I have a very rare form of cancer called bpdcn and really have just started on my treatment journey. I have had 1.6 rounds. I was unable to complete the first round due to liver toxicity but second round it was managed by medication.
The first round despite having 3 outta 5 doses, it had a massive effect. However after that the ones on my head grew back larger. Second round seems to have had little effect on them. In fact its now got larger and the ones in my lymph nodes have spread from 1 to 4 nodes.
I have another week before I see my consultant. I think I know what the difference was and have requests of medication to add which should make my main treatment more effective again but just dealing with the fear and anxiety in the meantime.
I'm terrified. I'm a single mum with young kids and I just don't know how to cope with these emotions. And my condition is so rare my docs have never seen a case of it before they're absolutely no reassurance
