My mum began with bowel cancer and it had spread to liver and lung. She had palliative radiotherapy for the bowel which went went. She began the palliative chemo and is in the process of having 12 treatments. Her Oncologist rang her and told her that she would be having another 12 weeks of chemo, which will finish approx August.
Mum who is 90 in July doesn't ask questions, she just accepts what she is told. This leaves my brother, sister and myself none the wiser to what is going on. Mum has had no scans during this first programme of chemo to see if the liver/lung tumours have got smaller, bigger or stable. So, now we are wondering why another 12 weeks have been prescribed?
We don't know what actual chemo she is been given either. I rang Mum's McMillian nurse to talk to her, but the nurse had to get permission from mum before she could talk to me. This went down like a lead balloon with mum. Now at the moment, the Macmillan nurses have changed and they are based at the hospital where chemotherapy is given. I know I could call them, but it upsets mum so much when the nurses ring her to ask for permission, that I am dubious about calling them to find out more. I feel as though I am floating in a cloud of worry and not knowing makes things worse.
Can anyone tell me in their experience as to why another 12 week programme has been described please, and any other advice would be really welcome. Thank you.
Hi Rubyshoo
Welcome to the forum . I have to say your mum must be made of strong stuff and that’s quite incredible to hear she is tolerating chemo for twelve rounds and able to do another twelve !
Normally people are scanned after 12 cycles to see what effect the treatment is having . They keep a close eye on her tumour markers called CEA . If they see that has come down and she is doing well they may be considering this as maintenance chemo . Where they give a more tolerable dose over a longer period of time . If they feel all is going well and it’s very reasonable to use this for the long haul . In a stage 4 setting this is often used !
To be very honest seeing how chemo affected my mum it sounds as though they have found a tolerable dose for her and assessing her as they go along ! Chemo was very tough for my mum ! So if it works they may just want to continue. Do you know if it’s tablet form of chemo or does she go into hospital for an infusion?
Well done your mum though it’s quite remarkable .
Its very tough in a way with confidentiality and it is strictly a relationship between doctor and patient if that’s your mum’s wishes . However you might be able to put some pieces together here by seeing what others are doing .
https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/capecitabine
https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/oxaliplatin
I have included some information on some of the chemo used in the treatment of bowel cancer and it might give you some clues .
We also have a helpline 0808 808 0000 and they would be able to guide you a bit on how to support your mum whilst working within the boundaries she has set ,
I used to love working with that generation in many ways as an OT as they were so resilient and determined but I totally get the other side when you are trying to assist and they would prefer not to deal with it !
It does leave you with lots of questions and little answers .
Take care ,
Court
Helpline Number 0808 808 0000
Thank you Court, this has helped a lot in the understanding of why mum may be having the next course of another 12 sessions of chemo. From what I have read she is having oxaliplatin once a week.
Mum is of the era where you don't ask questions, but you go with what you are told. I think she feels awkward asking for more information. She is a strong little lady and has coped so well so far. The effects of the chemo are now beginning to make a mark on her ie: sickness, tiredness and itching.
I am waiting today for a call from a nurse who I spoke to before, and with some upset, mum gave her permission for me to speak to. This was late last year, so I'm hoping the nurse will be able to give a bit more information.
I personally don't think she will be able to cope with another full 12 sessions, but time will tell. She is weaker and finding herself dropping off to sleep, which is good, quite often.
Thank you again Court. x
So glad you got permission to speak . Your mum is made of steal to endure that as my mum only could take six in one sitting !
The other aspect of being able communicate directly with her team is adding more information on how you think she is tolerating it . It might give them more information to assist them when making decisions regarding her handling the current regime.
Hope you get some information.
Court
Helpline Number 0808 808 0000
Dear Court
I am really quite angry and upset with the attitude of the Macmillan nurses to be honest, I really did think I would get somewhere, but all they said to me was that mum would of been told why she was having the extra sessions, I told them that she might of been told, but wouldn't understand perhaps, especially because her Oncologist is foreign, and she does have big problems understanding, as she is hard of hearing too. The nurses reply was, 'No, we can't tell you anyway'. I thought Macmillan Nurses were there to support the whole family with any worries, upsets and concerns. Now I feel that I am nuisance and unable to call them again.
Don't know where to go from here.
Rubyshoo
Good evening, how sad that you are not kept in the picture.if your mother has given permission - if I were you I would visit the unit personally and demand to see someone senior. It is your mother and it sounds like you need to fight for her.
good luck - you and your mum deserve answers.
paula
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