Calling all triple negative breast cancer patients in the UK
Comments
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Hello christina1961,
Thank you for your post. I think I would listen to your oncologist rather than you general doctor. I am concerned to read on some of the threads that women are being given them by their general doctors and seem to be taking them under their directions. Even worse they may be taking them without supervision. We have to remember that metformin is not licensed for breast cancer, only for the treatment of diabetes. I cannot understand either why a doctor would prescribe it to someone for the purpose of losing weight.Metformin (brand name Glucophage, used in the following combined preparations - Avandamet, Competact) lowers your blood glucose level in diabetes sufferers, so, if you take it when your blood sugar is normal, I would think that you would be in danger of causing it to go too low and risking hypoglycaemia (dangerously low blood sugar).
I shall be very interested to know anything you find out about what exactly the randomised trial for metformin is all about. It will be interesting to know what your oncologist says about it all on Friday.
If I were you I would give my body a good rest before taking anything else.
I should not worry about having a little sugar in your diet. I do believe that we have to do everything in moderation. I am pretty strict but I could not say that I am on a no sugar diet either. Most of the time I can avoid sugar, but in order to live normally and enjoy life it is not always possible. I think the body can probably cope with small amounts, and sugar is an energy giver. I do not believe that you can avoid cancer by avoiding sugar. I think it is more complicated than that, even though we are told that sugar feeds cancer cells. There are no guarantees. In canned foods sugar is often used as a preservative, but is often low on the list of ingredients. If I look in my cupboard today I have some fig biscuits (my husband must have a few biscuits!) with a little sugar in them and a bar of 90% black chocolate with a little sugar. Even bread will have a little sugar in it to allow the yeast to rise.
Going back to metformin, I did read something about the chemotherapy drug doxorubicin being more effective when combined with metformin, but I do not know how they have come to that conclusion.
That is about all for now. It is Friday tomorrow, so another week is drawing to a close.
Best wishes
Sylvia0 -
Hello Everyone, I was looking through the active topics yesterday and was surprised to find the thread Not a Typical Triple Negative,on which I used to post back in 2009 when I first discovered this forum. Someone had posted and brought it back up to date. I saw familiar names with whom I had shared posts, names such as LRM216, mitymuffin and Karen 3. I found it interesting to read our posts again. If any of you are viewing this thread please feel free to say hello.
Best Wishes,
Sylvia.
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Hello Again,
The thread is Not a Typical Triple 3. AmI alone here?
Sylvia.
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Hello Sylvia and everyone! I have been lurking, but have been feeling overwhelmed and sad. I am doing fine, rads are going very smoothly so far. My problem is the emotional side, I feel like I am just waiting for the other shoe to drop. I am afraid to ask my MO if my prognosis is more like a stage 3 or like a stage 4, not sure I want to know, but I do want to know if there is a chance of me remaining cancer free. I feel like since I am technically stage 4 that it is just a matter of time for a recurrence. I have been exercising a bit everyday and eating a little better. The other patients are so sweet at my rads center, but one man, who is 83 and has mesothelioma (sp?) and has been in alot of pain lately. I really struggle with seeing people in pain, and his wife is just so lovely. I know death is a part of life, but I just do not deal with it very well at all. And I wonder if I will be suffering soon and also and wonder how in the world will I be able to deal with it with all of my anxiety and depression issues. Sad to see that Bruburn passed away and how some of the other women are in hospice. they deal so beautifully with all of this and I don't think I will be able to, I will just be a crying lump full of terror. I have been trying to distract myself with school and shopping for a car. We have 2 gas guzzlers and with the price of gas we have decided to try to find an inexpensive car that gets good gas mileage. Problem is I like the 2 cars we have, but filling up the tank is very expensive and does not last long at all, so we need to get rid of at least one of them and find something more reasonable. Back to cancer, does anybody know if complete response in a barely stage 4 patient can have a longterm remission? I know I should ask my doc, but I am not sure if I want to hear what I believe, that it is just a matter of time that I will recur, and probably sooner than later, and I am not ready. Then my mind goes back to should I just quit school? It is expensive and time consuming, even though I enjoy it, is it worth it? Sorry for such a heavy topic, but I do not know who to turn to. My husband doesn't like me thinking like this and I don't want to scare or burden my friends that don't know what it is like. I do see a therapist and she has increased my visits and I am on an antidepressant. Just don't know how else to feel better emotionally. Thanks for listening:) Oh, I wish I had a strong faith like my husband, I am just not sure what I believe and my philosophy class is not helping the matter!
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I too mostly just lurk, but Bak you absolutely must NOT quit school... you enjoy it so that's all the reason you need to continue! The more you do which is not cancer-related the better. That's one of the reasons I am less involved with the BCO threads; selfish though it might appear.
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Thank you Maria. I do enjoy school, but it is so much work with my "chemo" brain. Hoping it will help with that. They say if you don't use it you lose it, right?
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Bak, I was reading recently about chemo brain and what I came away with was that the permanent effect seemed to be limited to a slowing of the processing speed but no real decline in cognitive ability. The other effects fade away with time - now I may not remember all of it since I am still in the 2-3 year period where the short term memory is affected!
I am less than 3 weeks out from Halaven and I've noticed that my ability to spell has improved already. I still have trouble with what I call "place" memory. "Place" memory to me is when I tell myself to remember to do something later in the day. I invariably forget it, so I am trying to use lists, etc. Please don't give up on school if you enjoy it. I was told I had a 50% chance of recurrence before the Halaven trial by 3 oncologists. Now I realize I am stage 2 but I did not have a good response to chemo, thus the high risk. My oncologist refuses to give me a percentage now - he told me Friday "50% are going to do well, and 50% are not going to do well, and you must believe you are going to be in the 50% that are going to do well." Then he added, "Look at all the hoops you have had to jump to get this far." I know that is not a real answer, but actually it is the only answer there is. No one knows. No one except you has your particular situation and they don't really understand and continually argue about what poses a greater risk. Is location of the tumor important? Argument. Are 5-10% ER receptors worth taking anti-hormonals? Argument. And on it goes. We have to just keep living like we are going to live. I've taken care of my will, etc., so I am realistic but I am going to keep forging ahead. I have also spent less time on the boards lately because I tend to worry more.
I have an acquaintance who had 5 positive nodes and Stage 3 triple negative. She had a lumpectomy and rads, then chemo. She is over 5 years out.
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Thanks Christina,
I guess we all just look for positive information for our situation. I know my docs don't even know what will happen. I fear the unknown, and somehow, I think if I knew what to expect I could handle it better, but there is no way to see int the future:) It seems like when I become comfortable, something bad happens. I need to get out of the way of thinking. It took me a long time to move on from my first cancer, and I just don't want to waste time worrying anymore but I can seem to stop. I have to concentrate on the positives, which in my case is complete response. I need to talk to my mo when I am done with rads to see what he has planned for me. He may suggest more chemo, I really don't know.
So glad to hear you are done with your trial! It seems like Halaven is a good treatment. Short term memory makes sense! I study and I forget everything by the time I take the quiz! But I do ok on essays, but not multiple choice!
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Bak, I wonder if there is a clinical trial near you that you could participate in? I am thinking of doing the metformin trial also. And please realize, I worry as much as anyone - so I should read my own advice! LOL! I am inspired by you plunging ahead with school. . I am going to enroll for a class this summer and start making plans to change my career. I've felt so stuck for so long in what I do for a living and this illness has reinforced my desire for change.
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Hello bak94
Thank you for your post. I was nice to hear from you. I was sorry to read that you have been feeling overwhelmed and sad. All this treatment is probably getting to you, but hang in there, because you have nearly finished. I was glad to know that all is going well with your radiotherapy. That is one positive you must hang on to.When you have finished radiotherapy you need to take a good break and switch off everything to do with cancer. Look on the positive side, try to stop worrying, and try to stop jumping ahead with the "what ifs". You need to concentrate on one thing at a time. Remember, I posted long ago that it was a good idea to imagine a chest of drawers and put all you problems into it, and then take one out and concentrate on that. At the moment concentrate on your radiotherapy and get to the end of that.
As for the emotional side, concentrate on enjoying your day and doing the things that make you happy. Avoid doing anything that makes you have negative stress.
I did not quite understand what you mean by being afraid to ask whether your prognosis is stage 3 or stage 4. What were you told your stage was when you were diagnosed for the second time with a new primary in the other breast? Whatever it was, that is what will be on your records, but when you have finished your radiotherapy, you should be told that you have had a complete response to all your treatment or not. I see no reason why you will not have that complete response and be in remission. I would stop worrying about what your stage is. When I was diagnosed back in June 2005, I was not told anything except that I had all negative receptors and therefore the prognosis was not good. I did ask questions and did get told that I was grade 3. Because I had a large tumour, 6cms plus, I worked out that I was probably stage 3, but found that charts differed. I actually took no notice of it. The chemotherapy shrunk the tumour a bit, but I still had a tumour left and therefore had surgery and radiotherapy. After that I was told by my oncologist and breast cancer surgeon that I had an excellent pathology report and there was no visible evidence of cancer cells. Only my sentinel lymph node was affected and that was removed during surgery. While I was going through chemotherapy one registrar told me that I would not be having surgery and the news was not good! I asked him if that meant that I was terminal, to which I got no response. He just said he was sorry to give me bad news. Again I just ignored it all. No one can say definitely in this cancer journey what will happen. Just be happy today and forget about tomorrow. Above all, do not focus your mind on recurrence.
If there are threads that make you feel frightened or depressed, the best thing is to avoid them. I find that just concentrating on this thread is more than enough for me.
I was glad to know that you have nice people at your radiotherapy centre. Try not to focus on the suffering of others at the centre. There is plenty of pain relief and the medical staff will try to keep people comfortable. As I have said before, there are many cancers much harder to treat and much more difficult to tolerate than breast cancer.
I am not familiar with the name Bruburn. Is that somebody on the TNs or on the Stage 4 threads? I know we feel very upset and frightened by those going into hospices or who are fighting for their lives. If all of that has a negative effect on you, avoid it all. It may all be sad, but you have to concentrate on yourself.
Of course you can have a long term remission with any stage. Even with metastatic breast cancer, that is cancer that has spread from the breast to the lungs, liver, brain or bones, women can live for a long time. There has been a discussion somewhere else about whether positive lymph nodes constitutes metastases. My understanding is that it does not, because it is confined to the breast area.
As for your studies, if you think they are affecting you negatively, then you can always give them a rest and return when you have recovered from treatment and had a good rest. If they keep your mind off cancer, and interest you, then stay with them, but do not take them too seriously. If you feel you would prefer to spend your time and money doing something more pleasurable and less demanding, do that. Studies do not always have to be intellectual.
It sounds as though you have a sensible husband and probably sensible friends, so I am sure they will not mind sharing your fears and anxieties. Remember though, not to overdo it and allow cancer to take centre stage.
At least with the problem of your cars it is something that your common sense can solve. The days of cheap gas have gone and the western world has to adapt to smaller cars. Over here there are some very economical little cars that look very smart. Unleaded gas here is £1.40 a litre. How much is your gas?
Try to have a good week and take care of yourself.
Please keep in touch and post about anything that is dragging you down.
With very best wishes
Sylvia.0 -
Hello Maria_Malta
Thank you for your post. I was glad to know that you are still reading, even if you are not posting much.You are right to tell bak94 to continue with her studies if she enjoys it. You are also right to say that the more you do which is not related to cancer the better and I can understand your point of view. We all want to move on. However, the survival of these threads does depend on people who have survived the journey staying on to help others. I am now approaching seven years since diagnosis, I went through all my cancer treatment without the benefit of breastcancer.org, because I did not discover it until about the summer of 2009, which was way past the end of my treatment. I actually discovered it through looking up information about an over active parathyroid gland (hyperparathyroidism) which causes high levels of calcium in the blood and which some research shows to be a possible cause of breast cancer. I started this thread about eighteen months ago now to help others.
Post when you can Maria, not necessarily about cancer, but your everyday life. Over the past months you have been an important part of this thread.
Very best wishes
Sylvia0 -
Hello chrisitina1961
Thank you for your posts. I need to take a break now, but will be answering later on today.Sylvia
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Hello chrisitina1961
Thank you for your post. I would tell anyone not to worry about so-called chemo brain. I am sure that it does not affect everybody and should not be long lasting. I do not remember having any problems with cognitive functioning. I think in today's world, with so much to do and so much information overload, that it is always a good idea to have lists on a daily basis. I always write out my lists for the following day in the evening before I go to bed. I often have two or three lists to get through. I have a list for what I want to do on this thread, a list for the things I have to do in my role as a volunteer director in my apartment complex, a list of people to phone, depending on me for help and support, shopping lists etc. I have a good memory but I prefer to work through these lists rather than try to store it all in my head.Is it routine practice in the US for the experts to tell patients about their percentage chance of recurrence? I do not think I would want to know, as it could be discouraging, and does anyone really know where cancer is concerned. I do not think it is standard practice here, but I cannot be sure. I cannot see how a patient is going to put themselves through treatment in order to go into long term remission if some oncologist starts going on about percentage chance of recurrence.
Chrisitina1961, you are right. Nobody knows where we are going on this journey. We are all alive today and that is all we can say. You keep forging ahead and believing in your self.
I can understand about being afraid when you read some of the threads, but other people's situations are not yours.
Some Brits have also made a great contribution, such as TEK2009 (Tessa), Josephine and Karen3. I hope you are all OK.
On this thread we are a small group that posts and we all keep going together. You, bak94, mccrimmon324, BernieEllen and Maria_Malta have been the mainstay of this thread, along with me. Look at the journey we have made and we are all alive going through our daily routine. As I have said before, we are like a group of friends and we can come on here and discuss anything we like. I sometimes think there is too much complicated information coming on here from the internet, overload information in fact and medical jargon that may frighten and mislead us. We need to know only the basics and get through our treatment.
I hope all of you will have a good week and try to make it one free of stress and worry. Easter is only five weeks away and let us hope it is a nice spring-like weekend.
Best wishes to you chrisitina1961 and everybody else. Focus on living and enjoying yourselves.
Sylvia
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Hi Sylvia,
It does sound like you went through alot with many uncertainties also. At first they told me I was stage 3 but a doctor that read a ct put down stage 4 because of where I had a positive node, possibly a mediastinal node instead of an internal mammary node, but it was in line with the internal mammary node, they were connected and big! I did have a complete response, nothing showed up on scans and in the path report, of course the nodes were not operable, so no path report on them, only the breast and axillary nodes (2) which were all clean.
Bruburn was slightly er positive and brca 1 pos. like me. She was young and smart with young children. She was a sweet and wonderful person.
This week is much better for me. I am continuing my pt and exercise program and starting feel some real progress. They have you start out so slow with the exercise, but seem to be building up quite quickly.
Our gas cost about 4$ a gallon right now, it is a huge expense with the amount of driving I do to get to my treatments, but by the time we would find a different car I will be done with the daily appointments and I don't know if it is worth the expense and hassle of buying a different car. Our cars are in good shape and we like them. One is a truck, which we need to pick up hay for the goats!
Your case seems similiar to mine! I was told at one point that surgery may not be necessary for me also, because of the inoperable nodes. After I had a great response to chemo they changed their mind and said I needed surgery. My doctors always seemed cautiously optimistic. They did causally give me some percentages, like at first my surgeon said 50/50, but then after my complete response he said 90% chance it would not come back, which I think was overly optimistic, but I did see those stats for stage 1-3 complete responsein a study, but since I am technically stage 4 I wasn't sure I fit into that. But, it is what it is, the numbers don't really mean anything. We can just live our lives the best we can, right?
Have a great week!
Brenda
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Hello bak94 (Brenda)
Thank you for your post. You always have something interesting to say. I noted what you said about the mediastinal nodes, one of which you had positive. Since you had a complete response, I would not worry. The chemotherapy probably got rid of any problems.I was glad to know that this week has started better for you and I hope that it will continue. I was glad to know that you arre making real progress with your exercise programme. Keep up the good work.
I was interested to know about the price of gas in the US. Yours is still much cheaper than here in the UK. How far are you having to drive from your home to get to your treatment places? That must be quite tiring, especially when you were going through chemotherapy and now while you are having to travel for radiotherapy on a daily basis. It will soon be over.
I suppose that if you will not be driving so much after your treatment finishes, you might just as well hang onto your old car. I think eventually we shall all have to adapt to much smaller and more energy efficient cars, especially with all the trouble in the oil producing countries. Can you imagine the chaos in the western world if the oil supply is cut off! Electric cars or hybrid cars are being produced here, but they are very expensive and I think it will take a very long time for them to become current. If you like your cars and they are in good condition, I would stick with them.
I was wondering whether your goats are for your own use or whether you produce milk and cheese. How many goats do you have?
Once again. I say do not worry about these stages and grades. We cannot do anything about them and I think they are meaningless if we have been told after treatment that there is no evidence of disease.
Are you still taking Zometa and are you on it for good or will you have rest periods?
What is the weather like in Seattle at the moment? Here it is very variable and still quite cold for Exmouth.
Please let us know all about your philosophy classes, so that perhaps we can have some discussions. I am particularly interested in existentialism and Jean Paul Sartre. I firmly believe that mankind had no preordained purpose, that there is no meaning to life, and that it is up to the individual to give meaning to his or her life.
I think it is more important to be able to write essays than to be able to memorise things. It is especially important to be able to reason logically and to get from A to B.
What kind of reasoning do you do for pleasure?
Keep enjoying the week.
Best wishes
Sylvia0 -
Dear Sylvia and friends, yes, these threads have really helped me get through treatment, and although I don't actually write in that often I read 3 threads a couple of times a week, and post when I feel I can make a contribution. In actual fact I've just joined a Breast Care Support Group here, as well as joining a Pressure group working towards improving facilites for women with bc, as I really feel I'd like to give something back and can contribute having gone through the whole nasty but necessary cycle so recently. I have a check-up with my oncologist tomorrow week and intend asking him about metformin to see what his opinion is.
The 30 year old niece of a friend of mine has just been diagnosed with pancreatic cancer...she is a doctor herself and has a 1 month old baby. What can one possibly say..it is just too sad.
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Sorry i've been away for so long. Was in england. Home now and hubby has just bought me some new babies. Twin boys 0 -
Oh Bernie, what kind are they?
Sylvia, I have 5 goats. it's kind of a long story, but basically 4 of them are goats we rescued from an abandoned house, they were close to starving when we found them. We do not get milk from them, they just help keep the blackberries down, and they do a great job!
I am due for zometa, I am now on the every 6 month schedule now, it was every 4 weeks.
I want to believe we are here for a purpose and that there is a higher power, but I have my doubts! I love the philosophy class, but I think my class is a little slow (comments made by the professor) which is good for me, as I am still a little slow myself:) We just finished ethics, Utilitarianism and Kant's categorical imperative, and now moving on to politics, John Locke and Rawls. Currently I am reading Man Seeks God and have enjoyed it so far. The author thinks a lot like me and has a quirky sense of humor.
My treatment is about 35 minutes away one way, about 18 miles. I love my car but it has 110,000 miles on it! My husbands truck has less, so we should really get rid of my car, we need the truck. I was planning on driving and maintaining my car until it completely died, but it is a SUV and I really don't need such a big car. I did at one time as I was a Real Estate Agent for about 6 years. It's a great car and I would get probably over 200,000 miles on it easily with little mainainence. It's an Acura and they seem to last a long time!
Maria-Sorry to hear about your friend's niece.That is so young to be facing pancreatic cancer.
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Morning everyone. I went to England to stay with my friend. She had to have an emergency hysterectomy due to the nasty C word. so far everything looks good and clear. She is back here with me now until next tuesday. That will take her up to the six week recovery time, so hopefully everything will go well from there.
It will take me a while to catch up on the posts.
Take care.
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Bernie nice to 'see' you again and love your goats! Amazed that you have 5 of your own Bak! It must mean you both have enough indoor and outdoor space to keep them. Excuse my ignorance, but what do they eat apart from grass? My youngest daughter keeps pestering me to get a dog, and tho' I love them I just cant face the commitment, as well as not wishing to leave a dog alone all day...cats and tortoises don't mind, but I think dogs do..
Was wondering at what stage do we start being 'out' of cancer.. when we were operated, when we finished rads? ie when people talk about the first 1-3 years, at what point does one start counting?
Bak, your course sounds really interesting...will you have to sit for exams at any stage, or are you assessed by writing assignments? I think I'd have difficulty actually sitting for an exam now, as I really don't trust my memory after both menopause, and then chemo! Have a great weekend!
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With these 2 classes the tests are all online, plus writing ssignments. Some classes, like the math and accounting classes require you going to the campus or having a proctor
We feed our goats timothy hay in addition to what they eat outside. Those goaties can eat, I tell ya! They literally will eat until they get bloat, which is very dangerous, so you have to be careful with how many treats you feed them, as their dietary balance can get off and result in death. We had one of our little pygmys die of bloat, it was horrible. Couldn't get her to the vet in time. We think she found a poisonous weed or something, because we hadn't fed her anything different.
Bernie, sorry about your friend. Glad to hear she is doing well!
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In tribute for the two ladies on the TNS forum, sadly passed.
In the rising of the sun and its going down,
WE REMEMBER THEM.
In the blowing of the wind and in the chill of winter,
WE REMEMBER THEM.
In the opening of the buds and in the rebirth of spring,
WE REMEMBER THEM.
At the blueness of the skies and in the warmth of summer,
WE REMEMBER THEM.
At the rustling of the leaves and in the beauty of autumn,
WE REMEMBER THEM.
At the beginning of the year and when it ends
WE REMEMBER THEM.
When we are lost and sick at heart,
WE REMEMBER THEM.
When we have joys we yearn to share,
WE REMEMBER THEM.
As long as we live, they too shall live,
For they are now a part of us.
WE REMEMBER THEM.
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Yes. We remember them. Beautiful.
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Bernie, thank you. That is beautiful.
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Hi Sylvia,
How are you? So much sad news going on. I am trying to do my homework, political views of Rawls and John Locke, but I keep getting distracted and visiting all the triple negative threads. Sartre is our next and last subject. Can't believe I made it through this quarter! Just can't concentrate. Hope you are just taking a pleasant break from the boards!
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Hello Sylvia!
I hope all is well with you and your husband.
I hope, like Bak, you are just taking a break from the boards.
With love,
Sam
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Hello Sylvia and Ladies,
Haven't posted on here in a while but I've been lurking.
Bernie, that was beautiful, thank you and love your goats!
Getting ready for our trip to Rome and Paris, we leave on Friday and I don't feel like I'm going to be ready.
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Hello everyone and special hellos to Maria_Malta, BernieEllen, bak94, christina1961, mccrimmon324 and sam52
Thank you for all your very interesting posts and for your caring thoughts. I have a very bad viral infection that has given me a terrible cough, hoarse voice and weakness. This is the first time that I have felt up to looking at the thread. I shall be so glad when I have recovered. Apparently there are loads of cases in Exmouth and there is not much to take for it. My husband has had it for three weeks and me for two. In the order of things it is minor, but it has taken me all my energy to deal with the cough and voice.I was so proud to discover that you had been keeping this thread going and that you have been saying such interesting things. I feel that our little group is back together again.
I was so sorry to read that two people on the TNS thread had died. I dare not ask who they are. I shall have to have a look in a minute.
Thank you BernieEllen for your lovely poem. It is true that we do not forget people on the thread.
Keep posting and I hope it will not be long before I can get back into action.
Kind thoughts to everybody.
Sylvia0 -
Hello everyone
I have been reading the TNS thread and was so saddened to find that suze35 and Laurajane had died. They were two strong and inspirational women and they will be sorely missed.We need to focus on the positive and think of all of those who are surviving even with stage IV. We are told that cancer is supposed to be an illness of the elderly, but it is now so obvious that this is not true. I keep asking myself why are so many young women being diagnosed with breast cancer, and very often with TNBC. We need much more progress. Present treatment is too devastating.
I saw that you, mccrimmon324 (Heather) are now taking metformin. How are you getting on with it? Did you get it from the hospital or your GP?
You must be very excited about your trip to Paris and Rome. I do hope you have a lovely time.
I saw that you have made the acquaintance of "Betty" from Florida like you. She did post first of all on Not a Typical Triple Negative, by I Cuda Shuda, - am I alone here, a thread started in 2009 but inactive for a while. I did answer her post on that thread to encourage her. I am sure you will have a lot to write to each other.
How many of you are now taking metformin?
I know that most of you are probably working, so I was wondering how much time you spend on the forum?
I hope you are all having a good week.
Best wishes
Sylvia0 -
Hi Sylvia,
I was able to get my GP to prescribe metformin for me. I guess I've been on it for 3-4 weeks now. 500mg 2 x day and no side effects or anything anymore. I actually forgot I was taking it until you mentioned it again. It's just another pill in my big pile I take every day now.
I take a whole bunch of stuff, green tea ( I drink that as well ), resvatrol (spelled wrong I'm sure), D3, Vitamin E, etc....
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