Travel Insurance

We have multi-cover (with cruise ship) through Staysure. One of our colleagues in Reading has done an analysis of all potential travel insurers (Cyndy’s pdf below). Be mindful that ticking a certain box on the insurer’s form for many of us might be answered differently today compared with even 5 years ago, as treatments are now so good, with many of us on maintenance.

Jan 2022 Travel Insurance - Cyndy Gray.pdf

Useful Myeloma Blogs

Our support group is a local community of cancer patients and their family members. However that is not our only source of patient information and experiences. Please start with Macmillan, who offer loads of support. But here are a few online patient blogs which are generally searchable for particular keywords of interest to you.

UK websites include:

• Myeloma UK patient discussion forum here
• Blood cancer UK patient stories here
• Leukaemia and Myeloma Research UK patient stories here
• Facebook: UK Myeloma Support Group, MyelomaUK, many others (loads of US sites)

US-focused websites include (very useful as Myeloma is the 2nd most common cancer for Black and African American people who tend to develop Myeloma at a much younger age than their white counterparts):

• Healthtree Foundation blog here
• International Myeloma Foundation blog here
• Cancer Support Community blog here
• Mayo Clinic blog here
• (Other eg) Myeloma and Me (Pfizer sponsor) useful online Staying Positive tool here

Dexamethazone dosage

• Several of us have spoken to our Consultants to get the Dex dosage reduced as the side effects (lack of sleep, feeliong down, etc) are undesirable, yet we know Dex in conjunction with Lenalidomide etc is key to effectiveness of the treatment
• In these specific patient cases (every one of us unique) the Consultant agreed to reduce the dosage of Dex, minimising side effects, with no noticeable impact on treatment success. So check with your Consultant if Dex reduction works for you