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BBCNews 24

17 REPLIES 17
Guest user
Not applicable

Re: BBCNews 24

Agree Hi David

Thanks for that. It made me smile and I can agree with all you say! ! I was at the oncologist the other day ans she told me I was just getting old and there I was feeling like a youngster. In my head I\'m still 16 and my not so old body (51 last week) seems to be full of aches and pains and my Brad Pitt style physique has now disappeared for ever. Karen\'s laughing as I\'m typing this.

Anyway, seriously, the gender physiological differences must mean that the pills have different, yet similar, effects on men and women. The absence of libido has been been an abiding effect on me.

After a painful time yet again with a kidney stone (it seemed like a rock at the time) I was back again at the urologist yesterday, more xrays and bloods, and this time I had the proof for him to get analysed!!

It seems that I might have too much urea/uric acid in my blood and this may be causing the stones to come so quickly. That too may be causing the aches and pains in my shoulders and foot. So, they have sent me to an orthopod and I will make an appoinment next week for that!! Never ending saga continues.

Despite me earlier decision to stop ARIMIDEX early, I have become a coward and will take it for the time they give me it. Next month also I go for a Dexa Scan to see if my bones have deteriorated again. The only good thing about that is that one of my ladies (BCC volunteer work) has an appointment the same day and I will take her to the hospital as well. She\'s buying lunch for me because I\'m such a wonderful person!!

Speak soon.

Bill

BrigDave
Member

Re: BBCNews 24

Drugs For the female form I too have been distorted by the drugs, tried and tested on the female form.

I no longer have a nice neat figure
I have to buy new clothes every 1 or 2 months
I can no longer make love to my wife fully
I feel 14 months pregnant most days

It took me nearly 18 months to get the experts to agree with me that it was all down to the Tamoxifen.

When are they going to wake up and realise that the male and female bodies are different and what works for one doesnt mean it will work for the other.
Look at it this way - 2 cars one a MINI and one a FERRARI - both require components, but the require different components to run smoothly.

think about it

David W

Guest user
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Re: BBCNews 24

David S Hi David S

I absolutely agree. I feel I am already distorted by these pills!!!

Take care

Bill

Mitch
Member

Re: BBCNews 24

Drugs affecting men They say that the reason they do not include any results of tests on men in their research is because men are in a minority, and it would distort the final results for women.
Makes you think of what it must be doing to us, using untested drugs on people who would \"distort\" the accepted result.
Surely if we can distort the results so much, it would be important to research the drugs on men first before treating us.

David S

Guest user
Not applicable

Re: BBCNews 24

Well done Kaz - echoing David\'s words Hi Kaz

We few men on this site are not slow at coming forward and I saw your husband - and you - on the television. It is, as David said a long hard mission we are on not just to make BC in men more public but to make all the people aware than men and women can get it. It\'s not a different disease that men get, just the same.

I do hope your husband gets on well and well done for even getting to the TV. I was almost there but they thought a feature about poodles or something was more important!

Take care and keep posting here. tell your husband to get on and talk with us.

Best wishes

Bill

BrigDave
Member

Re: BBCNews 24

Good Luck to Wife with a Mission Well done Kaz for fighting for your Husband - and good luck.

We are only a few who bother to use the forums - but you have our support and any help we can give you - all you need to do is ask.

I hope you get the so called wonder drug - remember - the media dont seem bothered with Men who develope BC - we are so few - this site (Breast Cancer Care) is the only one who support MEN fully. Check out the others - I have been promised by Cancer Research UK that they are going to run a feature on me - but nothing yet....

You can read my story on this site and feel free to contact, should you need to.

Good Luck to you both

David W

Moderator
Community Manager

Re: BBCNews 24

FROM A WIFE WITH A MISSION I have moved your post so it will be seen more easily.
Kind regards
BCC Moderator

-FROM A WIFE WITH A MISSION!
posted on 7.02.06 5:48 pm
KAZCABBAGE

---MY HUSBAND WAS ON TV RECENTLY WITH BC.I HAVE MADE IT MY MISSION TO CHANGE THIS \'TABOO\' SUBJECT INTO AN OPEN AWARENESS CAMPAIGN.I HAVE PUT FORWARD AN IDEA TO HAVE A BLUE STRIPE PUT ONTO THE \'PINK\' RIBBONS SO ALL YOU LOVELY MEN CAN FEEL PART OF THE CAMPAIGNS TOO.
WE WERE VERY DISAPPOINTED AT THE LACK OF INFO FOR MEN RECEIVED WHEN HUBBY WAS DIAGNOSED., ALTHOUGH ALL THE STAFF WE HAVE ENCOUNTERED HAVE BEEN FANTASTIC AND VERY SUPPORTIVE.WE ARE CURRENTLY FIGHTING FOR HERCEPTIN.
I TRIED EVERYWHERE TO GET COVERAGE ON THIS SUBJECT AND ONE MAGAZINE WILL RUN THE STORY, IT NEEDS TO BE OUT THERE SO MEN CAN NOT \'ESCAPE\' IT!
HUBBY NOW, LIKE SOME OF YOU, WHIPS UP HIS SHIRT AT ANY GIVEN MOMENT TO SHOW OFF HIS BEAUTIFUL SCAR. THIS MAKES PEOPLE AWARE AND THE VISUAL IMPACT WILL MAKE THEM NEVER FORGET MEN ARE AT RISK TOO.
I AM VERY PROUD OF HIM.AS YOU KNOW IT IS A VERY HARD SITUATION TO DEAL WITH, BUT GOOD MUST COME FROM ANY NEGATIVE EXPERIANCE AND MAKING OTHERS AWARE MAY SAVE ANOTHER LIFE,AND THAT\'S MY MISSION.

Guest user
Not applicable

Re: BBCNews 24

BC Drugs and men Hi David

Thanks for undertaking that work for us. It\'s not unreasonable to say think that that was always going to be the answer from the companies.

While the disease is the same the drugs developed for a physiologically different sex must have surprising and unexpected side effects!

I reckon that there will never be a time when the trials of new drugs will ever include men and women. It\'s death and glory stuff out there in the drug companies and death and glory stuff makes profits.

Take care all.

Best wishes

Bill

BrigDave
Member

Re: BBCNews 24

BC drugs and Men When I was at the 2005 conf - I had the opportunity to speak with Drug companies as 1 or 2 were represented.
I approached each in turn - not one had details for me - but the asked me to fill in a Question Form - they would go back to the drug company - where an answer would be posted to me.
It is now January 2006 - and yes you guessed it - still waiting for an answer from any.

I have contacted one company - re the side affects of Arimidex on Men - the reply was that not enough research had been done on men (if any) and in no circumstaces should Arimidex be prescribed.

Tamoxifen (dont know)
Herceptin - (dont know)

Are men involved in trials for Breast Cancer Drugs (dont know) - if anybody knows any different - feel free to let me know.

cheers David W

Guest user
Not applicable

Re: BBCNews 24

Agree Hi Brian

I agree. I don\'t think it would be viable for a drug company to do such a thing because of the low numbers. What might be more useful is a close look at the effects the drugs have on the men taking them.

Bill

BrianP
Member

Re: BBCNews 24

Clinical Trials on Men It was interesting to read that Dr Emma Pennery of BCC admitted that there had been no clinical trials of Herceptin on men. Quote from the BBC article:

\'However, Dr Emma Pennery from Breast Cancer Care said there were concerns about Herceptin\'s general availability, and even more so for men.

\"I think it\'s likely to be problematic because there isn\'t equal access for women already across the UK and the difficulty is we don\'t fully understand its usage in men.

\"All the clinical trials to date have been on women,\" said Dr Pennery.\'

I wonder how much that is true for all the other drugs that are prescribed to men?

Guest user
Not applicable

Re: BBCNews 24

Oh uh, it\'s AXA PPP AXA PPP has been really bad on this one and aren\'t funding women, either. At least in Britain. They fund herceptin for early breast cancer in France, though.

Guest user
Not applicable

Re: BBCNews 24

That is really rare Over on the her2support website, which is quite big and has been around for a few years, there is a fellow with her2+++ breast cancer from Tennessee who recently posted and apparently he\'s the first male breast cancer patient they have had! He did get herceptin.

I hope that the fellow who is trying to get herceptin on the NHS does visit here. 37 is so young for this.

I can\'t imagine that herceptin would work differently in men and women, since it is non-hormonal.

BrigDave
Member

Re: BBCNews 24

Herceptin again I read with interest the story - I wish the chap all the best - I am sure he will be given the drug - with all the media pressure at the moment.

Is the same chap - posting on here I ask myself!!!!!

David W

Guest user
Not applicable

Re: BBCNews 24

--- I didn\'t see it on TV, but on the BBC website. I think it can only be a good thing for the public to realise that men can get breast cancer and they face exactly the same problems as women in getting treatment.

Moderator
Community Manager

Re: BBCNews 24

web address of story Bill is referring to http://news.bbc.co.uk/1/hi/england/kent/4600182.stm is the page this story is on on the BBC news website if anyone else would like to check it out.

Kind regards

BCC Moderator

Guest user
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Re: BBCNews 24

BBCNews 24 Hi All

Last night I caught just a short peice about a man with BC on the news and his struggle to get herceptin. Did anyone else manage to watch it? It\'s one of the very few rare occasions I\'ve ever seen a man with BC on television.

Bill

Guest user
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BBCNews 24

BBCNews 24