Calling all triple negative breast cancer patients in the UK
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Michael, I couldn't get in either...what appears is the 'Domain Tools' but when I clicked the Janette Collins Foundation nothing happened....
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Ok, it appears perfectly here but maybe that is because I am the author
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My computer is showing the site as unsafe
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I have just tried the site on my iphone and it has come up ok. This may be a server update issue. I will investigate further. The site is safe, there is no content on it apart from words and a logo.
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Tried again Michael, and things now seem to be working ..looking good and links I tried worked. Words Against Triple Negativ above logo bottom right missing an e as above, or so it appears on my screen, probably not yours0
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That was the situation earlier this afternoon and I have hopefully fixed it. Maybe in a few hours you will see the corrected site.
I probably won't do anymore until next week as I am over in England from tomorrow.
Michael
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ok Michael, will try again tomorrow
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Hello ...i asked to see an 'out of hours' doctor last night ..i realised it was a Friday night ...i rang at 8.30pm and was told i would have to wait till midnight...maybe 1am...i went to bed at 2am after ringing them twice! A doctor call at 2.45 am ..i wasn't going to get up..until he rang me from outside the house! Unbelievable..the upshot ..my redness has spread to the marker lines and i am now back on a different antibiotic...and no chemo again!
I have had an offer from a lady to meet me and take me to the Royal Marsden and be my second 'ears'...so i hope i get in there and fast too!
The young doctor that came ..said i don't know why people bother with chemo if they only have a short time...now if we had had that 'chat' earlier in the evening ..i would have reacted far more than i did...and was he meaning me? i didn't ask!
I am constantly amazed at the continously appalling treatment i get! Maybe it is more common in the area that i live in..as i am hearing more stories about lack of compassion and care!
Dulcie xxxx
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Hello Michael
I have just checked the posts and found the posts about the website you have set up for Janette. The first thing I noticed was that after www you have a comma instead of a full stop. This could be why people were having problems if they were copying and pasting.When I looked at the website, I noticed that you have put Taxotare instead of Taxotere. You have also written Paxlitaxel instead of Paclitaxel.
Reading further, I noticed that you have not put that, when you are told you have negative receptors, this includes being HER2- (meaning that Herceptin is of no use to you). It is this third negative receptor that gives the term triple negative.
Another factor about being diagnosed with breast cancer that is triple negative is that it affects mainly younger women. There are exceptions of course, but it is mainly younger women.
Can you explain what you mean by heterogeneous with reference to breast cancer with three negative receptors?
I am a bit concerned by what you said about the risk of 'relapse' falling off sharply after five years. I was wondering what evidence you have for this. We have to remember that breast cancer, be it hormonal or not, can have recurrence or metastases any time. There is no guarantee that you cancer will not come back even twenty years later.
I hope this all helps.
I was wondering how you get registered as a charity.
Best wishes
Sylvia0 -
Hello Dulcie
I was so sorry to read more problems and more worry for you. I just cannot believe what you are going through. I cannot believe what is happening to our 'health service'. I suppose the powers that be think that if you are too ill to wait for an out of hours doctor, you will phone the paramedics or get yourself to what used to be A & E and is now E D. If only the patient came first instead of all the bureaucracy. I cannot believe all the time wasted on changing names, colour coding uniforms, not to mention colour coding meals in the hospital cafeteria. I feel that our country is all upside down and common sense has taken a leave of absence.I was so sorry to know that the redness has spread to the marker lines and you are now on a different antibiotic. What is the name of the antibiotic you are now taking?
I think that young doctor was quite out of order and that he should not have said what he did about chemo and people with only a short time to live. I wonder whether he would think the same if he were the one in that kind of situation. I think there is a real problem with older people having to be treated by younger people who think they are the bees knees and do not know anything. With our education system having gone right down the drain, I do wonder at the level of 'expertise' coming out of the medical schools.
I think the problem is that younger people are dismissive of older ones. There does not seem to be the same sense of vocation and dedication that there was in the past with perhaps some exceptions. The NHS is overloaded, there are too many 'tourist' patients, and the cuts have made it worse. I also hear a lot of anger, frustration and disappointment with the medical service we are now getting.
I do think if I were you I would be getting to the Royal Marsden as quickly as possible. From what you have said, I get the impression that the team you have are not giving you the care you need.
Please let me know what happens as I really feel for you.
Thinking of you.
Sylvia xxxx0 -
Dulcie, my darling - big hug for you.
The care I have received here has been second to none but from what I read I am one of the lucky ones.
My sister lives in England and I know that the standard of treatment and concern is appalling.
I always agree with Sylvia on the state of the country and the waste of money that should be directed to the correct issues. Over here the situation is sadly similar.
I am actively involved in fund raising activities. Unfortunately this just allows the politicians to ignore the real situations due to the generous support and donations of the people.
I am very vocal when it comes to demanding my rights. Doesn't make me popular, if it changes one attitude then I believe I have achieved my aim.
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Hello Bernie Ellen,
I am glad to know that you have a good fighting spirit. We have to fight for fairness and justice and not let the powers that be tread all over us, especially the Eton boys with all their priveleges.
I am so concerned about Dulcie.
What is all this about Face Book and a secret site? Why do people on TNs want to do this? Is posting on bc.org not enough? Face Book is not a cancer charity. I do not understand what is going on.
Best Wishes,
Sylvia.
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sylvia, i will pm
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Hello Everyone,
I am just popping in to say that I hope you all had a good weekend and hoping that FernMF who is going through treatment is alright.
I have been looking back through pages 2, 3 and 4 of the thread and am surprised at all the information I have posted on there. To all those newly diagnosed I would strongly advise them to try to read these pages, as there is so much information to help you.
I also noticed names that were so familiar back then, tibet, Josephine, NewAlex, gillyone, PenelopeP, chilimac, eskimo53, brena, TEK2009. Of all of these, the only one that I see still posting on the bc forum is gillyone (a fellow Brit who lives in the US). Wherever you are, and whatever has happened to you, you are in my thoughts and I appreciate the quality posts you sent.
Best wishes to all of you and I do hope this week will be a good one.
Sylvia
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Good evening Sylvia
I will look into those typo's and errors when I get home. On the drug names I noticed different spellings for the same drugs and to be honest I just wanted to get some content out there to convince myself that I could do it.
By heterogeneous I mean many different forms. It was my understanding that in triple negative the risk of relapse falls sharply at year 5+ whereas with other breast cancers the relapse risk remains fairly constant.
As I say I will be checking everything this week. It is work in progress. I also will wear my glasses and get of my backside and turn the light on when it gets dark so that I can see what I am typing.
I have not been making the existence of the site known, beyond family and this group because I know it is not in a state to give reliable information.
In England, Scotlabd and Wale's if you want to become a charity you register with the charity commission. In Northern Ireland there is no commission which makes things much more difficult.
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Hello Michael
Thank you for your post.I did not mean to criticise anything on the website. I think you are doing a great job in wanting to set up this foundation in Janette's memory and I was just lending a helping hand to get everything right. I am afraid it is the school-teacher in me particularly when it comes to languages. I do not mean any harm.
I can understand your confusion about the spelling of drugs. I have seen so many errors on the forum with the spelling and some of the drugs are not easy to spell.
I do understand that it is work in progress and if I can help do not hesitate to let me know. At least you made me laugh about wearing glasses and getting off your backside to turn the light on when it gets dark. I can see you have a good sense of humour.
Thank you for your information about becoming a charity. It appears to be a simple enough process in England, Scotland and Wales, but I can see the problem in Northern Ireland where there is no commission. What do you have to do?
I do find it amusing that we have these different names that are supposed to bring these four different countries together. I mean the United Kingdom and Great Britain. I find them meaningless. Scotland has a different education system, a different legal system, and does not run its health system in the same way in that you can get drugs on the NHS in Scotland that you cannot get in England. I really think that England has been the bully-boy in history and that it always tries to lord it over the rest of the UK. It seems to act like a Colonial Master!
I noticed rereading the website that you have not mentioned the type of cancer, just the receptor status. The most common type of breast cancer is Invasive Ductal Carcinoma (IDC) and a lot of the cancers with triple negative receptor status are IDC. They are also most often grade 3. They tend to grow very quickly. On the thread women will often say that they seem to come from nowhere. This is certainly how it seemed to me. It seemed as though one minute there was nothing and the next minute I had a large tumour. Other less common types of cancer can also be of triple negative receptor status. On our thread, we have Dulcie who has metaplastic breast cancer, a rare cancer that is triple negative. Also, triple negatives are often but not always classed as basal type.
I hope this will help you.
Best wishes
Sylvia0 -
Hi Michael,
congrats and thanks for setting up the foundation. It's so important that TNBC recieves more acknowledgement and understanding. It is so frustrating to have to explain to people,even the docs at my check ups.
Dulcie,
wish we could be there with you to give those docs H##L.
BernieEllen,
met my Fine Gael TD today re my invalidity.He will write me a supporting letter but it is something that support centre is going to pursue as an issue affecting cancer suvivors. Sometimes it is hard to keep fighting and there is a delay of 6mths with reviews, but I know I have to keep going as I believe the system to be unfair.
Sylvia,
you really help us all to keep going.I was angry today when my local TD[MP] said that at least it was breast cancer I had and that was very curable.I know he was trying to be sympathetic but I told him that it is not as straight forward as that and that I felt that YES at the moment there are no signs of the cancer but it can come back. Also the fact that no-one seems to acknowledge the physical, psychological and financial effects of cancer treatment, least of all those in government departments.
I am going for thetreatment for my shoulder pain tomorrow and have to tackle the pain consultant over a letter to support my claim and to change the Lyrica.
Weather here is improving, hoping for an Indian summer
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Good evening Sylvia
I know you were being helpful. As I say the site isn't fit to be launched on the public at the moment. Ideally I would like a scrolling banner saying something along the lines that nothing on the site can replace qualified medical advice.
I am going to have to look into IDC. I really don't know anything about it. I am trying to write the site in as non-formal a fashion as possibe. It would be very easy to just lift information from other sites but that is not what I want to do.
I have just flown in from Southend. The weather in Essex was beautiful today. I happened to stay in the Holiday Inn Brentwood. I don't know if you have seen the tv program "The only way is Essex" (TOWIE). It is mainly filmed in Brentwood and it seems that the whole population has become cast members. I noticed that the hotel seemed to have TOWIE groups staying there. It was very amusing.
Michael
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Hello everyone
I hope you are all having a good week. Here are some more photographs for you to enjoy.
Best wishes
Sylvia
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Hello everyone
I have just read the latest posts and I shall be posting later on today.
I love the fighting spirit that we have on this thread. Leading the way are linali and BernieEllen, not to mention Dulcie. Keep it up. We own our countries, NOT the politicians!
Back again later.
Sylvia
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Hello Sylvia, and everyone - - I am on day 37 . . . round 2 is 2 weeks past, and round 3 is 9/11; round 4 is 10/2.
My significant side effects on round 1 (general malaise and aggitation, couldn't sit/stand/lay comfortably, couldn't sleep) was remedied to a great extent by changing up the pre and post steroid to prednisone (120 mg!) and the dexamethasone was decreased to 6 mg on chemo day.
Day 5 to present - post round 2 have been filled with general pain in knees especially and now muscle fatigue (as if I had run a 10-mile race) which is being controlled "some" by taking an ibuprofen and an acetaminophen together . . . I'm told that is a classic taxotere S/E . . . so, I'll live with it (like I have a choice). I worked the whole day - 3 days after round 2, and all of last week. I am trying to walk my normal 3 miles - but have not been able to accomplish that - the most being nearly 2 miles last thursday evening. The knee pain and leg soreness prevents longer walks. I traveled much of the weekend, but will try to walk tonight and see how I do.
I have gained 7 pounds already and am very unhappy about that. Generally, my outlook is VERY GOOD, trying to be positive, think positive, appreciate the perks of chemo - like, getting ready for work in the morning is ~ 15 minutes shorter since "doing" my hair takes like 5 seconds!!! and, no more uncomfortable, ill-fitting bras for me !!! Gotta take the perks and be happy every day possible!
Round 2 on THE DAY of chemo, the nurses did a poor job of IV insertion. I still have a large area on my hand where the 2nd IV was placed - it looks wicked, may be soft tissue damage, may be some slight local infection . . . There is only one nurse that I will allow to do the IV next time. I am a needle phob, for sure, but have learned if it "doesn't feel right" or "hurts" - request another tech/nurse and make it right. I ended up with four needle sticks that day - and the last one was the only one that was right.
Thanks for your concern and continuing posts. They are VERY helpful to me!
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Don't worry about the weight FernMF, even tho' I wasn't eating that much during chemo I still gained.. the steroids have a lot to do with it...weight came off pretty fast once I'd finished0
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Hello linali
Thank you for your post. It is hard to believe that your doctors are not aware of TNBC. Your oncologist and your breast cancer surgeon, who work as a team, must surely be aware of this receptor status.Even over seven years ago, my oncologist and breast cancer surgeon told me that I had invasive ductal carcinoma of the breast and that I was negative for oestrogen and negative for progesterone. The breast cancer consultant surgeon told me the prognosis was not good, but she was saying that solely on the basis that she would not be able to give me Tamoxifen, as this was only good for IDC that was hormonal positive. It was a bit later that she said that I was HER2 negative as well and so would not need Herceptin. At the same time she said it was a good thing to be HER2- as to be HER2+ was not a good thing as that kind of tumour was really aggressive. She also said that Herceptin was really vicious on the heart. The term TNBC was never used at that time, I was merely told that I was negative. I probably found the term on the internet. However, it is much better known now and I would have thought that all medical staff dealing with breast cancer would be familiar with it.
I do hope you will be successful in obtaining your invalidity benefit. Keep fighting and do not give in.
I am glad to know that I keep you all going. We have to fight the good fight. That local MP of yours was out of order. I cannot believe his ignorance and arrogance. Breast cancer can be treated and it can be brought under control but I do not believe it is curable. If it were, we would not all be living with the knowledge that it can recur, spread or that another primary could develop. That is the curse of this disease and the treatment is really horrific because of what it does to your body physically. Only people with cancer know the toll it takes on a person, physically as well as mentally.
You are quite right as well about the financial effects of cancer.
I do hope the treatment will help with the shoulder pain and I do hope you get some support from your consultant for your claim.
Never give up and never stop fighting for your rights.
Thinking of you
Sylvia xxx0 -
Hello Michael
Thank you for your post. I think the scrolling banner about nothing on the site can replace qualified medical advice is a good idea. On CANCERactive, Chris Woollams is always careful to say that he is providing information and not advice. You have to be so careful these days.As for invasive ductal carcinoma (IDC) there is a simple but excellent explanation of this on the following link:
http://www.breastcancer.org/symptoms/types/idc/
This name really indicates where the cancer forms in the breast. It is the most common type of breast cancer and represents about 80% of all breast cancers. That shows you how common it is. That will include women with triple negative which is the name for the receptor status. The other 20% will be breast cancers that are not IDC.
I think all of you on the thread would find the link interesting.
I was interested to know that you are back in Essex for a visit. I have heard of The Only Way is Essex, but I have not actually seen it. I did not know that it was filmed in Brentwood and had to laugh about the whole population becoming cast members. I am sure it must have been very amusing.
My husband and I used to spend a lot of time in Brentwood and quite liked it , although it started to go downhill and shops began to close when Lakeside Mall opened. My husband worked in Brentwood at Amstrad for Alan Sugar for a couple of years. The Amstrad building is now a Premier Inn. The Holiday Inn must have been built after we left Essex. Where is it in the town? What do you think of Brentwood now? We used to spend hours in the Brentwood library, but then started going to Chelmsford. We quite liked Billericay. It still has a thriving High Street.
I think all this business about Essex Man and Essex Girl is a bit exaggerated. I remember all the talk about Mondeo Man, Basildon Man and shell suits. Apparently Essex girls were all supposed to wear white stilettos. When we lived in Essex, we used to like the countryside and trips to Frinton-on-Sea.
That is about all for this evening. Best wishes.
Sylvia0 -
Hello FernMF
Thank you for your post and for your detailed account about everything that is happening to you. This will be of great help to anyone viewing this thread and going through chemotherapy.I was sorry to know that you are experiencing pain. I did not know that knee pain and muscle fatigue are classic side effects of Taxotere. I must have been very lucky as I did not experience any of this when I was on Taxotere on its own and had four rounds of it every three weeks. All I remember is losing my eyebrows and eyelashes and having a funny taste in my mouth.
Do you think you are having more side effects because you are taking the Taxotere together with Cytoxan (cyclophosphamide). I had epirubicin (Ellence) and cyclophosphamide together for four cycles every three weeks for the first three months of my treatment. I must have been lucky with that too because I just suffered hair loss and fatigue. I did not need any painkillers for the whole of my treatment and took only the medication given for a couple of days after treatment.
Do you think that you might be overdoing things? You are working full time and doing a lot of walking. Perhaps you might want to cut down and go for gentle short walks.
I can understand that you are not happy about putting on weight, but, as Maria said, you will probably lose it after treatment. I am interested in this weight problem that seems to affect some women during treatment.
Is there something in the steroids that makes people put on weight or is it the fact that steroids increase your appetite and so you overeat. If there is some ingredient in the steroids why would you not have put on weight before since you have been taking Prednisone before you developed breast cancer.
Keep your positive attitude. You have come this far and you can get through this and before you know you will be back to a more normal life and it will be behind you.
Make sure that you get proper IV insertion. You do not want to end up with damaged hands. I remember how bruised I was a couple of times.
Thinking of you and wishing you well.
Sylvia xxx0 -
Hello Maria_Malta
Thank you for popping in to support FernMF. Are you back at school now?Would you believe that there is a book on sale here in Smiths entitled 50 Shades of Earl Grey!!!
There is a real autumn atmosphere here in Exmouth.
Best wishes
Sylvia xxx0 -
I have done some more work on the site this evening. I hope I have addressed the issues Sylvia mentioned. Feel free to make comments, I tend to miss very obvious mistakes.
It is six months this evening since Janette died. I bought some red roses and lit a candle in front of them and her photo.
Sylvia, I have a feeling that the Holiday Inn in Brentwood used to be called "The Post House", it is by Junction 28 on the M25 near the junction with Wigley Bush lane.
Brentwood seems very prosperous now. I can only think of a few empty shops. There was a store which I think was a bit of a Brentwood institution called CLEMENT JOSCELYNE that has recently closed. I could quite happily live in the town but I prefer Chelmsford which is much less brash.
Michael
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Beautiful pictures, Sylvia.
I grew up in Harpenden, Hertfordshire. A really lovely place, then it went all super yuppie with estate agents and wine bars.
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Spotlight on Harpenden
Close to woods and parkland, with good links to London.Sitting in rolling Hertfordshire countryside 25 miles due north of London, between the M1 and A1 motorways, is Harpenden. This prosperous small town grew up around a large green which stretches south from the high street, offering views of the woods and countryside beyond.
This is where Lady Katherine Ferrers, the famous highwaywoman, terrorised the neighbourhood and where, in the nearby village of Wheathampstead, there is a pub, the Wicked Lady, named after her. On the common itself, another pub, the Silver Cup, recalls the horse races that ran there until the beginning of the First World War - attracting both racegoers and hordes of pickpockets who made the journey by train from London.
Today, though, Harpenden is perhaps best known as the location of the Rothamsted Research Centre, the country's largest agricultural research organisation started in the 19th century by Sir John Bennet Lawes, who invented phosphate fertilisers and who has been called the "father of agricultural science".
Next to the research centre is Rothamsted Park - all 56 acres of it - an ideal place for families, and summer fun and games.
Harpenden started life as a small village but grew and prospered as a commuter town after the arrival of the railway in 1860. Even today, locals say they are "going to the village" when they visit the high street.
Harpenden's expansion left a legacy of red-brick Victorian, Edwardian and vernacular-style houses built in the years between the two world wars and much of the town enjoys the protection of being in a conservation area, one of the largest in Hertfordshire.
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