My partner has recently been diagnosed with lymphoplasmacytic lymphoma (non-Waldenström macroglobulinaemia (WM)) after a years long journey.
They are currently on watch and wait as been scored low risk.
While apparently not typical the only thing they are suffering with is a chronic itchiness of the skin without any rash.
Dr has prescribed antihistamines and exploring the possibility of phototherapy but looking to understand if there are any others out there experiencing this and any other strategies for managing this.
Hi @swrigh30 a great big welcome to our forum, I am glad that you have found us…
You are obviously very caring.
I will copy your post to the Blood Cancer UK support nurses @BloodCancerUK_Nurses to see if they can help, but it is really a question for your medical team.
Others on our forum might be able to share their experiences.
Please do keep posting and take lots of care both of yourselves
Hope this isn’t a total misdirection and if it is I apologise.
71 year old under treatment for Waldenström macroglobulinaemia (WM). Comorbidities T2 Diabetes, Hypothyroid and life history of ‘bouts of Eczema’.
My Waldenström macroglobulinaemia (WM) treatment is targeted Rituximab and Ibrutinib managing the B cells.
A severe wholebody outbreak of Atopic Excema?? has occurred well into treatment and with a low immune threshold I was directed to Dermatology.
In discussion both with Haemotologist and Dermatologist I asked if the B cell malignancy along with my Therapy was influencing not only IgM (paraprotein) but also other B cell derivatives such as IgG, Mast Cells and subsequent Histamine release?
It hasn’t been dismissed but on my Dermatologist prescribing a short course
of Prednisolone Steroid it greatly improved. However it has now returned. Initially as formic itch (ants crawling) but now more a typical ‘Lymphoma rash’.
I take antihistamines and steroid creams and Dermatologist has programmed UVB light therapy yet to commence. I’ve had UVA treatment in the past with good results so I’m OK with the procedure. That ‘stronger’ UV treatment followed my Chemo/Radio therapy for Hodgkin Lymphoma in 1984, so 40 years on and still 'lousy '.
We are all different and as the cause of skin inflammation is often undiagnosed (including autoimmune) the medics have quite a puzzle at times.
What I can say is my itching is more distressing to my quality of life than the other standard issues of Lymphoma fatigue.
I hope I’ve not gone of track and hope that your meds team can come up with a relief.
Thank you Erica, that’s really helpful
Thank you for your reply Iain, it’s really helpful to understand the journey you have been on.
We have a course of prednisolone in the cupboard to use when I get particularly bad but my partner has resisted using them so far.
Hopefully will get word for phototherapy soon.
All the best
That’s such a coincidence. I read your post about 10 minutes after I responded to @Sarah_BloodCancerUK ’s post today about itching. You may want to read my reply to that post.
I too have LPL (non Waldenstroms) and had bad itching. It’s good that your partner is able to be on watch and wait , I had to start treatment very soon after my diagnosis as the lymphoma was affecting my kidneys and thyroid (all good since my chemo/immunotherapy treatment, have been back in remission for 3 years now).
Prednisolone was the thing that stopped my itching ….(followed by my subsequent LPL treatment - rituximab and bendamustine)
Thanks for heads up.
I’ve contacted email
So sorry to hear that your partner has chronic itching, this must be very uncomfortable for them. Sadly, this is not an uncommon symptoms in some blood cancers. It does sound like that the team are considering all options, may I ask whether Dermatology are involved regarding the skin as yet? It maybe that the Haematology team are consulting with them.
There are simple strategies like tepid washing rather then hot baths and showers. Also, keep any washing powders or skin products very simple, without perfume or alcohol in them.
I do hope that there is some respite for your partner soon and do call if you would like to talk this through: Blood cancer information and support by phone and email | Blood Cancer UK