UK CLL Forum, UKCLLFORUM

My Dad has been diagnosed with CLL

Topic Made On: Nov 28, 2014 07:14pm
sunshinefrankie83

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Hi all,

My Dad was diagnosed with CLL last Friday. They picked it up during a fairly routine blood test so it's come as a massive shock. He's 61 and the doctor thinks he may have had it for a few years already. He's due a CT scan but hasn't had it yet. The doctor said that he has an enlarged (didn't say how enlarged) spleen and his WBC is 150. We're all terrified and I'm so anxious about what the future holds for him and us as a family. He's being incredibly brave while all I feel like (and mostly am) doing is sobbing. We have another appointment on 12th. Not sure if he will prescribe treatment then or whether Dad will be on watch and wait. I'm so upset and any advice/guidance/support would be massively appreciated. Hope you are all doing well and wish you all the best x




Replied On: Nov 29, 2014 08:07am
jkstapley

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I too was diagnosed after a routine mammagram in 2008 the shock was numbing to say the least i was then 59 years old, and was a carer for my 90 year old father who lived with us. I was told that my blood had been "funny" when id had a blood test following an infection in 2000 but it wasnt followed up then. I started FCR february 2009 4 days after burying my dad. It went well and i had very little side effects apart from severe skin irritations. I have been clear for five years although my blood count is now rising again albeit slowly. My specialist said that as i had a slow developing CLL. Evidence has shown that this was the good type as I should not need treatment after FCR for at least 7 years. This seems to be true and I hope its the same type for your father. Just be there to support him. I could not have been through it all without the love and support of my family, once the diagnosis was made and lots of tears shed We all sat and talked eeven the grandaughters who were 5 & 7 at the time joined in and it helped us come to terms with the condition and face the future together



Replied On: Nov 29, 2014 11:04am
steve y

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Hi,
Sorry your Dad and family have received this news recently.
I too was diagnosed after a routine blood test,that was October 2013, my partner had noticed my glands on my neck had been raised for some time and other than feeling tired during the past year, i felt perfectly fine. I just thought at 55, I was getting old !
Until then i was at the gym three times a week, swimming weekends and playing Badminton once a week, as well as my circuit training, so I was leading a pretty healthy lifestyle.
I remember my doctor telling me i was doing all the right lifestyle things but as he said " you cant beat the roll of that genetic dice".

I was told by my consultant that i may not need treatment for a year or two but as things progressed and my WBC doubled in 6 months, past 200 plus my spleen enlarged by 4 cms and other lymph nodes, ,groin, armpits etc, I was told I should start treatment sooner rather than later.
I started FCR treatment around June this year and have this week finished my 4th round of chemo.Two more to go, unfortunately my fifth starts the 23 December so looks like I am going to feel like I have had a few drinks, without even touching the stuff !
Everyone reacts different to the chemo, for me , I had trouble with the Rituximab infusion, which I am told is uncommon, the next month I was given it over a 12 hr period, instead of the 3-4 hrs, normally in the day unit. All went well so last week I was back in the day unit taking the Rituximab infusion over the 3-4 hrs again, luckily all went well this time, i can honestly say apart from the boredom of sitting there 4 hours, i wouldn't have known i had it but as i say, everyone is different.
As well as the infusion for FCR you usually go home with 3 days worth of chemo tablets and the antiviral, antibacterial, anti sickness tablets.
To me, a bit of change as one previously who hated taking a Paracetomol.
The chemo tablets,well again everyone is different but to me it is like having a very boozy weekend and suffering the effects, which to be honest in my case means feeling a bit queezy, tired, off my food for perhaps a day but it doesn't last long, i usually take up to 5 days off work.
My Partner says It is like I am in a bit of a fog for a few days but she is very supportive and understanding which helps a lot.

If I was to give advice it would be.

1) Be careful, while you are on chemo and up to a couple of weeks after, until your blood counts normalize, you are vulnerable to infections. I have, 2 months ago, spent 6 nights in hospital because i became complacent about taking my temperature, picked up an infection and was on strong antibiotics for a few days. If I go to the shops/hospital/supermarket, i take a pair of disposable gloves, (hate touching those pin machines now), i also use a antiviral/antibacterial foam, at home and in my car for doing dirty jobs, around bins etc. So just be aware and sensible. I find this last month testing with so many colds and bugs about. Dont invite people around if they have a cold or bug. I actually had this months chemo while I had a cold but seem ok so far.

2) My partner and I set up treats for ourselves for when I am well, between treatments, might be a meal out or weekend away but something to look forward too.

3)Having family around that are supportive and understand helps a lot and don,t be afraid to put of friends popping around if they are not well.If they are true friends, they will understand.

I had a CT scan before treatment, this is standard to check your organs etc are healthy and part of ruling out any unforeseen complications. I am due to have my second one in two weeks i suppose to see if my spleen has shrunk , which i am told it has and to compare before and after chemo.
Incidentally my spleen enlarging didn't really cause me discomfort, I only felt it when the Consultant poked it around.
Hope I have given you at least some insight but remember everyone is different. It has certainly helped me determine in life ,what is important and what is not and intend enjoying my hopefully long and trouble free years once my last chemo is finished, in February next year.

Best wishes to you and your family, stay positive

Steve
Coventry



Replied On: Nov 29, 2014 12:00pm
kestrel

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I remember only to well when I was diagnosed with CLL.which was in 2002.It came as a great shock to both me and my family.The waves of emotion are all the things that are happening to your father and his family.Firstly let me say try to understand this illness,and remember that without the knowledge of CLL all sorts of panic flows through your mind.This is normal,but remember your not alone.Please always ask questions both from the specialists and of people within this forum.All of us who have CLL have had to come to terms with its effects on our lives.Remember lots of us are still surviving well even after being diagnosed over a decade later.The new treatments that are around are amazing.It would be my advice not to allow all your conversations with your father to be all about the CLL remember he didn't know he had CLL until the diagnosis and life was pretty normal till then.So remember to enjoy life and all it has to offer.I understand your concerns about your fathers health?It's important to be strong and supportive ,and don't treat him any different to the way you did before the diagnosis.Regards Lee



Replied On: Nov 29, 2014 03:30pm
Kevin

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Hi sunshinefrankie83

So sorry to hear about your father's CLL diagnosis. Like your father I was diagnosed after a routine blood test because I was feeling run down and tired. That was in 2008 when I was 54, and again like your father the CLL had probably been with me for a few years. The more you study CLL the more you will realise how different it can be for individual patients, so there are no hard and fast treatment regimens or do's and don'ts. Your father's haematologist will know a lot more after the CT scan.
It's hard to know what to say to patients and their family to try and put their minds at rest. CLL is normally very slow in progression and many patients live long lives with it. Over the last couple of years there have been tremendous breakthroughs with new treatments for CLL, especially with non-chemo types. This fact alone gives us a lot to be positive about.
In my case I had swollen lymph nodes at diagnosis but no spleen enlargement. I was put on watch and wait for nearly three years after which my CLL had progressed far enough for treatment. Between Apr 2011 & Sep 2011 (Six monthly courses) I was placed on what they term the FCR chemotherapy Regimen ("F"ludarabine phosphate, "C"yclophosphamide, and "R"ituximab). I am pleased to say that three years on I am still in re-mission and feeling well although a little fatigued, one of the more common side effects of CLL. So try not to worry too much, there is a lot that can be done with CLL and there are a number of forums like this that can help with day to day questions and concerns.

Kind Regards
Kevin - Harlow, Essex, UK



Replied On: Nov 29, 2014 04:10pm
sunshinefrankie83

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Thank you all so much for your replies.they have helped to put my mind at rest slightly!I'm just hoping for the best possible news on 12.I'm so glad you are all doing well with your cll, I'm so glad I found this site.I'm sure I will be posting again, there is so much about cll I don't know or understand.thank you for taking the time to respond to me X



Replied On: Nov 30, 2014 06:29pm
LindyBird

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Being recently diagnosed with CLL (watch and wait) I am so happy to have found this forum and read replies such as these to sunshinefrankie. It can be difficult, as I have found that those who I share the news with sort of try to "rewrite" what I am telling them rather than being able to either cope with the news or understand quite what is going on. It is such a comfort to know that there is contact with others who really understand it all. Thank you and here's to good spirits!



Replied On: Dec 01, 2014 09:21pm
Admin

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Posted on behalf of a member.
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Just for those of you with CLL I have gone to a plant based diet and this is really helping. Please watch the movie Forks over Knives and if possible read The China Study. There is research out there that shows that cancer can be turned off and on.
Margaret



Replied On: Dec 02, 2014 03:22am
Venceremos

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Good on yer. Feel free to read my posts about my vegan diet, which I've been on for three and a half years. I feel a lot stronger, and my bloods are stable.

Alan



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