Its that time again a week after Azacitidine, is anybody else on this chemotherapy?
I have had a few rounds of this now and find the side effects awful. I am deciding if I should keep persevering or stop.
My side effects are in no order, nausea, No appetite, Sore tummy,very sore mouth. My only benefit is not so many sweats,no itching. Other than that I still have my normal symptoms. I am given meds to help but thats more meds I don’t want to take. Its 1 week treatment, 2 weeks of side effects, leaving 1 week in 4 that I feel okish. My team think its the best treatment for me they are probably right but I am not coping. So is it me being a bit of a whimp? I don’t know. Hence just putting it out there.
I find Aloe Vera gel on the injection sites really helps. Once the redness starts to disappear I use vitamin E45 lotion until stomach is back to normal. Whilst on the injection week I also use a mouthwash twice a day. For the nausea can you ask for different anti sickness tablets - Ondansetron 8 mg twice a day are the ones I have been prescribed.
Hopefully you will find things that make this week more manageable.
I am sorry to read the side effects you are experiencing from your Azacitadine treatment.
Can I ask if you have let the nurses know about your side effects, are you having a full assessment prior to each cycle? There are certainly a few things that could help.
Nausea is a really common symptom with this treatment and anti-sickness medications are not a one size fits all, its possible that the team could make some changes to find one that works for you. (I understand that’s more medicine to take, but chemotherapy without anti-sickness would be very difficult, however they should be able to switch one out for another).
Loss of appetite is also not uncommon and even more so if you have a sore mouth. Are you using any preventative mouthwash? The hospital team can provide this. There are also lots of wonderful gels/washes available these days so do talk to the team about what they can organise for you. You can also ask to be referred to a dietician who can help with your appetite and intake. I have also added in here our pages on Eating well with blood cancer | Blood Cancer UK.
You have already had some great tips given on here around your sore tummy, is this at the injection site? Unfortunately azacitadine is notorious for injection site reactions. Have you got any cream to put on the sites?
Can I ask how long you have been on the azacitadine now? It can take a few cycles to start seeing the benefit, but I do understand how incredibly challenging this regime can be. We would be very happy to talk things through with you and you can reach us on 0808 2080 888.
It is absolutely your choice with regards to having treatment but I really would recommend you talking to your Clinical Nurse Specialist (CNS) or consultant about how difficult you are finding things, they can sometimes tweak the chemotherapy itself to make it more manageable.
Do take care and please let us know if we can help further,
Heidi J (Support Services Nurse)
Hello, I was given paracetamol dispersal. For sore mouth No gel or anything else. Now have Hydrocortisone for tummy., some anti sickness meds metocloprimide,
That’s it. Nothing else.
Nurse asked me to request Hydrocortisone as tummy sore but took 6 days to receive. . Not sure what to do as nobody seems to be in charge. Chemo nurses tell me to contact haematology but takes for them to reply.
Whilst we have a National Health Service, each organisation is independently run so there are bound to be different practices but a lot of common approaches to things within Haematology Departments.
I realise that I am late to the conversation here, sorry, but you can actually order a free sample pack of Gelclair online gelclair.co.uk
So if you or anyone you know needs it in the future, it may be worth getting in touch with the company to send some out.
I’m pleased to read it worked for you @DuncanB
Thank you for your suggestion re Gelclaire, I have sent an email to ask for a,sample of Gelclaire. My team prescribed soluble Paracetamol which helped a bit but didn’t sooth my mouth. So fingers crossed they send me a sample. Its expensive for me to buy and not solve the problem, but priceless if it helps .
Well my consultant appointment did not go well as I wanted. I explained that I wanted a break from chemotherapy as suffered from lots of acute side effects this last treatment but was told 2 weeks reprieve only.. treatment resumes in 2 weeks time instead of nxt week. I now also have a bone marrow biopsy nxt week too. I really am frustrated that they dont listen to what I want or need. I am just finishing a course of antibiotics due to constant lymph nodes infections. Atm I am tempted to stop everything as I just wanted a month or so without side effects…
I’m sorry to read that your appointment hadn’t gone as well as you had hoped.
Your Consultant delaying your next cycle start might give your body more time to recover. Hopefully that will be the case.
The Bone Marrow Biopsy will give insight into how your body is responding to treatment so while not pleasent definitely positive in treatment planning.
Obviously I don’t know which Trust is looking after your care. If you’re feeling that your concerns are not being listened to, you have a few options.
You could find the name of the Lead Consultant for Haematology and write to that individual (if it’s not your Consultant)
Possibly speak to a Cancer Support Worker in Haematology.
Find the name of the Medical Director or Chief Executive and write to them.
Write to the PALS team.
Another option may be to ask for a second opinion on your treatment and side effects.
It’s never easy when you feel your concerns are not being heard and hopefully the above will spark some thoughts on how you want to move forward.
We are so sorry to hear that your appointment did not go as you wanted and that you are having constant infections. We can imagine this is frustrating for you.
I can see @DuncanB has replied with some great suggestions and we just wanted to echo these in that hopefully your body will recover by the delayed cycle, but that if you are feeling unhappy about treatment, perhaps there is someone within the haematology team such as a clinical nurse specialist, consultant or PALS that you could speak with?
If you would like further support with these, please know you can email us at support@bloodcancer.org.uk or call us to talk this through on 0808 2080 888.
