Hello,
I am newly diagnosed so still in a bit of disbelief. I have just begun ABVD 5 days ago and my mouth is in agony.
I have been given xylocaine and a mouthwash but they keep it numb for about 5mins. I can hardly swallow my own saliva.
Please does anyone have any advice?
Hi HayMarb and I see it’s your first post so a warm welcome to this corner of the Community although I am sorry to see you joining the community
I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
First I see you have already joined our dedicated Hodgkin lymphoma support group, it would be worth connecting in there as there is significant differences across chemotherapy treatments especially those used for Lymohomas…… especially ABVD
If what you have been given is not doing the job you get back onto your clinical team ASAP as they can prescribe other treatments…..
I had bad mouth issues over my various treatments and it was a hit or miss as to what worked…… the main simple thing that helped me was fresh pineapple or melon blitzed up and put in ice cube trays, frozen and I was chain sucking on these when things were bad.
Difflam mouth wash and spray actually worked ok for me at times but there us no one fix fits all.
