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.

Parents
  • 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 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 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

Reply
  • 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

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