For anyone not aware of what this is… some people diagnosed with blood cancer don’t need treatment straight away. They will have regular tests to keep an eye on things. This can feel positive, but it can come with many difficult feelings, such as anxiety and uncertainty. You can find out more about it here: Active monitoring (watch and wait) | Blood Cancer UK
There are lots of things you can do to help manage your worries and live well with blood cancer while on active monitoring
We want this to be a space to ask our @BloodCancerUK_Nurses any questions you may have, share your experiences and seek support with anything that may be concerning you. So please do comment/ ask away.
FYI - Our previous Ask the Nurses topics have included Fatigue, Infection and Eating Well with Blood Cancer. You can also click on the ATN tag at the top of this post to find them.
Hi
I have only been on active monitoring (watch and worry) since my diagnosis of stage 2 follicular lymphoma in September 2024. I found it very hard at first with all sorts of thoughts and feelings on my mind 24/7, I found i was checking myself everyday, getting frustrated at seeing different haematologists and feeling dismissed with any questions I had at appointnents. Even though they told me it was slow growing and my bloods were completely normal it didnt seem to sink in.
At my last appointment before christmas I was offered counselling where I was also offered to join the haematology support group which I was reluctant to do but, so far I am happy I have come out of my comfort zone and attended.
For the first time since my diagnosis I feel am getting used to being on active monitoring. I have the chance to learn as much as possible about my condition and keep myself as healthy as possible if and when treatment is needed. I know it is not going to be easy and I know there will be good and bad days, but I also know I have support from family/support group, also here on this platform and the hospital.
Hi @Mike_69 thanks so much for your post and your experiences.
It is a big step coming out of your comfort zone.
I think it really helped me knowing that I was not the only one with the thoughts and feelings I was having.
I found medical speak completely alien to me.
I was diagnosed 21 yrs ago and I am on active monitoring.
I was going to say how fortunate you are to have a haematology support group at your hospital and I just checked my hospital and to my surprise they also have a group !!!
Yep, I certainly have good and bad days, up’s and down’s etc.
My thoughts and emotions can be conflicting and completely illogical, but they are mine.
Thanks for your post and I encourage others to check their hospitals websites.
I have Polycythaemia vera (PV) and was diagnosed in March 2023. I am effectively on Active Monitoring but it hasn’t been that active recently!
When I was first diagnosed, I had a series of appointments to have venesections and to find out how to best treat me. I was then seen every month for a period, and when I was stable was seen every 3 months for blood tests, with my last venesection was in July 2023.
My last appointment was in early June 2024 when I was told I would be seen in 3 months’ time. When I hadn’t heard anything by the end of September 2024 I telephoned only to be told that Haematology had a backlog and that I was on an outpatients waiting list. I was told to bear with them and that they would be in touch in due course.
In January 2025 I started getting symptoms (mainly headaches and blurred vision) and realised that my Polycythaemia vera (PV) flared up again. After going to my GP on 29.01.25 (who then proceeded to misread my blood test results and deem I was fine); phoning 111 on 31.01.25 for advice (who advised going to A&E as my “symptoms shouldn’t be ignored”); going to A&E and being admitted for a night on 31.01.25 (with a CT scan and venogram being done on 31.01.25 & 01.02.25), I finally had a venesection on Monday (10.02.25). I was then given a “follow-up” appointment by Haematology for 19.03.25, but I challenged this as that is 5 weeks away and we don’t yet know if the venesection has been successful in bringing down my levels to an acceptable status. The appointment has now been brought forward to 18.02.25 (next Tuesday) so I will finally see Haematology after a period of 8 months of not being seen or monitored.
I will naturally be raising these issues with my Consultant on Tuesday, as I appear to have fallen through the cracks simply by virtue of me being stable for some time. The issue is that my condition can change very quickly and without regular monitoring it’s a bit of a gamble with my health to just leave me to it and only be told see your GP (who can only refer me back to Haematology) or go to A&E (who can’t give me a venesection).
The NHS is supposed to be preventative, not reactive and sadly this is not happening even when you’re supposed to be on Active Monitoring. As it is, I have now had headaches every single day for a month as my HCT level was 0.51 (threshold is 0.45) and this would have been picked up and dealt with much sooner if I had actually been being monitored and with far less cost to the NHS as it would not have necessitated an admission or any of the other tests that they did whilst I was in hospital.
I am left with little faith in my healthcare team, and with huge anxiety and stress as I am still adjusting to life with a blood cancer and feel as if I have been left to my own devices and given no support at all.
I just wanted to piggyback on comments @CarolineL made about Polycythaemia vera (PV) by asking if living with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET) whilst having regular blood testing is considered active monitoring by blood cancer specialists such as yourselves? It’s not something I’ve heard about my Polycythaemia vera (PV) from specialists (maybe it’s not a term used in the US, I’ll ask next time) but I have thought before that my treatments are akin to watch and wait. Maybe the typical ongoing treatments for Myeloproliferative neoplasms (MPN) are a little too complex to be considered active monitoring?
Hello @CarolineL
Thank you for taking the time to post about your experience of Active Monitoring.
I’m so sorry to read that your blood counts have not been monitored regularly, and because of this you had to stay in hospital with extra tests, as well as a month of headaches too. I do hope this never happens again for you.
It’s good to know that you have managed to have a venesection appointment this week and now only have a week to wait until you speak to a Haematologist, and not 5 weeks.
I am sure you will, but do ask if they can outline time frames for blood tests (for example every 3, 4 or 6 months) and who will be following these up (will it be the specialist nurse, GP or Haematology Doctor) in the future, and also who you call or contact if you have worsening symptoms.
You could ask for any communication to your GP to also be CC’d and sent to you; as some patient’s blood tests get missed if a letter goes to the GP, and the GP practice presumes the patient is aware of when blood tests are needed so doesn’t get in touch.
You may find it helpful to start and take along a symptom diary, this can help to open up conversations around symptom control in the appointments, something like this type (there are others): MPN Symptom tracker
If you think the communicating with your Haematology team may be difficult, do have a read of this page on Myeloproliferative neoplasms (MPN) Voice website: MPNVoice/talking-with-your-doctorit’s a really helpful page with tips and suggestions.
I’m sorry for the stress and anxiety that this has caused, on top of the Polycythaemia vera (PV) diagnosis, please know that you’d be more than welcome to call our support line at any time, if you have any questions or concerns regarding your diagnosis 0808 2080 888.
Take care, Heidi.
What a great question, and something I hadn’t considered before - is Myeloproliferative neoplasms (MPN) monitoring consider ‘Active Monitoring’?
Personally I don’t think it is, as many people take medication, even Aspirin or venesections, which needs closer and more regular monitoring.
Watch and Wait is an old term, that really meant “we’ll watch what is happening with your blood counts with ‘regular’ testing, and wait until they are at a certain level then we’ll need to give treatment”.
Often the types of blood cancers that fall into the Active Monitoring (or Watch and Wait) are slow growing or chronic types, like Chronic lymphocytic leukaemia (CLL), sometimes Low grade Lymphomas like Follicular Lymphoma, Waldenström macroglobulinaemia (WM), Smouldering Myeloma, and Hairy Cell Leukaemia. Regular testing will depend on the individual, the diagnosis type and local Trust policies, as there is no standardisation of this across the UK.
MPNs will have increases in blood counts at a ‘faster’ rate, and due to the risk factors of thrombosis events it’s always better to start treatment than ‘wait’.
The difficulty with MPNs is knowing how often blood tests need to be taken. Usually for the first 6 months after a diagnosis the tests can be fortnightly, 4 weekly or 8 weekly - this will depend on the Myeloproliferative neoplasms (MPN) type, the risk level, the blood counts at diagnosis and the dose/type of treatment started. Some people have very high counts at diagnosis, some people have slightly raised counts, some people are very sensitive to treatment and others need higher doses to bring counts down. Blood monitoring is not an exact science, it is an ‘art’ that comes with experience of recognising and predicting patterns in the numbers over a certain amount of time (but don’t tell any Consultants that I said that ).
Often after a year or two the blood tests can be done 12 weekly, (usually this falls in line with a 3 monthly prescription allowance in the UK, however for Polycythaemia vera (PV) patients this is where they ‘slip through the net’ if they are not on medication and only have venesections) and sometimes patients recognise their own symptoms and alert their Doctor and have bloods sooner.
Unfortunately in the UK the pressures and staff shortages within the NHS mean that communication is not as good as it once was/should be, that patients are not being followed up as frequently and if they do have an appointment it may be a quick 5-10 minute phone call, which is not enough time to discuss blood results, symptoms or follow up plans.
Some GPs are now taking on the Active Monitoring patients, instead of Haematologists, by doing 6 monthly or annual blood testing with the guidance and advice from Haematology teams on when to refer back in to them, depending on blood test results or symptom changes.
As you can tell from all of this information it is not easy to standardise monitoring of blood results, there is some loose guidance but it’s always best to ask your Consultant or CNS when or how often you need blood tests taking, and if you don’t know then call them and ask, or get them to send copies of your appointment letters to you as well as the GP.
That was a bit of a long answer, sorry, I hope it makes some sense.
Best wishes, Heidi.
Dear @Heidi_BloodCancerUK, thank you so, so much for your in-depth and fascinating response. You always share such interesting information—it’s very reassuring and makes lots of sense.
I’d agree that taking medicines and having phlebotomy, as we tend to need with Myeloproliferative neoplasms (MPN), makes them less ‘active monitoring’ and more actual treatment. Hard to believe how at ease I must be now with taking hydroxyurea! These days it’s usually when I tell others I’m taking chemotherapy and I see their eyes widen that I’m like oh yes, I take scary-sounding chemo!
It’s really helpful to think of treatments for Myeloproliferative neoplasms (MPN) in the ways you describe. The fact there’s no standardisation of treatments for them around the UK makes sense of why forum members with Myeloproliferative neoplasms (MPN) seem to have such varying experiences with frequency of blood testing and so on.
How interesting that some GPs are taking on the active monitoring for those diagnosed with Myeloproliferative neoplasms (MPN). I can see how that might help keep some of us and our treatments in mind as GPs tend to our general healthcare and referrals anyway. Sometimes I wonder if I would have been tested for the JAK2 gene mutation if I still lived where I did
From my experience of training and working in the NHS sadly I understand the issues with understaffing around the UK, and as a patient really empathise with people whose care has slipped through the cracks. Keeping my fingers crossed for improvements and more joined-up care!
Hopefully the NHS app I’ve read forum members talk about can be rolled out to everyone. Personally, being able to check and compare my own test results online is super helpful and actually relieves a lot of my health anxiety. Admittedly, mine is a different healthcare system to the NHS, but is perhaps a similar online system. Being able to simply open an app and email specialists with non-urgent queries and follow along with my own test results is very empowering. I imagine it takes up less time (and NHS funding) than phone calls to and fro.
Who’d have thought taking chemotherapy capsules could come to feel so mundane—my pre-diagnosis self, blissfully ignorant of blood cancers, would no doubt be surprised!
Being able to ask specialists such as yourself @Heidi_BloodCancerUK is also very reassuring, so thank you sincerely for taking the time to share your expertise, and for working at BCUK! We’re very lucky to have you and your colleagues.
@Heidi_BloodCancerUK Thank you so much for this advice. I will be raising all these issues at my Haematology appointment tomorrow and will hopefully get a better plan in place. I appreciate that the NHS is under immense pressure, but incidents like this simply add to that pressure and result in wasted resources and more expense. Fingers crossed I get some satisfactory answers from my Consultant and/or PALS!
@Heidi_BloodCancerUK Just wanted to give a quick update on my Consultant appointment yesterday.
My Consultant was not happy at all that I had not been seen for 8 months, or that the urgent referral at the end of January had not been picked up on by her team. She explained that the very experienced CNS had retired in August last year and despite giving 12 months notice, she was not replaced until after she left and the two replacement nurses are inexperienced and on a steep learning curve. My Consultant said it absolute “nonsense” for staff to tell me to go to my GP in order to get a Haematology appointment and that it was “a backward way of doing things.”
She is going to investigate some of the issues I raised and bring them up at department/internal meetings as she said my treatment is so simple (blood thinners, regular blood tests, and venesections) and that everyone seemed to be making it far more complicated than it needed to be. She also noted that I had no point of contact so when things did go wrong then I had no path to follow other than GP or A&E.
I asked the questions above as advised by yourself, and my Consultant has now come up with a solid treatment plan - 3 monthly blood tests (to be carried out by the suite where I have my venesections as she said it was pointless to attend clinic only for her to say everything was fine), 6 monthly clinic appointments with my Consultant, and venesections as needed (she said every 3 months, but prior to the venesection in February my levels have been stable and under my threshold since July 2023 so I don’t feel this will be necessary). We both agreed that this was the best course of action, and she said that if I have any further issues to leave a message for her at Haematology and that she would pursue this for me. I also made sure to repeat everything she had said at the end of the appointment to confirm understanding and to reiterate the plan.
The great thing with my Consultant is that she really does listen and she understands exactly what you are saying to her and repeats it back to you so you know she is listening. I’m fortunate that I don’t need to actually speak to a Doctor very often, as I’m generally stable with my medication and general healthy lifestyle, and I can pretty much be left to my own devices as long as my blood tests are actually happening and I am being tracked.
Actually being listened to and having a voice in my own healthcare makes such a difference, but going in with the questions you suggested really helped me focus on the information I needed to garner and the outcome I wanted, so thank you for that as it was so helpful.
Fingers crossed that coming up to May, I get an appointment and all goes smoothly as I really don’t want to have to fight for basic care all over again!
Hi, my Mother had recently been diagnosed with nlp HL, localised 2A stage. Surgery has completed but post PET there is some localised residue. We are having trouble deciding on weighing up the wait and watch approach and RT for her as she’s otherwise in good health. Guidance appreciated as there’s not much data/information on risks v benefits of either approach.
Hi @Kay3 a great big welcome to our forum and I am really glad that you have found us.
I think it is so difficult for your mother and you to be offered 2 unknown options
What you might want to consider is ringing the Blood Cancer Support line nurses and having a chat with them on 0808 2080 888.
I like to write down all my questions first so I cover everything.
I also attach for you from the Blood Cancer UK website details on active monitoring (watch and wait) Active monitoring (watch and wait) | Blood Cancer UK
and treatment options
[Blood cancer treatment types | Blood Cancer UK]
which might help as well(Blood cancer treatment types | Blood Cancer UK)
I hope others will share their experiences for you
Please do let us know how you get on and really look after yourselves
Hi @Kay3
Welcome to our forum & thank you for your post.
We are sorry to hear about your mother’s diagnosis of NLPHL.
It can be difficult to weigh up different options and it may be helpful to create a list to help when doing this. Ideally, your mother should speak with her haematology specialist nurse and/ or consultant to help make this decision together.
The pages that Erica has suggested on active monitoring & different types of treatment will be helpful to read over to find out more about what these processes entail.
Feeling and being sick if brain, stomach or bowel is treated
Diarrhoea or urinary changes if tummy or pelvis area is treated
Hair loss in areas of the body that is treated
Reduced fertility if treatment is given to pelvic area
There aren’t any side effects to W&W, however it is not uncommon for people to feel anxious when they are put on ‘watch and wait’. In certain cases of blood cancer, there is no evidence to suggest that commencing treatment will improve outcomes, especially if you are asymptomatic.
It may be useful if your Mother keeps a symptom diary as this can also help determine the best route for a treatment plan. Doctors may recommend treatment at a later stage when it is ‘most needed’/ going to have the best impact and also means avoiding potential side effects of treatment for as long as they can. Instead, they often monitor patients through regular check-ups and blood tests which is known as ‘watch and wait’ but can also be called ‘active monitoring’.
However, as your Mother has already had surgery, radiotherapy may have been suggested to target these ‘residual areas’, but we understand making these decisions can be difficult. By speaking with the team further they should be able to provide you with a list themselves of benefits vs risk and will also take into account your Mother’s preferences too.
If you would like to talk things through with a member of our team, please get in touch on 0808 2080 888.
Thank you so much and glad I found this forum to help guide us. Mum and I will be sitting down to go through options and pros and cons to list out questions and yes will definitely call you in a few days time. Thanks for all the information you sent. Grateful for your time
Thank you very much for this very comprehensive guidance, Mum and I will go through these points and discuss best option for her. Will be in touch soon - grateful for your time
My dad was diagnosed with Chronic lymphocytic leukaemia (CLL) in February 2024 at age 61. He is currently on watch and wait, he seems to be getting severe systoms which is increasingly concerning but the consultant has stated that his blood count is still extremely low so they don’t want to start any treatment. His spleen or lymph nodes are normal/not enlarged.
His symptoms are
Itchy red spots have formed all over his body to the point of skin lesions/ scabs and blisters appearing. These are due to him being unable to stop scratching. He is particularly itchy on his stomach, back, arms, his entire head including in his hair line. He has also scratched the skin on his foot to the point that he has blistered and started to scab over. Additionally spots are forming under the skin which are not red but are also itchy. This symptom has been occurring since 2019 (to a lesser degree) when the doctors believe his Chronic lymphocytic leukaemia (CLL) became active and started to slowly increase his blood count.
Severe fatigue, he has stated his legs feel like lead/to heavy to walk.
Minor memory issues/lack of recollection for some words but very rare. His memory appears to be worse when he is exhausted.
Sleep deprivation - craving sleep, sleeping alot through the day and being awake all through the night. When he does sleep through the night, he has night sweats and overheats.
Muscle tremors - his arms, legs and hands can shake and he has no control to stop it.
If he is asleep and wakes up it causes an erratic heart beat/ heart flutter each time he wakes. It’s worse if he is jolted awake. His heart rate settles down after 5/10 minutes.
Vomiting for 30 minutes plus - this is several times a week.
Pain in side/abdominal pain.
Lack of appetite but is also gaining weight, possibly due to inactivity
Shallow but fast breathing
Lack of smell, and taste, only very sweet or spicy be be detected.
He is either really cold or red hot. The switch can be within seconds with no change in temperature for anyone else.
Overall low quality of life due to above.
Has anyone else had similar symptoms? because my family are considering pushing for a treatment to be started with a hope to alleviate the symptoms. We don’t know which treatment option would be suitable yet.
For more context, the GP originally thought my dad had long Covid symptoms and he was going to the GP for regular blood tests, the diagnosis took around 2 years because his blood count was so low.
Our family have suggested speaking with another consultant or specialist but my dad seems reluctant to speak to another consultant due to the dismissive behaviour of his current doctor.
His current consultant hasn’t discussed treatment options for his Chronic lymphocytic leukaemia (CLL) (even though my dad has been diagnosed for over 1 year) and seems to believe that my dad’s symptoms are not related to his Chronic lymphocytic leukaemia (CLL) because of his low blood count.
My dad feels like there is no hope for his future as he thinks he will only deteriorate further before his consultant will be prepared to intervene/begin treatment.
My dad’s main issue is the itchy skin/lesions, as it’s a constant, and an awful reminder for his future outlook. Do you have any treatment suggestions for the itchy skin? my dad has a GP appointment on Friday.
Oh, @Cassiebear28 I can really feel your care and concern for your dad come from your post. A great big welcome.
I am thinking more and more what complex individuals, with unique medical histories we all are and you have shown that briefly as your dad might have long covid.
Personally I also think generic symptoms are so difficult to diagnose.
Perhaps wait and see what what your dad’s GP says on Friday.
You have a clear list of your dad’s symptoms here with their severity for Friday.
Perhaps as a family you can write down all your fears, questions and practicalities.
Perhaps suggest to your dad that one of you goes with him as a note taker and that he is pleasantly assertive and make sure that you get answers that you can understand.
If he is not satisfied he might consider asking to a referral to a specialist (s).
Perhaps just take it a day at a time, I know it is so hard, but I have Chronic lymphocytic leukaemia (CLL) and I am on active monitoring (watch and wait)
Every time I get a lump or bump or other symptom I think it is my Chronic lymphocytic leukaemia (CLL), often it is not.
All tests are to rule things in or out.
Be kind to and really look after yourselves and please do keep posting.
I am sorry to hear about all the symptoms your dad has been experiencing., It is completely understandable that you are worried.
Do you mind me asking if you know what stage of Chronic lymphocytic leukaemia (CLL) your dad has or if this has every been mentioned. The main symptoms of Chronic lymphocytic leukaemia (CLL) are general fatigue, drenching night sweats, fevers and chills and weight loss. You have mentioned that your dad has most of these. Has he had any investigations into the abdominal pain and vomiting? Also, any cardiac investigations for the erratic heart beat/flutter? If not, I would suggest discussing this with your GP tomorrow. There may be other things going on, not related to the Chronic lymphocytic leukaemia (CLL) but nevertheless, they need to be investigated.
In regards to his itchy skin, whilst this is not normally a known symptom of Chronic lymphocytic leukaemia (CLL). It needs to be investigated. I would suggest also discussing this with your GP on Friday and suggesting a referral to a dermatologist, if this has not been done so already.
Many people will not need to start treatment for Chronic lymphocytic leukaemia (CLL) straight away. Treatment is normally recommended for a number of reasons including when the lymph glands are swollen and pressing on organs within the body causing pain and discomfort. When the lymphocyte count doubles over a period of time and is affecting the HB and platelet count. If may also be suggested when a person is experiencing extreme fatigue that is affecting their ability to cope.
If your dads consultants believes that your dads symptoms are not due to his Chronic lymphocytic leukaemia (CLL). Have they looked into other causes of his symptoms? Has your dad had recent blood tests? I would suggest discussing your concerns with your dads CNS if he has one and also your GP. Alternatively, you could request to a second opinion.
If it would be helpful to talk this through in more detail, please don’t hesitate to give our Support Line a call. We would be very happy to talk this through with you. The number is 0808 2080 888. It is open until 4pm today.
Please let us know how you get on.
Kind regards
Fiona (support services nurse)
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