Hello all, thank you for your replies re help with my side affects of Azacitidine for my Chronic myelomonocytic leukaemia ('CMML') with CBL gene.
I am considering stopping my chemotherapy now due to all the side affects. Its 2 weeks since my 5 day injections and I am still feeling rubbish and now have an infection needing antibiotics due to swollen lymph nodes bit of a temperature and feeling rubbish. Its only just over a week before I start my 5th round of Azacitidine…
Is it just me being a wimp? I dont know how anyone else is dealing with this so unsure what to do. I have very minor improvements re my symtoms.
I am very anxious about telling my consultants that I may want to stop as I don’t like confrontation. Very stressful times.
Thank you so much for taking time to reach out and seek support via our forum
My heart goes out to you as you clearly seem to be finding things difficult
I can’t relate to your circumstance myself as i am not currently receiving treatment (I am on active monitoring). Please don’t feel like you are being a wimp, everyone’s experience is their own and we handle things in our own way. Also, I’m sure that your consultants will understand your concerns and again will be able to help you with this.
What I can say with confidence is that your medical experts will know what the best course of action is, and I encourage you to follow their guidance. That having been said, we have our @BloodCancerUK_Nurses who are able to fully understand the treatments you are receiving and will be able to discus this in detail should you prefer.
Please always remember you can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
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Take good care and do feel free to reach out at and time
Thank you for your kind words, I have a great relationship with my consultant but she feels strongly that I need this treatment and is not open to a discussion about it. I come away feeling like a 5 yr old.
Her reasoning is without this my outlook is very poor. I want quality of life not quantity.
I have an appointment shortly and will try once again to explain how I feel. My family understand how I feel and are in support of my decission. Fingers crossed that I have the courage on the day.
Oh @Bonny16 I’m sorry to hear this, that must have been an incredibly difficult decision to come to and very hard to discuss with your family. My heart goes out to you. That should have been the hardest part.
In terms of the consultant- I would start by writing down the points you want to get across. As emotive a conversation as this is likely to be - try and remain calm, and if you find yourself getting flustered, state your need to read your thoughts out, that way you won’t forget any important points. You cannot let 10 minutes of difficult conversation put you off what you believe (and your family have discussed) is best for you.
Remember it’s not the consultant’s body going through it all. They can advise but it is not their decision ultimately.
Hi @Bonny16 what a brave decision to make and with family support
Under section 4 of the nhs constitution the patient will be at the heart of everything
“It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers”
May I suggest you write a letter to your consultant and take it with you to your next consultation and ask them to read it before you continue.
Take someone you trust with you so they can support you with your decision
Hi @Bonny16 I definitely do not think you are a wimp. I would feel just like you. I also really hate ‘difficult’ conversations.
I really find writing down what I want to say and why helps me, it shows that it is not a decision that I have taken lightly. You might also like, as others have said, to talk your thoughts and reasons through with the Blood Cancer UK support nurses on 0808 2080 888, use them as a sounding board
You might feel you would like to take a family member or friend with you to your next appointment. There are a couple of tricks that I have learnt from my forum family on here. Firstly to wear my ‘big girl pants’. Then to be pleasantly assertive. Then to imagine that you have all your forum family there with you engulfing you in forum support.
Perhaps remember the decision is yours at the end of the day and don’t leave the consulting room till you feel ready to.
We are here to support you whatever you decide and be ever so kind to yourself, keep us posted please.
I wanted to let you know I brought your post to our Support Services team meeting this morning, and our nurses would really like the chance to talk this through with you directly and offer their support and advice, if you’re happy to do so - whichever’s easier, by free phone (0808 2080 888, option 1) or by email (support@bloodcancer.org.uk).
You’ve also had some really thoughtful support from others here - the suggestions about writing your points down beforehand, taking someone with you, and remembering that the decision is ultimately yours are right things to do when going into your appointment.
Sending you strength for your appointment, please do let us know how it goes.
I really feel for you having to make such a significant decision about stopping treatment but being worried about the confrontation with your consultant. Definitely not a wimp. We are all different but I have already decided that if my Chronic myelomonocytic leukaemia ('CMML') should progress to Acute myeloid leukaemia ('AML'), I would not put myself through chemo, given the low chance of it working.
As has been pointed out by others, it is entirely your prerogative to decide that you don’t want to continue treatment when it is making your quality of life so poor.
Not that all clinicians follow this NHS model (BRAN) but when it comes to treatments, patients and their clinicians should always discuss:
Benefits of treatment (have you been given data about the likelihood of this treatment working and how long any benefit would last ?Is it a cure or just delaying the inevitable?)
Risks of treatment eg side effects
Alternatives to this treatment eg other treatments or palliative care which just aims to keep your quality of life good and not use any unnecessary medication
Nothing. What if I do nothing?
Let us know how it goes. You’ve got a lot of people behind you.
So sorry to hear about this very tough decision you are facing @Bonny16. I have had family members with other very serious illnesses who have faced this type of choice. I hope that your doctors and other healthcare providers can help you come to a realistic understanding of the likely benefits of continued treatment, the likely continued side effects with treatment, and a timeline for how long treatment would be necessary. For example my mother decided not to receive chemotherapy for stage 4 lung cancer after such an honest discussion with her oncologist. The likely improvement in longevity was short, especially at her age, and the likely side effects were harsh. She died at my sister’s home under hospice care and with a few months with a good quality of life. Other family members with different conditions learned that if they could hang in through a short but rough period of treatment, they had a good chance of gaining years of survival with good quality of life. One colleague went through tough treatment but then lived several years able to do things that were important to him. We were able to enjoy going to baseball games together where he enjoyed two hot dogs every game!
Key is that your doctors and other care providers should strive to give you a balanced perspective, not just try to convince you to receive a treatment without understanding the costs and benefits. Maybe the nurses through this site could give you some perspective on this.
Best wishes, and know that this is not about a choice between being a “wimp” and “fighting”–it is about making a decision based on a thorough understanding of the facts, and consideration of what matters to you.
