Calling all triple negative breast cancer patients in the UK
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Hello to any newcomers looking at this thread,
I would like to say that you will get good support on this thread and also reassurance. Please do not be afraid if you get a diagnosis of breast cancer. This disease is highly treatable. Just take one day at a time and do not be overwhelmed by all the information that is circulating on the threads. Break up your treatment and concentrate on one treatment at a time. Be informed on the basics but do not get into information overload.
Good Luck to all of you
Thinking of you,
Sylvia.
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Hello BernieEllen
I was just posting to see how you got on with your scan on January 11th. I do hope all is well.
Best wishes
Sylvia
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Hello suze35
I have been following your posts on TNS and was sorry to learn that you are in hospital. I am sending best wishes your way from the UK and hope you are making progress and will soon be back home.
Best wishes
Sylvia
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Hello bak94
I hope you are now out of the hospital and making good progress at home. What a year you had in 2011 and I hope 2012 will be much better for you. I know you must be getting impatient to deal with your radiotherapy treatment.
Best wishes
Sylvia
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Hello mccrimmon324 (heather)
I have been catching up with my reading on TNS and saw that you had had good news from your follow up visit for your end of treatment.I was glad to know that your blood work was perfect. I was interested to know that they check tumour markers, because in my medical team no one had ever mentioned them. I saw that the range is 0 to 38 and that yours was 7.9. Like you, my immediate reaction was that, if you no longer have cancer, should the marker not be at zero? I know we read that we all have cancer cells in our bodies, so I am wondering whether that means that we always have above zero markers, and that the body deals with these.
I was interested to know what your doctor said about Metformin and it makes me realise that we should not be jumping onto band wagons without careful thought and advice. Metformin is used to lower blood sugar levels in diabetics and they have to be careful with the dose, because diabetics can have hypos and go into diabetic comas.
Can you explain what A1C means? I suppose Hgb means haemoglobin.
I was wondering why you asked your doctor to put you on Zometa. Do you think you have osteopenia or osteoporosis as a result of your breast cancer treatment? I know that bak94 is taking Zometa, but I cannot remember why. I think it was something to do with preventing recurrence. Have you read my latest postings about bisphosphonates? When you say you are having a bone scan on Monday, do you mean a bone density (DEXA) scan to see if you have brittle bone problems?
If I were you do not overdo the calcium supplements, because of recent news about calcium supplements and heart problems. The best way to help bone health is a calcium rich diet, but not dairy products, at least that is my opinion.
I have heard a lot about cinnamon helping to lower blood sugar levels.
I cannot believe what I have read, on the TNS, about what is happening when women have check ups. I have been fortunate to be treated mainly by women, but, even so, at check ups, I was always given a gown and left in privacy to remove my bra and then put the gown on. Even with a woman oncologist a female nurse was always in attendance. I always had my husband with me. The only time I was seen by the oncologist's registrar, a male, a female nurse was in attendance to act as a chaperone. I felt that, having your bra undone or done up by a male in that way, was out of order. I would not have allowed it.
Congratulation, Heather, you have finished that long journey. Allow your body to grow strong now.
Wishing you the very best.
Sylvia0 -
Syliva,
As Heidi on the TNS thread explained I suppose we do all have cancer cells in our body (which I have also read in the Anti-Cancer, a way of life) so the number would never be 0. That's pretty scary actually.
I do plan to ask my family dr about Metformin and I beliece the hbg A1C is a blood test that tracks your blood sugar levels over a period of time, maybe my family dr would put me on it. I could be wrong and need to google. I'll let you know.
I've asked for the Zometa because I have read/heard that it may help lower your risk of recurrence, as long as it doesn't do any harm I'm willing to try anything.
I skimmed over your posting about bisphosphonates since I'm usually at work when I'm on this site, so now I will have to go back and read it.
I actually think I may get enough calcium in my diet, as I tend to eat a lot of dairy products... Milk, yogart, cottage cheese and I take a daily vitamin that provides 50% of your daily value but I'll ask my dr about that as well as my D3 levels.
And yes, I meant a bone density scan. Sorry about that. My onc is not worry about my bones but if I fall into the right criteria he'll go ahead with the Zometa, if not, I'm out of luck on that one.
I've also just heard that melatonin has been mentioned for being good for breast cancer, I happen to have a bottle of it for when I have trouble sleeping so I plan on trying to take each night. I should anyway, I'm a terrible sleeper, up several times a night.
Also, my onc's assistant told me that I should continue to take 1 asprin a day, as she feels it most likely won't do anything as for as a recurrance but it is excellent for your heart.
Thankfully, I always make myself a bowl of oatmeal with raisins and lots of cinnamon for lunch everyday!
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Hi Slyvia, I have an appointment for my scan results next tuesday.
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Good luck Bernie, sending positives thoughts your way!
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Thanks Heather, trying not to think about it. Have friends over tonight, looking forward to a relaxing evening. Have new puppy to keep me occupied as well.
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I love new puppies!!!! Please post pics of your babies.
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Hello mccrimm0n324,
Thank you for your post. It is rather frightening that we all have these cancer cells circulating in our body, and I did know this from my reading. I also knew that most of the time our immune system dealt with them,but for some reason I did not realise that they showed up as cancer markers in our blood. We now know that these markers will never be 0. I suppose there must be a certain level at which a diagnosis of cancer is declared.
I am doing a lot of thinking about Metformin. I am wondering whether a doctor will put someone who has had breast cancer on Metformin if they have regular elevated levels of blood sugar, but not enough to be diagnosed with diabetes. It might be connected to Metabolic Syndrome. I remember reading that metabolic syndrome was a risk factor in developing breast cancer.
I do hope you will get a lot of information about Zometa before taking it. I have read so much that is negative about all the different bisphosphonates and all the harm they do. I think they are being handed out too easily, a bit like statins. I do not think there is any such thing as a harmless drug. I do hope you will find the time to read my post about bisphosphonates.
You say that you eat a lot of dairy products. I was wondering whether you buy organic ones. There is a lot of information about growth factors in dairy products and their connection to the development of breast cancer. I have also read that humans cannot absorb the calcium in dairy products. There have been articles about how there is more osteoporosis in countries where a lot of dairy products are consumed than in countries where they are not eaten. The best calcium supplements are those made by Solgar, because they are properly balanced. You do need to take magnesium and vitamin D3 with your calcium. Calcium carbonate is no good either. I get some calcium from canned sardines with the bones in them, canned red salmon(wild) with bones. Almonds and dried figs. I also drink fresh soy milk,enriched with calcium,as well as ground seeds that I mix with soy yoghurt.
I was interested to know that your oncologist will base his decision about Zometa on the result of a bone density scan. If he is not looking for osteopenia or osteoporosis, I am wondering what he is looking for. I wonder what the right criteria is.
I was interested in what you said about melatonin. There is research that shows that lack of melatonin is a risk factor in the development of breast cancer. Melatonin is formed at night while we sleep and it is not good to sleep in a bedroom that has too much light coming into it. There have been studies carried out on people who work at night. I did start a thread on this and quite a few people were posting,but somehow it got deleted..
When you have the time have a read about the latest information about taking aspirin that I posted on this thread. What dose are you taking, The latest information here is not to take aspirin unless you have had a heart attack or stroke.
A bowl of oatmeal with raisins and lots of cinnamon sounds really healthy!!
I do hope you will have a good weekend and a good rest from work. Do you have anything special planned? How is your work going? How are you feeling post treatment? What do you do to relax?
Take Care,
Sylvia.0 -
Hello Bernie Ellel,
Thank you for your post. I do hope you will have good news next Tuesday when you go for your results.
What are you doing with yourself these days now that you have finished treatment, I hope you enjoy yourself this evening.
Keep well and happy.
Sylvia.
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Hello bak94
What a rough time you are having. To have c-difficile after all you have been through is sheer bad luck. I do hope you will soon recover andbe able to get your life back on track. You must feel that you will never get to start your radiotherapy.
I am sending you all my best wishes for a speedy recovery.
Sylvia.
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Introducing Calva (latin for Venus). 10 week old Dogue de Bordeaux. Very gentle, good guard dog.
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Look how adorable he is!!! From the this pic he's got some big feet. Will he be a big boy? How many dogs do you have? Do they all get along?
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Hello Bernie, Thank you for the photograph. I am sure that will cheer up a lot of people on the thread. It is Friday evening here and time to relax. Post about anything you like.
All the best, Sylvia.
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Hello mcrimmon324 (Heather),
You must be thrilled to be thinking about your trip to Paris in March. I am sure it will do you a lot of good.Keep looking forward to that. I went there for the first time when I was twelve on a school trip. It was so exciting.
Thinking of you.
Sylvia.
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HelloSuze 35,
I was so happy to read that you were back home. I hope you will continue to make progress. You have made such an impression on me.
Warm wishes from the old country.
Sylvia.
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Hello christina 1961,
We have not heard from you in a while on this thread, so I do hope all is well with you and that you are coping well with the eribulin. We would love to hear from you. You do not have to write about breast cancer. Friday and the weekend is a good time for chilling out and writing about anything we like.
Best Wishes, Sylvia.
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Hello Maria_Malta, We have not heard from you in a while and miss your interesting posts. We hope all is well.
Best wishes, Sylvia.
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Hello Sam52, I was sorry to know that you had lost two postings to me, most frustrating. It is safer to write in Word and then copy and paste to the forum saving as you go.
I bet you are glad it is the weekend and I hope that you can get a bit of relaxation. Are you reading any interesting books these days?
Best Wishes, Sylvia.
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Bernie-I had tears in my eyes when I saw the picture of your puppy! So sweet! I have an obsession over dogs, we have 4 and I would have more if it was legal and I could afford it. I love puppies!!! WHat kind is he? Dogue de Bordeax? He looks kinda like a mastiff, are they similiar?
Karen-I had a large area of DCIS with my invasive cancer, none of it showed up on my mammo, only some suspicious calcifications. What I found interesting is after chemo all my DCIS was gone, plus the invasive part.
Sylvia-It has been a rough year for me, but on the cancer scheme of things it is all minor, even though I am miserable. So I get c-dif from antibiotics treating the staph, now I have a yeast infection caused by the new antibiotics for the c-dif! Could I just catch a break?
School has been keeping me busy, my philosophy class is very interesting, but sometimes I am a bit lost, my brain is not at full functioning capacity yet! I feel like telling my instructor I have chemo brain (online class), but then I feel like I am using that as an excuse. Some of those young whippersnappers are so bright! Hard to keep up.... Also, I need to practice on avoiding run on sentences, but it is how my thought process works.
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Morning everyone, it's like animal farm here. I have three dogs, chickens, turkeys and a horse. Keeps me busy. Calva will be a big girl, French Mastiff. Have any of you seen the film Turner and Hooch with Tom Hanks?
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I love Mastiffs! Hey, I have an animal farm too! 4 dogs, 2 cats 5 parrots, 16 chickens, and 5 goats. Yes it is alot of work! We had 3 cows one night also, a neighbors got out and decided to visit us. I think they came to visit my dogs because we would walk our dogs down a trail past their pasture and the cows always came over to say hi and one of my dogs absolutely loved the cows. It was fun trying to help the owners round them up! Finally the young daughter brought her horse over and the cows followed them home. One time we had 2 llamas roaming the neighborhood. Never a dull moment! Sometimes our goats used to escape and follow people to their homes, thank goodness I think we figured out all the escape routes.
Bernie, I am such a dork. I thought dogue de bordeaux was a type of dog! Our dogs are used to the chickens and do gaurd them when they are free ranging. I swear my big dog drools while looking at the chickens but he has never attacked. He has a face like a Mastiff and weighs about 130 pounds, but I think he is some kind of lab mix, he was a pound puppy.
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Hello bak94
I was sorry to know that you now have a yeast infection as a result of the antibiotics to treat the c-difficle, but as you say these are minor things compared to cancer. They are all something that you could have done without, but you will get over them all. Once your radiotherapy is over, you should be able to put it all behind you. By the way, probiotics in capsule form, or natural yoghurt with live cultures, is very good for helping with yeast infections and for taking when on antibiotics.
I was very interested to know that you are doing some studying and I think it is very courageous of you with all that has been going on. Just carry on at your own pace. I am sure that studying will help the effects of chemo on the brain, as it will be a challenge to the brain and push it. I should not worry about any young whipper-snappers. You have the advantage of more maturity in your thoughts. I was particularly interested in the fact that you are doing philosophy. Are you studying any particular philosophers? Are you doing anything about existentialism? Tell me a bit more about your studies.
I am sure you must be kept very busy with all your animals and their escapades! By the way, the word un dogue is the French word for a mastiff. I do not know much about dogs.
Best wishes
Sylvia0 -
Hello BernieEllen
It sounds as though you and bak94 have a very busy and fulfilling life taking care of your animals. They must be great company for you.I hope you are having a good weekend and that your husband is home for a while.
What else do you do to keep busy? What are your hobbies?
Best wishes
Sylvia0 -
Hi bak, you are right. Dogue de Bordeaux is the recognized name of the breed. That is what they registered as.
My jack russell/beagle terrier (Ben - he's a rescue dog) will try to attack the chickens if they are in their pen. When they are out in the field he ignores them - strange
I also have a pitbull/rottweiler. (Gunnar - old tuetonic name - means bold warrior) He is two and you could not get a more gentle, loving dog. If you tell him off he looks as if he is going to cry.
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BAK - I'm so sorry your having a crappy time. Soon enough everything will clear up, you'll be back to normal and this past year will be nothing but a memory. I love dogs too. My farm consists of 2 dogs and a husband. I'd have more is I wasn't picking up after the 3 of them constantly. Although since diagnosis my husband has really starting pitching in with the housework and I'm forever greatfull and I'm a dork too. I thought Bernie had a different breed of dog.
Turner and Hooch made me cry so hard.
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Hello mccrimmon324 (Heather)
I thought I would just say "hello". I seem to be the only one of the group of regular posters not to have any animals, but then I live in an apartment complex and have a husband who is seriously allergic to the fur of animals, not to mention pollen, dust, mould and feathers!I seem to remember that christina1961 also has animals and is an animal lover. I remember her posting sometime ago about transporting stray or rescued animals to new homes. I imagine she may not be doing this at the moment, because she is on the eribulin trial.
I had to laugh when you wrote that you had to pick up after your two dogs and husband. I was glad to know that your husband has started helping you with the housework. I believe in sharing everything between husband and wife. My husband has always been a great help to me and was my absolute rock when I was going through breast cancer treatment. My mother-in-law had trained him well! We are both neat and tidy and minimalists.
With your husband now pitching in, it would be useful if you could now train your two dogs to do the same!!!
I picked up on the word dork, as it is not a word that is used a lot in the UK. It is easy to guess what it means, but I do not think you are a dork! Bak94 is no dork either. On this thread I think we are all thinking, intelligent women and we have made this into a very informative and supportive thread.
Are you going to post photographs of your two dogs?
Hoping you are having a good weekend.
Sylvia0 -
Hello margarett
I was just wondering how you are getting on with your chemotherapy. I do hope all is going well.
All of us who have been through the treatment would be interested in knowing your own thoughts and experiences. Keep looking forward.
Best wishes
Sylvia0
