Calling all triple negative breast cancer patients in the UK
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Hi Sylvia,
You are always so thoughtful - thank you so much for your kind words!
I think Oncologists have guidelines to follow, but within guidelines can modify a course of treatment according to overall benefit for the patient, outweighing risks. Example: When my 1st ER score came in at 4% positive, my Oncologist was going to put me on Tamoxifen, although most Oncologists won't do that unless you reach a 10% (regarding the benefit to someone who is TNBC).
My only side effect was hand blisters. I had started treatment with winter/dry hands. And I developed blisters on my hands and had to go to a dermatologist. By treatment #3, I had like 50 little blisters on each hand, they went away, and after treatment #4, I had like 75 little blisters on the back of my hands. I also had peeling on the bottoms of my feet. The Oncologist had never seen a reaction like this, so he felt it was more dermatological, and sent me to his preferred Dermatologist. Other than that, I just kept up with fluids, and ate excessively to make sure I didn't have nausea and prevent losing weight. As a result, I gained 10 pounds, and never got sick to my stomach, and never too one pill for nausea! I lost the weight after chemo, and dropped 22 pounds, from healthy eating and exercise. I'm now at 106.
My Oncologist is Triple Board Certified, and a PhD in Hematology, so I have (well, still learning) to give up control to him. He was schooled in China, and then went to a private medical school here where they only accept 3% of the applicants. Our relationship works great now ... once we figured out how each other works. Now, we are 2 peas in a pod. We gave him a Thanksgiving card that read "this Thanksgiving when I'm counting my blessings, I'm counting you twice."
I found some information about dose-dense in this medical journal. I didn't read the whole thing, but found some mention of dose-intensified on page 207 - end of column 1.
http://www.oncologypractice.com/co/journal/articles/0705203.pdf
Sylvia, do you take milk thistle or have any thoughts of it? Also, I'm confused. Can we eat whole wheat? Also, in one of your posts you mention small amounts of protein from animals. Why is that? How many times a week do you have meat? We only eat organic chicken, wild sockeye salmon, and I'm considering not eating anymore turkey. That is because I was eating a lot of turkey before bc dx, and well, I've cut out anything that I have doubts about. In fact, I can't believe I've gone 14 months now without a diet coke and coffee. Who knew I could be so committed? I really loved both of those.
I also like my style cut oatmeal - it is 100% organic. I hope that is okay. I include it in the whole wheat category.Have a great week,
Debra
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Sylvia,
Here's another journal that discusses outcomes with dose-dense vs chemo-dense. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2882502/
I'm sure data is referenced a certain way to make a point - and so it just goes to show you that there are all types of theories/studies out there and hopefully our best efforts will come not only in the form of medicine, but also health and fitness.
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I find this quite difficult to get my head round; when I had my first dose of chemo (FEC), I was incorrectly weighed beforehand, thus getting 17% too much. My oncologist was very concerned by this, and looked very shocked when he realised what had happened. He told me he hoped this would not affect me adversely.
I cannot imagine having 60% increased dose.
Incidentally - the taxanes do not usually give a side effect of nausea.I was never given anti-nausea medication with taxotere.
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Maybe different treatments have risk of complications/side effects that are enhanced with a person's overall health. Maybe there was something in your health history that made him concerned about it with regards to the dose? I just remember him saying that at my age and in otherwise good health I could tolerate more.
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This is interesting. Here is the standard dose protocol for cytoxan and next to the breast cancer dosage, it has a button that says "dose intensification." You can then click that and configure a higher or lower dose. But when I typed in my 'then' height and weight, it actually went to a lower number than the standard dosage.
Here you go:
http://reference.medscape.com/drug/cytoxan-cyclophosphamide-342214
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Debra- I am struggling to understand. I looked at the first article page 207 and from I can understand, it was talking about the benefits of adding alkylating chemo to the class of chemo drugs to which adriamycin belongs. It's a long time until my next oncologist appointment so can't ask there for a while. I do wonder if dose intensified is another way of saying dose dense?
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Hi Sylvia,
Yes, I dance Charleston as well! Thanks for the link to the TV show. Unfortunately I'm in the US so it would not allow me to view the show. Hopefully it will be broadcast here sometime in the future.
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Hi Gill!
You are correct - I was just attempting to show Sylvia that the concept of dose-intensified has been around for some time. Now, in my other link (the ncbi. lin) it also talks about dose-dense and dose-intensified vs standard. So while it may or may not reference each individual's exact drug, the concept is still there, regarding the benefits that might be achieved with dose-dense and dose-intensified.
I have though seen the two items written as: " dose-dense/dose-intensified" when journals have talked about them in general. But it was my understanding that dose-dense is every 2 weeks, whereas, dose-intensified is a higher dose. I wonder if sometimes they do use both wordings together, because they attribute to the same theory. It looks to be the same concept, just different ways of adminstering a higher or more frequent dosage.
You are doing so well, it's apparent you got the exact right formula for you!
Debra
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A guy calls a company and orders their 5-day, 5kg weight loss program.
The next day, there's a knock on the door and there stands before him a voluptuous, athletic, 19 year old babe dressed in nothing but a pair of Nike running shoes and a sign around her neck..
She introduces herself as a representative of the weight loss company. The sign reads, "If you can catch me, you can have me."
Without a second thought, he takes off after her. A few miles later puffing and puffing, he finally gives up. The same girl shows up for the next four days and the same thing happens. On the fifth day, he weighs himself and is delighted to find he has lost 5kg as promised.
He calls the company and orders their 5-day/10kg program. The next day there's a knock at the door and there stands the most stunning, beautiful, sexy woman he has ever seen in his life. She is wearing nothing but Reebok running shoes and a sign around her neck that reads, "If you catch me you can have me".
Well, he's out the door after her like a shot. This girl is in excellent shape and he does his best, but no such luck. So for the next four days, the same routine happens with him gradually getting in better and better shape.
Much to his delight on the fifth day when he weighs himself, he discovers that he has lost another 10kg as promised. He decides to go for broke and calls the company to order the 7-day/25kg program.
"Are you sure?" asks the representative on the phone. "This is our most rigorous program." "Absolutely," he replies, "I haven't felt this good in years."
The next day there's a knock at the door; and when he opens it he finds a huge muscular guy standing there wearing nothing but pink running shoes and a sign around his neck that reads, "If I catch you, you are mine."
He lost 33 kilos that week.0 -
Bernie,
That is hilarious!
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I agree with Debra, this is the best one yet! Needed a good laugh today.
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Hello InspiredbyDolce (Debra),
Thank you for your post. I really do not know what to think about dose-dense and dose-intensified. From the sheer language point of view, I would think dose-dense refers to the cycle, every week or every two weeks, and dose-intensified means an increase in dosage. Perhaps these two terms got mixed up from the very beginning.
I do agree that individual oncologists do not necessarily agree. I remember being told that my oestrogen was 0% and my progesterone just 5% and that 5% was negligible.
Those hand blisters sounded awful and I am glad that is all behind you.
I agree that fluids are very, very important when going through chemotherapy treatment. What a roller-coaster this breast cancer treatment is. I think healthy eating, exercise and keeping to a healthy weight for your height and build is very important.
I am glad that you trust your oncologist. Is he Chinese? I ask that because my female oncologist is Chinese but I think she may have been born in the UK. She has a northern UK accent and when I see her I never see her as anyone but English. She is quite tall for a Chinese woman and very slim. I have complete confidence in her.
I realise she has her own ideas about treatment and was dead against ice caps to prevent hair loss, as she thought it might increase infection. She was very understanding with me as I had explained to her that I had never been ill in my life, had not had much medication throughout my life, except for a handful of antibiotics, and was afraid of what the chemotherapy drugs would do to me. She was very kind and later asked me how I was getting on with the drugs they had had to introduce into my body to save my life.
Thank you for the link, Debra, which I have read very carefully on page 207, end of column 1. I noticed they mentioned the two most common classes of chemotherapy drugs used in the treatment of TNBC but also in hormonal positive breast cancer. They are cyclophosphomide (Cytoxan), which belongs to the group of drugs known as alkylating agents, and doxorubicin (Doxil) and epirubicin (Ellence) which belong to the group of drugs known as anthracyclines. In my medical book these last two are also described as topoisomerase inhibitors. It looks as though, from that page, that increased doses of these two drugs have been given to treat TNBC. I do not know, now, whether I received extra large doses of these or not.
I do not take milk thistle or know much about it. I think it is another of the anti-oxidants and somehow protects and regenerates the liver. I try to concentrate on good nutrition from food rather than supplements. There are so many supplements being advertised, that sometimes I am concerned about their going the way of the pharmaceuticals. When I look along the shelves of some of the natural food stores I feel they could be turning into pharmacies. Some of the names are very arcane now.
I do not eat any meat or poultry, but that is my own personal choice. I am concerned about growth hormones in these animals, not to mention all the antibiotics. Animals are treated too much to fatten them up to make bigger profits. I feel the same about dairy products and do not touch them, because of growth hormones. I remember reading about IGF1 and the development of breast cancer. My breast cancer consultant told me back in 2005 that she thought there was a connection between IGF1 and breast cancer.
I eat wild north Atlantic salmon, and some cod and haddock. I eat a serving of prawns a week, cold water (not farmed). For the rest of the time I eat a lot of fresh fruit and vegetables, organic when I can, with basmati brown rice and a few new potatoes. I eat a variety of raw nuts and seeds and some beans. I eat organic whole wheat bread and drink enriched fresh soy milk, eat enriched soy yoghurt and use olive oil or walnut or grape seed oil for cooking and salad dressing. I think each person has to make their individual choice. Some people cannot do without meat, but I have never been a great meat eater. I do not drink alcohol or smoke and drink mainly decaffeinated green tea. Oatmeal, especially steel cut, is supposed to be very good. I have tried it, but usually make porridge with organic jumbo oats.
I am sure you are doing well with your diet. I think it is junk food that is the big menace.
Wishing you all the best.
Love.
Sylvia xxxx
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Hello Debra, again,
Thank you for the other links. They are all very useful but I think we have to be careful about having too much information and information that is perhaps too complicated for us to understand perfectly. It is obvious from these links that there is still a great deal of experimentation going on and yet it is still the same handful of very toxic drugs being used. I have read that there are about one hundred chemotherapy drugs being used and yet the same handful comes up for all kinds of breast cancer. Most frequently mentioned are cyclophosphomide (this is an antibiotic), epirubicin, doxorubicin, paclitaxel, docetaxel, and carboplatin.
We need to hear continually from the newly diagnosed to keep us up to date on what is going on with breast cancer treatment, especially with TNBC.
It would be interesting to hear from the newly diagnosed about whether their pathology reports are now stating information about TNBC that is also basal-like.
Keep well and keep happy.
Love.
Sylvia xxxx
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Hello Sylvia & All,
Sorry I haven't posted in a while. Have been browsing when I can but haven't got a lot of time to post with Emma, she's getting to be more demanding now, she likes all my attention to be on her
.Haven't had much news on the treatment front, starting rads tomorrow. Have been in twice for markings etc so I'm ready to go. I am still unsure of how many treatments I'm getting. Two weeks ago I was told 28 (25 + 3 boosters) but last week I was told it would be 25. Either way, I'll do as I'm told. Getting my port out on the 6th March. It has been a godsend but I'm looking forward to getting it out now for holidays & weddings I have coming up. I am bridesmaid for my best friend in July and will be so glad to not have it in on the day.
Weather is so beautiful here the last week so I have been walking an hour most days with Emma in the buggy, love seeing the sunshine, even if it is still quite cold.
Was speaking to my nurse the other day and she told me I'm 6 months post AC. Couldn't believe it!!! She okayed me to dye my hair which I duly did (organic dye of course). So glad to have the grey covered
I'm really liking my short hair but equally looking forward to it being very long as it was before (& blonde). I have about 3 inches of hair now so that 'sick' look is gone.Anyway I hope you are all keeping well, I think about you all constantly so while I may not post too often I am praying for each and every one of us.
Take care for now,
Carol xx
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Hello Missy123,
Thank you for your post. You must be extremely fit and happy with all that dancing. I do not know how to dance but I do love to watch all the fast dancing. The Charleston can be very entertaining, funny but amazing in its creativity. I think people who can sing and dance must bring joy to themselves and to others. Please keep in touch with us. I hope you will get to see the programme some day. It could be on PBS. You could set up your own website or blog and show us how you dance.
As Brucie says on Strictly Come Dancing UK, Keep Danciiiing.
Love.
Sylvia xxxx
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Hello Bernie,
Thank you so much for the post. You are continuing to make us all laugh. We certainly need it in the UK as they headline news makes me despair. It seems there is corruption and inappropriate behaviour in all spheres of what I call the Establishment. We, the people, cannot trust anyone.
What is going on in Ireland these days? I always think of it as a country in which the people have general joie de vivre.
Love.
Sylvia xxxx
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Hello sam52,
I just wanted to let you know that this morning I went for my DEXA scan to check what is happening with my osteoporosis. I was able to look at the results immediately after the scan and the results are much the same as they were at my last scan I January 2010. everything is basically the same. No improvement and no deterioration.
The young woman doing the scan said the paperwork would go to my oncologist, breast cancer consultant surgeon and GP. There was the usual comment about I was not on medication. I just said I was eating a calcium rich diet but not one based on dairy products, which is what they preach. She talked about Fosamax and other bisphosphonates such as a six-monthly injection, but I said thanks but no thanks and was thinking no way Jose and wanted to say Nay and thrice Nay!!!.
I told her I had read a lot about bisphosphonates and that my understanding was they caused hardening of the bones, making them brittle and causing them to break, because they prevented new bone from forming as it should do and causing old bone to accumulate, which is not what should happen.
I told here, what I really wanted to know was what was more likely to have caused the osteoporosis, the undiagnosed over active parathyroid gland or the breast cancer treatment. I further told her that osteoporosis from an over active parathyroid gland was supposed to be reversible, and that mine had not reversed after three years, so I was wondering if this was going to happen or not. If it was not reversible, then I tended to think that the osteoporosis was caused more by the breast cancer treatment and would not improve but I would be content if I could maintain it as it was now.
The young woman told me the results would be viewed by a rheumatologist, copies would go to the medical team, GP and to me.
I shall probably not want to go back now for a few years. The scan takes no time at all but there is a lot of talk that I do not find useful. While I was talking, just in front of me was a model of a bone with the words Fosamax above it, which I found very off-putting!!!
while I was on the scan I tried to switch off by speaking to myself in French and I was saying things such as je n'aime pas venir à l'hôpital. J'ai peur ici. J'ai envie de partir. Je ne vais pas revenir. C'est inutile.
Tell me what you think. You know I value your opinion.
How did things go with your father? Keep well.
Love.
Sylvia xxxx
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Hello Cynthie,
I was wondering how your meeting went on Feb 25th.
Helol Susaninicking,
What is your latest news? Will you begin treatment on March 6th?
Thinking of the two of you in Germany.
Love,
Sylviaxxx
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Hello everyone.
Have you seen the latest news about drinking alcohol and the risk of breast cancer?
http://www.breastcancer.org/research-news/20130222-2
If I remember correctly, it says 56 to 66 % of breast cancers associated with alcohol. Even though the emphasis is on oestrogen production through alcohol, it is not good enough for TNBC patients to shrug their shoulders, as cancer cells mutate.
Best wishes to all.
Sylvia xxxx
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Sylvia - I think you are taking this out of context. The article looked at 56,000 people (men and women) who died of cancer. They THINK 3.5% were alcohol related deaths, and 55-65% of the 3.5% were breast cancer deaths. By my calculations this means that there is a POSSIBILITY that 22 of the 56,000 deaths were alcohol related breast cancer deaths.
edit to add so 0.04 of cancer deaths may have been attributable to alcohol.
Also, please remember this study looked at cancer deaths, not incidence of cancer.
I recently read another article somewhere on the boards that talked about the risk factors associated with breast cancer, and th risks were incredibly small. Unlike lung cancer, for example, where statistics showed that smoking increased lung cancer chances by 15 times. I'll see if I can locate the article.
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I don't know how to make this a link. But this thread is quite short and has links to interesting articles plus comments from informed members.
All Topics → Forum: Clinical Trials, Research, News, and Study Results → Topic: Alcohol consumption and BC risk (sigh)
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Hi
I have spent the afternoon and evening at the private clinic. I must say it was superb. I guess if I could afford it I would go private all the time.
I had a fine needle biopsy of the salivary gland and sat in the waiting room for half an hour while the pathologist looked at it.The doctor called me in, all smiles, and said that the sample just showed inflammation and no lymphoma. I know most people will find it strange but I wasn't that pleased, mainly because I know where I am with lymphoma. Anyway they did a core biopsy to send to the lab for confirmation. I think it will show lymphoma.
Following on from a post from a lady who had Hodgkin's disease the doctor this evening did suggest that the inflammation might be caused by previous treatment. I don't know if the lady mentioned where her field of treatment was for her Hodgkin's disease but I could well believe that it may cause damage. A decade ago radiotherapy was much less targeted than now, or so I believe. In non Hodgkin's lymphoma radiotherapy dosage is relatively low disease is sensitive to treatment, however that may not be the case in Hodgkin's.
Michael
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Hi Michael,
Until you get final confirmation, hang in there! I think from what your Oncologist mentioned that things are looking good for you. We'll stay tuned until you report back.
Hi Sylvia,
Yes, he is Chinese. I don't think of him as Chinese or non-Chinese though. He resembles one of my relatives, so here at home we refer to him as Uncle ... He was a little hard to understand at first, and he talks a little fast. But I've got the hang of it now. My ears have caught up finally!
Bernie,
We're waiting on our next burst of laughter from you.
Hope everyone is doing well this evening - I've got to check on the orange potatoes in the oven.
Take care and talk to you all soon!
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Hello Gill,
Thank you for your post. Thank you for your correction. I think all we can say is that alcohol is given as a risk factor for the development of breast cancer and that, as my breast cancer consultant said, a risk factor does not mean it caused the breast cancer. I still think that breast cancer has multi-risk factors.
With reference to alcohol, this is directly linked to throat cancer and it is one of the most horrific cancers that you can possible have. I have witnessed this first hand, and the treatment, loss of voice and inability to eat other than through a tube is horrible.
I think everybody has to make up their own mind about drinking alcohol. There is no doubt in my mind that alcohol and smoking are the major causes of a lot of diseases and social problems. It is an addictive drug but one that the western world accepts.
I have read statistics recently about the number of women now developing lung cancer through their smoking. Tobacco is another drug causing illnesses and many deaths.
Hoping all is well with you.
Love.
Sylvia xxxx
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Hello Michael,
Thank you for your post. It was nice to hear from you and I can perfectly understand your comments about the private clinic. These clinics and hospitals do make our NHS hospitals look somewhat shoddy. Really, the NHS should be up to the same standard as the private hospitals.
Please let us know the results of the core biopsy and I do hope that will show you are in the clear.
It is good to know that in non Hodgkin's lymphoma the radiotherapy dosage is low.
All of us are hoping everything will be alright for you.
Is there any progress on the Janette Collins' Foundation? Are you getting a lot of people viewing it? How are you getting on in yourself? It will soon be the anniversary of Janette's death and that will be difficult for you.
Thinking of you and wishing you all the very best.
Sylvia
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Hello liv and Carolben,
I have not heard from you this week, so I wanted to say that I miss the two of you and hope that all is well.
Love Sylvia.xxx
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Hello linali,
I think you may have decided to leave the thread and just get on with you life. If so, I understand and just wanted to wish you all the very best. Be happy.
Love, Sylvia.xxx
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Hi Sylvia and all fellow TNers,
The team of docs (breast surgeon, oncologist, pathologist, radiologist etc etc) all agreed that my really tiny, very lazy monster of a TN tumor does not warrant chemo. Wow! They didn't even think it was a borderline call, which I was braced for when we walked in on Monday. "This is such a rare combination of Triple Negative and Grade 1 that our pathologists checked the tumor specimens many times to make sure they were correct."
So we are thrilled, not just that I will avoid chemo and all its accompanying miseries, but even more that the nature of the tumor was so nonaggressive that chemo wasn't required. (Does that make sense??)
I'm still pretty dazed by it all. Here's how I described it to a friend: "I feel as if a huge lightning bolt slammed into the ground next to me and MISSED! I'm staggering to my feet, shaken, a bit charred but with a huge grin on my face!"
Still six weeks of radiation to come but that's a given with a "lumpie". I'll get a second opinion just to reassure myself that nothing was missed---there's an excellent oncologist at the same hospital where I'll go for the radiation.
That's it for now, but it's a lot!!
Hugs from Cynthie
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Cynthie,
Congrats!! I am tickled tickled for you! Have you had the genetic testing done yet? You might consider the test to determine if you are a carrier of BRCA 1 or BRCA 2. Carriers have an increased risk of ovarian cancer.
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I don't think they've done those tests. Can they do the BRCA tests on the preserved lab specimens? I'm 57 and my ovaries are OVER.
But it's something else to consider (i.e. worry about haha!) Here in Germany, they loooove the vaginal ultrasounds, so I've had that every time and it all seems normal. But just like mammograms, US does not pick up every little %$# thing, so I'll ask.Cynthie
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