We are planning to hold a ‘zoom’ Nurse Advisor support session on the 08/02/2022 at 1pm and the first subject we plan to discuss is ‘Watch and Wait’. We recognise that many of our Forum members are on ‘Watch and Wait’ and we also get a lot of questions on this pathway through the Support Services phoneline, emails and social media. So I hope to answer your questions ‘live’ in the session but please do send me some questions on this thread or via private message if you prefer. I can read them out during the session or answer directly via Forum messenger if that is best. We do plan to do more sessions like this in the future so do keep your subjects coming. Many thanks Gemma
Topic: Blood Cancer UK Online Forum Nurse Session - Watch and Wait.
Time: Feb 8, 2022 01:00 PM Greenwich Mean Time
Diagnosed smoldering March 21. 20% plasma cells on BM
Light chain ratio 0.003 which is below normal range. Cant get an answer to how we will know if things are changing by my bloods. I think no protein in blood.
My vitB12 is now such that Im having injections and on iron as ferritin low( ( tablets havent made any difference).
I now have discomfort on R ribs but had radiotherapy to r breast last March too( found on ct for myeloma ).
Im not sure what I should be asking at haem appointments…
I’m not on watch and wait I think (as I’m having some kinda of treatment/medication for my BC). But a question I would like to ask if it’s appropriate to your session is…
Is it ok for me to ask my medical team etc when I go for a routine blood test is it ok for me know and ask what is being looked at particularly and when to be concerned (level wise)? Sorry if this seems like a dim question but often I find a “no news is good news” policy doesn’t help me much as I kinda what to know how close I am to a threshold of people on my med team being concerned. Also if I pass that line what are the options? Is there anything I can to do to prevent my levels going to those places or is it simply waiting for the inevitable and unpreventable?!
My solution is to ask for copys of my blood tests and compare them myself and take note of increases or decreases but problem is everyone is different.
I know I mayve answered my own question but maybe you have a better solution or maybe just to flag up the question…
The whole concept of being told to watch and wait… Mentally would do my head in… I struggle to not with anything that effects me that I’m powerless to do anything about or change… I get past it but it definitely takes a while to get over.
That’s a really great question @Rammie18. I request all my test results once a year but never really know what the blood tests mean!
Watch and wait definitely does my head in at @Rammie18. I find it so so difficult and it’s so hard to explain how it can really effect your mental health. I know in my head that it the right treatment but knowing it’s there and waiting for it to reappear (even thought that could be years away) drives me crazy! I feel very very out of control!
Hi Nichola@75 and @Rammie18 it was a great question about "watch and wait "It’s been"doing my head in"too since going on to 12 weekly
Blood test last Summer.Ive always asked for my results its something concrete to look at and sort of then I can see it’s happening and try to make sense of it because at the moment it’s like its all “if ,buts and maybe’s”. I think the worse time is the count down the nearer it comes,in between time it sort of goes away ,I’ll bring it up to have a bit of"worry time "then tell myself to stop bothering and get on with my life because there’s nothing I can do about it ,so I do something I can do…that’s just a few thoughts and I’ve been very glad of this forum .
.Take care too ,@Nichola75@Rammie18
I like the idea put forward by Gemma to send in questions
Bannanacake
Hi @Bannanacake@Nichola75 and @Rammie18 I still get anxious, a yukky feeling in my stomach etc before and during all medical appointments 18 yrs down the line.
I always get copies of my blood tests, my GP makes comments on them and I just look at the items that at not within the ‘normal’ stated ranges and look at their trends.
If anything looked seriously amiss I would contact my GP who could fast track me back to my consultant.
Great questions keep them coming.
I think it would be useful to have some idea of the kind of signs to look out for with regards to your condition deteriorating. Medical staff are not always forthcoming on things like this (especially mine!) and I feel if I understood this better I’d be able to put my case more forcefully instead of being ignored like I am at the moment.
Yes, that’s a problem ,- knowing what to look for. They always asked about my weight (whether I was losing) so I became very conscious of it - to the extent that I got into bad eating habits so as to mask any weight loss. It’s a fine line between 'You mustn’t lose weight’ and ‘You ought to get a pot belly’
I’ve read about watch and wait and can understand why people are nervous as it feels like the medical profession are doing nothing,of course in reality what can they do before something happens?Well they have done something as they have identified the potential threat and are now seeing what it’s going to do if anything?I myself haven’t experienced watch and wait as Mycosis Fungoides, although regarded as indolent (indolent being relative in relation to something that causes you to have amputations!)at least in it’s early stages becoming aggressive in it’s later stages, is disfiguring as it attacks the skin and causes skin infections even in the early stages so it’s always been actively treated as a danger to the life of the host ie/me!I think had it been something where watch and wait was used I’d have been rather cautious about it?
Agree with others; need to understand more about what various blood stats mean - and would be really happy if there was a course on something like Future Learn about blood. Do my (grown up) children have an increased chance of going down with similar. What are treatments - either by type or more specifically. What can we do to help ourselves (Diet?, Sleep? Research?)
Hi Kevan ,yes,I understand your comments ,a fair point to make . The fact I’m on watch and wait is because the Dr’s are aware there is a potential for progression where more investigations can be .I am glad off this, I understand, and the fact that the Dr’s are watching the blood test results is reassuring and a kind of treatment in itself although it is concerning for me and emotionally upsetting because there is nothing I can do to stop it .
I hope you are keeping as well as you can.
Bannanacake
Hi Franko ,I’m sorry to read you feel as though your not being heard ,I totally understand this ,thankfully for me I have been heard and it makes such a difference ,it wasca hard slog.I find the "broken record technique "works really well.I ve looked up any potential changes to be aware of with the help of info from Myeloma Uk and the BCUK support helpline .I’m not in the situation of having had investigations or treatment yet,it must be hard if you’re going through it and your not getting the responses you want from your Team .
I hope you are well just now
Bannanacake
I have 18 yr diagnosis of ET, relatively stable platelets over the years around 420-520 (up to 880) & never had treatment, even aspirin. My first question is does anyone have any idea how realistic it is for me to hope the W&W MPNs etc will be added to the access-to-antivirals list at some point? Maybe that’s not the kind of question you meant though???
The other thing is I read everywhere (including in the BCUK booklet) that people with MPNs should have some sort of support under NHS cancer treatment protocols, including haematology support etc, and I have nothing. I’ve never even had JAK testing or any kind of gene testing since those came about after I’d been signed off into W&W. Should I be pressing for JAK testing etc? Is it necessary?
