Please help us

Hi, sorry to bother you all but I didn't know where else to turn. My mum (49) was diagnosed in January this year with secondary breast cancer in her bones (skull, hips, ribs, spine, pevlis, shoulder) since being breast cancer free for the last 9 years. This came as a huge shock to our family (me being the youngest - 20, my older sister 22, and my dad). My mum is currently on a trial called Manta which has been keeping her stable since January which is fantastic. The treatment involves her having the baseline denosumab and faslodex injections, however she is also on some other tablets which she takes every Friday and Saturday in the morning and evening. On the days that my mum takes these tablets I cannot stop her crying all day long - yesterday it was from 6am in the morning and when I returned from work at 4pm she hadn't stopped all day and continued through the night. She tells us that it isn't the tablets that she can't handle she just gets herself in to a really dark space and cannot come out of it during those days. She constantly apologises for 'ruining our lives' which couldn't be further from the truth - she is the best thing in all our lives. She is considering coming off the treatment which obviously from a selfish point of view none of us wan't as it is currently working at the moment and we will eventually run out of treatment options. During Sunday - Thursday we have some really great 'normal' days and I was just writing here to see if any of you had any coping mechanisms or anything you could suggest we try on the Friday and Saturday as seeing my best friend sob her heart out constantly all day without pausing is emotionally draining. We can't go on like this, please help us.

  • Hi Samantha,

    Sorry to read about your mother. I am just wondering if the tablets she is on are hormone therapy tablets. If so, This could account for her crying. I know from experiance that men who are given hormone injections for prostate cancer have these mood swings and can often break out in tears at the slightest thing. Also women suffer the same with horone thereapy for beast cancer. I know of a guy who had this problem but hadnt been told  it was a side effect of the hormone therapy until I told him. He used to get quite low emotionally and was often crying for no reason and he thought he was close to having a nervouse breakdown. He was so relieved when I told him it was all down to the hormone.

    If it is the case and she doesnt realize what the cause is, just explaining it may well help. Hope this may help. Sending best wishe to you and your family, Brian.

  • Hi ​Samantha. Firstly you are not a bother that's what this forum is for. Sorry for your situation it must be a difficult time for you all. The only thing I can suggest is to get your Mum to contact her Doctor or support team and discuss this. It seems to much of a coincidence to me but I am not medically trained. You could phone the nurses on here on Monday - they are really helpful. Do the tablets come with a leaflet listing the side effects? As this could be on the list. Best wishes river.

  • Hi, Samantha, if your mum is taking hormone pills then you do need to read the leaflet.  There are numerous side effects, although you may get none, or some.  I am taking Letrozole and one of the side effects is a voracious appetite.  I am sitting here with a bowl of food that I am not even keen on but I need to eat!  I cant control it but wont stop the medication as it is working.

    I do agree with Brian and River, talk to your medical team.  I do hope you can help your mum.

  •  

    Hey Samantha your mums story sounds exact same as mine with the cancer..it is hard but you will get there..set her something to focus on..mum&myself are organising a girls night in,in October to raise money for cancer..we done it last year&praised 500&she enjoyed so she's planning it again texting her friends etc..

    Haven't been on this on long time, but it amazing how many same stories are out there. I'm 29&only girl so I see&ankle all that goes on with my mum..I do be strong in front her which is hard but she does talk and of recent has started opening up more from being diagnosed with cancer to bowel now also...going by her motto..one day at a time if not hour

    Take care hear from you sn.xx

     

  • Hi Brian

    Thank you for taking the time to reply to me I really appreciate it.

    It is a hormone therapy mum is on so maybe this explains it. Do you know any ways of coping with this kind of treatment and the emotional side effects? 

    TThanks

  • Hi River

    Thanks for your response. 

    I've tried to encourage mum to speak to the doctor but she is so scared that they will take her off the trial. Mum is part of a support group so she does speak about things there but I'm not sure she admits how bad it actually is.

    We just need something, anything to try and make her treatment days more manageable. 

    Thank you again

  • Hi, so sorry to hear about your story too.

    We have lots of things to focus on during her good days such as planning my sister's wedding and my 21st birthday but on her treatment days these are the things that make her even worse.  I can't get her out of bed to even do anything it's so horrible. 

    I just want to be able to help her.

    TThank you for your words and I hope you are okay xx

  • Hi Samantha o​ne thing I used to do was make a daily record of how I was feeling. It was useful as I soon got to recognize the cycle of side effects and could anticipate them. I did not do it everyday and had to catch up after the bad days. It did show me that I had regular mood swings at certain points in the treatment cycle, although I could not stop them (they were not as bad as your mums) I did feel better knowing that they were due to the treatment and would pass. She could speak to people in her support group to find out if they are the same and what do they do to cope without revealing how bad she is. If she is in a trial she does need to let them know as part of the trial and they may have suggestions. It must be very stressful for you all you can do is keep looking forward. River

  • Hi Samantha,

    There is something the doctors can prescribe if she has the hot flushes but I am not aware of anything to curb the emotional side effects. I was able to cope with the hot flushes and indeed eneded up making it into a contest with my wife which I won comfortably ha ha . It was the emotional side effects that caused me the most embarassment. There is a song that says, "Grown men dont cry" so I used to try and hide it from my wife by pretending to yawn as it often brings tears to my eyes. The truth is, she probably knew but didnt say anything to try and spare me any embarassment. I would just ask your mothers GP for he may be able to prescribe something to ease the problem or alternativly, speak to the nurses on here as they are very knowlegable and helpful. Hope this helps.

    Best wishes to you and your mother, Brian.