My CLL journey with a bone marrow thingie and FCR thrown in.

[Bribin]

After being referred, by my GP, to a consultant haematologist in 2010. She set me down and with little preamble proceeded to tell me that I had CLL. There is no cure she said, but I was in the early stages and no treatment was needed at that time. Shocked and Relieved I took the news like a good trooper. I would be seen regularly for blood test and not to worry it could be years; if even at all, before I needed treatment.

Que Sera, Sera Whatever will be, will be The future's not ours to see Que Sera, Sera.

Before we go any further - please be aware that my warped sense of humour sometimes overtakes my usual cool and collected narrative. I do not seek to offend nor to vent scorn.

We became great friends my consultant and I, during the 5% of the times I saw her when I attended my Watch & Wait appointments (even today she calls me Mr.!). I got to know many of her registrars over the years.

However, come 2013 my W&W appointments went from 6mths to 4mths then monthly to fortnightly in Feb'14. I thought that I had an admirer in the hospital! Why else so frequent requests for attendance?

Alas, instead of a box of chocolates I was half expecting - I had a bone marrow thingie (2 of them), It was mildly uncomfortable except for the incident when the needle hit a nerve and they had to pull me back from the other side of the table to continue. THEN I was offered a course of FRC. Ha! You can keep your 'Whose a lucky boy' comments to yourself. It must be said that I have full confidence in my consultant despite her letting me down with the chocs.

Anyway today Apr 5, I am halfway through my first helping of FRC and on the 17th I get to do it all again. Yea me!!

What? Oh you want to know my opinion of the treatment. Well what an unexpected train of events that prompted!

Being a 1st time user of the R=Rituxan in the FRC I got half my dose by IV on Tuesday (the other half planned for Wed). it was applied slowly, oh soo s l o w l y, during which I was given advise about being complacent regarding side effects. I took it all in and finally was released to go home. In hind-site I may have been too literal in interpretation of the warnings. My temperature was over 38.something and I had genuine flu like symptoms. I rang the helpline. They insisted I came back to the hospital. There I got a thorough going over and in the meantime my temperature had normalised and my aches and pains were dispersing. I went home again tired and depleted of energy.

Wednesday morning whilst preparing to go and get my remaining half of R, life outside my egotistical bubble, erupted - a call to the bedside of a close relative brought things into perspective - I missed my IV that day with my consultants blessing and was fortunate to spend a few minutes with my relative before she died.

Thursday morning, as instructed, I had to start my F= Fludarabine and C=Cyclophosphamide tablets. 16 pills between them plus an assortment of other tablets. Friday and Saturday same routine. I wouldn't say I enjoyed taking them nor the 3 litres of water, but when all is said and done the worst the happened me; apart from many many trips to the toilet, was minor nausea.

On the Monday I got my R, IV. On Wednesday a follow up appointment revealed my blood numbers were normal for some test or other. There was much rejoicing and never a thought to the CTscan and the extra bits inside me that it exposed.

Now I remember why I started this missive -

A question. Now that treatment has been deemed necessary, and is successful can I assume that it is now a race between CLL and old age as to which will cause my demise? I'm only 67 but one day after Christmas I felt like I was 35 again.

[Cllcanada Top Poster CURE Hero]

Does the 'bone marrow thingie' have a medical name? Bone marrow biopsy?

To answer your question... the deeper your remission on FCR, the longer... if you hit Minimal residual disease, MRD negative, 1 CLL cell in 10,000 clinically, then you could have a very long remission... 4-5 years is the median, but some are over 10 years.

A recent thought is that patients who make it to 9 years on FCR, without disease may be considered 'cure'...

More

patientpower.info/video/is-...

Sounds like your treatment is going well...could they make those fludara pills any smaller???

[Bribin in reply to Cllcanada]

Hi. Thank you for your informative reply.

The bone marrow thingie was a Bone Marrow Aspiration and Biopsy, but I like thingie better after all most thingies are simple and usually don't hurt humans.

[keepfit123 in reply to Cllcanada]

Would that be 1 CLL cell in 10,000 B cells equates to MRD negative? Many thanks.

[Cllcanada Top Poster CURE Hero in reply to keepfit123]

There are many MRD negative ranges and obviously the less CLL cells you have the better.

But for the clinic, they use 4 colour flow cytometry, and MRD- is considered to be 1 in 10,000

The CLL guidelines state in section 5.9... 'As such, patients will be defined as having a clinical remission in the absence of MRD when they have blood or marrow with iless than one CLL cell per 10 000 leukocytes.'

bloodjournal.hematologylibr...

More

biooncology.com/research-ed...

Pretty hard to get... often requires a BMB if rituxan is used or a 3 month wait for MRD on the blood... not done too much outside the major research hospitals in Germany and the U.S., from what patients tell me...

Here is a company that isolates one CLL cell from a B cell population... so this would be a deeper MRD- than just one in all WBCs .

labcorp.com/wps/wcm/connect...

[SAMBS]

Hi Bribin, so sorry to read of the sudden unexpected downturn in things. Your first paragraph and sentence could also be my story to date on this 'blood cell' journey. We are the same age, well I will be in August. I live in France, not UK - and your photo could be one of the type of scenery I see here regularly - its a lovely picture!

However my diagnosis in Beziers was October 2012 but for MDS (Myleodysplastic Syndrome) - called SMD here. It started with a Bone Marrow test the Hematologist took himself, 2 months after a blood test for something else showed up the cell structure and count anomalies. Since then have had regular quarterly blood tests,

I am still confused between MDS, which I've researched and CLL - when reading CLL posts, so many of them talk about the same things like red and white cell counts etc - the only difference for me being no medication as cell counts although they alter quarterly, are not at bad levels. I am also about to have another bone marrow test - because due to last move am now in different part of country so new specialists have to be seen so they can get their own tests and results done.

Unfortunately an Aneurysm and brain haemorrhage along with a few other medical and some non-medical issues don't help. I'm able to put that all behind me now despite ongoing consequences. My prognosis for MDS was the same as yours I could live for years with this and then die of old age! I wish you well and hope your treatment effects soon be come easier to cope with.

[Bribin in reply to SAMBS]

Hi SAMBS. Nice of you to comment. The picture was the view from my window taken today. Wishing you the best - keep your chin up ... Unless your head and neck are sore or full of lumps. If that's the case find a flattering old picture of yourself place it on a mirror and smile at it every day.

[SAMBS in reply to Bribin]

Hi Bribin, fortunately they re not. Thanks for your reply - and yes one day I hope to have some of my old photos back on this computer - as have almost wrecked 3 last year. But that's a lovely idea of yours! I also wish you the best and hope that the meds will help. Shirley. x

[ygtgo]

I know that your new here Bribin ...... and I welcome your warped sense of humour .... ( You wouldn't happen to be a pupil of the Guru .. Spike Milligan would you ?)

... But there are people on here, who would not appreciate all this ' Fn and Cn ' ... especially not on a Sunday !

... Being " great friends with my consultant " is also frowned upon .... as to your question .... a race between CLL and old age, my money's on Old Age .... oops ... now you've introduced gambling ... the administrators have much to answer for ... all this ' rejoicing and exposed ' bits ' ....

Hairbear and AussieNeil will be thinking ... warped sense of humour ... oh no .. not another one ( There goes the Global Admin of the year award for 2014 )

[Bribin in reply to ygtgo]

Hi Ygtgo. Points taken. Apologies. When I put finger to keyboard my imagination runs away with me. I do find the boards so enlightening and I mirror the fears and hopes of contributors.

The medical terms are daunting to me and opt for the vernacular. I subscribe to the view that if the medic thinks such and such is good for me and the other option is do nothing. Then I choose such and such (eyes closed, blindly following) success or otherwise the ultimate conclusion is the same, the only difference is the quality of the time element.

Again I didn't /don't intend to offend. The exposed bits referred to were the grouping of the 'nodes' revealed by the scan which triggered treatment.

“Professor Milligan will now play his tree! The composition is in A Minor, the tree is in A Garden.”

[ygtgo in reply to Bribin]

I subscribe to the same view .... I was diagnosed in Feb 2006, am now in my 9th year W&W and I don't know what my blood counts are. I have the understanding with my consultant that if my blood counts are 'fine', then that's enough, see you next time.

If and when there is concern, then that's when we'll deal with it ... I get on with the day to day part of it, she deals with the cancer.

It seems to work ... we don't let a little bad blood come between us

[Bribin in reply to ygtgo]

What a fabulous tag-line

"we don't let a little bad blood come between us"

Can I use it? Can I? Please?

'as ygtgo says, ... we don't let a little bad blood come between us'

Can I?

[ygtgo in reply to Bribin]

Oh ....... go on then

[Hidden]

Welcome, great to have you on board Bribin, plenty of room for the lighthearted approach to the serious business of learning and dealing with CLL. Many thanks for sharing.

Feeling like 35 again! now that is something we all hanker after, Good luck

Bub

[Bribin]

Thank budnjay

[Newdawn Administrator]

Welcome Bribin and I like your style. Like you, I survive with a rather warped sense of humour that is my safety shield against grinding reality. Whatever gets us through the strain and all that! Sounds like you're doing well and although I'm only 55, I'm on a very determined and earnest path as a trainee geriatric. A goal I will doggedly pursue until I'm old and crotchety enough to be a total nuisance! Husband assures me it's starting to work!

Just back from hols and over-done the walking (I know how those poor horses feel after the Grand National now). But the sun was shining (as I wisely observed from the shade), the sea was glistening and the folks were smiling. And for me, for that moment, I didn't have CLL.

Hope you're all registering high on the 1 to 10 scale today friends.

Newdawn x

[Bribin in reply to Newdawn]

Hi newdawn. "A very determined and earnest path as a trainee geriatric. A goal I will doggedly pursue until I'm old and crotchety enough to be a total nuisances"

Some would say that is a commendable course of study at the University of Life. However, just think of the joy that could be derived if you used the knowledge so far gained; via auto suggestion, to turn your husband into a fully fledged geriatric.

You would then be truly justified to 'Lord it over him'. Just think of the satisfaction on a day when you are feeling low. He comes into the house full of self pity and you say, "I spent half the day fluffing the cushions on the couch. I'm very sick; cause my GP told me, yet I managed something useful today. All you ever do is crumple them up and complain how badly the world is treating YOU!"

You could goad him into pampering you - after all you being ill would; if you played your cards right, would trump that crotchety; old before his time, man.

It is so nice when you get a glimpse of your old world, smiling people etc. I'm happy for you that you enjoyed your holiday with your still youngish old man.

[Hidden]

hello anybody whos there.just had my 4 month bloods done and saw my consultant.had FCR in late 2010 came through fairly well apart from fungal infection,in hosp for 2 weeks.

today she is very pleased with my progress as a 66 year old.also with a good sense of humour.in fact she has now put me on 6 month visits.

as interest to those starting the journey my results today are

WBC 6.2 absolute lymphs 1.4 absolute neuts 3.7 platelets 142

i have frequent colds but i do visit local pubs regularly !!

you must go for FCR if offered .

cheers

[defconSkipton in reply to Hidden]

I am now defconskipton . still learning computer skills deleted my account in error. HAD to have new one

[Bribin in reply to Hidden]

Hi. I have had 1st FRC and my 2nd is due on 17th. So far so good! I think a few colds are a good trade off for going to the pub.

[defconSkipton]

hope all goes well for you.there may be ups and downs but at the end of 6 months you can look to the future and enjoy life

i do my best but do get tired.Had 4 good years so far which i doubted at the time. Even paid for and organised my funeral in advance !! .

all the best cheers