Hi, has anyone who has CLL been treated straight away or was everyone on watch and wait to start with ?
Hi, I think there is a mixture of immediate treatment and others going on to a watch and wait regime. I think we are all unique, special individuals and so many factors are taken into account so treatment can be really targeted. I have a feeling there is a reason you are asking this question?
Hi @Erica, just curious really and trying to work out the odds ! I feel pretty rough but don’t know if that has any bearing on whether or not I will need treatment. Just feeling frustrated waiting
Oh, the waiting and the not knowing are the worst things. On the Bloodwise website there is a lot of information on CLL, the side effects, watch and wait and treatment options. What I found helped me was to write down all my side effects and trying to describe what feeling pretty rough felt like. Look at the list of side effects on the website as you might not think of some as being related or significant, mine included weight loss, hot sweats and an unpredictable thermostat, miscellaneous infections, fatigue and feeling flu like. I have been a very lucky girl and always been on ‘watch and wait’, which means my symptoms have not gone away but I have learnt to accept and manage them. The weight loss stopped and my GP has given me an emergency pack of antibiotics and a urine sample pack so I can catch infections early and I can do something before I can get a GP appointment. I accept my unpredictable thermostat. I have really got to know myself and have found my fatigue can come on immediately or up to 48 hrs after I have overdone it emotionally or physically. I also do not deal well with what personally stresses me emotionally or physically well now and it suddenly gets all too much and I am also far more emotional. I have chosen not to do evenings now and I am a lady that lunches. I personally feel fresh air, a slightly healthier diet, appropriate exercise and interactions with people helps me. I also have the odd nap and treat myself occasionally. If you need to contact the Bloodwise Support Services, please call 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at firstname.lastname@example.org. Please do let us know how you are and get on.
I was diagnosed with CLL in Feb last year and had to start chemo in the April as I was already at an advanced stage. Treatment is usually determined by the stage you are on at diagnosis, plus they consider symptoms eg night sweats, breathlessness and your Hb etc.
If you are concerned you could ask your Consultant/CNS which stage you are and what are the likely factors that will determine when you need treatment.
If you are feeling rough, explain your symptoms to the Consultant too, even if you don’t think they are related.
I’m now on ‘Watch and Wait’ having had a good response to the FCR (chemo treatment) which consisted of 6 cycles of chemo, which I finished last September. I’m still struggling with fatigue, but other symptoms have improved.
Watch and wait’ takes some getting used to I think, as you feel like you are constantly waiting for something to deteriorate or wondering how long before you will need treatment. I am now trying to make the most of each day and not think about when I’ll need treatment. Regular blood tests/checkups will indicate when your condition is deteriorating, and therefore the likelihood of needing treatment.
Hope this is if some help.
Very useful, thank you.
Thank you for sharing your experience @Gillian281 it is invaluable to those diagnosed and needing treatment. I am so pleased to read you are well, I’m sorry to hear you’re struggling with fatigue though. How does watch & wait feel, following being treated?
@SP7 Stella, do you know how long you will be waiting to see the consultant and discuss any treatment plan?
I have mixed feelings about 'Watch and Wait’. There are times when I think I will just get on with life and not think about the future in terms of needing more treatment again. There are other times when I feel kind of in ‘limbo land’, wondering how soon I will need treatment again and if I will improve any further than my current state. I’m now 7 months post last chemo, but still struggle with the fatigue and ‘chemo brain’. I find that a lot of people don’t understand that my CLL is incurable and think that because I’ve finished chemo I’m fine now, especially as I have returned to work.
Hi, I have my haematology appointment on Monday, it has been a long wait!
Please do tell us all about how your haematology appointment on Monday goes, oh, I hate the waiting too. Take care.
Hi Gillian, after 15 yrs on watch and wait I have managed to change my mindset from ‘watch and worry about what the future holds’ to ‘watch and wait and be grateful for every day I stay on watch and wait’. But I have to say it has taken a very, very long time and I do still worry about the future especial around medical appointments. Yes, it is limbo land, but hey ho. You are also right that people just do not understand that CLL and other conditions are incurable but treatable and they expect us to be fine after treatment and normality has returned. I was not able to say my needs to family, friends and work which I regret, I think I expected them to guess. How is it being back at work?
Hi Erica, it has been good to return to work in terms of ‘distraction therapy’ - gives you something different to think about other than blood results, symptoms and treatment! But I have struggled with the frustration of ‘chemo brain’ - tasks which I have done for the past 20 years I suddenly forget how to do or can’t recall names/numbers etc. Fatigue still remains an issue and as a result I’m finding working 5 days in a stretch quite hard. I have been taking an annual leave day most weeks, to provide a ‘rest day’ mid week. I often have difficulties sleeping too - hence I am writing this at midnight!
My colleagues were generally very supportive during my chemo, but most of them do not appreciate 'Watch and Wait’. They think that now my chemo is over and I’m back to work I’m ok.
I think in general, many people do not recognise/understand that Leukaemia is a cancer and how it affects you.
Hi Gillian, there are about 137 Blood cancers, it is the 5th largest collective cancer and the 3rd largest killer, stark figures, but that says it all. Personally I did not understand fatigue until I experienced it, so how could I expect others to. My fatigue comes on either immediately or up to 48 hrs later than I have overdone it emotionally or physically. I do not deal with what personally stresses me well now. Feeling I had chemo brain and the frustrations around it would be a real stress factor to me and add to my fatigue. I did the same as you and took holiday and time in lieu, which I had luckily accrued, to get me through the week. As I said before I found it very difficult to say my needs at work, but retrospectively and physically and emotionally it would have been better for all if I had been able to work 4 days a week more productively and also keep hold of my holiday to have a real break as well. Looking back I think I did actually ask and was told I could not do it in my pivotal role and then a couple of years later when I was made redundant that meant my role went as well. Stress also means I do not sleep well, when I need it most. Take it steady and spoil yourself sometimes you are worth itl and really strong to have gone through what you have.
Hi Erica and Gillian,
Having Lupus means I am used to fatigue. I am a special needs teacher and I know when a holiday is due as my body slows down and my joint pain increases. However from Sept/Oct onwards I had infection after infection and the fatigue syptepped up a gear. I had more time off in that term up to Christmas than I had in the previous four years. I made the decision to cut down a day and now don’t work on a Wednesday. School had previously arranged for me to have my non contact time at home on Thursday and Friday afternoons so I am already lucky in terms of work.
Hi and also to @Gillian281 I forgot to add that my heart really goes out to everyone who is really struggling health wise emotionally and physically because their employers are not caring, accommodating, the constraints of the role makes it ‘impossible’, they are on zero hour contracts and need to show reliability and timekeeping to get the work and the biggest of all financial constraints. If there are any of you out there I have heard Macmillan or the Citizens Advice might be of assistance.
So I saw haematology today and have SLL. I need to have full CT scan to work out staging (I had only had chest CT) Most likely to be put on watch and wait.
Hi, thanks so much for letting us know how you got on today. There are a lot of posts on this community forum about being on watch and wait. Personally, I am so grateful to be on watch and wait and long may it continue. However, even after 15 yrs, I still get apprehensive around all medical appointments. How are you feeling after the appointment? Also let us know how the CT scan goes, please.
How are you feeling since you saw the haematologist and were given your diagnosis @SP7? I hope you’re doing okay and feel well informed & supported?
Hi, I am feeling a little more relieved having things explained by the haematologist. I would like to get the scan ASAP but it can take 2 weeks and then it will be another 2 weeks before I see her again, so more waiting! However as I said having a bit more information makes it easier. Will let you know when I get the scan. It has been really helpful to have people who understand to talk to.
As I keep on saying the waiting is the worst, please keep posting how you are doing and feeling.