My Chronic myelomonocytic leukaemia (CMML) has transitioned to Acute myeloid leukaemia (AML). I went through several unsuccessful rounds of chemo and have now come off treatment all together. Nature will take its course. But I get a very itchy back and upper arms. Have done for several weeks. I’ve tried anti-histamine and anti-itch E45 which seem to help a bit. Any other ideas?
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A great big welcome @tomcojo so sorry to hear that your treatment did not work for you
Have you asked your GP, specialist nurse or your medical team about your itchy back and arms.
Recently there have been posts about itchy conditions and I hope someone will be able to share their experiences.
Also I will copy this to the Blood Cancer UK nurses @BloodCancerUK_Nurses can suggest anything.
Please keep posting and really look after yourself
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Hi Tomcojo,
One person’s annoying itch is another’s hellish quality of life. As a life long Eczema sufferer don’t I know it and my sympathies go to all those suffering.
On having PUVA (Psoleran + UVA) I was told that studies into ‘itching’ was far far less than pain control and the effects on life.
My last flare was about 3 years ago and responded well to Chlorphenamine Maleate (Piriton) and Steroid Creams backed up with immolients.
June 2022 I started treatment for LGH Waldenstroms Macroglobulinemia on Rituximab and Ibrutinib (IgM Targeted) and remain on Ibrutinib everyday. Over the last 3 months my whole body skin has irrupted, what to me at an untollerable level and my Haemotologist directed to Dermotology. Treated again with that previous typical mix with Excema given as a general description.
There lays the rub (pun intended!). Symptoms recognised but causation, like many flare ups unclear. No current thought to external irritants but can’t be ignored. Or is it Immunoglobulin based? Waldenström macroglobulinaemia (WM) is marrow based and whilst signs are good re IgM and paraprotein what about IgE and it’s triggers to Histamine production via diet or Meds? Ibrutinib and its +/- effects on Histamine I believe is under investigations.
Another suggestion thats been made is to consider false sensation triggers such as Formication (feels like ants walking over the skin) due to Neuropothy.
I’ve been given the OK to go to antihistamines over last couple of days and itching has reduced. Being immunosuppressed the risk to infections (Staph, Herpes Simplex etc.) is of course heightened. How my hands survive with continual washing and alcohol rubs is a struggle.
Bottom line is I keep my Haemotologist/ CSN’s informed on every aspect of my health (drug trial strict monitoring) and see the right Clinical Specialists. Persevere and seek the best medical advice.
Sorry I’m heavy on the technical but I’ve learnt over 70 years the roots to itching are so varied and challenging.
To all you poor sods with the ‘itch’ what ever its cause or severity I forward my sympathy and best wishes for treatment and relief.
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Hi there,
I’m new to this forum and only diagnosed with essential thrombocythaemia in June. I have commenced on interferon (very low dose) and at my last blood test my platelets had returned to 310.
I feel fairly well but joined this thread as I get absolutely overwhelmed by itching over most of my body which can last for an hour or so and then calms down for a few hours. It is particularly bad at night and after I’ve showered.
I’ve told my haematologist who merely said speak to my GP. My GP was frustrated saying “nobody wants to take on ‘itching’ as it is so complex to diagnose the cause …… Anyway: to cut to the chase-I have been using Balneum cream for a few years (to relieve post shower itching). My GP prescribed fexofenadine 120mg and, accepting that he was going‘outside the guidelines’, prescribed this 3x day.
Not convinced this was doing much I ceased fexofenadine altogether for one week: big mistake! The itching became unbearable. I have since returned to taking 120mg 3x day and can manage the itchy outbreaks. I next see my haematologist in 10 days and will tell her again.
Between the itchy outbreaks I’m very ‘conscious’ of my skin all the time : I can best describe it as like sunburn -very prickly and uncomfortable.
Anyway! Just wanted to say I’m sorry you’re struggling with itchiness. Perhaps talk to your pharmacist and try an antihistamine?
Kind regards
Joni
Thanks for the advice and good luck.
Thomas
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Dear @tomcojo
So sorry to hear that you are now off treatment and experiencing uncomfortable symptoms. May I ask whether your treatment team have referred you to dermatology at all? Is there a visible rash on your back? If the symptoms are persisting I would ask your treatment team to help, perhaps considering different anti-histamines?
Practical things:
- keep cool, as heat, particularly in bed, can exacerbate symptoms.
- tepid baths or gentle tepid showers.
- hold something cool on your skin, like a damp towel
- have cool or lukewarm baths or showers
- use an unperfumed moisturiser
- wear loose cotton clothing
- use a laundry liquid or powder that’s for sensitive skin
I do hope this is helpful and if you do need to get in touch, please do Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Have you tried having cooler showers. I know we are all different but having recently started to get prickly skin I did this and it helps. I also try and stay cooler at night and that helps. I will admit its a sensation for me so not as bad as yours sounds.
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Hi @Joni ,
I hope you are doing okay today? I am so sorry to hear that your symptoms of itching haven’t been completely resolved. Unfortunately itching skin as a symptom can be complex, a challenge to treat and indeed can be closely associated with Myeloproliferative neoplasms (MPN)’s.
I am pleased you have some relief form your current prescription but appreciate that this might not seem like enough.
Everyone may also have different ’ triggers’ which might worsen their itch so it can be helpful to keep a diary of when you feel it at it’s worst and least. This might also help you to keep raising the severity of this with your haematology team as it is important they know this is a real and debilitating symptom for you.
Please do also know that if we can support you in any way- our helpline is open 7 days a week- 0808 2080 888.
Best Wishes, Lauran
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