I wondered if anyone else has experience side effects of both Azacitidine and Pegasys Interferon with Hydroxycarbamide. I was diagnosed 2 years ago with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)), due to my bone marrow results CBL, and Tet2 and my symptoms which are mainly mild fever, sweats, fatigue and raised white blood count, mild monocytes, and a,few other blood levels raised.I was on Hydroxycarbamide for 9 months but symptoms much the same but with constant Swollen lymph nodes under arm and neck and fever. Not too many side effects from Hydroxycarbamide but not much help with other symptoms. My team started me on Azacitidine. After the 3rd month of treatment I had Firstly itchy lumps all over my body, then severe mouth sores, then sepsis, then panniculitis, then finally Spleen infarc. Azacitidine was stopped and I was given Pegasys Interferon 90mcg weekly and daily Hydroxycarbamide. I have had constant itching on my entire body, severe headaches so bad I have to take strong painkillers, and my temp is up and down but not reaching 38 the dreaded number.
My team say I am a conundrum? That’s not helping me. Does anyone else have any symptoms like mine with those drugs or are you on different drugs with less side effects
I’m sorry to hear you are experiencing the side effects of the medication. It sounds really uncomfortable for you.
None of us want to be conundrum do we, we just want somebody to be able to help.
I have a different blood cancer but I know there have been lots of discussions around itching on Hydroxycarbamide. I have copied a link to one of the chats below.
You can search using the search bar at the top of the screen and you might find other links to chats. I have also copied in the @BloodCancerUK_Nurses in case they can offer any advice.
I can’t speak from experience about these drugs or their side effects I’m afraid, so instead I am going to tag in some of our wonderful Forum regulars that have their own links to Chronic myelomonocytic leukaemia (CMML), and may be able to reply and support you. They have a very friendly and informative thread, which at some point you may want to read through: Recent diagnosis CMML
@Bonny16 Hi, I’m so sorry to hear of your symptoms. I’m supporting my husband who was diagnosed with Chronic myelomonocytic leukaemia (CMML) in October 2024. He’s currently not on any treatment so unfortunately I can’t share any experiences but just wanted to say I’m thinking of you. I hope things get easier & more comfortable for you soon. Best wishes
Oh my gosh! The itching really does sound so awful. The link to the thread given by @nichola on that seemed very good and @Jill1 seemed to have found some solutions for her husband.
I have had Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) for over 17 years but thankfully haven’t suffered from this terrible itching? But equally I have never had any treatments so no side effects to be endured! Did the itching precede the hydroxycarbamide? Many people with Chronic myelomonocytic leukaemia (CMML) do experience itching. Some also have psoriasis. Headaches are listed as a side effect of the Pegasys interferon? Sadly if it’s a side effect of either or both of the drugs you are taking, maybe you need to have a discussion with your clinicians about taking a break from them to see what happens ? It really doesn’t make you a conundrum if these are known side effects from the drugs, and maybe your quality of life needs to be taken more into account when weighing up the benefits and risks of these treatments?
Maybe they could refer you to a dermatology department for help?
I do hope you can find a solution soon as it sounds pretty miserable for you.
Hi @Bonny16 I was diagnosed with Chronic myelomonocytic leukaemia (CMML) in September 2021 and like you also Tet 2 mutation, along with Ras mutations. Unfortunately I cannot give any information on the effects of the medications you are on as I have always been on watch and wait. What I can tell you is I also suffer with itching, particularly my head. Also suffer like most of us with Chronic myelomonocytic leukaemia (CMML) from fatigue, and just take each day at a time and try to keep busy, and rest if I need to. This forum is a lifeline for so many people as you never feel alone, and I am sure you will get benefit from the online forums we have on Chronic myelomonocytic leukaemia (CMML) every few month. I send you well wishes and a big forum hug. Take care.
