Hi not very good with technical equipment so I hope I’m posting in the right place , my question to the experts , after you’ve had lymphoma and been told your now in remission, when you get after effects, how long can that stay with you or is it different for everyone, as I’ve nerve damage on my right leg and not always but often it plays up although all the time I have a feeling in my leg that’s not on my left… any thoughts
Thank you for posting on the Forum. The Ask the Expert is all about covid and the drug Evusheld - so if you do have any questions regarding these two topics, please do post again and add the questions.
Great to hear you are in remission, but sorry to hear that you have nerve damage from the treatments. With regards to the nerve damage you mentioned in your right leg, have you discussed this with your Haematologist or specialist nurse? It can take time to resolve, different lengths of time for different people. Is it painful? Does it stop you doing things? It might be worth discussing it with you GP too, as they can refer you to a specialist for nerve conduction studies, if they feel this is appropriate. If you do have pain, you really do need to seek advise for this.
If you have any more questions, please do get back in touch with us, or post again on this forum. There may well be othesr that reply to you on this thread, regarding their nerve damage or peripheral neuropathy, and say what they did or didn’t do to help or ease it - so keep checking back!
How effective is evusheld against omicron variant and the subvariants? Will this vaccine mean the end of shielding and isolation for people with myeloma?
Thank you for all the information , going to my GP is still a bit nerve racking as before my diagnoses my GP said I was lying about how much pain I was in as every tablet was a pain relief of some sort , so now that I’m in remission I really think he’ll do the same as I haven’t cancer nodules pressing against my nerves.
I’ve still got peripheral neuropathy in my hands , some mornings my feet hurt that much I don’t want to get out of bed , my leg as like my emotions it’s also on a rollercoaster , good and bad days , but I fought my lymphoma so I’ll fight my recovery journey also ,
Oh no! I am so sorry to hear that your nerve damage is this bad. What a struggle for you. Are there any other GPs at the practice that you could see instead? You really do need to see someone that is more understanding and has better awareness of late effects of chemotherapy. Some hospitals have a ‘late effects’ clinic that you could attend. Do you know if your hospital has this? Are you still having Lymphoma follow up clinic appointments, if so, please do press this issue with them.
Do you have a Haematology specialist nurse that you could talk to about your emotions and possibly having a referral to a counsellor locally? Even though you are in a remission, you can still call them and ask for advice.
Everyone goes through different emotions during and after their diagnosis and treatment - everyone’s experience is very different, there are so many variables throughout it all. It is very common to need help and support for ‘emotional side effects’. You would ask for support for sickness, so you really should ask for support for your emotional wellbeing too! There are lots of avenues to support you, please do ask for support. If you would like to chat to one of our nurse advisors, please call our support line, we would be more than happy to talk to you: Blood cancer information and support by phone and email | Blood Cancer UK
Please keep in touch and let us know how you get on with the GP or Haem team. I hope you manage to get some help and support very soon.
I hope you are well.
Thank you for posting your questions, we will certainly take these forward to the panel of experts. There are many people asking very similar questions and wanting to know if this will mean the end of shielding for them. Hopefully you are able to join in the live session on Thursday, the link is available in the forum. Just in case you weren’t aware, you don’t need to have a Facebook account to join the session.