Calling all triple negative breast cancer patients in the UK
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Hi rhonda,
I hope they find out soon what's causing your fever. It's good that your blood levels are ok. Bed rest, stay calm but be always vigilant about how you feel. You cant take fever lightly when you're on chemo.
I am about to leave home now for my 2nd chemo. Talk to you later
Take care.
Gina
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hi Rhonda
I had 5 days in after a febrile neutropenia 1st AC with Iv antibiotics and felt heaps better afterwards
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Hi all here
Happy Thanksgiving to all American friends here and I wish long years of health , wealth and happiness for all my dear friends here .
Love
Hanieh
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Hello Rhonda,
I am so sorry to read that you ended up in the hospital. I do hope you will soon be better and back home. Ending up in hospital for low white blood cells does happen, but it is probably the safest place to be when this happens. Did you have some Neulasta shots after your chemotherapy session? I thought this was pretty current now and was supposed to stop this, although Neulasta has its side effects.
Please let us know when you get back home and make sure you get plenty of rest.
Sending you all my love.
Sylvia xxxx
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Hello Mary,
I have read the link that you sent me from Chris Woollams and I was wondering what you thought of it. I did feel it was somewhat doom and gloom about TNBC and I did not think this was right or very encouraging for TNBC patients. The fact of the matter is that whether we are receptor negative or positive, we all have a mixture of the same chemotherapy drugs. The only difference in treatment is that those that are hormonal positive get tamoxifen or aromatase inhibitors post-standard treatment. If you are HER2+ you have to have on and off treatment with Herceptin, another nasty drug. These drugs are no picnic to take for years on end and all have nasty side effects. I for one am glad that I do not have to take them and that after standard treatment I was left with NED and drug-free to let my immune system strengthen and fight.
As we have said many times on this thread, be positive about being negative.
What did you think about the mention that Taxol (paclitaxel) was only 3% effective in women. How did you interpret this?
I probably shall not have time to listen to the other link, and I think you gave us an excellent report on this, for which again many thanks.
I do hope you had a good Thanksgiving Day. I am proud of this thread because we have good in depth discussions and I think that this thread and the Calling all TNs has probably all the information we need gathered over the years.
I think that too many threads get created and disappear quickly for lack of use. It is more useful to have quality than quantity. I like to feel I know the people here other than for their cancer.
Keep in touch and keep up the good work.
Love.
Sylvia xxxx
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Hello Kath,
How did you get on yesterday?
Thinking of you.
Sylvia xxxx
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Hello Hanieh,
I am always glad to see you on the thread. What is going on in your life these days?
Thinking of you.
Love.
Sylvia xxxx
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Hello adagio,
We have not heard from you in a while and I was just wondering whether all is fine with you and your husband and where you are now.
I have lost count of when you actually left for Australia/New Zealand and how much time has gone by since then. Are you back in Canada now?
How does Canada compare with Australia/New Zealand?
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello Breastcancerhusband (Tom), PeterandLiz (Peter) and Chatterbox (Michael),
I do hope all is well with you and that you are still viewing.
As husbands of women that have gone through breast cancer, it is so useful to have your experiences related on the thread. I thought of you when I saw that the husband of a breast cancer wife had started a thread to talk about it all. I thought you all might be able to give him some support, either by bringing him over to this thread or answering on his. He is Awedmusic and his thread is My bride of 40 years has TNBC.
I thought he would be better off on here or on Calling all TNs.
I do hope you are all well. I was wondering what you thought about the latest doom and gloom in our country about the lack of pathologists and length of time it is now taking for cancer patients to get their biopsy reports through. Apparently we have a shortage of everything to do with the pathology labs.
To Michael, how is the Janet Collins Foundation going these days?
Wishing you all the very best.
Sylvia
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Hello Gina,
I hope all goes well with your chemotherapy today.
Yesterday I bought another lot of fresh turmeric to put with my vegatables.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia,
I guess I had a different reaction to the Chris Woollams post on TNBC, I thought it was rather positive in stating that it was thought proper nutrition effective against it. Of course, one has to be careful with that, because as we all know, we can try to do everything right and still get cancer! As to the taxanes being only 3% effective, that is certainly a very low number. When I was treated almost 3 years ago I was told that taxotere was a very good drug against TNBC. Perhaps that perception has changed, perhaps that's why we are given a cocktail of drugs and why so many women now are receiving the carboplatin as well.
As far as not watching any of the info on the other link, I understand, there is a lot to take in. I do think that if you sign up you can come and go as you please, and just choose to hear the speakers you want to hear. Most of them only speak for 45 minutes or so. Warning: once you sign up, you will receive messages in your inbox from TTAC. I find them interesting but some might not like the extra mail!
I had a message from Gina about starting a new topic on the main board with that link; but I am hesitant to do so. There have been a few who have not been very receptive to some of the alternative views on treatments, and the last thing I want to do is make anyone uncomfortable or unsure of their treatment choices. I think many of the people here know that we do discuss those things and probably look in from time to time. What's your opinion, am I overthinking this?
I had a good Thanksgiving, saw a lot of family and extended family; with the only drawback being I had to drive a bit, from one place to another to another. Today will be easier, only going to my nieces' home this evening, very close to home. I did not eat too much yesterday, since I missed the big meals at two places, and by evening there was only vegetable snacking with some chowder!
Hope you are having a peaceful weekend,
Talk to you soon,
Love, Mary
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Hello Mary,
It was nice to hear from you and to have your view on Chris Woollams' post on TNBC.
Of course I do agree with Chris that proper nutrition is an effective weapon against TNBC. I think that applies to all illnesses. I have always said that you are what you eat. However, as you say, it does not seem to be a guarantee and a lot of us ended up with breast cancer despite being on healthy diets. As we all know, as well, there are so many other factors that added together can make us end up with breast cancer.
Chris mentioned paclitaxel (Taxol) in particular. He did not mention docetaxel (Taxotere). I had Taxotere back in 2006 and at the time I was told it was effective and not so harmful as Taxol. I listened to this but thought, from reading, that Taxol was given mainly in North America and Taxotere in Europe and was taken from the different yew trees in these two continents. The majority of us have survived TNBC so it surely must have a better success rate than 3%. We just cannot believe any information 100%.
it could be that carboplatin is now being used for additional support. All these different chemotherapy drugs act in different ways.
Thank you for the additional information about the Ty Bollinger link. I shall probably sign up now and pick and choose.
I do hope that next time around I shall find myself signed up once more for the Chris Woollams email.
I did read what Gina had posted to you. I do read every post on this thread, so that I can keep up with everyone and get to know them better. If I were you I would not get involved with setting up a new topic on the main board with that link. There are already established threads on alternative treatment, which I do have a look at from time to time. If I remember correctly, at the top of these threads there are statements about these views and they do not reflect the policy of the Board. That is, at least, how I understand it. I think the more threads that are started the more confusion there is and the more superficial everything becomes. We all know there is opposition between orthodox and alternative medicine and that it can all cause a lot of ill feeling. I think it is good that we are slowly moving towards integrative medicine with orthodox, complementary and alternative medicine coming together. I usually make up my own mind and do what I think is best for me.
I think that as we are functioning in a breast cancer support organisation, we should have depth and serious thinking and not develop into another Facebook.
I agree with what you say. I think on this thread e have good open discussions, do not strive to convert one way or the other and leave people to make up their own minds freely.
I was glad to know you had a good Thanksgiving. It sounds as though it was busy.
That is about all for now. It is a very chilly day here and one in which you just want to stay at home.
Fond thoughts.
Sylvia xxxx
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Hi All,
I've heard some very bad things about "The truth about cancer" and the people that post articles through them (feeling on my soap-box - it's a pet hate of mine).
Most of them have no oncology experience and have taken real articles and completely misrepresented them. I know someone who is following some of their stuff and regularly posts from them like "bicarbonate soda cures cancer". When in fact they had taken a article which discussed it's use as a substance to use in microbiology to highlight cancer cells in MRI testing to see progression/regression during chemotherapy (which they often discourage the use of saying it isn't natural - Taxol/Taxotere...Yew tree?) This got transposed as a "cure" which should be drunk with lemon juice.
One Youtube film had someone using some kind of acid she was advocating/selling to remove her tumour herself at home - as it would draw it out to the surface - and she could just them "pluck it off" and be cured. They regularly use quite inaccurate descriptions of how cancers grow and spread - and don't seem to understand what "sugar" is (Carrots, parsnips, potatoes, bread... ) - like everything you eat is processed by your body either into energy "sugar"(use now) or fat (store for later). And another has an infra-red camera to spot tumours.
They are regularly called out for their claims and I believe have several court cases outstanding against them in the US.
https://www.facebook.com/quackometer/posts/1020694...
I really try and respect peoples decisions about their treatments but I worry that there are people who would take advantage of others at a very difficult time in their lives and who are looking for anything to hold on to. It's criminal and it's big business.
I panicked for a moment when I read what it had said there about the 3% re Taxines - and then when I checked realised who was promoting it - breathed a sigh of relief. I know that Ty Bollinger can't accept the tragedy he experienced in his family - it's very sad - and he feels there is some kind of conspiracy by "Big Pharma". They ignore that there are over 200 cancers and everyone of those is as individual as we are. There is no sure thing as "a cure", I wish there was.
Research and research and research. There are plenty of ways to check the information and read both sides.
But there certainly isn't anything wrong with having a healthy diet.
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Hello Mary
You must look at Beachcomber today!
http://www.express.co.uk/comment/beachcomber/73627...
Fond thoughts
Sylvia xxxx
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Hi, Barbed,
I am really sorry I caused you angst by posting the TTAC Link, that is just what I didn't want to happen.
I have to say I have seen a lot of TTAC articles and I haven't seen anything like the ones you used as examples (baking soda and acid as cures), but I don't look at a lot of things that are shared on Facebook. I do know there are a lot of accusations of quackery out there against TTAC, and against a lot of the docs that are associated with Bollinger.
Once again, sorry, hope you are feeling well, you have certainly been through a lot.
Talk to you soon,
Mary
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Hi maryna8,
i am sorry about my suggestion to you. I only want to share things that i think might be helpful to others. Of course, they have their own perceptions, opinons and decisions about topics like this. I, for one, believe in integrative/complementary "nutrition" being in combination with orthodox. I find certain topics, such as those on "nutrition and lifestyle", interesting for the "prevention" of cancer only and certainly not about the "cure or treatment" of which I still believe in the orthodox.
Sorry Mary, I only wanted to help. People have a right to free access of info and certainly, they can decide for themselves about these things.
Btw, i just had my 2nd FEC infusion yesterday. Everything went smoothly, and the procedure time was cut in half, from 5 hours during my first, to just 2 1/2 hours. But i've had a nasty headache around midnight and my tummy felt uncomfortable. That didnt happen during my first infusion. I took the take-home meds this morning for nausea and steroid. The hair finally surrendered. LOL. I am just blessed with so much humor, I can just laugh at these things.
Take care, Hugssss
Gina
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Hello Sylvia,
I just finished my 2nd treatment yesterday. All is well except for a headache and tummy discomfort last night which eased this morning. All others are the same including the take-home meds.
It is good to know that you are using turmeric. That's an example of complementary medicine. LOL.
You are an inspiration and a big help for me. Thanks you very much.
Take care,
Gina
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Hello Mary,
I just wanted to say how gracious I found your post to Barbed. You are a truly decent person. I was afraid that suggestion from Gina about posting the TTAC link was going to cause reaction. This is an open thread and we all have different views.
Like you, I have not seen any quack type articles about baking soda and acid as cures, but like you I did sign up for that on-line course, headed by Ty Bollinger, about the Truth About Cancer Around the World and found it very interesting. It is not Ty Bollinger himself that speaks about cancer, it is various guests. If people do not want to watch or listen, that is up to them.
I have resisted all invitations to join Facebook. I like the idea of threads within the bc.org. There are rules and regulations about joining here and we are not supposed to give advice. When supporting patients, we can relate our own experiences, say what we did to help with side effects, and say what we think we might do in certain situations that may arise during our cancer journey. I firmly believe that patients have to be their own best advocates and make up their own minds about treatment.
There are threads on bc.org that deal with complementary and alternative treatments, and bc.org makes quite clear their position on alternative treatment.
There are a couple of threads that I look at from time to time that I find useful. They are Complementary and Holistic Medicine and Treatment, and Alternative Medicine.
It is important not to mix up the two. They are different.
I do hope you have a relaxing weekend, Mary, and take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hello Gina,
I was glad to know that you had finished your second treatment yesterday. I was sorry to read that you have a headache and discomfort in your stomach. I was glad to know that these things have eased a bit. Remember to take care of yourself as each treatment builds up and you will perhaps not feel as good as at the beginning.
As for turmeric, I just consider it to be part of nutrition. I much prefer the fresh turmeric and I have now found two shops in Exmouth that sell it. I just cook some, cut up, with vegetables and along with fresh ginger. The ground up spice is readily available in bottles here and I used to mix it up with black pepper in a tub of organic hummous, but I prefer the fresh version. I did read a few times that the ground up version was hard to absorb, because it could not get through the stomach without being destroyed.
Thank you for your kind words and remember to take care of yourself.
Why not tell us a little more about yourself? Do you have any children? Are you working?
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia,
Well, I enjoyed Beachcomber, as usual. He put his finger on the family tension that shows its' face during the holidays, in a humorous way! Yesterday, however, I read of a young man who was having dinner with his parents for Thanksgiving, he got in an argument with his dad and stabbed him with the steak knife, the mom rushed to help and she got stabbed as well! Dad is in critical condition, and mom is okay, son is in jail. Probably not what they were planning while buying the turkey!
I guess I thought taxol and taxotere were basically the same, I was also told that taxotere was easier on the heart. From different yew trees, as you say. They didn't give us much to choose from at the time we did treatment, did they? So we did what we could, for good or not. I prefer to think good, except for the darn neuropathy.
As to the alternative treatments versus orthodox, I am so glad to see that many of the larger hospitals are combining the two methods. I think one can find anything online, I have seen quack alarms on acupuncture, massage, and chiropractic. I happen to think all these treatments have value. As you say, we have to make up our own minds. That being said, I think some of the people going through the chemo treatments and coming to grips with their cancer diagnosis are in a more sensitive state of mind, and I don't want to be the cause of adding any confusion while they are going through all this.
It is very chilly here this morning, there is frost on the grass, but it is supposed to warm up to 60 degrees F. Only for a day or two, then back to cold.
I have another day of family togetherness today, it has been a long week. Family has come and gone over the week, with another family arriving today, I have been here for all of them with my 2 brothers. It is more socializing and later nights than I am used to, if you consider 9:30 late! I do if it's night after night, and it takes me a while to wind down when I get home. But we don't all see each other very often, it is amazing to see how much the little ones have sprouted since the last time!
Better go for now, will talk again soon,
Love, Mary
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Hey, Gina,
You don't have to apologize, all is well, I happen to think there is a place for integrative medicine, and I think nutrition and alternative therapies are beginning to get more respect from orthodox docs. Glad to see it!
So your hair finally went! My hair story is this: when it started to go, I had my head shaved because I didn't want long, blonde hair everywhere. My hair was blonde because I had it treated regularly, and I actually did not know what my real color was. When my hair began to come back later, it was a steel grey with streaks of silver, and I actually liked it! I also liked it when it was very short, it was so easy to take care of. So I have not gone back to blonde, but am living the grey life! The part of hair loss that I did not like was losing eyebrows and lashes, that gives one the look of an alien being, I think! They have come back, not as before, but I have makeup for that.
Hope your tummy and head get better soon! I noticed too, that the first infusion of drugs took a lot longer than the following ones.
Talk to you soon, Gina
Mary
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Rhonda,
So sorry you ended up in the hospital on Thanksgiving Day, hope all is going well. That happened to me too after my first chemo treatment, I was so weak I slept for a day and a half. Don't really know why it all happened, I spiked a fever, called the doc and was told to get to the hospital, called a friend, and off we went. On the second evening they started giving me shots of Neulasta (or Neupogen) and I improved quickly.
I hope you get out soon and get to eat some leftover turkey!
Sending good thoughts your way!
Talk later, Mary
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Hi Mary,
My fever is gone and my whiteblood cells are good but now my potassium is low.They are Giving me iv potassium and they did an ekg.I was so upset when they said I would have to stay another day that the doctor agreed to check the levels later.Heres hoping for good levels-I think I am going to go crazy in here.
Rhonda
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HI, Rhonda,
Yes, it's not a good place to be once you start feeling better, are you in isolation as I was? They wouldn't open the door except if the nurse or doc came in when I was there, not many people came to see me because they had to wear masks. I had to stay 4 nights and then left the next morning, I do hope your levels are good and you get to escape!
And I wish you better experiences on the rest of your treatments.
Mary
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Hi Mary,
Once my white blood cells increased they gave me a room mate.I am pretty sure I am leaving tomorrow.I am Wearing a mask because of the smells in the room-it isn't
Good.They gave me a lot of potassium and are pretty sure my levels will be good tomorrow.Potassium is very hard on the veins and it stings.Glad it is done.Not only did I miss Thanksgiving but I missed the wedding of my daughters childhood friend-feeling weepy-but tomorrow is another day.
Rhonda
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Hi Rhonda,
I'm glad you're ok now. Sorry you have to miss the thanksgiving celebration and a wedding. It really sucks to have erratic blood counts after chemo. It messes with my schedules. There's so many tests to do and meds to take. I wish i had Neulasta shots but my MO says it is not necessary. Tomorrow, i will go to her to get a shot of Filgrastim instead, just to stabilize my white blood.
Hi Sylvia and Mary. Thanks for caring.
Just to say something about me, i'm 53 y/o, married, with one boy. I work as a finance manager but due to my condition, i am on indefinite leave but most probably i will tender my formal resignation later. My DH and I plan to move to another house and would probably start a small business afterward. I like to eat and cook local dishes and my favorite dishes are usually salmon or tuna sour soup with lots of veggies and spices. I love to watch and read funny stuff too.
Ok, that's it for me dear ladies.
Regards to everyone!
Gina
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Hello Gina,
Like you, I eat mainly wild salmon and some tuna steak. You mentioned sour soup. Do you mean this or do you mean soursop? I have heard that soursop is a good anti-cancer product.
I thought should mention, for those of you going through chemo, that there are two brand names for the product used after chemo sessions to help with the problem of low white blood cell count. They are as follows:
Neulasta - this is a brand name for pegfilgrastim - a blood growth stimulant.
Neupogen - a brand name for filgrastim - a blood growth stimulant.
I do not know if there is any difference between these two products.
I do know that patients get very confused with these different names and that sometimes the experts refer to them by their brand name and sometimes by their generic name.
The other day i was talking to a friend of mine going through treatment for metastatic hormonal breast cancer and she was saying how confusing it gets because the different doctors etc. sometimes refer to brand names and sometimes to generic, so patients think they are not on the drug that is being mentioned.
Filgrastin is a synthetic form of G-CSF (granulocyte-colony stimulating factor), a naturally occurring protein responsible for the manufacture of white blood cells which fight infection. Deficiency of G-CSF therefore increases the risk of infection.
Thank you for the information about yourself. I am sure your sense of humour will help you get through all this.
How is your son coping with all this?
Keep looking forward.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia,
Just a quick thing about Neupogen/Neulasta. I got one or the other of these after every chemo treatment because my white cell count was always very low. I would get one of them if given in the cancer clinic and the other one if I was in the hospital. I was told that the one I got in clinic, (Neulasta), was long-lasting, and took several days to a week to come to full effect. The other, which I was given when in the hospital (Neupogen), was fast-acting but didn't have a long-lasting effect. They are basically the same drug but made a bit differently. Hospital gives the fast-acting form so they can get you better quickly, clinic gives the long-lasting one so it will maybe be helping till your next treatment. (The last sentence is my unscientific theory.)
Later!
Mary
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Hello Mary,
Thank you very much for that explanation about the difference. I think this is where our thread is important for new patients.
I do wonder why some of us have problems with these white blood cells that go too low, and others got through chemotherapy, and indeed radiotherapy, without any problems. I had no problems with white blood cells or red blood cells or anything else, back in 2005/6. I do not even know whether Neupogen or Neulasta were being used in the UK at that time. I do know that people were getting neutropenia.
I do not like the sound of the side effects from Neupogen (filgrastim). Common side effects are bone and muscle pain and prolonged use can lead to osteoporosis. Given that chemotherapy and radiotherapy affect the bones, the addition of Neupogen seems to mean it is a double whammy! As I have said before, the state of your bones need to be checked before and after treatment.
We had a beautiful sunrise this morning followed by a miserable overcast day, and a temperature of just 3C.
Do you think our adagio is alright? We have not heard from her in a while.
Love.
Sylvia xxxx
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Sunrise at 7:30 am
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