Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio
Raymond and I did indeed spend seventeen years in Canada. We were in Montreal for just over three years, and then just over nine years in Ottawa, and then about four years in London, Ontario. We moved according to Raymond's work. He was a Chartered Electronics Engineer (registered as a P. Eng in Canada) and he did a lot of work for Bell Northern Research and Northern Telecom. We thought Canada was a great country but the winters were so cold and the summers so hot. Canadians were very hospitable to us and we liked the fact that they were very proud of their country. Ottawa, Montreal and London were absolutely freezing but it was not damp like it is here. I was very good at shovelling snow! We did have a trip to British Columbia and really liked Vancouver. We did the Inside Passage trip and then drove through the Rockies back to Vancouver. It was all a wonderful experience. We also had a trip to Nova Scotia, Prince Edward Island and New Brunswick. I remember standing at the edge of the Atlantic Ocean in Cape Breton in Nova Scotia and looking out to the UK far away. We also thought what it must have been like for the first people like Cabot when his ship stopped there. There was a lone piper there and it seemed to set the scene.
While we were there we studied for the Citizenship exam and took it after we had been in Canada for three years. We passed, went before the Citizenship judge and became Canadians at a ceremony. We still have our Canadian passports and our Citizenship cards.
While I was there I sent off to one of the universities to get a complete list of Canadian authors through the centuries and read my way through a lot of them.
I do hope your daughter will be happy in the USA. What part will she be in? When we were in Montreal we drove to New York and the New England states.
As far as Canada is concerned we regret that we did not get to go on the train that goes across Canada. We feel we missed out on seeing the Prairies so we did not fit all the puzzle together.
We came back to the UK for family reasons but it was quite difficult to settle down again here.
In my mind I shall always wonder whether I would still have got breast cancer had I not come back to the UK. That may sound strange but one just does not know what may have happened if you had taken a different path. It is something that fascinates me. It is what I call the "what ifs" of life.
Sending you very best wishes.
Sylvia xxxx
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Hello Carolben
I do really like that quote from Viktor Frankl. You have true strength and all of us here admire you.
It is truly awful all the side effects that a person has to suffer with this cancer treatment. I do hope you do not have to go through some of the potential side effects. You have enough to cope with as it is with all the existing ones. I know you will find the strength to cope. There is no other option for any of us We all hope that the chemotherapy will destroy these mets.
Are you taking anything else other than the chemotherapy drugs?
If you can find the strength and concentration to read the book "Radical Remission" I think you will find it interesting. I have just started reading it.
Do you take anything for your neuropathy? I have it in both feet and sometimes it gets on my nerves. I have been told nothing can be done about it and it was caused by the Taxotere.
I spent time in France and Morocco, six years in France and three in Morocco and it came about through being a teacher. While there I saw a lot of Spain as I travelled through periodically. I also visited Portugal. It was through Raymond's job that we spent all that time in Canada. Compared to all the far flung places that people visit today, I do not feel that I am well travelled.
It is strange but when you live for many years away from your country of birth, you have a feeling of being somewhat rootless and it takes time to put down roots again. I do not think Raymond and I have a feeling of belonging to Devon, but this is probably where we shall stay now. It is a nice part of the UK. We think we have quality of life here that we would not have in other parts of the UK. Like you, we have no desire to travel now and think that world has become too dangerous. I would not like to have to go to a strange hospital and if I need them in the future I would want to stay with the oncologist and breast cancer surgeon whom I know.
I was so glad to know that your appetite has started to improve and that you have a couple of days to make the post of it before starting chemotherapy again.
We shall all be thinking of you tomorrow and hoping things will go well.
Fond thoughts.
Sylvia xxxx
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Hello Jacqueline
I am just popping in to say that I shall be thinking of you tomorrow, August 29th, when you have your fourth chemotherapy. I do hope all goes well.
Fond thoughts.
Sylvia xxxx
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Hello Mary
I am trying to catch up with everyone. Have you started your radiotherapy yet?
I hope to hear from you.
Best wishes.
Sylvia xxxx
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Hello Marymargarethope
I was just wondering how you are getting on and how your baby is. I would love to hear from you and to know where you are in your treatment.
Wishing you all the best.
Sylvia xxxx
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Hello everyone
I have just been reading through my latest copy of What Doctors Don't Tell You (the September edition) and a couple of short articles caught my eye.
One is Cancer could be another inflammatory disease. The article reads as follows:
"Inflammation-the body's natural repair response-is increasingly being seen as the real culprit behind heart disease. Now it is being linked to cancer after researchers found that even the most aggressive breast cancer tumours were responding to anti-inflammatory drugs.
Anti-inflammatories, and especially JAK (janus kinase) inhibitors, designed to treat rheumatoid arthritis, disturb the anti-viral pathways of triple-negative tumours, the most aggressive form of breast cancer.
These pathways drive inflammation, which in turn seems to cause tumours to grow and spread, say researchers at the Washington University School of Medicine."
I am reading this to mean that anti-inflammatories, especially JAK, used for rheumatoid arthritis could be used to help treat TNBC.
Has anyone heard about this? If so, please post. This thread can only continue if it is two-way.
Wishing everyone well and hoping you are having a good weekend.
By the way, I saw my friend today, who is a 23-year survivor of breast cancer. She could only have been 30 on diagnosis back in 1991. She had only a lumpectomy and some radiotherapy. She was not given anything after that treatment. I do not know whether tamoxifen was available at that time but if it was she did not get it and she has survived all this time, so I am thinking, given her age, that it could well have been what we now know as TNBC.
I am still wondering whether, given what has happened to another friend with triple positive, whether triple negative is the most aggressive. I think all breast cancer has the potential to be aggressive.
Please keep the thread alive.
Sylvia.
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hi Sylvia
I've been reading about the JAK inhibitors used for rheumatoid arthritis, it seems most TNBC tumours are lacking in the p53 gene but it's when both p53 and ARF are missing or mutated that this drug can be helpful, I couldn't find any information whether there are any trials planned but it will be interesting to see if a drug that is already available gets passed to treat TN
It's good to hear that your friend is a 23 year survivor and without chemo as well, I remember reading somewhere that tamoxifen was introduced in 1977 so she couldn't have been hormone pos, it would be interesting to know what her HER 2 status was, but it does sound likely that she was TN...it's a pity she doesn't pop on these forums occasionally, when I was going through treatment reading stories of long term survivors kept me going
I've decided to raise some money for Macmillan as they were very good to me during treatment and I've booked in to do a charity sky dive.... something I never would have done a year ago but I do feel more daring to try new things these days and I'm actually looking forward to it. It's not till next march as I didn't fancy doing it in the winter months, I'm going to set up a just giving page soon and share the link online for anyone who would like to sponsor me....we are also going to do a charity comedy night as my sons already run a comedy night three nights a week so that should be easy to set up....I've got a few other thoughts as well and whatever I've raised a year from now I will donate
Take cars
Gill
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Hello Gill
It was nice to hear from you and to know that you have been reading about JAK inhibitors. I do not know too much about p53 in relation to TNBC but when I was first diagnosed I remember reading that with TNBC the p53 gene can be silenced through a process known as methylation. When it is switched off like this it apparently allows cancer cells to thrive.
I do not know about ARF. I tried to research on line but the most up to date article was somewhat complicated.
I do not know whether there are trials going on with the pill used to treat rheumatoid arthritis on breast cancer patients. I would not be surprised if it is used just to see if it works. The powers that be seem very good at using existing pills for different purposes.
As for my friend, since she did not get tamoxifen, I am pretty sure that she was triple negative. I think that had she been HER2+ and with no Herceptin, she would probably not have survived. She is not the type to go on forums and I think she has put breast cancer right out of her mind. She has spoken to me about it because I asked her about it all.
I think it is very brave of you to do a charity sky dive for Macmillan to raise money. They do a very good job looking after patients.
I think the idea of a charity comedy night is an excellent idea and I am sure you and your sons will do a brilliant job. You will raise money and make people laugh and there is no better medicine than laughter. I am always looking for shows to make me laugh on the television but they are in short supply at the moment.
Are you still reading What Doctors Don't Tell You? In the September issue there was not only that short article about cancer possibly being another inflammatory disease, but there was also a short article entitled "Virus kills triple-negative breast cancer cells". The article states "A virus has been used to kill breast and cervical cancer cells, including aggressive triple-negative cell lines. The virus - known as adeno-associated virus type 2 (AAV2) is believed to be perfectly safe in humans, and not a cause of any disease, yet is lethal to tumours."
Apparently in a laboratory test the virus killed all cancer cells with 21 days.
It is stated this could represent a breakthrough in the treatment of triple-negative breast cancer cells in particular.
No doubt all this is a long way off for humans!!!
I hope you have had a good weekend and the coming week will be good for you.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia
It seems ages since I last wrote on the site. I have been catching up on all the posts, so pleased to know everyone appears to be doing well in the posts I have read, glad Gill had good news and there was no recurrence and also pleased to learn Lulu is faring well. The yew tree hedge was massive! It seems strange that something as poisonous as yew (it was planted deliberately in churchyards so farmers kept their cows from wandering onto graves!) has actually been used to such benefit for us breast cancer girls.
It has been such a busy period and couple of things to report which may or may not be of interest but I'll go ahead in case! Do you remember my breast cancer friend who had chemo and had the infusion incident where it seeped into her arm tissue? Well the arm has never resolved and when you touch the area it is rock hard. She has been referred to a Consultant plastic surgeon for extensive repair and skin graft. However the good news is she got a Complete Pathological Response - no tumour left at all at surgery and all lymph glands clear, even those with metastases at diagnosis. And she found out hers was also Triple Negative! She had neat little lumpectomy, even though it was originally a 4cm tumour. So chemotherapy for her caused her a terrible arm problem but killed her cancer!
The other thing to tell you, and another reason why I have been busy and not in touch, is Bernie's mother has now been diagnosed with breast cancer at the age of 90. I have been busy taking her to and from hospital for all the early diagnostic tests/mammos/biopsies we will all remember. How sad to get to 90 and then be subjected to horrid core biopsies and the like. It's invasive lobular, in her lymph glands too, and Surgeon says has been there for a long while and intimated probable body spread (can biopsy on tumour/nodes provide info like that?). Anyway, upshot is she is not being offered Chemo as age and underlying heart condition (ageism?). Surgery has been offered after the usual CT and bone scans to determine extent. However she has decided to have no surgery and no more scans of any description or further 'pulling about'. Quite honestly I don't blame her at 90. She has a hormone fed cancer so endocrine treatment is all she is willing to undertake. It's not Tamoxifen but a similar drug beginning with L, can't remember.
I have just had about enough of cancer. It is dominating too much of my life. Three male friends have died in the last 2 months of the wretched disease, now this with my partners mum. I sometimes think I want to get away from it all and not visit this site but feel an obligation to support others treading this path, although I am not sure I'm much of a help presently. On a positive note just had a clear mammo, and on my way to 3 years out from diagnosis. Quite an important milestone I believe?
Good luck everyone. And am wondering how Carolben is? I was sad not to find out if she is still keeping well.
Bye for now Sylvia, hope you well
Love Norma
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Hello Normandee
I was so glad to hear from you and have just read your most interesting post. I have a busy day in front of me but I shall post later on today in a more relaxed manner.
There is a post from Carolben not too many posts back that I am sure you will want to read. There is no doubt she is having a tough time but she has amazing mental strength.
I shall talk to you later.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia and all,
I haven't posted in a while, I have been trying to get a handle on my various aches and pains that started in July. I have finally found out that I have a partially torn rotator cuff in rt. shoulder. I have a very good idea of when that happened, it was in July when the pains started. I also have degenerative disc disease, bulging discs, pinched nerves in both shoulders. I have the carpal tunnel in both hands, I know I have mentioned that before. I have been doing therapy with massage, which was very painful. I did have one of the dreaded steroid injections last week, I am hoping it turns out okay and I will be able to do the therapy better. If it doesn't work, then it will be alternative therapies. I am convinced that the chemotherapy, Taxotere to be specific, is the partial culprit in most of these problems. I know it didn't cause the disc disease or the rotator cuff injury, but it does seem to have inflamed all the nerves that are involved in these body parts, especially the carpal tunnel.
After reading of all your travels with your husband, I am convinced that you are well traveled! It sounds like a very interesting life.
Carolben, I did not have to have radiation. My oncologist and the radiation oncologist agreed that the benefits of it would not be worth it. Especially since at the time all my arm problems were not diagnosed. Hope that decision turns out to be right! I am just filled with admiration for the fortitude you are showing as you go through your difficult treatment. It makes me ashamed of all the whining I have done over my various troubles. I have definitely felt like the victim at times, the saying by Frankl is wonderful and it is worth trying to be the victor instead.
Jackpot, are you actually skydiving? I have always wanted to do that, but feel a little too fragile right now. Good for you for all your good works. Will be looking forward to your report on it.
Sylvia, I was reading your post on the link between rheumatoid arthritis medication and cancer. I have a friend on the very powerful RA drug, Humera. She injects herself every 2 weeks, and it stops the crippling effects. She still has pain. She also has a lot of side effects. I think this drug and ones like it would really have to be modified before anyone would want to take it as a preventative measure against cancer. But I agree it is definitely worth studying.
I have to go for now, and hope to be back soon!
Best wishes to all,
Mary
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Dear Sylvia
Thankyou for telling me about Carolben -I had flicked through and missed her post somehow. I have thought about her a lot and I think she has marvellous inner strength and a wonderful upbeat approach to all the horrible treatments she endures so stoically. Carolben if you are reading this I send you love and thoughts.
Love Norma x
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Hello Norma
I was interested to read what you said about yew trees being deliberately planted in church yards so that farmers kept their cows from wandering on to graves. I did not know that yew trees were poisonous. It makes you wonder how they have turned out to be of such benefit for the treatment of breast cancer, especially TNBC for which there is no treatment after the standard of surgery, chemotherapy and radio therapy. I know that both of the taxanes are considered strong chemotherapy treatment and they are harsh on the body because of the serious side effects.
I certainly do remember your breast cancer friend who had chemo and had the infusion incident where it seeped into her arm tissue. It is awful that the area affected is rock hard to the touch. I do hope the plastic surgeon consultant will be able to sort this out for her.
It is really good news that she had a complete pathological response and that all has been left clear. I get the impression that the number of women getting a triple negative receptor status with their breast cancer may be on the increase.
I was so sorry to read that Bernie's mother has been diagnosed at the age of 90 with breast cancer. She is so lucky to have you to look after her and see her through the usual procedures. It is really awful to have this happening so late in life. An elderly woman who used to live right opposite us on the top floor of our apartment complex was diagnosed with breast cancer in both breasts at age 85. I remember it very clearly because I saw her daughter in our local supermarket and she told me that her mother at 85 was going to have both breasts removed. At the time, about May 2005, I had a lump in my breast but was delaying going to see the doctor. That elderly woman recovered from her surgery, had radiotherapy, but no chemotherapy. She went on to live for another five years, was taking tamoxifen for a time and was fine until she had to go into a home because of a bit of dementia. She died really of old age and definitely not from anything to do with the cancer.
I was interested to know that Bernie's mother has invasive lobular breast cancer.
I am going to end this and start a new post in case I lose it.
Sylvia xxxx
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Hello again Norma
I think lobular breast cancer is one of the less common ones. I can understand that she has decided not to have surgery or any more scans. I think I would do the same in her place. The older you are the more slowly cancer is said to progress, so with an anti-hormonal pill she would probably be alright. The husband of a friend of mine died a few weeks ago very suddenly of a heart attack. He would have been 90 in October. He was diagnosed with bladder cancer a couple of years ago and had some treatment, but the consultant told him that the cancer would not kill him. The consultant said that he would die with the cancer and not from the cancer.
Please let us know how your mother-in-law gets on.
I can understand how you feel you have had enough of cancer. I think we all get like that. There are so many people being diagnosed with it that it is difficult to keep it out of your life. I also feel that I am surrounded by it. Back in 2005, when my elderly neighbour was diagnosed, and then when I was diagnosed a bit later in June, I wanted to keep it to myself. One afternoon another neighbour with whom I was friendly phoned up to tell me that her youngest daughter, age 38, had just been diagnosed with breast cancer. I did everything I could to try to comfort my neighbour and tell her the daughter would get treatment and be alright. I could not bring myself to tell her that I had just been diagnosed with breast cancer, was frightened and did not like the idea of treatment. That daughter and I ended up having the same treatment and although, again, TNBC was not mentioned as such at the time, she obviously had TNBC like me. Like me she is still in the clear. I saw her this year and she looked fit and healthy. She runs a lot of marathons and amazes me. Within my immediate neighbourhood I know four other women who have all been through cancer treatment and are all still in the clear. That is quite a lot for me and there are also a lot of men in the neighbourhood who have been through prostate cancer.
You are very valued on the thread but I can understand that it can all be too much and you need to take breaks. You can come on the thread and talk about anything you like. We all need to have a good laugh on a daily basis. It is the best medicine and very healthy for our bodies.
Today has been difficult because I went to the funeral of the neighbour and friend who died recently from her breast cancer. I felt very emotional and upset. In addition, it was my birthday today but i have not felt like doing anything special. Perhaps I shall do something another time.
Keep well and take care.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I was concerned to know you are having such a difficult time.
I shall respond to your post tomorrow, as I am rather weary now and I like to have a clear head to make a meaningful post.
We are all thinking of you. What is happening about your radiotherapy?
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I was sorry to read about all the aches and pains that you have been suffering from in the past two months. It must be making you feel very miserable and weary. I do hope you will get some relief soon. I hope that the steroid injection will do the trick and give you some relief from pain. I have never had one but from what I have been told by those who have had these injections, they take a little while to kick in but then usually work very well.
I know from my own experience that Taxotere causes peripheral neuropathy in the feet and I suppose anywhere else in the body, such as the hands. My oncologist told me this and said there was nothing to be done. Recently I was told I had developed osteoarthritis in the big toe joint on my left foot. It does not bother me too much at the moment but I do not know what will happen in the future. I am of course wondering whether it is something else connected to the Taxotere.
Have you spoken to your oncologist about all these aches and pains? It seems that Taxotere does attack the nerves.
I see from what you said to Carolben that you will not be having radiotherapy so it looks as though your treatment is finished. Congratulations on that and I hope you will gradually pick up and get back to a normal life.
I hope you will stay with us on the thread as we need to keep TNBC on the front pages of this forum. I have noticed lately when looking at Active Topics that it is not on the first page. We need to make an effort because Calling all TNS and this thread are the largest ones and are really all that is needed to help the newly diagnosed. I think on these two we must have covered everything related to TNBC and we have loads of information from people having gone through treatment and lots of survivors.
I agree with what you said about the rheumatoid arthritis drug. So many of the drugs used by orthodox medicine have horrible side effects and while alleviating the symptoms caused by various diseases, they only mask the problems and do not get to the bottom of causes. A patient ends up on a cocktail of pills, all with their own side effects and goodness only knows what they are doing to the body.
I would be very reluctant to take any drug at the moment with claims of preventing TNBC. I feel much happier not taking any medication and letting my immune system do the job of keeping cancer at bay.
That is about all for today.
Fond thoughts.
Sylvia xxxx
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Hello sam52,
I was so glad to hear from you and thank you so much for your birthday greetings. I have been wondering how you are getting on and how life is treating you.
I was glad to know that you are still viewing this thread and I do hope you will post from time to time. I know you are very busy and will now be getting ready for the new school term. I do hope the first day back today will not be too hectic.
Thank goodness you had a relaxed summer vacation.
How are your father and your son?
I think it must now be thirteen years since you were diagnosed, so you are a long-term survivor and a great motivator for those going through treatment.
You might be interested in what I said about osteoarthritis in the big toe joint of my left foot. I am trying to find out whether it is connected to the peripheral neuropathy in my feet from Taxotere. I did a bit of research and found that this osteoarthritis is often associated with pseudogout (not ordinary gout) and that there is a connection between pseudogout and hyperparathyroidism. Apparently pseudogout is an inflammation of a joint caused by the deposition of calcium pyrophosphates. This is unlike gout which is caused by uric acid deposits.
Interestingly, I have also read that "proper" gout may be caused by excessive cell destruction associated with chemotherapy treatment.
Everything seems to be interconnected. You will certainly remember all the research we read about hyperparathyroidism and breast cancer and which came first.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hi, Sylvia
I want to say "Happy Birthday"! I share your birthday month, mine is Friday, September 5th. I suppose we are Virgos except my niece told me things have changed and now in some quarters our birthdates make us Leos. Just to add to the confusion.
I also have osteoarthritis. I have had MRIs on my lower back twice in the past and that is what is diagnosed. The pain comes and goes. I have just found out though, that now all aches and pains are suspected of being cancer. That is the first thing the docs mentioned while looking at my latest scans. "Well, it's not a tumor." It hasn't really sunk in yet that that is my future, being vigilant about all these things.
I did speak to the oncologist about present pain. She is a new oncologist to me, since mine retired on the day of my last chemo. She suggested my pain was nerve pain and wanted me to see how it was when the chemo was out of my body. But I didn't want to wait that long and took matters into my own hands. What I found was orthopedic problems, and I think the chemo inflamed all the nerves wherever there was a problem and made things worse. I am working on things one at a time!
Will talk to you soon!
Best wishes and hope your birthday was special!
Mary
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Hello everyone,
Here is a thought for today.
Old
Ayurvedic proverb:"When
diet is wrong, medicine is of no use. When diet is correct, medicine
is of no need".Thinking of you all. Have a good day.
Sylvia
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Hello Mary,
Thank you for your
birthday greetings and I do hope you have a very happy birthday on
Friday September 5th. I was interested in what you said
about things have changed according to some quarters but I am going
to stick as a Virgo. I do not take much notice of horoscopes but what
I have read about the Virgo character fits me perfectly. Anyway, I
cannot possibly change because Raymond is a Capricorn, January 4th,
and according to what we have read Virgos and Capricorns are a
perfect match. I could not possible risk anything else!!!I was interested to
know that you have osteoarthritis. Do you know what caused it? I have
just finished reading a book entitled “Treating Arthritis – The
drug-free way” by Margaret Hills SRN. I found it most interesting.
It is all about balancing your body. Apparently in the western world
our diet makes our bodies too acidic and apparently making it more
alkaline is a way of getting yourself free of arthritis. The advice
is to drink water with diluted organic apple cider vinegar. Margaret
Hills was crippled by arthritis as a young woman and orthodox
treatment could do nothing for her. She used her training as a nurse
to develop her simple natural cure, which was successful. She has a
clinic in her name in the UK and now run by her daughter. At the
clinic they use the acid-free approach and the drug-free approach.
You will probably find information about all this on line. She also
advises having baths with Epsom salts put in.I have heard lots of
good things about apple cider vinegar and I do drink it from time to
time, diluted in water. As for the Epsom salts, I bought a tub and
put some in a bowl of warm water and soaked my feet in it. It did giv
me some comfort.I do think that once
we have been diagnosed with cancer, we do tend to be anxious about
every ache or pain, but I think we learn to read our body and have a
gut feeling about when we need to get it checked.I am sure you are
right about chemotherapy inflaming the nerves and making an existing
problem worse. We all know how lethal our cancer treatment is but we
have no choice. There are people who go on alternative treatment and
apparently survive, but I honestly think I would be dead without the
orthodox treatment.Take care, Mary.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia
Thankyou for your lovely long replies - you must find it quite demanding and tiring at times replying to us all in so much detail, I really don't know how you do it.
I am sorry you did not enjoy your birthday the other day due to the sad events you told me about, but I nevertheless send you many happy, belated returns. I was interested to hear that the lady of 85 with BC in both breasts went on to live for 5 years and die from unrelated causes. And you said exactly what the breast consultant said that cancer grows slower in the elderly. Mum went back to the hospital today, Bernie took her as I returned to school, and told the Consultant her decision to have no treatment whatsoever apart from daily hormone pill. They supported her decision but left the door open if she changes her mind. She goes back in 3 months. The strange thing is since starting the hormone pill she says she has felt better, not quite so tired.
The lobular cancer shows very differently to the ductal on the mammogram image. I had a good look at Mum's images with the Radiologist and whereas invasive ductal shows a very definite area of 'lump' the lobular appears more as a spreading spider with long thin legs spreading out. They estimate it to have been growing 8 years. They will treat her as if she has a longstanding, chronic condition.
Well will try and get to sleep tonight., however finding it very difficult with all these terrible barbaric murders of young journalists - I find it all rather disturbing and depressing. I actually think I need to see the doctor as have been feeling rather down and do try to remain cheerful but very hard lately with so much bad news in my personal life and in the world generally.
On a happy note Bernie is a bee-keeper and has this year got a bumper crop of honey! This weekend is draining off the honey, straining and bottling. It is always lovely to have the first spoonful on hot, buttered toast. Bees are the most complex, interesting creatures and hive-life is truly fascinating. They work SO hard.
Hope you feel happier Sylvia,
Love Norma xxx
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Hello
Norma,Thank
you so much for your birthday greetings.I do
hope you will have a good term at school.I
think your mother-in-law has probably made the right decision and I
was glad to know that she is feeling better on the pills. I would be
very interested to know what exactly she if taking. The elderly
neighbour I mentioned was put on tamoxifen after her treatment. I
know post-menopausal women are often put on aromatase inhibitors such
as Arimidex. There may be newer pills now.It
is true that lobular cancer shows up very differently to invasive
ductal carcinoma. I think I remember reading that IDC is the term
used for breast cancers that are of no known type. I have always
found that a bit strange.I
was sorry to read that you are going through a bad time and that you
have had trouble sleeping. I can understand how you find the recent
news disturbing and depressing. These murders are indeed barbaric and
the journalists are innocent victims in all these political games. I
have found it has played on my mind and it seems as though we have
gone back to the era of the Crusades but with high technology and
sophisticated weapons. I see no end to it and it is all tribal and
religious.I
find it is not good to go to bed on watching the news or other
disturbing programmes. You need to go to bed relaxed so I find it is
better to sit quietly reading or listening to some gentle music or
finding something on the television that makes you laugh. If you feel
you need to see your doctor about your low spirits then of course you
must. Your doctor will probably give you sleeping tablets or
antidepressants. If that were me I would not want to take them.Try
to focus on the positives in your life. You are a three year survivor
of breast cancer and that is something about which to be glad.I
was most interested to know that Bernie is a bee-keeper and that you
have a bumper crop of honey. What kind of honey do you have? Is it
from a particular pollen? I do remember learning about how hard they
work.Yesterday
I went down to see the mother whose daughter died of her breast
cancer. Her mother must be 85 and is recovering from hip replacement
surgery. She is doing well physically but obviously fragile
emotionally. She is now alone as her husband died last year. She does
have another daughter in Devon.Most
of the time I feel fine and do not really ask for much in life. So
long as I have a book to read, a truly wonderful husband and friend,
and my health, that is enough for me. I keep busy running the
apartment complex here and keeping the thread going. I have done
about eight hours gardening in the grounds on Tuesday and Wednesday.We
have to take each day as it comes and deal with the ups and downs.If
you want to read an inspiring book, read “Radical
remission-surviving cancer against all the odds-the nine key factors
that can make a real difference” by Kelly A Turner, PhD. There are
some truly amazing accounts in this book from patients that have
survived cancer when they were told there was no hope. The nine key
factors are very interesting. They are:Radically
changing your diet.Taking
control of your health.Following
your intuition.Using
herbs and supplements.Releasing
suppressed emotions.Increasing
positive emotions.Embracing
social support.Deepening
your spiritual connection.Having
strong reasons for living.Take
care of yourself, Norma. This stressful period will pass. Enjoy the
small pleasures in everyday life.Fond
thoughts.Sylvia
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Dear Sylvia
This is just a very quick few lines before I hit the sack to Thankyou so much for your supportive words and advice - I feel better for reading your comments, and I wanted to tell you that. I will follow your advice about happy thoughts and the book sounds very good - it is being championed by several members of my Facebook TN site too.
Many thanks Sylvia,
Love Norna xx
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Hello
Norma,Thank
you for your post. I was only too glad to try to help. It is so
important on this thread that we all get together to help one
another. We have to remember that getting through the breast cancer
treatment is only one aspect of dealing with cancer. The emotional
side of all this is very important and we have to take care of it and
somehow learn to live a normal life.I
was pleased to know that the book “Radical remission” is being
talked about on the TN site on Facebook. The message that I have
picked up from this book is that a cancer patient should never give
up hope, even when they are told their situation is hopeless. All the
people that were interviewed in this book were stage 4 and yet they
are still alive, despite what they were told.The
other book that I like very much is “Beat cancer – the 10-step
plan to help you overcome and prevent cancer” by Professor Mustafa
Djamgoz and Professor Jane Plant – anti-cancer experts, Imperial
College, London.I
think the little book “Understanding Breast Cancer” by Professor
Mike Dixon published in association with the BMA, is the perfect book
to take a patient through their breast cancer treatment from
diagnosis through to the end of treatment.Yesterday
I received my latest e-mail from Chris Woollams at Cancer Active and
I have read through it with great interest.These
are the headings on the e-mail and then you have sub-headings
underlined and you can click on these for more detailed information.
You might want to subscribe to this.The
heading of the e-mail is “Are you being consistently being
misinformed?”1
What is the truth about cows' milk?2
The Butterfly3
Mobile phones and cancer4
New report on sugar5 It
is inside your body and controls your health6
Book review Everything you need to know to help you beat cancer7
Ketogenic diet symposium8
Did Angelina set women a good example?9
Big Pharma bribery and fraud – is it simply the norm?10
Yet more confirmation of the benefits of aspirin with cancer11
Chlorella does have research to support it12
It pays to buy quality supplementsIt
is important to go to all the underlined sub-headings to get all the
details.I do
hope you have a very good weekend after your first day back at
teaching. Relax and enjoy your free time.It
is very autumnal here today and you can feel that summer is at an
end. I have just been busy writing out the instructions to the
gardener for work in the grounds next week. There is still plenty for
me to do.Take
care.Love
Sylvia
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Hello
everyoneI
just wanted to wish you all a good weekend and thank all of you for
making this a quality thread. Keep up the good work and take care.Happy
birthday Mary in the USA. I am thinking of you.Best
wishes.Sylvia
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Hello everyone,
This thread is
really very quiet at the moment. I do hope you will all post in to
say hello soon. In the UK I am wondering whether you are enjoying
this Indian summer. The weather is unbelievable.Have you noticed all
the berries on the trees and shrubs. Are we in for a nasty winter?I was wondering how
you are getting on, Mary in the USA, now that you have finished
treatment.To Marymargarethope
and Jacqueline1963, how are you getting on with your chemotherapy?To Carolben, if you
feel well enough, please post in to let us know how things are going.On September 12th
it will be four years since I started this thread. A lot of women
have been on here and gone through their treatment. Wherever you are
now and whatever you are doing, I hope you are well and happy.To Michael, I hope
all is well.Best wishes to
everyone.Sylvia.
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Hello everyone
I thought you might like to see some more photographs taken in the grounds of our apartment complex.
Best wishes
Sylvia
Spot the bee
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Hello everyone
I am just posting to say that today this thread is four years old.
There have been some lovely women and groups of women going through their treatment here and I am sure they have all gained a lot of support and comfort. The thread is a lot quieter now and there are very few women coming on to say they have just been diagnosed and are seeking help. I started the thread because back in 2010 there still seemed a lot to be learned about TNBC, not to mention back in 2005, when I was newly diagnosed. I get the impression that even in the UK patients are much more informed and are given much more information about their diagnosis and treatment.At present, it seems that Marymargarethope and Jacqueline1963 are the only two who are posting and going through treatment. I do hope both of you are going through chemotherapy without too much trouble.
Of course, all of us keep Carolben in South Africa in our hearts and minds and I do hope that things are going well for this courageous woman.
I do hope, Linali, that everything went well for you at your appointment yesterday.
Hello to Normandee (Norma), adagio, Jackpot (Gill), Susaninicking (Susan), Maryna8 (Mary), and not forgetting Sarahlou, who is 15 years out from diagnosis. I do hope all of you are well.
A very special hello to Michael in Northern Ireland. I hope you continue to be well.
If anyone viewing has any new information about breast cancer with triple negative receptors, it would be nice to hear from you.
Best wishes to everyone.
Sylvia xxxx
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Sylvia - thanks so much for your warm wishes. I try to browse most days, but another wedding coming up in just one week, so I am crazily busy and feeling quite stressed. However, I am working very hard to breathe deeply and live in the moment. Life is a journey, so I must acknowledge each turn of the road - sometimes I don't particularly like the turn that it takes, but life goes on! And amazingly we survive and adapt. Glad you are well.
Carolben - thinking of you every day.
To everyone else I wish you well in whatever stage of the journey you are on.
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Hi Sylvia/Ladies,
Not been on for a while as I ended up in hospital for a week. After my 4th chemo session (docetaxel) I felt as though I had been run over. My joints/muscles were all sore. On the fifth day I felt shivery, took my temp (38.2), called the helpline and was told to go to A & E. They took my bloods and was told I had an infection. I was put on IV Fluids and Anit-Biotics but the White Blood Cell count was not coming down fast enough. I was eventually dischareged on Thursday.
I feel as though my feet/hands have been affected by the treatment. My fingures feel as though I have jammed them in the door, and the souls of my feet feel as though I have walked over hot coals. Sylvia, I think I will try soaking my feet in the Epsom salts. I am keeping them both well creamed and feel that is helping. The Cancer Nurse came and saw me in hospital and she said the onc may delay my treatment for a week or reduce the dose.
My mammogram results did not show a lump but i think Inflammatory Breast Cancer shows as more of a spread. My left breast however was clear. The surgeon has recommended a masectomy which I am scheduled for 4 weeks after my last treatment. Marymargaret I know you were asking about this earlier.
So I am 4 down 2 to go. Due my next session this Friday coming. I am going to put an electric blanket on my bed to help with the aches and pains - does anyone have any other suggestions? The breast surgeon gave me Tramadol to help with the pain but I was reading through the posts and saw that it made someone very sick - think I would rather put up with the pain.
On a lighter note - Sylvia your garden looks wonderful - time well spent! Was sad to hear about your neighbour - it hits home hard when it is someone near. Hope you did something later for your birthday.
Marymargaret - I think you and I are neck and neck with the treatment as we were roughly diagnosed at the same time. How are you finding the side effects? I feel a bit ashamed having a moan when you have 4 little ones to contend with. How is hubby coping?
I am going to make an effort this week to get on with my latest Play Tent - I am making a "Frozen" one which is all blue with snowflakes and snow - this will help take my mind off things. When I am productive I fell so much better!
We are having a lovely late summer up here in Scotland so we are going out in the car for a while - maybe to Ayr/Largs. The referendum is really heating up as the big guns came up from Westminster to support the NO campaign.
Sylvia - thanks again for all your work with this thread - I do find it very interesting especially when you recommend books/articles to read, and it keeps all of us hopeful and positive.
Take care everyone.
Jacqueline x
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