Hello

Hi Rachel R and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable different type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Sorry to hear about your rash and temperature, unfortunately this happens a lot, let's look for your team to get you back on track and get the rest of your treatment done. It is all a struggle but you have to keep thinking about the greater good in all this and push through.

The main mouthwash I used was Difflam. I set an alarm to ensure that I was using it as regular as possible and also to ensure I was keeping it in my mouth long enough.

During my two Stem Cell Transplants I was using a two pack oral rinse called Caphosol and this was very effective.

Do talk this through with your clinical team or go in past your local pharmacy and talk with the pharmacist as they can help you.

The other thing I did that helped was blended fresh pineapple and put it in ice cube trays and freeze them...... then regularly sucked on them. 

Always around to help more or just to chat

Thank you for replying and the really helpful advice.

You may also find this link Sore mouth (oral mucositis) helpful, this is taken from the Lymphoma Action website. Lymphoma Action is a great place for good clear information.

Hi there

My husband is currently undergoing treatment for Waldenstrom's Lymphoma. He was diagnosed on 20th Feb, and, like you, has had two chemo treatments of Rituximab and Bendamustine. He has had terrible trouble with mouth sores, only just getting better after a month of suffering. He was prescribed Amphotericine B, a fungicide, that you "swish and swallow", and Xylocaine 2% gel to use directly on sores and ulcers. That has cleared it up, so he's feeling better. He also used a sodium chloride mouthwash after eating and even in between. Good luck with your treatment, have faith, my husband is about to start immunotherapy in two weeks time to attempt to build him a new immune system. He was also in hospital for 12 days as he caught Covid, but is home now and much better. 

Hello Bretonbelle

Sorry to hear about your husband’s lymphoma and his covid! 
Thank you for the advice re mouth ulcers. I will ask chemist/doc for advice too. Glad it’s nearly summer here, good excuse to eat ice cream every day!! 
All the best to you and your husband.

Hi Rachel - I had Rituximsab and Bendamustine for my chemo. I have Waldenstroms Macroglobulinemia. I had some rubbish weeks but you'll get through it. Just hang in their. I had some bad reactions along way but it worked a treat. My neutrophils plummeted at one point and they lengthen duration between sessions. But I ended up with a few extra doses towards end.

I guess like me you're not allowed to drink tap water. I found it had to keep enough water chilled to drink. Regarding mouth ulcers. My chemo buddy at time advised me to boil water, cool then freeze ice cubes to suck. I used to add little lemon juice from freshly squeezed lemon. I found it helped. Bit like sucking a cold boiled sweet.

Best of luck with it. You'll get through. Bendamustine and rituximabs tough. But it worked great for me.