Topic: Calling all triple negative breast cancer patients in the UK

Nov 28, 2012 12:45 PM sylviaexmouthuk wrote:

Hello everyone.

I am posting some of the links connected with the CANCERactive e-mail that I mentioned the other day.

Aspartame and leukaemia and lymphoma.

www.canceractive.com/cancer-ac...

Michael, I think this will be of great interest to you.

Curcumin wakes up tumour suppressing gene.

www.canceractive.com/cancer-ac...

www.canceractive.com/cancer-ac...

Red grape polyphenols inhibit progression of breast cancer.

www.canceractive.com/cancer-ac...

Resveratrol may have many actions against cancer.

www.canceractive.com/cancer-ac...

Please read the seven pages with all the details about this.

Resveratrol and its significant benefits with prostate cancer.

www.canceractive.com/cancer-ac...

I hope you will find something of interest in all of this.

Good reading!

Sylvia

Nov 28, 2012 02:54 PM sam52 wrote:

Hello Sylvia

Thank you for your always informative posts.

I have tried twice to register for the regular emails from Canceractive - but have never received them......

I have not been posting as I have been spending a lot of time with my father.He was discharged from hospital on Saturday, but there have been a lot of problems, and today my brother, who has been spending the last 2 days with him, phoned me to tell me my father has fallen again.My brother has to return home tonight, so I am very concerned about my father.

I am actualy feeling completely exhausted and stressed out with it all.It does not help being so far away.On Monday evening I drove home form my father's via a detour to avoid flooding and then hit dense fog for quite a few miles.We are thinking that my father will have to have much more care now, or even residential accomodation, but these things are not easy to organise in a hurry.

Have you seen the latest post on the thread I started 'Parathyroid disease and breast cancer'?

I have no idea whether my bone density has improved; I would like another DEXA scan soon (it will be 3 years since my parathyroidectomy next March) - but I am now discharged from both oncology and endocrinology. Have you had a DEXA scan since your surgery for parathyroid disease?

Hoping you are surviving the weather down in Exmouth.

With love,

Sam x

Nov 29, 2012 07:21 AM sam52 wrote:

Hi mumtobe!

Hospitals seem to vary in their pre/post surgery procedures.....

I did not have any scans either before or after surgery (I also had 3 nodes positive); as far as I can remember, I got a chest x-ray at some point and also an ECG.That was it!

I was also told that scans would only be given after treatment if there were any symptoms.

My check-ups were always just 'prod and poke' and a yearly mammogram, which went to 2-yearly after about 8 years (at my insistence - I did not want so much radiation).

I don't think you should be concerned - I know that what happens to other people always sets us thinking and worrying, but your care seems to be fairly standard.The question is - why did your friend not have her 'suspicious nodules' further investigated at the time; and knowing that they were there from a CT scan obviously did not help her.

Try to set your mind at rest; I know this is often easier said than done.

Nov 29, 2012 11:22 AM Kymn wrote:

Good morning ladies, so sorry Its been a week since my last post. I have been so busy trying to figure out schooling and volunteering at the cancer clinic here. I start volunteering next week and am very much looking forward to giving back. About the conference it was amazing I have been to two parts so far the first was a 5 day intense seminar dealing with our negative thought patterns and how they affect every aspect of our lives. The colours seminar was the second one and it was 3 days and it has to do with different personality types, not the colours that look good on you lol but I do remember back in the eighties when that was all the rage. Basically it talks about the 4 different colour types Blue,Green,Gold and Orange and the different ways we interact and deal with the world, ourselves, others and why. It was really interesting and help me to understand my own brain lol. I am a blue/green which is emotional thoughtfull the blue and logical the green so I can logically understand a situation and gather all the information I need to understand it but it doesnt always match up with my blue emotional side of my personality, I thought I was going crazy lol that I could still have so much sorrow over my x abusive narcassistic relationship knowing clearly that it was unhealthy the abuse cycle the narc tendancies that he would never change etc etc. It was extremely helpful, there are a lot of very interesting books out there on this subject. The third part of the course is in January and its for 3 days also and it focuses on the dark side of our colours and our mission in life. It has been a wonderful growing experience. Self knowledge and understanding he human condition is truly a passion of mine. My ultimate goal is to become a life coach.

Anyhow hope I didnt bore you all, lol. Have a great day.

Oh and NO I dont like the cold snowy alberta winters :). I LOVE THE SUN

Hugs Kymn

Nov 29, 2012 02:43 PM, edited Nov 29, 2012 03:36 PM by sylviaexmouthuk

Hello sam52

Thank you for your post. I was glad to know that you find the posts informative.

I do not understand why you have not received the e-mails from CANCERactive, because if you click on CANCERactive, enter your e-mail address and click on Add me to the News List, that should do it. This is what I did and the e-mails arrive very regularly at my e-mail address. The CANCERactive e-mails are always very informative and I read through one as it arrives and then click on the titles underlined and read information in more detail, and then post the link etc. on our thread.

I have been thinking of you a lot and thought that you were probably very busy looking after your father. I really understand that, as I had to do a similar thing with my mother. Where I live in Exmouth, there are a lot of elderly people who end up needing care. They start off with carers coming in morning and evening, but I have seen first hand that this care is inadequate, especially if it is funded by the NHS. I have looked after some of the neighbours here and have dealt with carers. They are usually very young girls who have less than half an hour in the morning and the same in the evening and can do virtually nothing. Often they do not arrive on time because they have been delayed by other visits. They also come too early in the evening and put patients to bed. I think when elderly people cannot cope they are probably better off in a retirement home or a nursing home, but you have to make sure they are in a good one.

Often, you can find a place by arranging respite and then making it permanent.

I do hope you will be able to find the best arrangement for your father, so that he will be safe. It is so dangerous to be alone in your home, have a fall and be lying there for hours waiting for someone to come to your rescue.

I have just had a look at the thread that you started, Parathyroid disease and breast cancer, which I had not looked at in a while. You just never know when a thread is going to come alive after a while with a new post. I found that latest post extremely interesting and it has got me started wondering again about this connection between hyperparathyroidism and breast cancer and about which one comes first. I am sure you will remember all our discussions about this and all our PMs as we both went through surgery for a parathyroidectomy. I shall read the post again in detail and do another post tomorrow. We need to keep that thread going, so I have put it as one of my favourites. I am also trying to keep two other threads going. One is the High Calcium thread on the forum Not diagnosed with recurrence or metastases but concerned. You will remember we had lots of posts together on there. I am also reactivating a thread started by someone back in 2009, entitled Not a typical triple negative. This thread is about older women diagnosed with TNBC because it is supposed to be a breast cancer of younger women. From what I have been reading, TNBC seems to affect all ages but it could well be that much younger women are in the majority.

I also have no idea whether my bone density has improved. I had a DEXA scan in February 2010 about three months after my parathyroidectomy in November 2009, and I had one before that in March 2009 when I became concerned that I had lost a bit of height. Before that everything had been normal since I was diagnosed with hyperparathyroidism when diagnosed with breast cancer in 2005. My consultants, who were busy treating my breast cancer, seemed to have forgotten about the hyperparathyroidism and I had not worried about it until 2009. It was then that the consultant told me to have the surgery.

There was a slight improvement in the bone density reading in the 2010 DEXA scan, but osteoporosis was still there.

It will be three years in January 2013 since I had that second DEXA scan. I was told that you can have one only every five years. I am beginning to think that I should try to push for one. With the NHS we never have preventive treatment. I am still concerned about taking calcium tablets, even though I take only one a day. I have read a few other posts where women have had high calcium blood serum, been taken off the calcium supplements by their consultants and everything became normal. They were apparently told to take only vitamin D.

We are fine here in Exmouth, but very fed up with the weather. At least, for the past two days, it has been dry, sunny but very cold.

I shall do some more posting tomorrow.

Take care.

Love.

Sylvia xxxx

Nov 29, 2012 03:04 PM sylviaexmouthuk wrote:

Hello BernieEllen and Kymn

I have not forgotten you but have run out of time. I shall continue tomorrow.

Best wishes

Sylvia xxxx

Nov 30, 2012 10:34 AM sylviaexmouthuk wrote:

Hello BernieEllen

I was just wondering how you got on this week with your lymphoedema.

How are things going in Ireland?

Best wishes.

Sylvia xxxx

Nov 30, 2012 11:11 AM sylviaexmouthuk wrote:

Hello sam52

I have just reread the posts on the thread you started and the details about a poster called Sue. She has been through a really bad time.

I have just been back to parathyroid.com to look at some information. I shall read it and let you know if I have any comments.

Was it on parathyroid.com that we found the Swedish research and the connection between breast cancer and hyperparathyroidism? I would like to look at it again. I remember sending it to my GP, consultant and oncologist, as well as Professor Karol Sikora, who was most interested in it.

Love

Sylvia xxxx

Dec 1, 2012 01:41 AM linali wrote:

Hi, Just a quick post as I am up early to put washing on,who would have thought that one 2yr old boy could create so much.

Leigh is home but has only been in bed 30 minutes. He is still wound up after finishing a 50,000 word novel writing competition.

The centre Xmas party is on this afternoon and Mary who runs the centre has no car at the moment and needs to be picked up at 8 15 to shop for the last few items,most importantly lots of fruit for the mulled wine. The men's group is meeting first and then the party starts at 2. We are out in the country and people are nervous of the road on a frosty winters night and so this year it was decided that afternoon would be best. I shall bring Oskar for a while as my friends teenage daughter is keen to see him.

We are doing our first public "performance" as a small choir later on,after a glass of mulled wine! We are not note perfect but are very enthusiastic.

When I first registered for the canceractive news letters I initially had a problem because of having no post code but they e mailed me to sort it out and I have been getting the news letter regularly.

I read the articles re drugs and grapefruit. I was familiar with the grapefruit contra reactions because I am on lipitor and cannot have grapefruit anymore as it affects the absorbtion.I always loved grapefruit especially the ruby or pink ones.

I also had trouble with my veins during chemo and used to travel to each session with either a hot water bottle or hot wheat bag around my arm to heat and plump them up.

I see that Miracle on 34th Street is on later, that and a Christmas Carol and A Wonderful Life are some of my favourite Xmas films.

I usually put my tree up nearer to Xmas because the cat goes crazy and runs up it and then bashes the baubles but I thought that it would be lovely to do it with Oskars help. He is such a cutie and if I had a little red and green outfit he would look just like a little elf. I know I have a Granny's biased but he has such big brown eyes and a cheeky smile. 

Ireland has been in the news for the past week or so and not in a good way. It is so sad to hear of a young woman dying in those circumstances and doubly so for her husband who lost both his wife and child. People here are very divided re the laws but I know that Leigh joined many, many people in a candle lit vigil.

I am so looking forward to this afternoon as I have already turned down 2 invitations because they were at night and I am afraid that I am so exhausted chasing round after Oskar that all I want to do is go to bed with a good book when 9pm comes around.

There are 2 wonderful women in particular who are very ill but are determind to come out to the centre party for an hour this afternoon. It makes you even more aware that if possible you should take pleasure in the good and happy things in your life.

Sending thoughts to you all and will be singing for all of you today.

PS sorry about the length, it seems so long since I had this much time on the computer.

Dec 2, 2012 06:12 AM sylviaexmouthuk wrote:

Thank you Kymn, linali, and BernieEllen, for your interesting posts. I shall be doing some posts later on today.

Fond thoughts,

Sylvia.

Dec 2, 2012 11:06 AM sylviaexmouthuk wrote:

Hello BernieEllen

Thank you for the joke. That gave me quite a laugh! It just shows you what is happening to us all.

I am not a computer addict and I do restrict my use, but I did read that there are people out there who cannot be without their mobile phones and have withdrawal symptoms if they do not have them and keep checking for text messages during the night!!!

I hope you have now recovered from the Christmas party with thirty-six children. I am sure you did a great job with them.

I was glad to know that your hospital appointment went relatively well.

I hope you will heed what you have been advised and that you will try to get more rest. If I were you I would set some time aside during the day just to sit and relax and perhaps dream a little.

Did you loose a lot of weight during treatment? I can understand that your immune system is still compromised as it is not that long ago since you finished treatment. Feeling cold could be due to bad circulation, so some stretching exercises might help. Ginger tea is always very warming. Perhaps you need to put a warm pad on your arms etc., or have a hot water bottle wrapped in a towel.

I do hope you will soon hear about your disability claim and that you will have good news. I have no patience with all the bureaucratic inertia and nonsense that we have to tolerate, not to mention analysis paralysis!

Like you, I am not looking forward to the pre-budget autumn statement here in the UK, which is also on Wednesday. I regularly watch Prime Minister's question time from Westminster and am appalled by the churlish and childish behaviour, mainly from the men. Our Chancellor of the Exchequer, or part time Chancellor as he is known, is going to utter more doom and gloom and tell us of more cuts and longer to wait for recovery. I do not like our Eton posh boy, otherwise known as George Osborne, multimillionaire and Bullingdon Club boy. We are definitely NOT all in this together as we are constantly being told.

This morning, outside our local supermarket, there was a food bank set up asking for basic goods for the needy. It is ironic that people are going into the supermarket to buy food and then donating some of it to the food bank. That supermarket could afford to give away bags of food. They were announcing that they would up by 30% whatever was donated. They are not silly. They are pushing you to buy more which always translates by bigger profits. I asked them once what they did with all the reduced food which did not sell. I was told they threw it away and I told them that was scandalous.

I feel so sorry for your friend whose is going to lose her home in January and has two children to support. Where will she go? Why do so many men behave so badly? I have heard similar tales on the TNS thread, especially of husbands or partners leaving their wives because they cannot deal with the breast cancer diagnosis. I really feel that there is no justice in this world.

This is not a rant, Bernie. There is so much that is wrong in the world.

I think it is very important to talk about all these things and that it is good therapy for all breast cancer patients to let off steam and get their feelings out in the open.

Best wishes.

Sylvia xxxx

Dec 2, 2012 11:43 AM sylviaexmouthuk wrote:

Hello Kymn

Thank you for your post and your kind comments.

I was glad to know that you are blessed with two nice children. You have certainly been through a tough time and I hope the future will bring you better things. I hope you will manage to find work and/or retrain and that you will be on the path to a successful career. I do not know what the job situation is like in Canada these days. Here in the UK it is dire and I feel sorry for young people who are starting out in life. I feel that all the good work that was done here after World War II is unravelling and that we are going backwards.

I hope the assistance that you get from the Canadian Government is better than it is there.

I feel that you are very determined and that things will work out fine for you. I admire your courage.

Best wishes.

Sylvia xxxx

Dec 4, 2012 06:16 AM sylviaexmouthuk wrote:

Hello sam52,

I hope all is well. I wanted to let you know that I spent a lot of time yesterday printing out a lot of information about hyperparathyroidism, breast cancer, osteoporosis etc on parathyroid.com.I hope you will be able to read it, so that we can discuss it. It made me think that the Dexa scan I had was inadequate and that there is a link between hyperparathyroidism and breast cancer and that the hyperparathyroidism comes first. I also think we should be more closely followed to see what is happening with our osteoporosis after our hyperparathyroidectomy. The site does say that osteoporosis after hyperparathyroidectomy is reversible most of the time. Of course we have had a double whammy because of our breast cancer treatment that also causes osteoporosis, and I do not know whether this is reversible.

The link is www.parathyroid.com/

On this site there is all the information you could possibly want.

Wishing you all the best.

Love

Sylvia xxxx

Dec 4, 2012 07:33 AM sylviaexmouthuk wrote:

Hello everyone

I hope your week is going well. If you have been reading the recent posts, you will see that I have been mentioning hyperparathyroidism (an over-active parathyroid gland). Please do not confuse with the thyroid gland. An over-active parathyroid gland causes calcium to leach from the bones into the blood stream. There is research showing a connection between hyperparathyroidism and the development of breast cancer.

You might like to read more, in particular about high blood calcium (too much calcium in the blood). The link is:

www.parathyroid.com/high-calci...

It is never normal, apparently, to have high levels of calcium in the blood and even slightly elevated levels should be checked out. The information I have read states “Over 99.8% of all people who have a blood test that shows too much calcium will have a parathyroid problem. In fact the number is closer to 100%”.

You need to get your PTH (parathyroid hormone) level checked. If you have a parathyroid problem that is not treated you end up with osteoporosis.

That is enough for today.

Best wishes.

Sylvia.

Dec 5, 2012 01:21 AM linali wrote:

Hi, up early to catch up on things.

Oskar had a bad night so hope he sleeps on. He loves the tree and all the sparkling lights. 

Still cannot get him to be gentle with the cat.

I didnt sleep to well either as I am dreading today's budget and all the cuts it will bring. I cannot work out how governments think that they can stimulate an economy by taking more money from the middle people who are likely to spend on their homes. They have created no jobs and once again will hit the old and defenceless. They are even talking of taking away the grant that people can get to help with a funeral and the oap home package is to be cut .

Once again the wealthy will escape. I admire the people in continental Europe who take to the streets en mass to protest. At least it shows they have some fight in them left.

This is Oskars last day with us. His daddy is coming tomorrow. I will miss him so much but will spend Friday just chilling and winding down.

Hope that everyone is warm and safe.