Calling all triple negative breast cancer patients in the UK
Comments
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Hello Lola
Thank you for your post. Bernie certainly makes us all laugh.
It does seem that a lot of people have vitamin D deficiency. I think one of the reasons is over use of sun-block. I have read that these sun-blocks are doing more harm than good. They are full of chemicals and you do not need them if you measure the amount of time you spend in the sun. apparently you need only ten to fifteen minutes a day in the sun to get your dose of vitamin D. After that your body will not absorb any more vitamin D and if you stay in the sun you will start to burn, so I suppose if you want to stay out for a long time you need the sun-block, but I do not think long hours lying in the sun is good for you.
In countries like the UK we probably need vitamin D supplements, especially in the autumn and winter when we see little sun. We have to make sure that we get some from food.
I hope you manage to get your vitamin D count up. Is it easy to get vitamin D blood tests in Australia? I do not think it is an automatic thing here in the UK.
That is all for now.
Best wishes.
Sylvia xxxx
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Hello Liv
Thank you for your post.
I have had a rather busy and disrupted day, so I shall answer your interesting post tomorrow, as I do not like to rush posts. I also want to look at the information about vitamin D as more and more research appears to be connecting vitamin D deficiency with the possible development of breast cancer. Here in the UK it is not easy to find food enriched with vitamin D. I was brought up as a child on doses of cod-liver oil (liquid) and orange juice. It was provided to children by the state. The cod-liver oil was probably good for us, but not the orange juice which probably had sugar in it.
You sound like a woman full of fun and vitality.
Talk to you some more tomorrow.
Love
Sylvia xxxx
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hello sisters and if there are any gentleman's around, please join in. ((hugs))
had a look at the vit d research which enforces that we should all take vitamin d, even if your not a cancer patient. i too was not getting enough vit d even though i power walk every day in extreme heat which the downfall as we all are aware is sun skin cancer so i have for the last 20 years covered my entire body with long sleeves and hats and block out whenever im in the sun, even when im down the beach.
not like when i was a young surfie chick, back in my teenage years we would plaster our bodies in baby oil and vinegar and bake in the sun 10hours a shot. used to get so sun burnt but reached the goal of browning our bods eventually after all the peeling subsided. dreadful but back then it was the fashion. still surprises me when im down the beach how so many dont cover up with all the education on skin caner.
would say that Muslim ladies would definitely have to be supplemented with vitamin d as they are covered from head to toe. since i have taken a supplement, tests have shown everything is fine.
lolalee great to see you here. (hugs) how is your reconstruction going, where are you at with it all?
our sylvia is a gem of knowledge and very entertaining. feel like ive known her all my life, she has an aura of goodness & is humble and find that i adhere to that and tone my expressions down on her thread....does me good... luv her.
right this second im going to stop this banging on the keyboards and get off my butt and get down the park for my power walk. later catching up with friend at gym to do a workout..top half today...then im going to chill and treat myself with a few reds and some good music to clear any gray matter lurking around up there in my head at the session with friends.
wish everyone well.
xx
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Hi everyone, Liv I have had 4 fills already with another 3 to go, next one will be 21st January. Have had some issues with the scar healing but thankful it did not lead to an infection. I think the skin around the incision was thinned too much which lead to very slow healing. I was really worried that I may have had to have the incision re cut but it seems to be fine now. Of course when I go for exchange they will need to reopen that incision scar anyway so a tidy up will be in order.
Very happy that I am not experiencing acute pain or the tight chest feeling which affects a lot of girls - mind you it is early days but so far so good.
Enjoy your power walk and gym you make me feel really lazy.
Enjoy reading your posts Sylvia, you certainly are a wealth of knowledge. Hope your weekend has not been too cold and damp.
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Hello Liv
Thank you for your posts.
I was interested to know that you enjoyed some of the British comedies that I also enjoyed at the time. They are still doing repeats of them on one of the channels here. If you can get it, you will probably enjoy Miranda. That is about the funniest comedy at the moment. Some of the stand up comedians are good as well. I like John Bishop and Michael McIntyre. Another hilarious comedy series over the past couple of years has been Not Going Out. There should be another series soon. The comedians are Lee Mack and Tim Vine.
It sounds as though you have a very good relationship with your oncologist and that is a very good thing. I cannot imagine going through treatment with medical professionals with whom you cannot get on.
When are you going to have your other breast removed and your reconstruction surgery done? That is quite a lot to get through.
I was glad to know that you liked the Exmouth seafront. It looks a bit messy at the moment with sand blown over from the beach.
Thank you for the latest post, which I found very funny and entertaining. It sounds as though you are going to have an enjoyable day today and that is the way to go through life.
I was amused by your description of me as 'humble'. It made my husband laugh as well. I am very outspoken, especially when I feel there is injustice, and I am not at all into deference, as a lot of Brits are. I try to be kind and good and am not afraid to speak out when I feel something needs to be said. I spent nine years living in France and Morocco and teaching there and you soon learn to speak out among French people. I am quite modest and not at all big headed!!! At least this is what Raymond tells me!
I suppose with the vitamin D we have all learned a lot in recent years. We need some sunshine, but a little is enough and staying out for a long time does not increase the vitamin D to our bodies. I think the experts went over the top about the danger of sunshine and this resulted in everyone covering themselves in sun block and staying out for hours. I understand that too much sunshine is bad for the eyes, so that is another reason for moderation. You are right about Muslim women. They do, apparently, have vitamin D deficiency, so would definitely need supplements. With the supplements we also have to make sure that we do not overdo it, as too much is not good either.
Have a good day.
Sylvia xxxx
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Hello Lola.
I am glad to see that you are settling in to the thread. You and Liv will have a lot to discuss with both of you dealing with reconstruction.
Best wishes.
Sylvia xxxx
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Hi Sylvia, thanks for your reply. I'm 58 - a pretty young at heart 58 - I still feel about 17 at times! Yes, my Dad had non hodgkins lymphoma, surgery followed by chemo. His father died of throat cancer in his 60's. My Mom's father died of lung cancer in his 70's. My Dad's mother died at the age of 99 - she had malignant lumps in her breast, but I was told at that time that her cancer was age related? I just spoke to one of my sisters and she would love to know if there is any genetic link, so I'm going to speak to my onc about taking the BRCA test.
Have had the most amazing, lovely day today. Woke up feeling more energy, went down to the beach and had a lovely swim, met up with a friend for brunch and went back for another swim a bit later! I may pay tomorrow for all the activity of today, but it's worth it!
I too, wish I'd know of this site from the start, but I found that everyone was around, I had my one sister with me for the 1st chemo, my other sister for the 2nd (they both came a long way to be with me) and friends who stayed with me for the last 2. But all during treatment I felt carried along, there was so much help. I fell flat at the end of rads - it was a case of ok, off you go now, back to life. I felt so lost and alone at that stage. I read a fantastic article about that, and that's when I went looking and found you guys. Then I read all the postings for a couple of weeks before plucking up the courage to join in.
I so agree about laughter - I love to watch comedy, both British and American, a good laugh is wonderful. After the 3rd chemo I fainted at home one night - the one night I was alone - and managed to concuss myself. Luckily I had my phone in my pocket and could call for help. It was seriously not funny when it happened, but the other day I was together with the friends who came down to my house, got the ambulance etc, and we ended up howling with laughter about it all. It was so cleansing.
Another thing that makes me smile is my hair - it's so different - all curly and only does what it wants to - for some reason it tickles me and I have a chuckle every day when I look in the mirror. I think part of that too, is that it serves to remind me how far I've come. The best part is that now people look at me and dont immediately think 'chemo' and get that sympathetic look; now they think my hair is so short by choice.
Work wise, I manage a shop where we do branding on clothing with embroidery and printing. I do a lot of the design work and love it!! There are only 3 of us working there and we get on well. My boss is lovely and has been just great throughout this whole story. Tho she would love to know when chemo brain goes away - my memory and retention have taken a knock, and when I'm tired that gets worse!
Be well, Sylvia and thank you.
Love xxx
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Oh Liv, another dog lover!! I had a mini maltese poodle once - she was smart as a whip! I now have Chelsea, a crazy black Lab, just growing out of puppy destruction, she's 2 1/2, and then there's Sanjay who I found at a rescue centre. He's ginger, is part border collie, part alsation maybe and maybe a touch of spaniel. He was quite troubled at first, didn't trust anyone or let me too close. But he's been with me for almost 5 years now and I call him my guru dog - he's so chilled and serene! I have employed someone who picks them up every morning and takes them to the beach for an hour, so I know they are getting all the exercise they need, there's no way I could handle walking the 2 of them on leashes yet.
We also used to oil ourselves up, even used brake fluid once, and bake in the sun. I have a few moles on my back that we've been watching, but now my onc says I should get them mapped. Now I still love the hot weather, but use sunscreen, hats and cover up.
I love what you say about finding my new life now. I know things'll never be what they were, this experience changes some pretty fundamental things in a person. I'm also more aware of the beauty of nature, of what is really not important, and yes, I love my family and friends more, I play more. I'm also a lot kinder to my body and myself. I'm finding my new look, too - I didn't have reconstruction and don't want to, and meantime I'm happy to go bra-less as much as possible. Otherwise I wear a sports bra with cups and put a bit of stuffing in the empty cup and it does the trick. My sisters are urging me to get prostheses, but I'm not in a rush.
I read somewhere "I got cancer but it didn't get me", I have a big badge that says "Cancer Sucks". It does, but I still believe that in every very challenging situation there are gifts for us. Compassion for ourselves and others, awareness of the fickleness and the beauty of life, and a determination to live each day as well as I can, to give gratitude and to remain in awe of what a beautiful planet we live on.
Good luck with your reconstruction Liv!
Lots of love xxx
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Hello everybody.
Another weekend is nearly over and I hope we are all ready to face whatever challenges are put before us.
I think we would all like to let jenn-uk know that we shall be thinking of her this coming week. We hope, Jenn, that all goes well for you on Monday and Thursday of this coming week. Please let us know how you get on.
Mumtobe (Carol), we shall be thinking of you as you go through another session of chemotherapy and hope that it will not be too difficult.
linali (Lindsay), I really hope all is well with you and hope you are just taking a break from the thread and that you will soon be popping in. I do miss all your news about the cancer centre.
Michael, I hope you have had a good weekend and that all is well.
Bernie, how are things going with you in Ireland?
FernMF, I hope you have had a good weekend. What are you doing with yourself these days?
sam52, I hope you had a good weekend with your father and that you are now safely back in London. I think Gloucestershire is going to be hit by snow and am hoping that I do not wake up to snow tomorrow here in Devon. It has been dry and sunny here in Exmouth, but very cold. Nevertheless the seafront was as packed as on a July day. I think everyone must have converged on Exmouth. Every parking space was full and there was much eating of ice cream. I think people must have been desperately searching to get some vitamin D before the rare sun disappeared!
Liv, if I know you, you have made the most of every minute today.
Kymn, are you snowed under in Alberta?
Wishing everyone all the very best for this coming week.
Fondly,
Sylvia xxxx
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Hello Carolben.
Thank you for your post and all the information.
It looks as though, like me, you have a lot of cancer in the family. It would be good if you could get your oncologist to do a BRCA test. I think there should be mass screening for this. I think I might mention it again to my oncologist when I see her for my routine check up in May. I know that you have to push here.
When I read your post and those from Liv I find it hard to imagine that you are enjoying lovely sunny days when the sun is a rare commodity in this damp old island. It sounds as though you had a really wonderful day.
It sounds as though you had really good support during your treatment and that is so important. I do regret that I do not have sisters. I am the only girl in my family and had two older brothers, both deceased, and now have just two younger brothers. I think the younger brothers were both very frightened when I was diagnosed, and really shocked, so they did not say much about it. It was really my husband, Raymond, who supported me through everything and I did not know about this forum until I had finished treatment. I came upon it, by accident, in 2009, when I was looking for information about hyperparathyroidism, with which I was diagnosed at the same time as my breast cancer. I met sam52 and she also had hyperparathyroidism and the breast cancer. We did a lot of posting on the High Calcium thread and supported each other as we researched everything and prepared ourselves for surgery to remove one of the glands which was malfunctioning due to a non-malignant adenoma on it. We have stayed in touch ever since.
During my treatment I did have the support of Hospiscare nurses, who visited whenever I wanted. I still see them in Exmouth and they always tell me how well I look. I also had occasional visits to FORCE which is a cancer charity in the grounds of the hospital, where I am a patient, in Exeter. I became good friends with one of the nurses there, who adopted me and came to all of my chemotherapy sessions with me, along with my husband. She was truly exceptional.
It is true that, especially with triple negative, the end of treatment comes with a great shock. As you say, you have been carried along, and cancer treatment keeps you busy and then suddenly you are al loose ends, somewhat isolated and the busyness comes to an end. It is like being cast adrift. Those around you think that you are cured and that is an end to it. If only they knew, what we all know, that it never comes to an end.
You start a new phase of your cancer journey and start the check ups, every three months and then every six months, not to mention regular mammograms. We all know that we carry on, trying to be normal, trying to put cancer somewhere away in a dark cupboard, but all the anguish and fear builds up as we face a check up. After the check up there is the euphoria if all is well and the anguish if there is a problem. We have had women on the thread posting to express their experiences when they have a new primary, a local recurrence or metastases, and then another journey begins. It is not a journey any of us wants, but we all know it is a journey we may have to make. No matter how many years we remain in the clear, we can never be sure of what is around the corner. For me it is now seven years, six months and twenty four days since diagnosis, but I still take nothing for granted.
I am so glad that you have found us. Please feel free to post about anything you like and anything that takes your mind off cancer. I have a very inquiring mind and would love to know a bit about your life in South Africa. Were you born there?
As for your hair, it does grow back rather differently, but in the end it does become fairly normal. I had very dark curly hair as it grew back, but as time went by it became less curly, my more normal brown and not quite as wavy as it was before. I always had long hair but find it gets a bit flimsy if I try to let it grow. I am going to try to let it grow all this year and see how I go. It is quite a slow process after chemotherapy, but it does get back to normal.
Your work sounds very interesting and artistic. It is so good to have work that you enjoy. It is also good that you are in a small group and that you get on well. I am glad that you have an understanding boss.
You mentioned chemo brain. I cannot say that I experienced it but I know that a lot of women on the threads mention it. How does it manifest itself for you? I think tiredness and chemo brain are perhaps the most common problems that women mention during chemotherapy. A lot of them also mention a sore mouth and a metallic taste with food. I think the secret to getting through chemotherapy is to drink plenty of water and to have a lot of rest, not to mention to keep looking forward. I found that fresh pineapple or canned pineapple in juice was very refreshing, as well as juiced avocado, and chunks of watermelon.
I think that is enough for this evening. Tomorrow I have to get up very early, and it will be pitch dark here, as in my role as a volunteer director, I have to make sure that all goes well with some tree work that is being done in the grounds. It will be very cold, so I shall have to keep the hot drinks going for the workers. The days are short here at the moment. It is not light until about eight o'clock and dark by five.
Love.
Sylvia xxxx
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Hey Sylvia - I dont envy you your winter - am definately a summer baby! I went through all the treatment during winter, and am so happy to be well and able to enjoy the fine weather now. Keep warm thorugh your winter, the time will come that you have summer and we'll be cold!
It's wonderful that Raymond has been so supportive, and the nurses who were so supportive during your treatment. The nurses I met in the oncology centre here were absolute angels! I adore my sisters, one lives about 1,000 miles away from me, in South Africa, and the other one is in California. I have a 36 year old son who lives in Israel (!) and he came out in the very beginning to be with me through the mastectomy. He is often the one who puts things back into perspective for me - reminds me how far I've come since last May - encourages me to be patient and kind to myself. Even my father came down to see me after surgery - at age 90! I felt so very, very loved through this ordeal, everyone has been just wonderful, it's been a humbling experience. My sisters and I keep in touch daily with email, we are so lucky to have so many ways of communication these days!
Chemo brain started to set in around my 2nd chemo - I felt like a fog came over my mind - my memory, retention and concentration got really bad. My attention span got really short - it takes me still about a month to read a book, and I used to read 3 or 4 books a month! The tiredness affects me in the same ways, or it becomes exaggerated because of the fatigue, but I also am bumping into things, knocking things over more - have always been a little clumsy, it's just more so now. I'd forget who I'd spoken to, what I told them, was repeating myself, it was not nice. It is getting better, but I have to make a huge effort, especially at work, where I double check everything I do. My memory is improving slowly, I guess it's also a slow process back to normal there too. I did get the metallic taste in my mouth, putting a touch of lemon juice in water helped. I have just now graduated back to regular toothpaste, as I had ulcers in my mouth during chemo, that are just healing up now.
The other thing that is hanging over from the chemo is a flare up of Irritable Bowel Syndrome. I was diagnosed with IBS in the late 90's and controlled it fine with diet. My doc explained that chemo wipes out the mucous membranes in the bowel and said it will settle down in time. It's some days better than others, and I wonder if that is also not part of my not gaining weight - will discuss it again with my onc next Wednesday.
Yes, I was born in South Africa, in Johannesburg, and went through school there. I was a wild child and when I finished school I went off travelling in Europe, spending more time in France and Germany, to learn the languages. Then I ended up on a kibbutz in Israel, where I stayed for 8 years! I met my husband there and my son, Ben, was born there. After our divorce, Ben and I came back to South Africa, and he stayed here for 4 years before moving back to his father and the kibbutz. where he has stayed ever since. We visit at least once a year and skype a lot. He is coming out in March this year, and we are going with my sisters to Sabi Sabi Game Reserve for 4 nights to celebrate my birthday!!! How cool is that!!! We were planning a big celebration for next year, when I turn 60, but my sisters decided they dont want to wait that long! I think we all had a bad scare with my cancer and are all determined to spend as much time together as we can.
Have you heard anything about drinking juiced wheat grass, Sylvia, or anybody? I've been recommended to drink a small cup of that every day for energy.
That's me for now, hope everyone's day will be sprinkled with a generous dollop bit of happy dust!
Lots of love
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Sylvia: "these days" I am getting on with life, back to "normal," working 8:30-5, M-F at a lawfirm, I am a legal secretary and do some paralegal tasks. I am a church musician, volunteer, and spend some time weekly with those volunteer things. I also regularly attend church, educational classes there, and a women's group monthly meeting. I am a quilter, having recently purchased a "new and improved" (and expensive) sewing machine. Tonight I begin the first of two classes to learn how to use this machine. I was not impressed when using it over the holidays, making quilted placemats and a couple of cloth books for the grandbabies. We'll see if the salesperson/teacher can "teach" the value of this expense. My granddaughter is playing interscholastic 5th and 6th grade girls basketball for a few months - and we have traveled 1 hour west to see her team play. This is a "learning the skill" type team, and the whole league's efforts are better now, but still mostly comedic in nature. The score at the end of the game last Saturday was 25 to 19. Granddaughter's team lost. Sunday's game (which we did not attend) they won, score was 20 to 4 . . . . COMEDIC. My hubby and I are celebrating our 19th wedding anniversary today. (2nd marriage for us both)
My hubby purchased 6 "personal trainer" sessions at the local YMCA as a christmas gift to me. I have been to three sessions, and am experiencing muscle discomfort from using MANY muscles I had no clue I had (tee hee) . . . I'm hoping to continue my aerobic walking (3 miles) at least 3-4 times per week, and then work into "working out" every other day to increase strength, especially in my upper body. I am interested in TONING and strengthening especially my back, shoulders, neck so that my poster is improved.
I am "going flat" most of the time. I am still very self conscious, if I am not "camoflaged" with scarfs/patterns/layers. No one has mentioned ANYTHING, so I think this is just a personal journey for me. My hair is about 3/4 inch long in front/top . . . and longer in the back. It has come in nearly all gray, not white . . . but NOT my previous color(s). . . . I colored my hair so much for so many decades, I am not really sure WHAT my REAL hair color was before chemo. Now, it is gray/white/dark blah. I am not unhappy with it. "Fixing" it in the morning is a breeze!
Good luck to you gals who are still facing treatment. I am 8 months plus post surgery - I count that as 8 months plus NED!
Oh, BTW - the surgeon follow up appt was fine last week. He offered NOTHING . . . I think doctors are "allowed" so many return visits for full charge with the insurance company. He said "I'll see you in 6 months" and I said no. I have oncology appts every 3 months for 2 years - I don't need to see him. He agreed.
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Hi Jen, I'm so sorry you have to go through all of this again. This is a nasty, sneaky disease. Wishing you lots of courage and strength for this second round, sure we are all with you!
Lots of love,
Carol
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So sorry, Jen, that you are facing this again.
Hope all your scans are fine; it is good you don't have long to wait for a treatment plan.
Thinking of you.
Sam x
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Jenn-uk: I was at stage I, so the chemo BEFORE surgery was not offered. I believe, if given the choice, I would have chosen chemo first BECAUSE of being able to "see" the tumor be affected by the treatment. It's a thought process thing. Take footage from comic Jeff Dunham's bit with Akmed the dead terrorist - "I KILL YOU" . . . the doctor should listen to your desires!
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Researchers reveal aggressive breast cancer's metastatic path
Weill Cornell study shows triple negative breast cancer metastasis can be halted, potential new therapies on horizon
NEW YORK (Jan. 14, 2013) -- Scientists at Weill Cornell Medical College have discovered the molecular switch that allows aggressive triple negative breast cancer cells to grow the amoeba-like protrusions they need to crawl away from a primary tumor and metastasize throughout the body. Their findings, published in Cancer Cell, suggest a novel approach for developing agents to treat cancer once it has spread.
"Metastasis can be lethal, and our findings point to potential targeted treatments to stop the spread of this aggressive breast cancer," says the study's senior investigator, Dr. Vivek Mittal, an associate professor of cell and developmental biology and director of the Neuberger Berman Foundation Lung Cancer Research Laboratory at Weill Cornell Medical College.
According to researchers, if such agents were developed, they would perhaps be the first to specifically treat cancer metastasis, importantly in patients whose tumors have already spread. They would also be among the first designed to restore the function of a microRNA (miRNA), a small, non-coding RNA that regulates gene expression, which is crucial to cancer spread. While distinct miRNA "signatures" have been found for many tumor types, including different breast cancers, their specific roles in later steps of cancer metastasis has been unclear, Dr. Mittal says.
In the study, researchers set out to identify a miRNA that impacts metastasis without affecting primary tumor growth, as well as address its underlying molecular mechanisms and therapeutic potential against metastatic breast cancer. They discovered that a miRNA known as miR-708 is inhibited in metastatic triple negative breast cancer. They found that miR-708 acts as a metastatic tumor inhibitor, and when its function is restored, the tumors do not spread or form lethal macrometastases.
Silenced miRNA Inhibitor Molecule Can Be Switched Back On
Triple negative breast cancer has the worst outcome of all breast cancer subtypes because of its high recurrence rate and metastatic spread. This is why the research team chose to examine the role of miRNAs in the spread of triple negative breast cancer, which accounts for 15-25 percent of all breast tumors. The cancer is named "triple negative" because its tumor cells do not display two hormone receptors (estrogen and progesterone) or HER2/neu growth factor, which each form the basis of current targeted breast cancer treatments.
Using genome wide miRNA sequencing, Dr. Mittal and his research team found in human samples of triple negative breast cancer that miR-708 was significantly down-regulated with its normal expression curtailed. In both laboratory cells and in animal studies, the researchers identified that the normal role of miR-708 is to suppress the protein neuronatin, which is located on the membrane of a cell's endoplasmic reticulum -- an organelle that stores calcium. Neuronatin helps control how much calcium leaves that organelle.
"It is calcium that provides legs to cancer cells to help them escape a tumor. So miR-708 acts as a suppressor of metastasis by keeping neuronatin in check," Dr. Mittal says. "If miR-708 is itself suppressed, there is an increase in production of neuronatin proteins, which then allows more calcium to leave the endoplasmic reticulum and activate a cascade of genes that turn on migratory pathways leading to metastasis."
Researchers found that delivering synthetic miR-708, carried by bubbles of fat, blocked metastatic outgrowth of triple negative breast cancer cells in the lung of mice. This makes miR-708 a promising therapeutic against metastatic breast cancer. The researchers also discovered that polycomb repressor complex proteins are responsible for silencing miR-708. These proteins remodel the way DNA is packaged in order to epigenetically silence genes.
Dr. Mittal adds that the findings suggest that pharmacological agents now being tested in lymphoma cancer cells may also help to restore miR-708 in triple negative breast cancer. These drugs are designed to inhibit histone-lysine N-methyltransferase EZH2, the member of the polycomb group that directly silences miR-708.
"It is exciting that there are now drugs that can turn off the silencing of these critical genes. They could very well work for this aggressive breast cancer," says Dr. Mittal. "Finding that there may be a way to shut down the spread of an aggressive breast cancer -- which is the only way that triple negative breast cancer can be controlled and lives spared -- is very promising."
"These study results are terrific," says co-author Dr. Linda Vahdat, director of the Breast Cancer Research Program, chief of the Solid Tumor Service and professor of medicine at Weill Cornell Medical College and medical oncologist at the Iris Cantor Women's Health Center at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. "It not only offers us an avenue to treat metastatic triple negative breast cancer in the short-term, but also gives us the roadmap to prevent metastases in the long-run. We are anxious to get this into the clinic and are working as quickly as possible towards that end."
###The study was funded by the Neuberger Berman Lung Cancer Research Center, the Robert I. Goldman Foundation and the Cornell Center on the Microenvironment and Metastasis through an award from the National Cancer Institute.
Other study co-authors include Dr. Seongho Ryu, Kevin McDonnell, Dr. Hyejin Choi, Dingcheng Gao, Mary Hahn, Natasha Joshi, Dr. Sun Mi Park, Dr. Raul Catena, Jacqueline Brazin and Dr. Randi B. Silver from Weill Cornell Medical College, and Dr. Yoonkyung Do from Ulsan National Institute of Science and Technology (UNIST), School of Nano-Bioscience and Chemical Engineering in Ulsan, Korea.
About Weill Cornell Medical College
Weill Cornell Medical College, Cornell University's medical school located in New York City, is committed to excellence in research, teaching, patient care and the advancement of the art and science of medicine, locally, nationally and globally. Physicians and scientists of Weill Cornell Medical College are engaged in cutting-edge research from bench to bedside, aimed at unlocking mysteries of the human body in health and sickness and toward developing new treatments and prevention strategies. In its commitment to global health and education, Weill Cornell has a strong presence in places such as Qatar, Tanzania, Haiti, Brazil, Austria and Turkey. Through the historic Weill Cornell Medical College in Qatar, the Medical College is the first in the U.S. to offer its M.D. degree overseas. Weill Cornell is the birthplace of many medical advances -- including the development of the Pap test for cervical cancer, the synthesis of penicillin, the first successful embryo-biopsy pregnancy and birth in the U.S., the first clinical trial of gene therapy for Parkinson's disease, and most recently, the world's first successful use of deep brain stimulation to treat a minimally conscious brain-injured patient. Weill Cornell Medical College is affiliated with NewYork-Presbyterian Hospital, where its faculty provides comprehensive patient care at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. The Medical College is also affiliated with the Methodist Hospital in Houston. For more information, visit weill.cornell.edu.
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hello sylvia
will look out for miranda, sooner or later we will no doubt get it over here.
yes i have a great relationship with my oncologist now. had a shocker to start with, had no idea what was going on with ibc. my cancer stopped responding after 4 th chemo treatment and i began to panic and when i expressed this to her, all she did was look at me with "wtf" are you talking about. my cancer started at 2cm by the time i started chemo it was 6 cm by the time i had a mastectomy it had grown to 10cm & total scar is 16cm an do you believe with all that, only got a 0.3 clear margin.
i was really angry that she didnt listen to me so i wrote to everyone on all the different boards and asked for opinions and referrals and luckily my cries for help were acknowledged and now im really happy with my new onc. as you say sylvia it is so so important to have a good relationship with your onc, you must have confidence in them, this is just too frightening not to have that confidence.
hopefully will have the other breast off asap, have spoken to my onc which agrees by all the scans and the path report after my mastectomy my cancer had grown after 4th treatment.
he was going to get in touch with bs so at present dont know exactly when ill have the other one off, as long as they are both off for reconstruction is all that i care about in that department.
why are you surprised my description of you as humble, you give everything and dont take much.
you made me laugh when you said 'your not afraid to speak out when you feel something needs to be said. and you say your quite modest and not at all big headed at least this is what Raymond tells you! exactly thats where i came in with humble..ms humble sylvia. we love and appreciate that you DONT hold back, why do you think we are all here?..ms humble straight shooter mrs sylvia.
lolalee - wow nearly finished your reconstruction. if you dont mind what size are you up to now and what is your goal?
lucky for you your not experiencing the tight chest. as i had implants put in prior to diagnosis and they were a large c/d cup, hoping when i have reconstruction they will be able to stretch that much to hold that size again. do have my doubts as the skin is so tight even though i do daily workouts stretching as much as i can but because im a lean frame and they cut a huge amount and the scar line is from the outter side of the good breast right round and another 6 cm scar around my back so theres not much skin to stretch. what shape implants have you decided on silicone or saline round or teardrop, there so many out there now. hope your breast reconstruction journey continues to go well.
jenn((hugs)) no words except, you can do it, you can fight this demon and we will all fight together with you.... still will have all fingers crossed that perhaps its not cancer.
carol -lol - no never heard of brake fluid to bake in the sun. me too love the hot weather but my skin doesnt and always cover up.
yes cancer definitely sheds a new light on what is our 'new normal" even today i wanted to do my power walk and a bit lethargic as onc has doubled my chemo meds but im determined not to let it stop me..now i just go a bit slower, takes a bit longer my walk and the gym i now only use light weights with more reps, feel just as content as long as i continue to do these things.
you sound like you have empowered the new you in the breast department. what i do i wasnt into getting a prosthesis either and by the looks of you, your pretty lean so you can still wear all the off the shelf pretty bras. my trick is i put a pair of woolly soft socks in the cups, works a treat, my right breast is a large c/d cup and a good pair of soft fluffy socks in the other matches it perfectly. this way its very light and so comfortable and you can buy anything of the racks.
sounds like you have a wonderful son putting you back on track it appears..gorgeous!
can definitely relate to chemo brain sometimes i forget where the front door is or where im going when i get in the car..who cares, just go with the flow.
bernie - thx for research tnbc - very interesting & positive read.
xxx
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bernie - hello lovely - hope you dont mind i was looking for information of potassium and came across your post below:
not necessarily for you bernie as your having a break but if anyone can add their input into potassium if you think it is good or bad, would be appreciated.
xx
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ec 22, 2012 05:43 PM BernieEllen wrote:
1. Aspartame
What's in it: Phenylalanine, aspartic acid and methanol.
Reported side effects: Headaches, fibromyalgia, anxiety, memory loss, arthritis, abdominal pain, nausea, depression, heart palpitations, irritable bowel syndrome, seizures, neurological disorders, vision problems, brain tumors and weight gain.
Concerns: Phenylalanine and aspartic acid directly impact brain and central nervous system functions; evidence shows they play a role in mood disorders, memory problems and other neurological illnesses.
Methanol is converted into formaldehyde when metabolized. Makers of aspartame say methanol and its byproducts are quickly excreted. But research has found measurable amounts of formaldehyde in the livers, kidneys and brains of test subjects after ingestion of aspartame.
At high temperatures, phenylalnine breaks down into diketopiperazine (DPK), a known carcinogen. Phenylalnine is especially dangerous for people with the hereditary disease, phenylketonuria.
2. Aceslulfame-K
What's in it: Acesulfame-K is a potassium salt containing methylene chloride, a known carcinogen.
Reported side effects: Long term exposure to methylene chloride can cause nausea, headaches, mood problems, impairment of the liver and kidneys, problems with eyesight and possibly cancer. Acesulfame-K may contribute to hypoglemica.
Concerns: Of all artificial sweeteners, acesulfame-K has undergone the least scientific scrutiny. Early studies showed a potential link between the sweetener and development of multiple cancers in laboratory animals.
3. Sucralose
What's in it: Sucralose is a synthetic additive created by chlorinating sugar. Manufacturers say the chlorine in sucralose is no different from that in table salt. Fact: the chemical structure of the chlorine in sucralose is almost the same as that in the now-banned pesticide DDT.
Reported side effects: Head and muscle aches, stomach cramps and diarrhea, bladder issues, skin irritation, dizziness and inflammation.
Concerns: Research has shown sucralose can cause shrinking of the thymus gland, an important immune system regulator, and liver and kidney dysfunction. A recent study by Duke University found sucralose reduces healthy intestinal bacteria, which are needed for proper digestion and can impact the effectiveness of prescription and other drugs.
4. Saccharin
What's in it: Saccharin is a sulfa-based sweetener; its primary ingredient is benzoic sulfimide.
Reported side effects: For those with sulfa allergies, saccharin may cause nausea, diarrhea, skin problems or other allergy-related symptoms.
Bernie
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I'm joining in late to the conversation. I've had this discussion with my Onc and this is what he has told me. Until you check with your own Onc, this is what I have learned from him. Breast cancer tumor markers identify the tumor load a body has. Everyone has the proteins that can elevate or raise tumor markers. It is okay for markers to fluctuate. At different times, our bodies will repair and certain new bloods cells will cause an increase in these proteins. Just like in a completely healthy person (one who has never been diagnosed with cancer), blood tests for them and everyone will never reveal the same number consecutively. That is why there are ranges, and medicine is a science, there are no absolute numbers. Therefore they establish ranges to account for all variables, to better assist with determining what is normal and not normal. So if you are having breast cancer tumor markers done as a baseline, and then you have it repeated in 6 months, if you see it went up by a few points, that will typically not be a sign for concern, if it is within the normal range. What Oncologists will look for is a steady rise, or even a rapid rise. They will look for something over a period of time, that is consistent with trending towards an incline. But a small degree of variance in the results of the test from time to time is to be expected. Your body is always in production and therefore numbers will fluctuate.
Hope everyone is doing well today!
- Tumor Markers, Tumor Markers Fluctuations
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debra - hello thx for joining in the trip negs, im from aussie but find this thread so interesting with sylvia at the reigns.
pretty much what you have written is my understanding too. but i do seem to follow my markers as they have been pretty much on the mark so far.
first diagnosed highly elevated, first 4 months of chemo they came down gradually, chemo stopped responding, raised. after mastectomy when i was screaming to everyone that the chemo stopped working they were raised even higher than first diagnosed.
now on new chemo and gradually coming down.
always good to put it into perspective though, when they go a little haywire for no apparent reason and as you say, it can be for many reasons, not always cancer related.
xx
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aww babes (((HGS))) - & we will fight it...
you must be exhausted with this happening, your poor head much have a
zillions things going on up there or just completely blank.
xx
...damn cancer YOU
hate hate u cancer!!!! -jen cry yell scream then try to be strong as you can, my thoughts are going to stay with you.
xx
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Hello Carolben.
Thank you for your very interesting post.
It is wonderful that you have such good support from your two sisters and your son when they are so far away. I am so glad they were there for you during your treatment. Your father deserves great credit at age 90 to have come to see you.
Give yourself time to get over the treatment. Remember that your body has been through a terrible ordeal and a lot of trauma. Your son is right to tell you to be kind to yourself.
It looks as though you had some of the common side effects such as the metallic taste and the sore, ulcerated mouth.
It is true that the chemo wipes out the mucous membranes and that is why patients have such trouble with their mouths. Fortunately there are ways to help and one way is to use Biotene products, such as toothpaste, mouthwash and even chewing gum. These products are very good for a dry mouth, as is canned pineapple in its own juice.
I am not surprised that that you have problems with a flare up of irritable bowel syndrome from the chemotherapy treatment, but give it time and you should get back to normal.
I was very interested in the details about your life in South Africa. It sounds as though you have lead a full life. I too had a bit of wanderlust in my younger days, especially after finishing my university studies. I spent a year in France teaching English as part of my four year course for an Honours French degree. I really enjoyed it. I lived and taught for five more years in France and taught for three years in Morocco. During that time, during holidays, I went to Spain, Portugal, Germany, Belgium, Holland, Denmark, Sweden and Norway. I also went to Northern Ireland and the Republic. I was not sowing my wild oats, I have always been rather serious.
It must be an interesting experience to live on a kibbutz in Israel. Strangely enough, I have an English friend who is a senior nurse and a nurse to a consultant cardiologist. She spent her childhood in South Africa and came back here when she was about twelve and had to adapt to the school system here. Strangely enough, she told me that she had spent a year on a kibbutz.
It sounds as though you have something to look forward to in March this year, so hang on to that.
You mentioned juiced wheat grass. As it happens, I was in Holland and Barrett yesterday (a chain of natural food stores here) and I saw boxes of wheat grass. I suppose it must be powder. There were thirty sachets in a box for £21. That is quite a lot of money. I also saw a bottle of wheat grass juice and thought it might be a nice treat but when I looked at the ingredients I saw that it had agave syrup in it. I think it is one of the latest fads here, but it is still sugar and I try to avoid it, so I did not buy it. I know that wheat grass is one of the latest fads, but what exactly is it supposed to do for us? I wonder if it really gives us energy?
If anybody is on wheat grass juice and has the energy of superman (woman?) please let us know.
If anybody has any tips for making us all healthier, please post in. I know that astragalus is supposed to be a good immune system booster. I took a lot of it when I was first diagnosed. You can get it in capsules and just swallow them, or empty the capsules out and make a tea. It is a well known Chinese herbal treatment.
All for now.
Love Sylvia xxxx
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Hello Jenn.
I am so sorry to know that the lump is cancer, but you know that you can be treated, so hang on to that. Can you remind me whether you had a mastectomy or a lumpectomy. I am always concerned with lumpectomies that not everything gets removed, but that is just my own opinion.
I do hope all will go well with the PET scan on Thursday and the CT scan on Saturday and that by Monday you will be all set with a treatment plan. We shall all be here to support, help and reassure you through treatment. What treatments did you have first time around? I think sometimes they try to use different drugs.
Keep looking forward.
Fond thoughts.
Sylvia xxxx
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Hello FernMF.
Thank you for your post. I am so glad to know that you are getting on with your life. I know you are very hard working and I am sure that you are kept busy with your work as a legal secretary. You are also, obviously, very busy with your volunteer work, but so long as you enjoy it that is a good thing.
I do hope everything will go well with your new machine.
You are obviously getting a lot of pleasure out of your granddaughter. Children can bring such a lot of pleasure.
I hope you and you husband had an enjoyable 19th wedding anniversary on the 14th.
I do admire all the exercise that you are doing. I should think that you must be super fit.
I am sure your hair will normalise in time. It is very slow at first.
What kind of weather are you having in West Virginia? Here in the UK it is cold and damp and dreary, with little sun. Everyone I talk to seems fed up with the weather.
Fond thoughts.
Sylvia xxxx
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jenn - your question.. surgery or chemo first..that would be a million dollar question and i have no idea.
only thing i do know with my ibc trip neg in the old days they always did surgery first with ibc and then chemo but the stats were pretty appalling, almost a death sentence so they now advice to do chemo first to shrink the thing and if it had spread it could grab that too.
dont know its hard one and i only wish i had the answer for you.
xx
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Hello Jenn again.
I do hope you will not lose your job as it is just another problem to handle. I do hope, also, that you will not have huge problems with the chemotherapy this time around.
Did you have epirubicin, cyclophosphomide and one of the taxanes, either docetaxel or paclitaxel? Try to sort out your drugs with your oncologist.
I did have six months of chemotherapy before I had a mastectomy of the right breast. I had three months of epirubicin (Essence) and cyclophosphomide (Cytoxan) followed by three months of docetaxel (Taxotere). I was given the chemotherapy before surgery because I had a large tumour of 6+ cms and they like to try to shrink the tumour to make the surgery easier. My understanding is that preadjuvant chemotherapy (before surgery) is recommended for large tumours. This is something you should ask you oncologist about. I had treatment every three weeks. It seems now that they prefer to do chemotherapy every two weeks or every week, at a lower dose, and the side effects do not seem as bad. Mumtobe on this thread is going through chemotherapy with the weekly dose. Of course it means more trips to the hospital and more frequent cannulas, but this is probably better than bad side effects. You can always ask about ports if you did not have one before. Some patients get on with them and some do not. Also, patients now seem to have Neulasta or Neupogen shots (pegfilgrastim) to help with keeping up the white blood cell count. Again, some people are alright with these shots and others experience side effects. You also need to watch your red blood cell counts. I had no problem with either of these. Again, talk it all over with your oncologist. You might also want to choose what you feel is most comfortable for you.
I did not have any problems with chemotherapy and my biggest fear was, not the mastectomy itself, but being in hospital for five days and away from home. I was alright with treatment as long as I was at home afterwards.
If the tumour is small your oncologist will probably want to do the surgery first.
I hope this helps.
Best wishes.
Sylvia xxxx
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Hello Bernie
Thank you for posting that very informative article. Let us hope that they can get clinical trials going in the near future. I read about certain genes being silenced and allowing cancer cells to grow in TNBC back in 2005 when I was first diagnosed. The trouble with all of this research is that it takes too long and gives false hopes to people who are affected at the moment.
Have you heard anything from linali (Lindsay). She has not posted in a while. I do hope all is fine with her.
Best wishes.
Sylvia xxxx
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Hello Liv.
Thank you for your post. I was very interested to know about what went on with your oncologist. I think the experts have trouble with breast cancers that are not quite so common, whatever the receptor status. The most common apparently is invasive ductal carcinoma, with positive or negative receptors, so other ones, such as inflammatory breast cancer, lobular breast cancer, medullary breast cancer, metaplastic etc. are not so common. I am gald to know that you fought your corner.
I do hope you can get your surgery and then on to reconstruction so that you can put all this behind you.
You are such a character, Liv. You do make me laugh a lot. You have such great strength.
After my mastectomy, before I left the hospital, I was given “softies” to put in my bra, and give a supply of them to use until my surgery healed. They were very comfortable and I wore them for quite a time, as I did not like the idea of a prosthesis, but eventually I had an appointment with my breast cancer nurse and I was fitted for a lightweight prosthesis for my missing right breast. I soon got used to this and now do not think about it very much when I am wearing it.
You and FernMF must be very fit with all your exercising.
Regards to your dad.
Best wishes.
Sylvia xxxx
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Hello Liv.
Thank you for that information. It just proves that we have to keep reading labels. I am going to make note of the chemicals you have mentioned. I am particularly concerned about aspartame, which seems to be in lots of products.
Thinking of you.
Sylvia xxxx
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Hello Debra.
Thank you so much for your very informative post. I know that we are all interested in tumour markers and what they really mean.
I hope all is well with you.
Best wishes.
Sylvia xxxx
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