Calling all triple negative breast cancer patients in the UK
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Hi Sylvia
I have been out all day with relatives and have only seen snippets of the Easter Rising celebrations. I might catch up with it later.
As far as I, or anyone else, knows, Matthews career is going fine, but he is a bit difficult to get hold of for any length of time. I think we all are cautious because JC might come into the conversation and get his blood pressure up 😯 I know he is busy campaigning for the London mayor.
A lot of the research stuff I have gathered is written for doctors. Everyone will get fully qualified after they have read half a dozen. 😀
Here is today's, I don't think it is too heavy:
http://global.onclive.com/publications/Oncology-li...
Michael
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Michael,
I wanted to thank you for posting the links. I read the first one you posted, that was interesting but I found myself going to many, many other links from that one. One of them I found not only interesting but entertaining. It was titled "Common food additive may prevent peripheral neuropathy from chemotherapy". The additive? A commonly used dog food preservative! I have heard over the years that our dogs eat better than we do, perhaps it's true.
Be well, Mary
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Sylvia,
You posted an article as well about a vet who seemed to have found an effective treatment for cancer after using it on animals. People were flocking to his office with pets and without them to find out about it. There is so much need for a cancer cure, interest in it, research and money spent on it, surely one of these days something definitive will be found. Or perhaps it will just be a drip-drip of one new protocol after another. I guess as long as it works either is okay.
I have read too about sleep being affected by laptops, tablets, smartphones. I do not take any of these things into the bedroom. For one thing, my phone slightly buzzes whenever a piece of mail comes in, or a text. I was vacationing with a friend and we slept in the same room. I turned my phone off, but hers buzzed and beeped most of the night. Very early in the morning I woke her and asked her please to turn it off! And I have also heard about the blue light they emit being sleep-disruptive. I often leave the house and leave phone behind, I think nothing of it but have friends who worry when they text me and I don't answer immediately; I guess it's nice to be worried about but sometimes it goes a little too far.
I have been tuning out the election stuff; it has gone from being entertaining and sometimes substantial news to just being downright nasty. I don't know how any candidate will come out of this looking even a little bit presidential.
I read terrorism news this morning: "Christian Indian priest crucified in Yemen." ISIS takes credit for it. They also killed 4 nuns, several elderly residents of one of Mother Teresa's nursing homes for the poor and a few other people. They seem to have no trace of humanity, it is hard to imagine the thought process of these terrorists. All of our mighty armies, and military equipment are almost helpless against this type of warfare; small groups who blend in with populace, hide in the shadows and emerge with homemade weapons and pure brutality and single-minded hatred. One group is killed or captured, another emerges; it's like the child's game of whack-a-mole.
I wish I had taken a little more time when I was diagnosed with cancer to do a little more research. I could have also taken more advice about where to go for treatment. I trusted my oncologist, I knew him because he was my husband's hematologist. . I checked my treatment regimen with the normal protocols and I thought it was in line. I would go in and have my infusions, and return for the neupogen shots, and go back in 3 weeks for the next infusion. I started out with the 3-drug therapy. After my first session, I felt dreadful but assumed that was normal. About a week after the infusion I just laid in bed because I was so weak. I called the office and was told to come in, they said I was probably dehydrated. I went in and had a bag of fluid through my port. I remember my blood pressure was 70/40. It went up a little after I received the fluids. My friend took me home. The next morning I got up and got my husband's pills together for him to take, and I almost passed out while doing that. Then I laid down again and felt very bad. I took my temperature and it was 101.5. The nurse had said to call if I had a temperature spike. I did call, and the nurse told me to go to the Emergency Room. I called my friend, she came and got me and off we went. That was a Tuesday, things were a blur after that until sometime Wednesday night, I remember seeing nurses going in and out with masks and gloves. They had started giving me antibiotics, and the shots to build my white blood cells, and once that count came back up I began feeling better. I went home on Friday, and they broke up my drugs after that. I got the Adriamycin and Cytoxin together, and after that the Taxotere on its' own. I made it through that, but the doc also reduced the dosage because I had so many side effects. I found out later that when I was so ill my white cell count was 0.02%. Red cells were also very low, don't remember exactly what that was. My oncologist (who was on vacation at this time), seemed puzzled at my reaction to the treatment.
This is getting long-winded, the upshot of it all is that the Center where I treated had no thing extra to offer that I could use. They had a nutritionist, seldom seen, who probably was okay for patients who had no idea of how to eat. She touted strictly conventional basic food groups. They had a couple of therapy group sessions a week, but I never felt well enough to go. That was about it. Just the doctor, and the nurses; who were afraid to tell me anything without going through the doctor. If I ever have a recurrence, I will go elsewhere. For my checkups, I am still going to the same place. I have a different doc, because mine retired, on my last day of chemo. She has an excellent reputation, but if I go to her with a side effect, she is not very helpful and usually tells me to see my GP. If it's a pain in an area of concern, then she will follow up with a diagnostic test.
A lot of people I know are getting into the essential oils, I am not very educated on it. I have a few, a minty one that is great for clogged sinuses. Recently I bought one with chamomile and vanilla, supposed to be good for the throat. I thought it might help with my choir singing! I have read about frankincense and it is supposed to be good for cancer prevention. I don't know if I would put my complete trust in it.
I had better close for now, have a great day, or evening!
Talk soon, Mary
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Hi Mary
Judging by the propensity for my dog to put on weight, she certainly eats getter than I do 😁
Here is today's link:
http://www.fredhutch.org/en/news/releases/2016/02/...Michael
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Hello Michael,
Thank you for your post and the second link. I am going to read this second one in a minute.
I do hope you got to see some of the news about the Easter Rising. That speech, back in 1916, was truly inspiring.
Do you think Matthew will run to become an MP in the next General Election? I think JC is a really good person and has good policies, but I think the population of England is largely politically ignorant and cannot get past the class system and thinking the upper class has a right to govern. They also pretty selfish and are not interested in what is good for the country as a whole. The younger generations do not know anything about the generation that went through the war and the overwhelming support for the Labour Government of 1945 and the revolutionary policies that it brought in at the time. All those policies are slowly being destroyed. The younger generations are growing up in a completely different country.
Tony Blair destroyed the Labour Party and it is now very much establishment. I admire JC and also John McDonnell. I think that horrible group called Progress will probably manage to get rid of JC, and for me that will be the end of the Labour Party.
I have been following the campaign for Labour Mayor, but, of course, have no vote since it is for the mayor of London. I do not really support any of them!
The referendum campaign is awful and I am sure we shall all be sick of it before June 23rd!
That is all for now. I am going to look at the link and then re-post.
Best wishes.
Sylvia
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Hello Michael,
I have just had a quick look at the second link and found the reading easier and also very interesting about triple-negative and the percentage of patients with BRCA1 and BRCA2.
It was interesting that the percentage of patients with BRCA1 is 70% of TNBC. I think this proves that all patients with TNBC should have this test. At the moment I think you can get to see a genetic nurse if you request it, but she will only put you through to a genetic consultant if you are young, and have a high family history. This was my experience. I had a long interview, filled in a load of questions, but was told, because of my age, I was not going to be put through to a consultant. This, despite the fact, that there has been a lot of cancer on my mother's side. I know virtually nothing about my father's side.
It was also interesting to read that BRCA2 was a low percentage with TNBC, but 70% with oestrogen positive.
I was also interested to read about treatment with Olaparib.
Best wishes.
Sylvia
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Hello Mary,
Thank you for your post. It is true that I did post an article about a man called Dr Carter who was English and treated dogs and then humans with a liquid known as CV247. Dr Carter is now dead, but I saw an article recently dated 2014 where this treatment was still ongoing with another doctor. This CV247 was also being used by an oncologist, Dr Rosy Taylor, in a hospice in the south of England. In the 2014 update that I read, she was still backing its effectiveness, although she has retired from the hospice and has an important position somewhere else. There was a programme on the television about this product back in about 2010, in which a man was talking about how his cancer had disappeared with this CV247 and had been in remission for over ten years. My uncle, diagnosed with throat cancer, saw this programme and wrote to the man in question, because he did not want orthodox treatment. To cut a long story short, I wrote a letter to Dr Rosy Taylor and obtained the CV247. It did not work for my uncle, but I think his cancer was too far gone.
This product is not claimed to be a cure, but it is said to be an immune booster. It consists of nothing harmful, just four substances, copper, manganese, vitamin C and sodium salicylate. "The formula makes no attempt to directly kill cancer cells, but rather to boost the immune system, lower inflammation, improve antioxidant systems, block the blood supply to the tumour, and protect the genetic integrity of healthy cells to stop them from switching on pathways that lead to cancer".
"Besides taking CV247, patients had to follow a strict organic wholefood diet, as Dr Carter believed that artificial chemicals in the environment and in our foods impaired the immune system and put a strain on our liver".
You might ot have a look at this article and sign up for Cancer Defeated newsletter.
This article was actually published in November 2014. Part of the article explains the benefits of the four ingredients which are beneficial to cancer patients.
A lot of this seems to make sense. We know the benefits of vitamin C and there is more and more information about aspirin these days. Sodium salicylate is related to aspirin but much gentler on the body and has remarkable anti-inflammatory properties. Dr Rosy Taylor said in the article that she thought much of the benefit from CV247 came from sodium salicylate and the organic diet.
It is sad that people's pets are getting the same diseases, including cancer, as we humans. I remember a friend living just up the street to me here, announcing to me that her little dog had breast cancer. Having been through breast cancer I felt a sense of shock. Unfortunately that dog died. Do you think that dogs or cats are now getting diabetes? In humans it seems more common than cancer and is a horrible disease. People do not seem to realise this and yet a proper diet is the main tool against it, the rainbow diet!
I do remember posting about light and how we need to avoid it at night. This exposure to light now seems to be getting worse because of all the technological toys that are coming out. Raymond and I have just a laptop computer and try not to use it too much. We do not have tablets or smartphones and I think smartphones have become a social nuisance.
I shall have to end now but I shall post about the rest of your post either later today or tomorrow.
I do agree that your election is getting very nasty, but I think our referendum may be even nastier! If I look at our politicians, especially the Tory front bench, I think we have a bunch of privileged toffs who live in ivory towers and have no notion at all of the struggling lives of ordinary people.
I do hope newly-diagnosed patients are viewing and benefiting from our experience and learning to take one stage of their cancer journey at a time, and not get overwhelmed by too much information.
Talk soon.
Sylvia xxxx
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Hello everyone,
I am posting this for newly-diagnosed patients going through chemotherapy to help them sort out the different drugs they may be offered and to urge them to have explanations for why the particular drugs are being given.
These are the basic drugs.
Adriamycin (doxorubicin). For some reason, in the regimens, this comes up as A.
Ellence (epirubicin).
Cytoxan (cyclophosphomide).
Taxotere (docetaxel).
Taxol (paclitaxel). In the regimens these two come up as T, which can also stand for Taxane.
I recently saw a post where the regimen was CT which means Cytoxan (the brand name) or cyclophosphomide, (the generic name) and T will mean Taxotere or Taxol (the brand names).
My oncologist told me Taxotere was less harmful than Taxol. It is worth knowing which drugs you are having and why.
Women on this thread have said they found weekly chemotherapy treatment to be easier to withstand than every three weeks.
Wishing everyone going through treatment a successful journey. You will get through this.
Best wishes.
Sylvia
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Hi Sylvia
I went with Janette for her assessment centre and they seemed to have a points criteria to decide if you were to be tested. Janette met the criteria and the results came back negative for any problems.
Here is today's link:
http://medicalxpress.com/news/2016-02-surgery-wome...Michael
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Sylvia,
I hope my personal chemo story wasn't too negative, I was only trying to say that I hope people will go to the best place for care that they can, and hopefully they will be cared for by a support team, as well as the oncologist and the nurse who administers the chemo. I wanted to stay closer to home for my husband's sake, so that is what I did. It's hindsight for me, and now I know a lot more than I did then.
Most people do not get neutropenia, nor are they hospitalized while doing chemo. But it does happen once in a while.
I agree with you, Sylvia, that the patients who seem to tolerate treatment the best do the AC (Adriamycin or Ellence, and Cytoxan) together every 3 weeks, and then do the Taxotere (or Taxol) in a smaller dose for 12 weeks. My oncologist mentioned that early on after I didn't tolerate the first 3-drug dose, but then he split the drug dose and I finished without the 12 week method. I have read since then that the risk of neuropathy is less if the patient receives the Taxotere (Taxol) in smaller doses more often, rather than in a more concentrated dose. I have 2 good friends, however, who did the 3-drug regimen 6 times and never had the symptoms I did. They were not Triple-Negative but had the Estrogen+ tumors. One of them did lose much more weight than I did.
Nice weather has returned, for a little while. April is the cruelest month, didn't someone say that?
Talk soon,
Mary
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Hello Mary,
I am continuing with your last but one post. It is appalling what is happening with the Christians in the Middle East. It looks as though we are in another hundred years' war like we had in Europe in past history. There seems to be no end to the cruelty and barbarism of human beings. We are back in the Crusades. I have no time for religion and here we see supposedly religious people at one another's throats. Whether it be the Catholics or the Protestants, the Sunnies or the Shias, or any other religion, they do not get along. We should never have to gone interfering in the Middle East. We have now brought war to our own countries and there will be no end to it.
With reference to your chemotherapy treatment, you have to tell it as it was for you. It is good for the newly diagnosed to hear individual stories and to know that all different kinds of things can happen to a patient. We all have to know that horrible things can happen. I think I was very lucky to sail through my chemotherapy treatment, as lots of patients have very nasty experiences. Even the peripheral neuropathy in my feet did not come to my notice until after I had finished treatment. With hindsight I might have tried icing them, but I was not aware of this and it was not mentioned to me. I just know that my oncologist was dead against ice caps for fear of infection. I did drink a lot of water all the time and I think this kept my blood pressure normal. I also had plenty of prunes, plenty of soy yoghurt with cultures, green tea, iron tablets and tea made with fresh ginger, so I never had nausea, being sick, constipation, diarrhoea, low white or red blood cells etc., so I think I was very lucky.
I think we have to tell ourselves we did our best with the knowledge and information that we had. If there is a second time around we shall be better informed.
That is all for now.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for all three links. They all make interesting and informative reading, and we are very lucky to have you on this thread. I do like your sense of humour.
Fond thoughts,
Sylvia.
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Hello Penzance,
Thank you for your PM. I have answered it to the best of my ability and I hope this helps. Please feel free to post on our thread as it is good therapy to share problems.
We look forward to hearing from you and please make getting your treatment sorted out your first priority.
Thinking of you.
Sylvia xxxx
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Hello Penzance,
I just been to the All Topics on BC.org under Treatment for LCIS and found it most informative. Please have a read of it.I found out that LCIS is usually hormonal and that treatment can be with products such as tamoxifen or Aromasin,depending on the age of the patient.
There is also the option of,wait and see, or to have both breasts removed, as the LCIS can develop into invasive.
I hope this helps, but please read the relevant section under All Topics.
Sylvia xxx.
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Hello Michael,
Thank you for your posts and the links. I am running a bit behind, so I have not yet looked at the last couple of links.
Could you number then when you post, so that we can refer to them more easily. I think you have posted five so far.
I would be interested to have some of your own comments on the links.
It is a sunny day here after a cloudy start, but still cool.
Best wishes
Sylvia
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Hello Mary,
Have you received your latest email from Chris Woollams at Cancer Active? I am going to try to read mine today.
I have also just received the April issue of the magazine What Doctors Don't Tell You. Do you read this magazine?
Have you been able to read all of Michael's links? Do you have any comments?
Fond thoughts.
Sylvia
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Hi, Sylvia, Michael and all here,
I have been trying to keep up with things here; we are having nice weather the last couple of days so I have been trying to get some things done. All these things make me very achy so I am now sitting down and typing!
Michael, I also like your sense of humor. It is hard not to feed a beloved pet whatever they want, I have a 20 year-old cat, she eats quite a bit but still shows weight loss every year when she is weighed at the vet's office. But she is never happy with what I give her, and always wants something different.
I have read the links; one was about the cancer cells sticking together like a "gang of thugs". It sounds like they are trying to figure out how they spread. One article was about a new drug, with a very long name. It is indicated for mets to TNBC. Trials are in early stages, so far 31% of patients previously treated with all the usual drugs are responding favorably at 31%. That doesn't sound very high to me, but I know it's a start. The median survival progression was at 6 months. That doesn't sound high either, but if I was the patient it might sound pretty good. It has the same side effects we know; neutropenia, fatigue, diarrhea, nausea, but not at high percentages. However, neutopenia was among the highest, that is quite debilitating.
One of the articles was about women with the BRAC-1 or 2 gene. I did have the test, since my sis was in her early 50's. I was negative. This article delves into whether or not women choose to have pre-disease surgery or not. I know 2 young sisters who had their children and then had their breasts, uteri, and ovaries removed. Their mother died of BC and was positive with the gene, and their brother is a carrier of it. Difficult decision, indeed, especially if one is young.
The latest link was about the survival rate of TNBC versus non-TNBC cancer, I believe. I could not get the whole article, only the first paragraphs. It said OS (overall survival rate) and DFS (disease-free survival rate) were shorter in TNBC patients. But only significantly worse in Stage III TNBC, not so for Stages I, II, or IV. Not sure what that means, guys, I guess they are comparing survival times in stages of all types.
I also know the sun is shining, my body aches from working outside, and I don't want to think about survival rates any more today.
Sylvia, I did get the Woollams email, and also the latest from Ty Bollinger, have not made it through them yet. Usually after reading them I am taking a new supplement or sniffing a new essential oil though, probably that will continue!
I hope you are having nice weather too!
Talk soon, Mary
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Hi Mary
Thanks for your comments. The statistics being quoted can be confusing and I guess that I am at an advantage as I have training in that field. I know that a 30% increase in survival doesn't sound that impressive but in a disease as brutal as TNBC I think it is quite significant. It also helps to be familiar with the difference between terms such as median, average etc.
A lot of articles I only skim read but the overall impression is that progress is being made, quite rapidly I think, and that a whole new approach to disease is being opened up.
Anyway here is today's link, number 5 I think. I am afraid that it is a "pass the aspirin or wine" type of read but it will have some researchers drooling at the mouth. BUT you only need to read the final few lines to know what it is about. Good luck:
http://stke.sciencemag.org/content/9/414/ec24Michael
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Hello Mary,
Thank you for your post and for your input about the links that Michael is posting. It is good to have comments from people on the thread. My hope is that in the future treatment will be able to move away from all these toxic drugs, their nasty side effects during treatment, and the long term side effects that probably never leave us. We could do without drugs that cause neutropenia.
As for the BRCA genes, I do not think I would go for the drastic treatment of having breasts and ovaries removed etc. I think I would opt for monitoring the situation, but that is my own personal preference.
I do wonder what all this information is doing for newly diagnosed patients. It must be very frightening and confusing. I think new patients probably need to stick to basic information, such as what type of cancer they have, the receptor status, stage, grade and the plan of treatment about surgery, chemotherapy and radiotherapy. I would deal with these in stages and cope with each stage as it arises. I would not be looking too much on the internet etc.
I have just read the Chris Woollams information and always think that the information is useful, and up to the individual to make up their mind about it.
I do believe in integrative medicine.
Wishing you all the best.
Sylvia xxxx
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Hello Michael,
Thank you for all the links that you are posting. They are always interesting to read. I have looked back to your first link and it was on March 26th. I have counted forward and counted eight links posted in all, so if you post the next one as link 9 I shall be able to keep track of them.
Would you believe that Jeremy Corbyn and his wife were here in Exmouth last week as part of their holiday. Apparently they went for breakfast on the sea front in Aby's Restaurant. There was a photograph and an article of him with Leila and her brother who run the café. They used to be in the Pavillion and we went there often and got to know Leila. We have not been to them in their new location. Leila obviously liked him and his wife very much.
http://www.exmouthjournal.co.uk/news/labour_leader_likes_exmouth_1_4476299
I am very busy at the moment but shall try to catch up.
The weather is very miserable here today.
Best wishes
Sylvia
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Hi Sylvia
Jeremy looks as though he enjoyed his tea and cake 😊
Here is link 9:
http://www.utsa.edu/today/2016/02/cancertherapy.ht...
Michael
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Okay, Michael
re: article from sciencemag
Now I think you are showing off. Please may I have a double aspirin?
That was difficult, and I won't pretend I kept up with all the scientific terms, but I agree with you on your point. These articles point to a lot of interest in finding a fix for cancer generally, and triple negative specifically. Progress is good.
I notice you posted another link, frightening. I will look at it a little later.
Thanks, Michael
Mary
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Link #9 certainly piques my interest - sounds a very exciting possibility and not so invasive as chemotherapy - hope it becomes a reality very soon!
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Hello Michael,
Thank you for link 9. I have just printed this off and a few others, in order to catch up. I prefer to read a hardcopy rather than sitting at the computer.
All this information is very useful. I would be very interested to hear from a man going through breast cancer, especially someone with triple negative receptors.
From time to time I do look at survivors around the world on this forum, and have only seen one man with breast cancer.
Wishing you well.
Sylvia
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Hi, Sylvia
I have looked at Chris Woollam's links, and found them interesting.
The treatment for bone metastases called hyperthermia is interesting. I pictured it as someone sitting in a big sauna-like object, but apparently there is a method whereby they can deliver heat directly to tumor with ultrasound. There is also a more systemic heat delivery system, but he thinks it's not as effective.
He touts the use of probiotics to avoid liver cancer. Probiotics are supposed to help the body's immune system so I would think that would help everything. I do take probiotics daily, I take a capsule and drink a little kefir. I don't often eat sauerkraut, that is a good thing to do at times too.
He also passes along info on acetyl-l-carnitine. It is said to slow the progression of Alzheimer's disease if taken early in the development. At the end of the statement it states that it is found in chicken, beef, pork, seafood. But I think one is supposed to take a more concentrated form, 2 to 3 grams a day He also talks about extra-virgin olive oil's benefits, and thinks it should be the only oil we use. I don't have a problem with that, really like olive oil.
There are other links concerning heart problems, diabetes, and on how to reduce bad cholesterol. To avoid brain overload, I mostly look at the ones with conditions I am currently concerned with, so I haven't looked at all of them.
I got Ty Bollinger's weekly digest about the same time. It was brief this week. The most interesting article to me was about cell phones, he states that they can cause tumors with overuse. There are common-sense tips on usage; such as limiting phone calls, don't carry them on your body, don't take into the bedroom when you are going to sleep, don't use when there is bad reception. That's a tough one for me, I live in the country and it's usually bad reception. Of course, when it's very bad, you can't use it at all. "The Truth About Cancer" is going to run again in full. I also got a notice that Bollinger will be doing several symposiums in North America. He will be in Toronto, Canada, this coming weekend. After that he will be in Georgia USA and then Las Vegas. It sounds interesting, 2 days and many guest speakers, some of whom appeared on the TTAC video. None of the meetings are close to where I am.
Talk to you soon, Mary
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Adagio,
I like the method of treatment described in #9 as well, love the mental picture of the tumors committing suicide!
Mary
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Hello everyone,
I thought you might be interested to have a look at a chart that caught my interest in the latest issue of What Doctors Don't Tell You. It is entitled Anyone for Russian Roulette? and underneath the title it says "Only a small percentage of cancers are caused by 'bad genes'. New research has discovered the vast majority are down to poor lifestyle choices. Have a look at the chart and tell me what you think and if you can, read the article. It is not too long. I like the analogy to Russian Roulette.
At the top of the article it says "Researchers at Stony Brook University discovered that most cancers are down to bad lifestyle choices or environmental pollution, not genes".
I was glad to see that you are all busy interacting and I am glad that Michael's links are brining in comments and opinions.
Best wishes
Sylvia
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