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Here we go again

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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:27

01 Nov 2010


Thank you my dear friend. I already have. lol - you're going to regret this you know ... cos I've just transferred all my misery and mood over your way ... and you know what... I can feel a tad of a smile on my face as I type this.

The 'Soap Sandwich' will be starting on telly in a min ... Corrie / Eastenders and then another Corrie. A distraction ... let's hope tonight's episodes are not too full of doom n gloom as is very often the case. ha ha

Thanks again Feather. Love ya loads xxx
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:29

02 Nov 2010


Thank you Pixie for your lovely PM and thanks for all your kind words.

Well ... mammogram was fine .. all seems fine ... except now (as I predicted) they are strongly advising me now to agree to the chemo. This would be in the form of tablets ("hormone" tablets really) - Tamoxifen for two years ... and then something else called XMS something or other for three years. I asked why the change - and they said Tamoxifen should not be taken for longer than two years - it can have a bad effect on the uterus (yeah amongst other things ... hair loss etc ... I've heard of the Tamoxifen (spelling?) but not the other thing, and when I questioned is this a new thing then, they said oh no ... it's been around for about 6 or 7 years now. Okay ... I said ... that is definitely not a long time for a new drug to be on the market ... not enough time to research into the ins and outs ... I would be extremely reluctant to agree to that (and the MacMillan Nurse behind was nodding her head in agreement there).

Anyway ... I did say that I was going to go along to the Maggie's Cancer Care Centre which is attached to the original hospital where my radiologist specialist is ... to talk things over with them ... everything there to do with cancer (have a look at the video on the portal page) - and he (the Consultant) was very happy to hear that, could not praise them highly enough - and said that he himself pops over there from time to time (in a voluntary capacity as they all are). He also told me to check out their Cancer Survival Group ... which I shall do.
I have got one month to decide about the chemo (and he recommended talking it over with the Maggie's people) ... an appointment will be fixed to see the consultants again in a month's time ... when I will need to give them my decision.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 20:32

02 Nov 2010

It's good the mammogram was clear. I think you need to ask yourself which you would rather have happen--the chemo with all the side effects or the return of the cancer. I don't mean to sound harsh and there may not be a recurrence but my advice would be not to take the risk. The consequences might be catastrophic. Never mind about your hair--lovely though it is. There are gorgeous wigs to be had nowadays, natural looking and comfortable to wear. Your own hair will grow in again. I know you will make up your own mind, Candlelight, but I wouldn't be a true friend if I didn't urge you in a certain direction.


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Re: Here we go again

Post by Pixie1970 on Sun 7 May 2017 - 20:36

03 Nov 2010


Good news about the mammogram!

I agree with Feather as regards chemo although it's easy to say when you are not the person going through it but to me it seems the right thing to do. I know you will be worrying about your hair and maybe having to wear a wig but think of the time saved by not having to phaff about washing, blow drying and what not...you could get a selection...be a blond on a Monday and a brunette on a Tuesday! These days, you really can't tell the difference but a word of warning.... remember to take the price tag off!


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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 20:37

03 Nov 2010


Get one as near to your own hairstyle as possible. No-one will notice the difference. Trust me!!!


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Re: Here we go again

Post by Stardust on Sun 7 May 2017 - 20:40

03 Nov 2010


Turbans are good too, very flattering and don't itch. WIth wigs you have to wear a thingy (don't know the name) that hugs the scalp so the wig doesn't irritate the skin. I suppose some wigs may have them built in. The cancer centre should have all the info you need, Candlelight.

And we're all here to give you moral support.



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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:43

03 Nov 2010


Been checking out and delving more into the info that's around ... and the more I look into it the more I am becoming determined to stick to my decision from the off...

For instance ... http://www.cancerhelp.org.uk/about-canc ... e-effects/

I will still look into it thoroughly when I go to the Maggie's Centre. I did discuss it there with someone when I was having my RT - also with my GP and the Macmillan nurse - and the radiography consultant ... they all seemed perfectly happy with my decision and no-one tried to sway me one way or the other.

At the time when I first expressed my wishes to abstain (and they recognised that it was not a decision I had gone into lightly without much thought and research), it wasn't such an issue then because the radiotherapy was ahead and had to be gone through first and chemo was something which would be happening later on. (I have to admit - I didn't realise at the time .. well certainly didn't anticipate that it would have to be endured for such a long time - 5 years! I had thought a chemo course would be over a few weeks - months at the most!

I still haven't been able to find any more info on this other drug they mentioned - XMS or something like that ... but I suppose the Maggies place will have all that there. Much to discuss and ponder over when I go there. I'm planning to go on a Tuesday because that's when they have their Relaxation Sessions - went to a couple of these when I was having my radiotherapy ... and I'm also hoping to get another wonderful relaxing massage as well. (The girl in the video - I met her .. she was in the Relaxation class first time... and there was another woman there who travels up from [somewhere like Kent or Essex - quite a trek anyway] once a week every week ... for the relaxation session and everything else that they offer there. (When I got there first time they were in the middle of preparing lunch (all free) and it smelt wonderful .. all very healthy too of course) They offered me to join them but I declined [even though I was starving and the smell was driving me mad ..] felt bad that I had just dropped in there unannounced sort of thing ... but they're really not like that at all ... it's just like a home from home (well ... better really - for me anyway). I'm actually really looking forward to my visit to Maggies.

The Consultant when he was telling me to check out the Survivors Group .. was starting to say that they hold the group meetings regularly every such and such a day once a week, and when I said that regular attendance would be bit difficult for me as I work full-time .. he was surprised - that I was working at all! Anyway ... he said We will have to see about getting some sort of evening group arranged ... and was furiously writing down something. Well now THAT sounds really promising .. and positive... and he strikes me as someone who would really have a bit of clout about the place.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 20:45

04 Nov 2010


Of course, Candlelight, the final decision is yours alone to make. I know you will look into all the pro's and con's thoroughly. x


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Re: Here we go again

Post by Stardust on Sun 7 May 2017 - 20:48

04 Nov 2010


Are you sure XMS wasn't Arimidex?
Have you seen these two sites, Candlelight. The first one especially is pretty good.
http://www.cancer.gov/cancertopics/fact ... /tamoxifen
http://www.breastcancer.org/treatment/h ... oxifen.jsp
I hope you find them helpful.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:50

04 Nov 2010


Thanks Stardust. Yes, those links are very helpful. (I actually already have a link to the second one included in my recommended links on the portal page).

I was a member of an excellent forum which started up about a year ago called 'Conquer Cancer'. I joined from the beginning and had my own blog there along with some others. The forum started off very well with interactive contributions from cancer sufferers, their friends & families and those who had lost people to cancer ... very informative ... but sadly the forum became inactive ... the Admin seemed to disappear and the posts got less and less. All that was left was their Shoutbox asking where had everyone gone to. Then one day I looked in and the forum was no longer. Deleted because of inactivity. Such a shame... and there seems to be no way to recover all the input there.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:54

04 Nov 2010

This is where I will be going on Tuesday.  I have taken the day off work ...

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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:55

06 Nov 2010


Just typical of my flamin' luck. My appointment date has been arranged to see the Consultants and Specialists (and this time I've actually got a letter informing me) ... to give them my decision on starting the chemo and discuss the arrangements - but of all the days in the year they had to go and fix it for the 14th December - which is my birthday!
Definitely not the ideal way to celebrate be celebrating your birthday... I've already got the day booked off work - nothing planned as yet for it but for sure that's not part of the plan. I am going to try and see if I can get the date changed ... will probably delay matters if I do that, but what the heck ... maybe it's meant.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 20:58

06 Nov 2010


There's a simple explanation-----

[image no longer available]


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:01

09 Nov 2010


This is where I spent a good portion of my day today.

https://www.maggiescentres.org/our-centres/maggies-west-london/


About Maggie's
A Maggie's Centre is a place for anyone affected by cancer.
We offer information, psychological and emotional support and practical advice.
Maggie's programme of support is designed to give people the tools they need to cope with the major impact cancer has on their lives.
All our services are free of charge and we work in partnership with local NHS Trusts.
Our buildings are positioned close to major cancer treatment centres, within hospital grounds.

Goals and Objectives

Maggie's Centres help the individual adjust to living with cancer.
We are open to anyone, whether they are diagnosed with cancer, a family member, friend or carer.
We provide high quality, evidence-based psychological support.
Our aim is to help achieve a psychologically healthy adjustment to diagnosis and treatment.
Our programme encourages the individual to feel more in control of their life and gain confidence to live with hope and determination.
Maggie's programme is supportive of medical care and complementary to it.
Our services are free and easily accessible. Our centres are built in close proximity to major cancer hospitals.
We aim to highlight the need for psychological and emotional support within the NHS and to influence health care strategy and practice nationwide.
The domestic scale and imaginative environment of our centres are a key part of our programme. They are places for you to be yourself, not a hospital patient.


I managed to change the date of my appointment with the consultants - which has now been brought forward to 30th November, when I must give my decision as to chemo drugs every day for 5 years - or not.
I went to Maggie's today, mainly to get help with that decision ... to discuss the fors and againsts, the benefits and disadvantages etc. I really can't speak highly enough of this place and those involved in its running. Nowhere else is it possible to find a coming together of all the amentities on offer there (free of charge to anyone affected in any way with cancer), coupled with the opportunity to question & discuss your own personal involvement on a one-to-one basis with a wide range of knowledgable, responsible professionals and practitioners (whether you are the one with cancer, or you are a friend or relative of someone affected - as of course when cancer strikes, it has a huge effect on the lives of those around you also). In addition you get to meet and chat with others in a similar situation to yourself, whether you be any of the aforementioned.

Well, I've made my decision ... I am now 100% decided to decline the drugs ... but it's not just a case of no drugs and that's it. No, it is an alternative for me ... which involves making some changes to my lifestyle, in diet, exercise etc. My decision was greatly (and timely) helped on learning that in January they are starting up a Survivors Group there... called 'What now?' ... for those in my position who have finished their treatment (i.e. radiotherapy in my case) so .. what happens next, how to cope in your everyday life / continuing work (or not) etc.? The group will meet regularly once a week - and it will be an evening session, which is just perfect for me as up until now the opening hours there have been 9 to 5 Monday to Friday which for me working full-time with and entailing a fair old trek to get there, would not have been terribly practical. So, it's that particular event that has given me the incentive in making my decision, knowing that it will not be a negative decision - but actually looking forward to availing of an alternative positive prospect ahead. I'm actually quite looking forward to these sessions. They are going to let me know the full details just as soon as they know themselves, so I'll be in on it right from the start.

(ha ha - I have to say it ... it was meant!)
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 21:06

09 Nov 2010

I didn't know that Chemo was ever given for as long as 5 years. That seems a very long time to be getting such a treatment considering all the possible side effects it has.I wish you all the best in the decision you have made, Candlelight. xxx.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:09

15 Nov 2010


I found this article quite interesting ... with some other interesting links within

From here: http://www.newscientist.com/article/mg20827864.900-red-light-forces-cancer-cells-to-suck-up-drugs.html

Red light forces cancer cells to suck up drugs

13 November 2010

CELLS absorb chemotherapy drugs more readily if they are zapped with red light. The finding could help produce more effective cancer treatments.

Most cancer chemotherapy relies on cells absorbing drugs by diffusion across the cell membrane. This does not always work, because some cells simply push the drug molecules back out using a natural pump mechanism.

To overcome this problem, Andrei Sommer at the University of Ulm in Germany and colleagues exposed cells to pulsed red laser light. Light of this wavelength decreases water density and pushes water out of the cell. When the laser is switched off, the water returns to its high-density state, forcing the cell to "suck in" water and any other molecules, including drugs, from its surroundings.

The researchers tested their technique by applying the light for 1 minute to human cervical cancer cells surrounded with common anti-cancer drugs such as epigallocatechin gallate (EGCG). This short period of light exposure was sufficient to kill off 70 per cent of cancer cells surrounded by EGCG, compared with 31 per cent of cells not exposed to light (Journal of Controlled Release, DOI: 10.1016/j.jconrel.2010.10.010).
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:10

05 Feb 2011


The Cancer Survivors Group starts at Maggie's Centre on Monday, 7th February. 6.30 to 8.30 every Monday evening for a period of 6 weeks. I'm looking forward to it. Not quite sure yet what it entails, but will record in here as and when.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 21:12

05 Feb 2011


I'm sure you will enjoy it a lot, Candlelight. Look forward to reading about it here.x.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:14

08 Feb 2011


Well, I went to the first session this evening. It's actually 2 and a half hours, not 2 as I had originally thought. Long day, straight from work and not long home now. I'm glad I decided to drive there now rather than bus it - would've been about an hour and a half journey by bus(es) and in the mad rush-hour traffic too... and pay-for parking finishes at 5pm around there, so that was a nice surprise too.

We had loads of forms to fill in to begin with, individual questions which will be monitored over the course of the programme and reviewed at the finish. Half an hour of exercise, which I really enjoyed. There are 10 of us on the course, each at different stages, different diagnoses/treatments etc. 2 guys and 8 women. To begin with we all sat around this massive big wooden kitchen table and had a sort of AA Introduction thing. "My name is blah .. and I'm an al .... oh no, sorry ... I've got such-and-such type cancer, diagnosed whenever, had this treatment or that treatment, such and such still ongoing ... type of thing. Everyone's situation there is different and yet many common factors run through - like the fatigue that seems to affect all of us long after the initial treatment, the psychological factors, the spontaneous bouts of depression etc. It was very emotional. Some were angry ... Why me? Some fearful, some accepting ... as I said all different situations. One of the guys has bowel cancer and not long after surgery and part treatment. The other guy is there to support his wife who has multi secondary cancers affecting many areas - and is very, very emotional and frightened. He also lost his best friend to cancer of the osophoegus. We are all from different areas and treatment has been in different hospitals.
I was surprised to see that most find it difficult to deal with what seems to be the notion from others that just because you're back at work now, you must be OK. It's all over and done with. (I had thought it was just my work that thought that way - at least my boss). No, far from it .. apart from the psychological after effects of your initial diagnosis, there is so much more and as one person tearfully pointed out, especially in the first 5 years after diagnosis there is always the fear that every little ache and pain which before would have been dismissed as say a headache or whatever, the wondering could this be a symptom of a secondary cancer.... Anyway, the interactive discussions went on for a while, during which time everyone has bonded as a group. Then we enjoyed a delicious healthy and nutritious spread which had been laid on for us.
Each of the following 5 sessions will be allocated to a separate theme. Next week is exercise, then will be nutrition, the following week a Consultant is coming in to discuss various aspects with us, as a group and individually (e.g. one woman there is specifically concerned with genetic testing, as she is in a group which is commonly prone to a genetically formed cancer (Jewish something or other?). As it happens, it is anticipated that the consultant will be my own one, who is closely monitoring my own situation. My next appointment with him is on 1st March. Also, one of the weeks we will have a specialist Psychologist coming in as that week will be dedicated to the many psychological effects involved where cancer is concerned.
We each have been given diaries to make our own individual daily record of progress over the 6-week period. We're supposed to write down and describe in detail all that we eat, portions, times, etc - why? (i.e. was it a comfort snack.. that sort of thing) how it made us feel afterwards ... really going into detail. Our exercise routine and generally everything and anything that happens during the course of the week and what effect, good or bad, that might have had on us. Record doc/consultant appointments, their reasons/discussions/results etc. Oh yes, we've all been given one of those stepometer thingies that you strap to your person and records every step(!) I suppose at least that'll be an incentive to get up and cross the room to change the channel on the tv instead of just pressing the remote! 8-)

All in all, I think it's an excellent package - and all totally free of any charge, which if anything will serve as a kick-start into developing an appropriate routine and helping to cope and deal with whatever the future may hold in store... and hopefully, we will all continue to keep in touch with each other after the 6 weeks are up.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 21:17

08 Feb 2011


That seems to be well worth the effort of getting there, kk. Everybody needs moral support in difficult circumstances and where better that there, eh? That's what I would call a perfect number of people in the group--not too many to get to know and not too few for a good discussion.Also they seem to be covering everything, even exercise!!!!
I bet there aren't many places like that in the country. Best of all--you're enjoying the experience. xxxxxx.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:19

08 Feb 2011


The main thing is for others to realise that they're not alone. There are many issues that are hard to address with family/friends etc ... even concerning family and friends.

Also, we have all the professionals and specialists in each different area there on tap to help with any individual questions, worries or hurdles each step of the way.

One woman there is a carer. The mother of the children she cares for has cancer.
She (the carer) has cancer herself, and so she can understand much of what the mother is going through. Some of her friends (the carer) have been completely cut off from her and she cannot and will not forgive them for not being there for her at the time of her diagnosis and treatment. She says some of them made one excuse after another not to come see her - and now when she "appears to be ok" they want to come around. She can't and won't forget.

I actually learned something just through passing conversation - I was corrected in that what I was referring to "hormone drugs" recommended to me - are actually "hormone inhibitors" - i.e. You can arrange your diet to control the intake of oestrogen products (oestrogen in some cases is what can cause the cancer to spread through the body, thus the cause of secondary cancers) BUT your body produces oestrogen anyway whatever about your diet - and it is this that the drugs act upon. They stem the flow of the oestrogen. I seem to fall into this category in that my cancer can be affected by oestrogen (not the same for everyone, depending on their situation and where their problem is). That is why I was recommended that particular chemo treatment.
Another girl there had something similar. She was taking Tamoxifen but it did not agree with her, so they tried her with a different one. Same thing. Did not agree, so she had to stop all the drugs - and alternatively had to have a masectomy.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:21

07 Apr 2011

A week has almost passed now since the Nuclear Medicine Full Body Bone Scan last Friday.  The worst part is the in-between time waiting for the results.  As the appointment with my consultant is not till 26th April, it's a long time to wait to hear the results, so it was suggested I phone after a week to find out the results before seeing the consultant.  I am going to phone tomorrow. 

Meantime, I have found an easily readable and understandable explanation of why a bone scan needs to be carried out.

LINK:  arrow  Understanding Bone Metastases--When Cancer Spreads to the Bones
Cancer that has developed in one place can spread and invade other parts of the body. This process of spreading is called metastasizing. If a tumor spreads to the bone, it is called bone metastasis.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:23

15 Aug 2011


Reminder to self (for the record): Consultancy appointment with Coloproctologist 11th August 2011. Awaiting date for coloscopy procedure. Estimated in about 2 weeks from that date.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:25

16 Aug 2011


Well, I was informed today that my "procedure" will be on Wednesday, 24th August. Got a huge packed envelope with the letter, explaining the whole thing in detail ... including the risks (what can go wrong ) .. and I have a strict procedure to adhere to for the 7 days beforehand. It all sounds terribly daunting and I'm not looking forward to this thing one bit. I will be sedated on the day - which is supposed to make me relaxed and drowsy. Should be in the Unit for approximately 4 hours - and have the option to watch the whole procedure on the monitor if I wish. Er ... no thanks! (I wonder if they'll let me watch a DVD instead).

I'm on anxious tenterhooks for the next week. None of the other stuff I've undergone seemed so daunting.
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Re: Here we go again

Post by Stardust on Sun 7 May 2017 - 21:27

17 Aug 2011


It's not very pleasant, but I don't think the actual procedure itself is as bad as it may sound, Candlelight. I've never had it done but I know folk who have and they were ok afterwards. Please don't stress over it. Thankfully it's only a week to wait so it will be over soon and you can forget about it.
I think I'd be squeamish to watch it on a monitor too. But if they made the offer then obviously it can't be that bad, can it? So relax and think of September in Bath instead.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:29

01 Oct 2011

Very good news

1 October 2011

Beta blockers 'may stop breast cancer spreading'
Breast cancer cell Researchers are trying to find ways to stop breast cancer cells spreading

Cancer experts are to carry out a major study to see if commonly used blood pressure drugs cut the risk of breast cancer spreading.

Data from 800 patients has already shown those previously given beta blockers had half the chance of their cancer spreading as women who had not.

So-called secondary cancers have a high death rate.

The Cancer Research UK backed study will look at about 30,000 patients, and will report next year.

If that too shows benefits from the medication, further research in which breast cancer patients would be treated with beta blockers, would follow.

Doctors cannot move straight to this kind of study because they need to have more evidence there is a beneficial effect of taking beta blockers first.

They say there is no evidence so far that anything else explains the benefits seen - but the large study will look into that even further.

Breast cancer spreading to other parts of the body is the biggest cause of death from the disease.

It is thought that about 30% of breast cancers spread, yet these account for up to 90% of all deaths from the disease.

The early work on beta blockers found that the women who had taken them had a 71% reduced risk of a cancer-related death.

Another study has also identified the biological process whereby beta blockers stop cells moving - and therefore stop cancer from spreading.

They do this by stopping the action of a molecule on the cell surface called the noradrenergic receptor. If this is blocked, cells cannot move to other parts of the body.

Dr Des Powe, from Nottingham University Hospitals NHS Trust, is working on the research in collaboration with scientists from Belfast and Germany.

He said: "Cancer can be thought of as having two distinct phases - before and after the disease has spread.

"Many women will be successfully treated for their initial breast tumour but in some, the original tumour leaves a legacy - a daughter of the primary cancer.

"It is absolutely crucial to conquer cancer spread if we are to really improve breast cancer survival as this problem causes nearly all deaths from the disease."

Dr Julie Sharp, senior science information manager at Cancer Research UK, said: "As beta blockers are already a known drug this could be a very interesting development, which has the potential to save a large number of lives."


http://www.bbc.co.uk/news/health-15117324
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:31

11 Dec 2011


I haven't written in here for a while. I should really keep up to date with my "diary" here.

Just a short synopsis ...

That procedure went fine, nothing untoward was found.

I've since had an MRI Scan because of chronic pains in my lower back and pelvic area ... still ongoing. I am resorted to using a walking stick at the moment even around the house, and my trusty "Mister Grabbit" goes with me everywhere now - a long stick with sort of pincers on the end with squeezy controls in the handle. (It's actually the gadget that some Council workers use for picking up rubbish on the pavements etc). My Mister Grabbit is an absolute godsend these past few weeks. Great help with getting dressed, feeding the cat, etc.especially in the mornings which is the worse time for the pains when I wake up after lying in one position for a long time. The MRI Scan itself was a nightmare, where part of it meant lying on my back for 25 minutes, having to keep totally still (strap around my hips). It was very, very painful for those whole 25 mins and took me another 20 painful minutes trying to get down off the bed when it was finished - and then of course I had to get dressed (Mister Grabbit was in the car ... no help to me). The other 25 mins of the scan was okay because they were concentrating then on the upper part of my spine, so it was my head that was strapped in place there. The Scan itself actually exacerbated the pain and it has been a whole lot worse since that day. Won't get the results of that until the 20th (Dec) when I next see my Oncologist.
The scan was basically to rule out any spread of cancer, and I'm hoping that they will find that the trouble is caused by perhaps a trapped nerve or slipped disc or something like that.
I have already decided (in my own mind) that if something else cancer-related is discovered, then I will have no further option but to accept the chemo treatment - and if it comes to that I will definitely be giving up work. Hope it doesn't come to that, but all I can do at the moment is wait and see ...
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:34

11 Dec 2011

About a third of breast cancer patients stop taking medication because side-effects are more severe than they expect, US researchers suggest.

The Northwestern University team questioned 686 women who were taking aromatase inhibitors as treatment for oestrogen-sensitive breast cancer.

It found 36% stopped their medication because of symptoms such as joint pain, hot flushes, weight gain and nausea.

A UK charity said it was aware some women stopped their treatment early.

Aromatase inhibitors are given to postmenopausal breast cancer patients to reduce the level of oestrogen in those whose tumours were fuelled by the hormone.

About two-thirds of breast cancers are oestrogen-sensitive, and aromatase inhibitors have been shown to reduce the risk of cancer recurring.

Information gap

Patients in the Northwestern University study filled out a 46-question survey rating their quality of life and symptoms associated with breast cancer and treatment.

We are aware some patients in the UK do stop treatments early and the reasons behind this need further investigation”

Dr Susie Jennings,
Breakthrough Breast Cancer

They were asked about their symptoms before treatment and at three, six, 12 and 24 months after starting treatment.

After three months, a third of women had severe joint pain, 28% had hot flushes and 24% had decreased libido among a range of symptoms.

The longer women were being treated, the more reported side-effects.

Those at highest risk of stopping before the recommended five years were those still experiencing side-effects from chemo or radiotherapy.

As a result of the side effects, 10% of the women had stopped taking the drug within two years. A further 26% had stopped by four years.

The researchers say there is a big gap between what women tell their doctors about side-effects and what they actually experience.

Dr Lynne Wagner led the study, which is being presented to the Annual San Antonio Breast Cancer Symposium.

She said: "Clinicians consistently underestimate the side-effects associated with treatment.

"They give patients a drug they hope will help them, so they have a motivation to underrate the negative effects.

"Patients don't want to be complainers and don't want their doctor to discontinue treatment. So no-one knew how bad it really was for patients."

Dr Wagner added: "This is a wake-up call to physicians that says if your patient is feeling really beaten up by treatment, the risk of her quitting early is high.

"We need to be better at managing the symptoms of our patients to improve their quality of life."

Dr Susie Jennings, senior policy officer at Breakthrough Breast Cancer, said: "It is worrying if breast cancer patients are stopping lifesaving treatment early without consulting their doctor.

"We are aware some patients in the UK do stop treatments early and the reasons behind this need further investigation.

"The patient information leaflets do warn women of all the side effects, but it is important there is a continued discussion throughout treatment between patient and doctor.

"If any women are considering stopping treatment we would urge them to speak with their doctor."


Source: http://www.bbc.co.uk/news/health-16107978
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:35

22 Feb 2012


I've been following this thread on another forum (Boards.ie)

My wife's breast cancer ordeal

I so feel for this guy and his wife and can understand so well how therapeutic and important it is to have an outlet such as a blog or diary type thread on a forum to record and discuss what he is going through - and how important it is to get the input of others too who understand.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 21:39

30 Jun 2013

I've been following this thread on another forum (Boards.ie)

My wife's breast cancer ordeal

I so feel for this guy and his wife and can understand so well how therapeutic and important it is to have an outlet such as a blog or diary type thread on a forum to record and discuss what he is going through - and how important it is to get the input of others too who understand.

So pleased to read the latest relatively happy entries to this story - which I have been following from the beginning.


As to my own ongoing story, I have been continuing my diary in the form of a blog here: http://krazykats.forumotion.co.uk/t14-kitkat-s-kk-blog

Just like Johnnie in the linked story above, I find that writing it all down, including all the rollercoaster emotions and fears, is very therapeutic - as well as having all the details, dates etc ready to hand, especially when other specialists and departments become involved, because it makes things a whole lot easier for them (and yourself) to have exact dates and correct terminology to hand if and when the possibility of further future treatments crop up.
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Re: Here we go again

Post by Candlelight.kk on Sat 18 Nov 2017 - 10:39

I have just posted this on my personal blog over on Krazy Kats  https://krazykats.forumotion.co.uk/t14p350-kitkat-s-kk-blog#8389
and thought it rather appropriate to post up in here also:


The hospital phoned yesterday evening to tell me my results appointment (Tues, 21st Nov) has now been moved forward to Monday, 20th.  Not only is it the first one of the week, but also the first one of the day.  Been told my appointment is at 8:45 - the Department doors & Reception don't even open till 9:00.     .

So, not sure whether this is a good sign or a bad one ...  e.g. Have they pushed me to the fore because there is bad news, which needs urgent follow-up attention(?); or Do they put the "good news" appointments first because they are over and done with quickly, not having to talk with other docs, have further tests done, or go through necessary further treatment arrangements, etc.  The nurse who phoned me was one I had spoken with at length at my pre-assessment appointment.  She did apologise, more than once, for the short notice - and said that I am first on the list so won't have to be hanging around waiting.

Ever the optimist, I've chosen to go with the latter. 
I also have a "feeling" that all is going to turn out well.
Have to mention at this point an incident that happened one day last week (can't remember which day it was now).
My friend was over and we were in the kitchen nattering, when we both heard a voice which seemed to be coming from the sitting room. (No-one else in the house at the time). Went in to investigate - and found that the TV had turned itself on!  (has happened before on a number of occasions, but never when anyone else was around to witness it).  Not only had it turned itself on - but the programme that was showing was 'Medium' (fact-based TV series based around real-life medium, Alison Dubois) - and the scene that was showing was about someone called Cathy - who was visiting someone in hospital, standing by their bed and saying "You are going to get better, you're over the worst and will be out of here soon".
We obviously continued to watch the programme   and the person did indeed get better and was as right as rain not long afterwards.  Other similar "things" happened well into the rest of that evening - and my friend even joked at one stage about 'getting outa here and going home!'  ... at the same time acknowledging that she was quite fascinated to actually witness some of these 'happenings' (which I had of course spoken about in the past).
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Re: Here we go again

Post by Misty on Sun 19 Nov 2017 - 11:00

Thinking of you tomorrow Candlelight.kk happyheart   and wishing you love and luck for a positive outcome.

candle

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Re: Here we go again

Post by mac on Mon 20 Nov 2017 - 4:14

Candlelight.kk wrote:I have just posted this on my personal blog over on Krazy Kats  https://krazykats.forumotion.co.uk/t14p350-kitkat-s-kk-blog#8389
and thought it rather appropriate to post up in here also:


The hospital phoned yesterday evening to tell me my results appointment (Tues, 21st Nov) has now been moved forward to Monday, 20th.  Not only is it the first one of the week, but also the first one of the day.  Been told my appointment is at 8:45 - the Department doors & Reception don't even open till 9:00.     .
.............happenings' (which I had of course spoken about in the past).
I hope the 'happening' was a good sign and that you're starting to heal and recover your strength.
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Re: Here we go again

Post by Candlelight.kk on Mon 20 Nov 2017 - 15:33

mac wrote:
Candlelight.kk wrote:I have just posted this on my personal blog over on Krazy Kats  https://krazykats.forumotion.co.uk/t14p350-kitkat-s-kk-blog#8389
and thought it rather appropriate to post up in here also:


The hospital phoned yesterday evening to tell me my results appointment (Tues, 21st Nov) has now been moved forward to Monday, 20th.  Not only is it the first one of the week, but also the first one of the day.  Been told my appointment is at 8:45 - the Department doors & Reception don't even open till 9:00.     .
.............happenings' (which I had of course spoken about in the past).
I hope the 'happening' was a good sign and that you're starting to heal and recover your strength.

Thanks, mac. thanks
I have just posted the following on my KK blog:

So much for being the first to be seen this morning.  11:45 I eventually got seen by the consultant - and it was well worth the wait.  He said he loves doing these type of consultations - when it is good news he's delivering.  In short:  All is well.  No need for Macmillan nurse, and no follow-up needed.

All the baddies were got rid of   and, 'most importantly', were caught and dealt with in good time.  There is no maverick travelling anywhere outside of the mapped route and everything is now healing up just as it should.
I got my discharge papers today.     banana

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Re: Here we go again

Post by mac on Mon 20 Nov 2017 - 21:00

Candlelight.kk wrote:
mac wrote:
Candlelight.kk wrote:I have just posted this on my personal blog over on Krazy Kats  https://krazykats.forumotion.co.uk/t14p350-kitkat-s-kk-blog#8389
and thought it rather appropriate to post up in here also:


The hospital phoned yesterday evening to tell me my results appointment (Tues, 21st Nov) has now been moved forward to Monday, 20th.  Not only is it the first one of the week, but also the first one of the day.  Been told my appointment is at 8:45 - the Department doors & Reception don't even open till 9:00.     .
.............happenings' (which I had of course spoken about in the past).
I hope the 'happening' was a good sign and that you're starting to heal and recover your strength.

Thanks, mac. thanks
I have just posted the following on my KK blog:

So much for being the first to be seen this morning.  11:45 I eventually got seen by the consultant - and it was well worth the wait.  He said he loves doing these type of consultations - when it is good news he's delivering.  In short:  All is well.  No need for Macmillan nurse, and no follow-up needed.

All the baddies were got rid of   and, 'most importantly', were caught and dealt with in good time.  There is no maverick travelling anywhere outside of the mapped route and everything is now healing up just as it should.
I got my discharge papers today.     banana
great news!  sunny

    Current date/time is Wed 13 Dec 2017 - 5:22