has a ph.d. in pharmacology and probably knows more about the meds than the doctor. I asked her once if she thought I should consider taking it and she thought unless I really needed it, she wouldn't recommend it. I know it is becoming a very popular choice, and the data appears exciting, but I am very skittish about adding more treatment until there is more data. Furthermore, since Metformin is a drug to treat diabetes, if I did decide to take it off label, I would want to be followed on it by an endocrinologist.
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Interesting, VR. On the Metformin thread the side effects seem very minimal. I'm curious about her statement to take it only if you "really need it".... I guess with any of these additional treatments, how would we know if we need it? Is she inferring that you'd want to take it only if things got worse and you had a recurrence? My understanding is that Metformin may in fact block/kill cancer stem cells which are believed integral to the development of mets. If that is true, then I think we all need it. Hmmm. Thanks for talking this through with me.
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Hi Esmerelda,
I have been taking metformin for almost 1 year and I take 1000mg per day. I had blood tests in 12//11 and then repeated them last month. I really hope for the best. The MO's dismiss it... At first, it had me running to the ladies room but that stopped and i have no symtoms at all. I do take it with food.
I really respect VR and believe she is brilliant (yes VR- you are amazing) and I guess your hesitation is that it in not proven at this time?
take care
CR
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Thanks for chiming in, Chocolaterocks. When you say your MO's dismiss it, do you mean they were not on board with you taking it!
(and yes, VR is indeed brilliant!
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Metformin is used to treat diabetes, but isn't it for keeping blood sugars low and i thought that would be dangerous for non-diabetics as you could go into hypoglycemia and that could be just as dangerous, in fact it is more fatal that way then having it too high.metformin may help reduce mets with cancer, but cause other issues unless you have another medication to keep bs levels at reasonable levels. i don't know about that one, i have seen a few people thru working at nursing homes and seeing them acomatosed because bsls drop too low and we have to bring it up. i would be abit scared with taking that unless i was a diabetic and thank God i am not. take care, warm hugs
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My understanding is that if your sugar is high it will lower it but if not it will not drop you into hyperglycemia. I asked my docs because my glucose number was 99 (one point from pre diabetic) but they said no.
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Esmerelda
The MO I liked who moved 3,000 miles away was not opposed to it but worked for a hospital and told me to get it from my primary. At my last visit with her 12/11 she was just about positive about it... The MO at the famous big city hospital that I saw this month would not even discuss it or anything but tami and oopherectomy. Hope that clarifies the situation.
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Thanks, Chocolaterocks. I am gearing myself up for a discussion with my onc team about it at a a top-rated research institution, expecting them to say no... If that's the case I'm considering asking my PCP... But it does seem a bit unethical (not exactly the right word I'm looking for) to go around my onc's decision. This should prove interesting!
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Esmerelda,
Metformin is a gamble- its not "proven" at this point to work or not to work. If it has no serious side effects for me, I am in. If it turns out, it becomes proven then I will feel i am ahead of the game. I absolutely would be in one of the 12 (maybe 13) phase 3 trials going on in the USA or Canada if I qualified. You had to be a 1c to get in and I am a 1a. Therefore, its like conducting my own trial on myself for $3.33 per month- very reasonable. Hope this point of view- assists.
regards
CR
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Esmerelda...regarding "if I really need it"....What my friend was saying...was...Do the risks outweigh the benefits? Having a Stage 1 Grade 1 "favorable" mucinous breast cancer, my chances of recurrence are minimal. Likewise, any therapy that I choose will only give me single digit benefit. So my need to take any therapy is based on how much absolute benefit I might receive AND what my comfort level is. When I chose to do the Lupron (Ovarian Suppression), I was close to menopause and believed, because I was highly ER+ the benefits outweighted the risks (heart disease and osteoperosis). Had I been younger, and/or had a more aggressive tumor, I might have decided differently.
My pharmacist, walking companion, also a voracious reader friend, is also Indian. So, during our 3 mile walks, we have many discussions about Eastern and Western medicine. Because she is so familiar with the risks of medications, she advocates doing as many lifestyle changes as possible before popping a pill. When I was diagnosed with bc she was also on a turmeric kick. I've since added turmeric to my diet. Could that reduce my risk of recurrence? Time will tell....
A few weeks ago, researchers suggested that a "simple" beta blocker might reduce the risk of getting an aggressive breast cancer. The researchers also suggested that it might reduce the chances of getting a recurrence as well. The data is very preliminary. They don't suggest that everyone start taking one because the risks include lowering blood pressure and heart rate. No one needed to tell me that because the DH collapsed from taking a beta blocker and had to be hospitalized.
Which leads me back to what I said previously. If you are considering taking these medications, such as Metformin, I really think you need to be monitored carefully. If the MO doesn't want to prescribe it, then the question is, who will prescribe it and how will you be monitored? Furthermore, the $64 question is, how long will you need to do the therapy? I knew when I decided Lupron was right for me, my MO and I agreed that I would do it for two years and then begin checking to see if I was menopausal. From my perspective, it is often easier to decide to start taking a medication than it is to decide when to discontinue it. I would want to know BEFORE I begin taking a medication how long I will need to take it.
Good luck.
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Just seen the metformin thread but I am dashing out just now. I will chime in on this one tomorrow!
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Excellent points, VR. In considering Metformin, I too have wondered about whether/when/or how one discontinues it!
As I am just exploring this, I don't yet have answers about which medical practitioner would follow me. I am really interested in hearing what Annicemd has to say, as she is an endocrinologist, yes?
Thanks again for the taking the time on this.
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Hi all! really interesting string of thoughts re metformin. VR always summarises evidence very eloquently and I will not reiterate what she has already said but totally agree with her position.
As an endocrinologist I have prescribed metformin for many years for type 2 diabetes and polcystic ovarian syndrome. It is true that there are some Gastro-intestinal side effects, particularly in higher doses but it is also true that with perseverance the side effects decline with time. metformin increases insulin sensitivity but not insulin secretion and therefore it will not make a non- diabetic hypoglycaemic. From a tolerating the drug perspective many people have no adverse effects and it sometimes even causes weight loss ( small amount and it is not licences for weight loss purposes). So for its conventional uses it is generally a good drug. The main concerns with metformin are related to more complex situations; In certain situations and when inter-current illness occurs in someone taking metformin, lactic acid can build up in the blood and lead to a more severe illness than would occur if the person was not taking metformin. This is called lactic acidosis. Of course you never know when an inter-current illness is going to hit e.g. Water infection/chest infection etc but you can't assume this will never happen. Metformin can also cause this lactic acid problem in people who have kidney problems and in particular If someone is having any type of scan using an intra venous contrast injection. A worst case scenario could be acute kidney failure in this situation. I have seen all these adverse events occur many times in my career and it's a dark side of metformin that is not widely publicised.
Now of course as VR stated clearly in the context of treatment for early stage breast cancer the main issues we need to consider when deciding on a treatment regimen are efficacy and safety. Using metformin for BC has no established evidence as yet so we don't know what dose is needed or for how long it would need to be taken for it to provide a significant benefit and we don't know what the likely incidence of harm from the many situations I have mentioned above that would be expected to occur in this "patient group" of course the data are much more established for diabetes.
I therefore personally do not feel that there is enough evidence at the present time to convince me that a benefit of taking metformin would outweigh potential risks/harm. I am also already being quite aggressive with my treatment with tamox/zoladex/zometa which I am tolerating well. If I could not take tamoxifen then I may consider metformin as an alternative treatment but I would be aware this would be a "gamble" until the evidence comes through. When I finish tamoxifen I will certainly consider metformin if the data are accumulating by then because BC recurrence can occur many years down the line so I like the idea of taking something once tamox is finished and that may be where metformin ultimately obtains a licence. It would however be naive to think metformin is totally safe for the reasons I have stated above and if every woman with BC starts taking it there will be situations where women come to significant harm from it. So making a decision needs to be based on an understanding of the drug and how comfortable you are with accepting the risks and how they balance with evidence based benefits!
Hope that perspective helps!
BW
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Annice I have a question for you. In April the endocronologist checked my hormones and my estrodiol came back below 15 and he said I was post menapausal. Six months previously my numbers were much higher. Friday my MO checked them and they are back up to 348 which says that is ovulation cycle I was compaining about breaking out with acne). With the low drop does that mean I am going through menapause? I just turned 50 and had a hysterectomy when I was 32 but kept my ovaries so they are trying to determine what my body is up to. I go back to the MO in October and will discuss all the numbers then but just thought I'd ask. Also when I had my Estrodiol checked in April I had been off of tamoxifen for about 6 weeks due to surgery. With this check I have been back on tamox for 3 months. I know tamox does not stop your estrogen but somewhere I read that it can increase your ovary activity.
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Hi sherry, you are peri-menopausal and not yet in full menopause. This can go on for some time, months or even years. Your estrogen levels are swinging between pre and post meno levels. Tamox can increase estrogen in pre menopausal women's but would not affect you going into permanent menopause, so this is your own system in a bumpy transition!
Annicex0
