I was diagnosed in June 23 started on imatinib but couldn’t tolerate it as soon as it entered my stomach I was violently sick.
I was then changed to dasatinib and experience horrendous fatigue and bone pain. My blood results are amazing but I’m struggling mentally.
I have now developed random fevers ..vomitting…just last night had a temp of 38.6 shaking uncontrollably then settled …
I keep telling myself it could be worse but I feel so awful when I take meds often results in me not taking them if I have a full on day …this is very wrong and I’m lucky as my bloods keep coming down and now at 0.008!!!
I’ve reached out for some counselling as I need to get a control
I am sorry to hear about the harsh side effects you are experiencing with your dasatinib, it is understandable that you are struggling. Recognising and acknowledging that you need some support is not easy so it is great to know that you have reached out for some counselling.
Do your haematology team know about your recent high temperature? If not, it is really important that you let them know straight away so they can advise you what to do. Whilst fevers can be a side effect of dasatinib. A temperature of 38.6 is a sign of an infection which can be very serious. Please do let your team know asap.
We we are all here to support you @Beagle so please keep posting and let us know how you are getting on. Our support nurses are also here, should you need us on 0808 2080 888
Thank you for reply ….no they don’t know …I went to an and e last week but temp had resolved and just fobbed me off …just feeling unheard and not important….
Thursday night I had high temp and rigors which settled after paracetamol…happens a lot …
My bcr is excellent so nobody cares
You are very important and this sounds really distressing for you.
Do you have a Clinical Nurse Specialist (CNS) or key worker who you can talk to about this? Its important they know so they can best support you and advise you how to manage your temperatures and rigors.
Hi @Beagle you say you are rubbish at speaking up, I was too.
My handy hints that I have learnt over the years are to to write down everything I want to say before hand plus my fears, questions and practicalities so I cover everything.
I am now ‘pleasantly assertive’ and do not leave the consulting room/video call/telephone consultation till I have covered everything I want to say and got adequate responses.
I remember that an appointment or consultation is a two way process and should be patient led as the patient charter says.
I am really sorry to hear this @Beagle. This really needs to be addressed. Can you speak to your consultant or another member of your team? High temperatures must not be ignored.
The nursing support team are here until 7pm tonight on 0808 2080 888 if you would like to talk this through in more detail.
Hi Beagle, sorry to hear about the problems you are experiencing on Dasaranib. I have struggled with bone pain at times on dasatanib but this has eased and fatigue is the main side effect I have now, I have had very few other side effects compared to the imatanib. I try and take the dasatanib at the same time every day and I find this helps and personally I find keeping as active as possible also helps with the fatigue . I hope things are sorting themselves out for you , all the best.
Thanks nickc….just got myself abit low. Definately better side effects than imatinib.
I’ll get there just having a wobble x
Glad to hear you are settling …the fatigue is horrible x
I was not sure that my distress with multiple symptoms was being heard. As my telephone appointment was nearly due I decided to wait for it. Two days before I spoke to my consultant’s secretary and said that I had a sheet of notes for the consultant to read before my telephone appointment and could I send it to her to be shared with my consultant.
It really worked and I felt heard and she understood how I was feeling. She had made some plans about treatment and we were able to discuss it almost as if it was not a telephone appointment but an in person one.
I do feel that teleohone appointments can be as hard on the consultant as for us because we rush to share our concerns and they are supposed to absorb the information and come up with answers when are not laying eyes on us and reading all the physical clues and seeing us. When so many seem to suffer skin issues it seems really important to be in the room together.
Maybe try the written sheet idea if you are in the middle of a bad patch. If skin issues are your problem would it work to phone and ask for a hospital appointment? If things are rolling along nicely I am happy with a telephone appointment.
Thanks so much @GrandmaJo I think your preparation for your appointment was brilliant and didn’t it make a difference for you and your consultant.
I also agree that there is a place for telephone/zoom type appointments and also for face to face appointments and that decision should be patient led.
My only problem with awaiting a contact at home is the call always comes when I am in the middle of something and I have to walk round with my questions, pad and pen.
