Are you experiencing, or have you experienced, itching with blood cancer? Do/did you find it difficult to relieve your symptoms, or explain how bad it really is/was? What would you most want to know about itching? Do you have any tips or advice for others suffering?
We’re creating new online information about itching, and we’d like to speak to you if you’ve experienced this (either as a symptom of your blood cancer, or as a symptom of its treatment). We’re also interested in hearing from anyone supporting a loved one with blood cancer and itching. We’d like to ask you about what it feels like, what you wish people understood about it, and if you’ve found anything that helps to ease the itch. If you’d like to be involved or find out more, please email me at sarah.hastelow@bloodcancer.org.uk
Thank you - I’m a new Health Information Writer at Blood Cancer UK, and it’s lovely to ‘meet’ you all
Prior to my diagnosis, the itching was awful.I had it for about 6 months prior to diagnosis of my lymphoma, with it gradually increasing in severity. It’s hard to describe how deep in your bones /skin the itch felt, impossible to relieve it with any typical anti-itch medicines such as antihistamines , none worked. I remember lying in hospital at one point crying as the itching across my back and torso was so bad, and a kind nurse brought some ice wrapped in towels to try and cool my skin down (it was a good distraction technique anyway!).
The only thing that finally relieved the itching was to go on high dose steroids and shortly after that I went onto chemo/immunotherapy treatment for my Non-Hodgkin lymphoma (NHL). Haven’t had any problems with itching since thank goodness!
Thank you so much for getting in touch - we really appreciate you sharing your experience. I’m so glad the treatment you’re receiving is helping with the itching, and that a nurse was able to provide some temporary relief when you were suffering.
We’re planning to include some patient stories and quotes in our resource, and I wondered whether you would be happy for us to use the few lines you’ve said here about what your itching felt like? We would of course attribute the quote to you (if you wanted us to!) and you would be very welcome to send us a photo of yourself to go alongside it (again, only if you wanted to.)
If you are comfortable with us including you, please can you send me the details below - feel free to PM them to me, or email me at sarah.hastelow@bloodcancer.org.uk if you’d prefer not to share them on this thread:
• Your full name
• The year of your blood cancer diagnosis
• Your age*
• Your gender*
• Your ethnicity*
*You don’t have to share these particular three details at all, but it will help ensure we hear from a diverse range of people affected by blood cancer.
Thank you again, and do reach out with any questions.
Sarah
@Sarah_BloodCancerUK I struggle with an incredibly itchy scalp at back lower down, 2 yrs in remission for Acute myeloid leukaemia (AML), researched and the only thing that helps is using shampoo and conditioner with ginger in, not healthy to wash hair daily but sometimes I just have to! Luckily The Range do the product at £1 a bottle so I bulk buy online
I would very much like to help with the subject of itching.
I suffered for almost 2 years to the point of total despair. I was diagnosed with Polycythaemia vera (PV) and my symptoms of itching and burning were more horrible than I can describe. I tried everything, creams, antihistamines, special treatment with ultraviolet lamps (cannot remember the name).
I couldn’t shower or go near water without suffering terrible itching that went on for hours.
I have, for the last year or so, been prescribed “RUXOLITINIB” and all my itching have disappeared completely. I have not had any nasty reaction (so far) to the new medication and my life has changed for the better.
I would be more than happy to discuss , talk and or support anybody suffering with itching due to Polycythaemia vera (PV).
Best wishes. oleconchi
Thank you very much for offering to be involved - I’ve noticed a few of your previous posts in other threads here and it seems like you’ve had a really rough time of it; I’m so glad that you’ve finally got something that works for you and relieves the itching.
It would be great to set up a video call in the New Year to have a chat about your experience - please can you email me at sarah.hastelow@bloodcancer.org.uk so we can arrange a time that might work for you? You can also DM me directly on here if you prefer!
I’ll be going on holiday tomorrow until the 2nd January, so there’s no rush to email or message me straight away - if I don’t hear from you before I head off, I’ll pick this back up then.
I was diagnosed with Essential thrombocythemia (ET) in 2010 and have been taking Hydroxyurea 1000 mg for 13 years. Both the disease and the drug can cause itching, The itching can be maddening at times. It also jumps around so that it might be on a finger for a few minutes and on my leg, back, scalp, or elsewhere shortly after that. I’ve found that the itching is worse when my blood sugar is low. I am not diabetic, but my blood sugar drops sometimes, especially when I am hungry. When the bad itching starts, I pop a piece of hard candy in my mouth, holding it under my tongue for a bit. (With this sublingual application the sugar can immediately go into your blood stream thus bypassing the digestive system.) This doesn’t work all of the time, but when it does it works fast. Also, just eating something can help.
Raising my blood sugar sometimes helps lessen other pain too. One afternoon, I dropped my cell and the hard edge landed on my big toe, right at the toenail quick. It was quite painful. When I went to bed I couldn’t sleep because of the pain. Then I realized I was hungry and ate a sweet pastry filled with sugary frosting. The pain stopped shortly thereafter.
A hot bath also helps me with itching. I bet a bath with epsom salts would help too, but I haven’t tried that.
Years ago, when my leg was in a cast, it itched a lot. I found that spraying rubbing alcohol down inside the cast relieved the itching, I think it was the coolness caused by evaporation. I’m not sure how practical that would be for this kind of itching though.
Good luck with your research, I’d like to hear what other people do for itching.
Thank you very much for telling me all this - it’s extremely helpful and interesting to understand how the itching felt for you, and what managed to relieve it! I’m so glad you’ve discovered something that works for you.
I’d love to include a quote from you in our information, which will be taken from what you’ve said here if you’d be happy for me to do that - we usually mention the name of the person quoted, plus their age, their diagnosis and the year of their diagnosis. Are you OK with me including all of these details? We can also include a photo of you if you’d like to send me one of your choice, but this isn’t an obligation if you prefer not to!
If you would like to send in a photo, or you have any questions, you can reply to me here or private message me, or email me at sarah.hastelow@bloodcancer.org.uk .
I also look forward to sharing the final resource with you.
A great big welcome @Gloriajean and you have already shown the value of our forum by sharing your experiences.
Let’s hope others do share their experiences.
Look after yourself and please do keep posting.
I wondered if you would be happy for me to use what you have told me here in our itching information - I would like to quote your description of the itch, and the things you tried to ease it if that’s OK with you? I will of course credit you, and you are welcome to send me a photo of yourself if you’d like us to include that as well.
If you have any questions or would like to talk further, please let me know - you can reply to me here if it’s easier, or you can try my email again - sarah.hastelow@bloodcancer.org.uk
Hi. Yes, I’ve been itching significantly since my Chronic lymphocytic leukaemia (CLL) diagnosis in early September 2023. Mostly on back, stomach, groin and upper leg areas.
I dont know what to use to relieve the itching.
Name Dermot de Courcy Robinson
Diagnosis 21 September 2023
Age 72
Male
White
Thank you for responding and sharing your experience. I’m sorry to hear that you’re suffering with itching - if you would like to speak to our Support team about your symptoms (or anything else!) at any time, please do give them a call on 0808 2080 888.
I am however pleased to say that I’ve nearly finished drafting our itching information and hope to be able to share this soon - I will post a link in this thread to the web page once it’s published
The information will contain lots of ideas about how to ease itching, as well as some options to bring up with your GP or treatment team. I don’t know if you’ve discussed your symptoms with them before, but if not it’s worth asking about itching at your next appointment to see if there is anything they might be able to do to help. You may even want to show them our information and see what they recommend trying.
Thank you again, and I look forward to sharing the link soon - I hope it will help.
Sarah
