I’ll be travelling home from work but will listen in. Looking forward to it x
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A really great session today and so informative. Thank you Blood Cancer UK! 
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Hi@Nichola75 I was sorry to have missed it ,I sent my ?by e mail so l
will look forward to a reply it sounds like everyone got a lot out of it,I am glad you did.
Bannanacake
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Hopefully we will see you next time
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Thanks Gemma and all at Blood Cancer UK a very interesting session and it was great to see others, although weird to see proper names.
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I haven’t been on here for several days and only heard about this when a Forum email came in around 5.00 p.m. this evening. I am very, very sad to have missed it as a Watch and Waiter and would have been really interested to attend. Will there be a summary, or some indication of the questions and answers. My anxiety is high now plan B has been dropped and I will be speaking to my Consultant in early March and I think this would have really have helped me to prepare?
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Hi @Bronte sorry you missed the session today. I will copy your query to @GemmaBloodCancerUK
I am not surprised that your anxiety levels are high as you say that your Plan B has been dropped and you have to wait till early March to speak to your consultant.
As for preparation perhaps you have time to just write down all your questions, fears, thoughts feelings, symptoms and practicalities. This is your opportunity and time.
However if you have more pressing issues your GP or Clinical Nurse Specialist (if you have one) might be of assistance.
I always feel the waiting time is the worst so perhaps the next 4-5 weeks are not going to be easy.
We are here for you as is the Blood Cancer UK support line. Perhaps it might help to do things you enjoy in the meantime and be kind to yourself.
Please keep posting I expect most of us find waiting so, so difficult.
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Dear @Bronte, so sorry you missed the session. I will be answering some if the questions sent today so may be worth keeping an eye on the thread. You are very welcome to call the Support Line Blood cancer information and support by phone and email | Blood Cancer UK to talk things through if that helps? We can all help to advise you with questions to ask. @Erica gives great advice so definitely be prepared with your questions and call upon your Nurse Specialist if you are able. Kind regards Gemma
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Hi@Bronte,hello like you I missed the zoom unfortunately I had another appointment .I am on watch and wait with blood tests looming in March .As @Erica says writing a list of ? Is a good idea and it helps to get it out if your head.I find it lessens the anixety and I try as best I can to stay in the moment,(try bring the word!)I am sorry the anxiety is building I think that is a common thread on the forum and it helps to know others share the same feelings and can offer support.I hope you get to hear and I too would welcome some feedback from the meeting .
All the best
Bannanacake
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Dear @Gemma I will look forward to seeing some of the questions
Answered ,that would be great .I sent an e mail in a few days ago ,my question was ,is there a pattern to rising levels of paraproteins in the blood or are they just random.I am on 12 weekly blood tests and the last 2 the rise was the same ,2.40.I couldnt make the zoom meeting .
Thank you ,I will look forward to hearing .
Kind regards
Bannanacake
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Thank you everyone….I will definitely be keeping an eye on this thread and I really do know that BCUK is always there to help so thank you for that too….
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Dear @Jansis, sorry to hear you are in discomfort. Will answer your questions as best I can and add the resources I found for you at the end: 1) the regular blood tests will dictate any changes and the Haematology team can interpret those for you, please ask ‘at what level would you feel there is any progression?’ as for numbers so that you are informed. 2) If you iron remains low despite oral supplements there are IV versions if it requires and also please make sure you take vitamin c before iron supplements as it helps absorption. 3) Discomfort in the ribs may be associated to the radiotherapy but I would mention in Haematology appointment as bone pain is relevant. 4) In Haematology appointments I would ask …“are there any changes in the blood that concern you?, what levels of paraprotein would you be concerned about?, I have this discomfort in the ribs which is really troubling me, could this be tissue damage/healing from the radiotherapy or is it something that can be investigated?”. These are all reasonable questions. Please let me know how you get on. Here is the resource that may be helpful: https://www.myeloma.org.uk/wp-content/uploads/2021/12/Myeloma-UK-Smouldering-Myeloma-Infosheet.pdf. Kind regards Gemma
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Dear @Rammie18, thanks for your question. It is absolutely right to ask “what blood levels in particular are you looking out for?”, these are your results and it is important that you are informed. You can also say “at what point would you change the current treatment?”. Thresholds are good to know, what I would say that most Blood Cancer patients have abnormal blood levels but that is due to the disease and/or treatment side effects. I would be mindful of significant changes and then do ask your Haematology team. Having and requesting copies of blood tests is good so you can have an idea of the ‘normal’ for you. I would also say that blood counts are one aspect of health but the physical well-being is so important so whilst keeping an eye on blood levels you should also report any physical changes that concern you. I would always ask if something is worrying you. We are also here on the Support Line if you need to talk things through. Take care. Gemma
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Hello @franko, this is a really good question and I will go through some signs and symptoms to help guide if that’s ok? This is very general and applies to all blood cancers:
Weight loss
Reduced appetite
Pain - unexplained and/or joint pain
Increased bruising/bleeding
Persistent infections
Fatigue that is overwhelming
Shortness of breath
Swelling in stomach and lymph nodes (armpit/groin/neck)
Persistent headaches
Night sweats - where you have the changes bed clothes
Rashes
Any of these or even an illness that is not improving please do go to your team and relay the symptoms.
Of course if you are worried you are welcome to call us on the Support Line and we can talk things through. Take care Gemma
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Hello @BobK99, these are the sign to report that have also sent to @Franko:
Weight loss - unexplained
Reduced appetite
Pain - unexplained and/or joint pain
Increased bruising/bleeding
Persistent infections
Fatigue that is overwhelming
Shortness of breath
Swelling in stomach and lymph nodes (armpit/groin/neck)
Persistent headaches
Night sweats - where you have the changes bed clothes
Rashes
Any of these or even an illness that is not improving please do go to your team and relay the symptoms.
Of course if you are worried you are welcome to call us on the Support Line and we can talk things through. Take care Gemma
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Dear @Chapsticks, thank you for the message. In regards to the MPN community who are not on treatment being added to the COVID treatment list, we are unsure that this will happen at this time but as time (and clinical trials on vaccine efficacy) moves on there may be more evidence to include more of the blood cancer community.
I am sorry to hear that you have not had the support you need and indeed the testing for JAK2 that now would be standard. It is worth requesting this as it may be important to know if you condition changes in the future as more treatments have developed to inhibit JAK2 which is found in 50-60% of patients. I would suggest talking to your GP and having this resource on hand: Essential thrombocythaemia (ET) – MPN Voice. We are here to support you at Blood Cancer UK with the support services team and I would also recommend getting in touch with MPN voice. Kind regards Gemma
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Dear @nelletap, thanks for your email. We will post some information on blood counts soon but what I would say is that blood levels in Blood Cancer patients are rarely within the normal parameters, this is due to the diseases being bone marrow derived and the treatments being given. I would suggest that our next topic should be on blood counts/levels?
Hereditary blood cancers are very rare although there may be a very small increase in risk, this should also be taken in context of an ageing population, that blood cancer is a vast group of diagnoses and that it is the 3rd most common cancer.
I do hope this helps and happy to talk further on the Support Services Phoneline. Take care Gemma
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Dear Gemma
Thank you. Very helpful in this time where it can be harder to get clear.advice. And the perspective (3rd most common cancer) is also helpful.
Tricia
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