Hi. This is my first ever post and I would really welcome any advice that I could be given
My mother has non hodgkin's lymphoma which has become aggressive.
Over the last few days she has had horrible itching all over her body. She has scratched herself raw in places.
She has tried anti histamines but they aren't working and she stuggles to swallow pills.
We have an appointment with a consultant tomorrow but I don't know how to help her. It's heartbreaking seeing her so distressed
Hi Barneythedog and a warm welcome to this corner of the Community although I am sorry to hear about your mum’s diagnosis. I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of skin Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from your mum’s I do appreciate the challenges of this journey rather well.
Tell me about itching…… as my NHL was a skin Lymphoma I had years of horrendous itching …. but eventually my treatments did the trick.
Itching (There are some tips in this link) is one of the symptoms of Lymphoma but on the whole for High-grade non-Hodgkin lymphomas like DLBCL once treatment starts the itching tends to go.
Has she started treatment yet?
As for swallowing pills, she should try taking her pills with carbohydrates drinks like coke, fanta as this helps stop the reflux action when taking meds.
Do ensure that this is discussed with her consultant tomorrow as they are the best people to advise the best way forward.
Hi. Thanks ever so much for this. Mum has had 12 chemo sessions and 15 lots of radiotherapy but this ended in November. The itching started 10 days ago and has got worse over the last few particularly.
I'll go with her to see her consultant and hopefully they will be able to help
Thanks for this…… so we’re are taking about side effects of treatment and more specifically post treatment ‘left overs’ and itching can be one of the problems.
Chemo and Radiotherapy can have a significant and at times long lasting effect on the body and the immune system allowing things like itching to kick in post treatment….. let’s look for her consultant to help her out…. there are some creams that can calm this down along with regular antihistamines….. along with other treatments.
If she only finished her radiotherapy the end of November this is most likely still working in and on her body….. I have had a total of 45 (zaps) over my main 2 years treatment and although some treatment was on all my lymph nodes it did have a sign effect on my skin….. and more importantly on my immune system lasting a good 14 months as this was seen as part of my treatment for my second Stem Cell Transplant 14 months after my first.
If the immune system is not functioning well skin problems can kick off.
Hi. Thanks for this.
As hard as it is to see her suffering like this (I'm not ashamed to say I was in tears) at least I now know that this does happen and that there are things that can help.
It is hard…. many a night my wife was covering all my body with Hydromol Cream and I was sleeping with cotton socks, gloves and at time at hat to help the cream sink in then we would have to change both my PJs and all the bed sheets every day.
Thank you for your kind words
She's been through so much since her 'journey' started 2 years ago.
Yup….. this unfortunately is normal for a Lymphoma journey……. I have been doing this for over 24 years
Hi, well I have exactly the same cancer as your mother and I also had the most awful horrendous vile itchy sores from the top of my head down to my knees. If you saw a photo you would be horrified.
I feel for your poor mum. I've been there.
Here's a good tip for her. Nobody told me to do this but I did it off my own bat. I bought lots and lots of cotton white gloves and wore those 24 hours a day. I was still scratching hysterically, but at least my nails weren't ripping me to bits. And I only wore cotton long sleeved t-shirts and cotton undies. Do tell her not to wear any synthetics, it just makes it worse it seems!
The only treatment that worked is steroid cream. After my stem cell transplant, and while I was still in hospital, the dermatologist came to see me to inspect the rash. She said it is an allergy to some of the chemotherapy drugs. And is a known side effect. She prescribed steroid cream that I put over my body from my shoulders to my knees, and a different steroid cream for my face and head and neck. This works.. it takes a few days for the uncontrollable itching to slow down, but it actually took quite a few months for all of my skin to calm and clear. However.... Be warned..... The steroid cream can potentially damage your skin and you end up with skin that looks like you're 95 years old. Not on the face thank goodness because it was a different sort of cream on my face.
However the steroid cream is the only thing that works. Antihistamines did nothing.
The dermatologist also prescribed anointment in a big tub that I had to slather myself with after the application of the steroid cream. And I mean slather. You take a great handful of it and just slather it all over. I felt like one of those channel swimmers being covered in fat LOL.. You really must tell your mother to keep this up, I got lazy after a couple of months and didn't use the moisturising ointment, and I think that's why my skin is ruined.
So that's my advice, to get the gloves and cotton t-shirt and undies, ask her consultant to refer her to a dermatologist, and then follow the dermatologist advice to the letter. Perhaps ask for steroid cream and a moisturizing ointment to slather on all over her body.
The horrible itching is as a result of some of the drugs in chemotherapy. They told me that they don't know which ones are the culprits and they would have to test so many to try to find out, the trouble is that we need that chemotherapy and unfortunately it's one of the side effects that can potentially happen. It certainly happened to me full blast, so I absolutely empathize with your mother.
Do tell her I feel for her very much. Feel free to ask me anything else.
Virginia x
Hi
Thank you for your kind words and advice.
Sadly mum lost her battle with cancer in February.
I was there with her when she passed away in hospital.
I'm still trying to come to terms with it all.
Hi Barneythedog I am so sorry to hear about your mum, my sincere condolences to you and the family.
Do check to see if you have any Local Macmillan Support in your area as some centres have bereavement support….. also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
We also have a dedicated Bereaved Family and Friends Support Group. on the community.
((hugs))
Whatever cancer throws your way, we’re right there with you.
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