General Chat

I haven't been on this thread for ages as we have been moving house!! The whole experience was very stressful, not helped by an unpleasant neighbour whose venom we had endured for 2 1/2 years. The relief to get away from them is immense. OH has been transfered from his former hospital to one closer to where we now live, his next appointment is in January. The last PSA test in July) was undetectable, so we are still very positive for a long term good result. Incontinence has improved a lot, impotence, not so good, but we are both in our late 60's early 70's, and have been together for 50 years, so we are able to take it pretty much in our stride!!! Annie, I'm so sorry to hear of your difficulties. Like the others I feel you perhaps need to chat to your GP, although it's easier said than done especially when you are feeling down and in pain. This bloody disease is such a bummer, it really makes me so angry it's so cruel and heartless.

Elaine

I have no knowledge of that drug. Have you tried googling it, ot see if there is anyhting on-line about its side effets?


I can only say how sorry I am about the situation you find yourself in.
xxxx



sylvia
xxx

I haven't posted on here since the very early days, and on Ladylol's first thread.


I had breast cancer in 1995, had a mastectomy and no further treatment. But I had to go for a mammogram every year.

This May, they saw something that they thought was 95-98% benign but wanted to check it out.

5 more mammograms and a core biopsy later, I got the news on August 10 that there were a few cancer cells showing

As I understand it from the surgeon ....... what they saw in May was seemingly benign, the cancer cells were a suprise.

I had Invasive Lobular Cancer ......... the one 16 years ago was Ductal In-situ ........... so 2 different ones. The cancer was in the very early stages, so small that it had not been seen on 2 mammograms in May and 5 in June ................... unfortunately the cells had already got into the breast tissue.


I immediately opted to have another mastectomy, which I had on September 20.

I was released the next morning, and OH has been caring for me. He's getting pretty good at sponge baths in the areas I cannot reach! I should have the staples removed tomorrow, and hopefully the drain will also be removed so that I can then have a shower on Sunday!

If all goes as hoped, I will not need any further treatment, not even Tamoxifen (this cancer was hormone positive).


Now I can get on with the rest of my life, albeit flat-chested!




sylvia

P{lease does anyone know if there are any aggressive , I mean agression effects to cyproterone acetate. My husband has prostrate cancer and although he has always been aggresive toward me he seems to be worse since he went on these tablets, in fact I am becoming very frightened of his outbursts. We have been married for 53 years and now he says he is going to sell the house,take my keys etc he shouts and threatens me inumerable times a day in fact every time I come in. I either retreat to my bedroom or come into my computer room just to keep away from him. Elaine. :-S

Just to add that the September PSA blood test result was also undetectable.

The incontinence problem has resolved itself, so just the impotence one to get to grips with.

It would be worth Lizlynes's OH seing if there is a support group attached to the hospital, we have a brilliant one that meets each month where we can share experiences, help those having to decide what treatment to go for and will be getting speakers on various topics.

If there isn't one then see if one can be set up !

Hi Annie. So sorry to hear you are in pain. I agree with Florence and think you should go back to your doctor, you cant possibly wait for 3 months, it needs sorting out now. The pain will take it out of you and get you down.
Take care
Sylvia.xx

hi annie, really sorry to hear your tablets have not done their job and you are suffering. surely the doctor would stop them immediately. if after 3 months, your levels have gone up, then surely he must realise they are not doing any good.

can you demand to stop them and return to your old pills and some strong painkillers. you say you had morphine, was this liquid on prescription?

what is causing the pain in your bones?

when you are asleep, although you are not awake, it sounds like you are not getting a deep quality sleep, but probably doze on and off during the night.

i dont sleep very well myself, only 4 hours at a time. but recently stopped drinking anything after 9pm and reading just before i go to bed. this makes me feel sleepy and i seem to then not get up for the bathroom and manage 5/6 hours.

probably its the constant pain thats prevents you from getting a good nights sleep but cant think what else to suggest to help you.

your doctor though i think is wrong in keeping you on these pills for another 3 months.can you challenge his decision?

i think you need to see him again and explain your worries and the severe pain and see if something else can be done now,not in three months.

i wish you well. let us know how you get on.

take care
florencexx

Hi everyone,

Sorry I haven't been on here for ages.

I went to hospital yesterday for my regular 3 monthly check up. Some not so good news, my leukaemia levels have gone up. I have been on new pills (Dasatanib) for only 3 months so the doctor wants to continue for another 3 months before he reviews whether or now we need to change back to the old pills (imatanib).

I felt really angry at the appointment because the doctor told me at my last visit that these new pills would drop the levels to undetectable and they haven't its increased. I feel really let down.

The main reason for switching to the new pills also was to alleviate the severe bone pain I suffered from. This also hasn't worked and I actually get more bone pain now that I ever have and sometimes its really bad. It was so bad the other day that codeine wouldn't work and I had to take some morphine. As I write this now I have the pain really bad in my arms and hands.

I am so so tired. Feel like I haven't slept in weeks when I know I get sleep every night.

Hope you guys are all well

Love

Annie

hello everyone, hope all is well. have been on 2 week holidays with lots of visitors coming to visit,hence havent been on here much.

thanks for the recent positive stories from brian and lizlynes, its good to see some new faces with good news.

my daughter is full of life and now has reached my height 5 ft 4. she never stops and has so much energy i struggle at times to keep up.
not wanting to boast about my son, but he just got his exams results and passed 8 standard grades with a A in Biology. so naturally we are extremely proud of him as i guess many other parents are at this time.

we have another 2 weeks before back to school, but it will be good to get back to a routine after 6 weeks. fantastic weather up here for the last 2 weeks, never known such a good spell.long may it last.

enjoy the rest of the summer peeps

florence
in the hebrides :-) :-)

I too would like to add a positive note. My OH was diagnosed with Prostate Cancer last November; He had his prostate removed in Jan 2011, and has made a full recovery. Like you Brian he has impotence problems and is not 100% continent, although we are getting there. Last PSA test showed negligible levels, next one due in 1 months time. I would like to add that if any one even suspects that all is not well on the Prostate front, to get it checked out IMMEDIATELY could be the difference between life and death. Am off now to nag my son!!!!

how is everyone xx

Wondering how everyon is big hugs love and hope xxxxx

Thanks for adding your story brian hope you well thanks for sharing xxx

It's the first time I have noticed this thread so thought I'd add a positive thought.

I was diagnosed with prostate cancer at the end of 2009 and had radical surgery in April 2010.

Subsequent PSA tests have shown negligible levels, next one due in September.

Apart from a bit of an impotence problem, so far as I can judge I am "cured".

So I hope that gives encouragement to those still going through the mill.

yes i couldnt find it for a while, its lovely to see some good news, they will operate if it twists , as last time when the went in it just ruptured anyway, i had a lot of pain from a 5 cm that hurt , cant believe its nearly a year since my dad died, and im so glad having this thread has helped me so much and others.
Sometimes when i see mum missing dad i feel i have to hold back, i am shocked at how much i miss him as we only became close in the last 3 years of his life but im so pleased to say i have a wonderfull relation ship with my mum, we are like best mates now, reading threough dads notes has hurt as there was clear negligence in 1993 where a skin biopsy showing cancer was never fololwed up, then in 2005ish a verruca showed carcinoma insitu which is very invasive, so some experts are going through everything now.

Iwish you all so much love and luck and im now able to spend more time on here as we are not fostering atm, so feel free to pm xxxx

hello everyone,glad all seems well with you.

annie, that is fantastic news. i am delighted for you and you must be feeling soooo good. its a great feeling when you get clear results. hope the new medication will suit ok.

lorraine, glad its just a cyst. will they operate and get rid of for you? is it causing any pain? how did the wheelcare walk go, did you have a nice day for it? how is life for you in general ok i hope?

sylvia, really glad that you are well and doing ok. congratulations on your daughter getting married. im sure you all had a wonderful day. hope the sun shined for you all.

we are on school holidays now yipee.after which i will start a new job full time in a local school. still as a special needs auxillary but for the last 2 1/2 years i was in a nursery with 3-5 yr olds. this will be primary and secondary 1 AND 2. I am really looking forward to going back to older children. its more of a challenge. i am also going to college in aug to do my HNCin ealy years and childcare over 2 yrs so all change for me.

in the meantime i wish you all happy holidays whatever you do and hope you all keep healthy.
florence
in the hebrides :-) :-)

Like Jean said it is good to see the thread again. I have not been on here for quite a long time. I am also doing well. Just been on Hols and my daughter was married while we were there it was lovely. Hope to hear lots more of the good news on here from all you
lovely people. <3

Good to see this thread again. I am happy for those who have had good news. Keep on smiling, girls.

really really pleased annie well done :-D so happy for you
i also have some good news the cyst on my ovarie is a simple cyst 4cm big, and endometreosis so im happy with that could have been a lot worse xx :-S

Hello everyone,

Well finally I have a little bit of good news to share with you all. I had my clinic appt at the hospital on thursday just passed and he has advised me that my leukaemia levels have dropped to 0.002 and are almost undetectable on their testing. Yahooooo! Getting there slowly but surely.

I am being switched from taking Glivec (imatanib) and will now be on Dasatanib. Get my first delivery of the new pills tomorrow but have about a weeks supply left of the old pills to take before starting on the new ones.

Hope everyone is well.

Love Annie
xxxxxxxxx