Just diagnosed - very worried husband. Long-term survivors please help!

Hi all

Freshly diagnosed at the age of almost 59. My husband is terrified and I keep trying to reassure him that the prognosis is not necessarily the worst.

I read a post earlier from a lady who’d been diagnosed in 2003. It would be very reassuring to hear from more long-term survivors, if possible, please?

Thanks!

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Welcome to the group. Those first few days are very overwhelming aren’t they. I remember reassuring my husband as well whilst trying to wrap my head a round it. I’m glad you found us so we can support you. Can I ask what your diagnosis is? X

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Hi Jackie, a recent diagnosis is a terrible shock for all concerned. Hopefully you and your husband can get some support on this site. May I ask what type of blood cancer you have been diagnosed with, as you may well find someone on here who has been on a similar path. Take care and keep us posted. Jx

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Hi both

Thank you so much for your swift responses. Sorry, I didn’t say - CLL.

My consultant said I was quite young to be diagnosed with this, but not to worry, as I’m not showing any symptoms yet and am pretty fit and healthy.

I feel quite gung-ho about it, but my husband is not as optimistic as me, and always needs hard evidence before he believes anything (laughing out loud emoji).

So glad to have found this forum - really so helpful (love heart emoji).

Thank you!

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Hi,
I was diagnosed with SlL last April aged 53 and was put on watch and wait. My husband was more anxious than me about it. I stayed on ww until November when the SLL was found in my sinuses and by my eye - not very common. I started on FCR in December. I had 3 rounds and it was then stopped because of Coronavirus. I am now back on ww. Any questions please ask. X

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Hi @JackieSouthWales, a great big welcome to our forum, I am so glad you have found us. I am probably the person who was diagnosed with CLL in 2003 at the age of 53, not sure about being a ‘lady’!!
You and your husband have had your world rocked with your diagnosis so please do not underestimate the shock and anxiety levels you might have, my emotions and thoughts were all over the place for a very long time and my anxiety always come back before, during and after medical appointments. I could not explain to my family, friends or work what I did not understand or get my head round myself. Please do look at the Blood Cancer UK website click on ‘Understanding blood cancer’ at the top and you will find CLL under ‘Leukaemia’ and there is lots of information there.
Personally I would say it might help you both if you write down all your questions, practicalities, fears, thoughts, feelings and symptoms for when you see your medical person next. If you feel comfortable it might help if your husband comes with you, but this is your choice, he would then hear the same information as you and he might be able to make notes and ensure you ask all your questions and follow up questions. Some form of treatment might be offered, I would say give yourself time to think before replying or regular blood tests might be suggested, this is often called ‘watch and wait’ or ‘active monitoring’. This helps your medical team see how the blood test results and your symptoms might change over intervals. I have been very fortunate to have been on ‘watch and wait’ for so long and there are many people on this site who have or are having treatment on this site. We are all unique, very special, individuals. It sounds as if I am giving you advice, but it is what I wished I had done in hindsight. Any questions we are all here to support you both and if you need to talk you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk. I would say keep talking and be kind to yourselves, have the odd treats and stay safe.

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Hi Jackie, just checking in on you again, and I can see there have been some replies already :slight_smile: I have CML not CLL, but I think when we get the initial diagnosis it can be such a shock for everyone it’s really hard to get our heads round. Hopefully these accounts here will be helpful for you both, and blood cancer UK has lots of information on all kinds of blood cancers, so gradually you’ll both be able to find some understanding of it all. Take care Jx

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Hi @JackieSouthWales, welcome to the forum. You will find so much support and advice here. A diagnosis such as this is extremely scary and a great shock to the system but I hope my story provides some comfort: I was diagnosed with CLL at age 39, which is very young for this type of blood cancer. I am still here, 23 years later. Compared with when I was diagnosed there are so many new treatments available should your husband need it. My only option at the time was chemotherapy, but there are now treatments which better target the CLL cells and therefore cause less unpleasant side effects. It is quite likely that they will just monitor your husband, so-called ‘watch and wait’. In some cases, no treatment is required, just monitoring. I have been through several treatments over the years and am currently in a clinical trial for one of the new treatments. I am doing well with it. I took up running soon after my first treatment (around 2002) and last year I ran my first marathon. (the London one). This proves it is possible to lead a full and active life. I totally understand what you are going through now and it is definitely not easy, but take heart that many people on this list lead active lives despite their blood cancer.

I hope my message has helped.

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Thank you all so much for your kind words. It really helps to know that you’re there.

Erica and David, it’s reassuring to hear that you’re still both going strong after such a long time. David, apologies if I gave the impression that it’s my husband who’s been diagnosed when it’s actually me. I am also a runner and intend to keep doing it, perhaps moreso!

Everybody, I’m really grateful for your responses and I’m sure I’ll come back with some more questions when I finish work later today.

Thank you! x

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@JackieSouthWales I am so glad you came across this forum, it’s such a supportive and friendly place. Just to let you know, we have information on CLL on this page of our website and also in this CLL information booklet.
We also have these ‘Living Well’ pages for people living with a blood cancer.

If you would like a copy of our CLL booklet posted to you, or if there is any further information we can send you, or if you or your husband ever just want to chat things through, please don’t hesitate to get in touch with us on our support line, as @Erica mentioned :slight_smile:

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Hello JackySouthWales I was diagnosed at 59 too with CLL …Im 71 now and still not needed any treatment …even to the point the consultant is thinking of seeing me every 6 months now rather than every 3 as my levels are relatively stable

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Hi Jackie, I was diagnosed with CLL in late 2013 when I was 53 and had treatment in 2017 participating in the FLAIR trial.
1/ you are doing the right thing in reaching out as this will help you get over the shock and panic that first comes with a diagnosis, it will also help you through the anxiety and depression that is likely to occur as well. Look out for these as they can creep up on you and best nipped in the bud or even headed off if you can.
2/ don’t refer to Dr Google, look for forums like these and info from the charities and of course your health care providers
3/ get your self informed on the cancer, it’s progression/stages and the treatment options, I would definitely counsel looking for a trial based upon my experience.
4/ recognise CLL is mentally debilitating from diagnosis, Watch and worry, through treatment and back into watch and worry. So knowing that get strategies in place now before you get to the dips

If you want to see my story so far here is a video from the charity where I give a talk at the Francis Crick Institute, everyone who has seen it or who was there said it really helped them. Link to YouTube here just copy and paste into your browser if it does not open immediately upon clicking

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Thanks @Mel, great to see you posting on our community forum, your background, knowledge and information will be so useful. Thanks for your video and I was there when you gave your talk at the Francis Crick Institute and it was really appreciated by everyone in the audience, you could see by their faces. I am sure it will be helpful to so many people.

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Hi @JackieSouthWales Sorry for making the false assumption! Great to hear you are a runner, that will help you a lot. I did not take up running until I was 44 but I believe it has literally been a life saver, I am sure that it improves the immune system, though this has yet to be proved scientifically, But I have a lot of anecdotal evidence. Definitely think it is a good idea to prioritise your running. It’s great you reached out for support, and hope you stay well, Very happy to chat again any time.

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I should add Jackie that is natural for your loved ones to also be scared but hopefully he will also take reassurance from these messages. My wife became rather over protective when I was diagnosed, which is also natural. It is the feeling of losing control which is disconcerting, but running is a way to deal positively with it. Apologies, that’s enough about running! You will find lots of people doing all sorts of exercise on this list, from walking, to triathlons and mountain climbing! And this is no accident, we appreciate how important exercise is to fighting back against blood cancer.

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Hi Jackie
I was diagnosed with AML in 2002 and I was 42 yrs old. I then relapsed in 2009 when I was 49. I had a stem cell transplant. The treatment (chemo etc) is very overwhelming. But at the same time, I knew I was under great care. The consultants and nurses were fantastic. The hospital where I was treated also had a great team of helpers to deal with the emotional as well as physical side of things. Just remember that your are in good hands and I don’t doubt that you will get the best treatment. Just keep focused on the positives, yes I know it’s easier said than done, but just stay focused and positive as possible. They will be with you and your family all the way. Next Month I will be 60! Starting to feel my age lol :crazy_face:, but other than that doing ok. I now go once a year for check ups but even then, the support is still there if I need it for whatever reason. So I wish you all the best and try hard to be positive. I actually found that humour worked for me. The nurses were always up for a laugh, and to be honest it helped. :crossed_fingers:

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@Annie78 Hi Annie, I hope you are doing okay? and thank you so much for sharing your experience. It’s so encouraging to hear that your levels have been stable, and sounds like you have able to be well informed by your consultant?

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Hi @Mel it’s so lovely to hear from you, I hope you are doing okay? Thank you so much for your support to Jackie, I have no doubt it will be so helpful to others too. You make such important points. As you say, Mel, making sure we are looking at reliable and accurate information, and not being afraid to reach out are two of many things which are so vital.

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Hi @DavidAmbassador and @Clilau1960 I hope you are both doing okay? and thank you so much for your support to Jackie.

@Clilau1960 it’s so encouraging to hear about your experience, as you say we can only imagine the difference it makes having a supportive treatment team, who also focus on your mental health too.

@DavidAmbassador Like you say, David, it can be just as tough on friends and family too, which why we always strongly encourage people to see this forum as very much a place for them too :slight_smile:

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Hi Jackie - I was diagnosed with CLL I think 11 years ago now, when I was just 50. I’m now 61, and doing fine, living a normal life, until the pandemic happened! In fact it wasn’t till then that I bothered to ‘come out’ about my CLL really. No-one knew apart from medics and a few close friends from diagnosis times. It seems I’d actually had it for a while before diagnosis, but that they’d forgotten to ask me to repeat a blood test. I’m glad I didn’t know earlier, actually.

In my experience the first months, maybe year or so are the worst. They’re scary because you don’t know what your rate of progression is, or so what the impact is going to be. Once you know that I think it’s easier. Apparently only 50% of us ever need treatment (mind you the average age of diagnosis is older).

Be gentle with yourself (and your husband). Do ask for print outs of all your blood tests. I put mine in a graph. I don’t understand it all but I can see the rate of rise with my own eyes, and thankfully it’s slow. Hopefully you’ll join the watch and wait gang, with annual blood tests and a normal (if slightly cautious) long life. Treatments (if you need them) are very good and getting better. The consultant on the CLL webinar yesterday was saying that CLL isn’t something that needs to affect life expectancy for most people nowadays. Hope that helps! :slight_smile:

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