Nurse Advisor Support Session on Watch and Wait

Watch and wait
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Hello @Bannanacake, apologies the email has taken so long to reply, it went to the supporter relations team first then to us amongst lots of COVID treatment emails. I am sending it through now and would be happy to chat through with you at some point if you want to call the phone line Blood cancer information and support by phone and email | Blood Cancer UK Kind regards Gemma

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Hello all, following our session on Tuesday, Gemma has put together some resources which might be useful for those on watch and wait. I will add them below.
As always, our support services team are here for you if you would like to talk things through or if there is anything we can do to support you at any point.

  1. BCUK information on Watch and Wait:
    Watch and wait | Blood Cancer UK

  2. Treatment decisions and talking to your Doctor (MPN voice)

Lymphoma Action – Active monitoring/Watch and Wait:
Lymphoma Action | Active monitoring (watch and wait) (lymphoma-action.org.uk)

Myeloma UK – Smouldering Myeloma Information and MGUS Diary:

Understanding and Monitoring blood counts

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Hello@Gemma,Thank you for your reply I was glad to hear although I do appreciate the ammount of enquires you have etc so that was great to hear with your advice and the links from @Alice_BCUK
I have read through the links many times and am happy to read again, the ask the Nurse Myeloma one is good.
I think because the paraprotein level was creeping up my GP wrote to the Haematologist and they advised 4 monthly blood test ,ive been keeping to 12 weeks ,my GP is happy with that and it keeps a better idea of the increase.Providing I dont develop any other symptoms the Haematologist is ok to wait to see me unless levels rise to 20, thats the advice from them although my GP is keeping checks on me so thats reassuring .
I understand levels depends on so many factors so I’ll wait and see what next results are, it will be interesting .
Kind regards
Bannanacake

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Thank you @GemmaBloodCancerUK - I’ll keep my fingers crossed for more of us to be added to the Covid treatment list and in the meantime that’s really helpful advice about the JAK2 testing - in that case I will certainly speak to my GP about a test next time I’m getting a blood test & see what they say! Many thanks :slightly_smiling_face:

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Hello @lousyT, thanks for the message. As you have seen @Alice_BloodCancerUK has added some of the resources regarding blood tests that may be helpful. It is so important to consider that the blood counts for blood cancer patients are rarely within the normal parameters due to the disease and the treatments so it is wise to compare previous tests and look for significant changes. This is when I would suggest talking to whoever is monitoring the blood counts. I would be happy to do session on blood counts in the future if that would be useful? Thanks Gemma

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Dear @Russell, thanks so much for the message. As you have seen @Alice_BloodCancerUK has added some of the resources regarding blood tests that may be helpful. It is so important to consider that the blood counts for blood cancer patients are rarely within the normal parameters due to the disease and the treatments so it is wise to compare previous tests and look for significant changes. In the case of patients like yourself with Chronic lymphocytic leukaemia (CLL), I would particularly focus on the Lymphocyte count and any significant changes in the Full Blood Count, equally as important is reporting any night sweats, lymph node changes or swelling of the abdomen. I would be happy to do session on blood counts in the future if that would be useful? Thanks Gemma

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Hi @Kevan7, thank you for the post, you are correct that the purpose of W+W or ‘active monitoring’ is to ensure early progression is identified before the patient potentially becomes too unwell. It should ensure treatment is started so patients can tolerate it as well as possible. Unfortunately, it can cause much anxiety so we do need support our patients equally whether they be on or off treatment. Completely understand your thoughts. Take care Gemma

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