My experience so far

[Oleboyredw-uk]

Hi, I registered yesterday and have read some of the blog entries and having found value felt I should put my experience down in the blog in the hope that it helps someone.

So, had a 'well man' type checkup with my local health worker back in April 2012, St George's day to be precise. Was told I had high blood pressure so subsequently saw the doctor and put on some tablets.

In early June I noticed my neck was swelling up, however, I felt no different to how I'd felt for a few months, a bit tired at time but I do a lot of miles and long hours in my job. I went to the doctor a couple of days later to be checked over, blood pressure, blood test etc. I work from home sometimes and the next day I was sitting at home working when there was a knock on the door, from my desk I can see the front door and I remember thinking "hmm, that is strange, it's the doctor, that can;t be good". I'll skip the discussion, to this day it seemed a bit surreal, but the short version is "we believe you have CLL".

So, saw a consultant a few weeks later, had a biopsy and a scan and the diagnosis was confirmed and he decided not to wait, but to start treatment - I think there was a bias to do this even after our first meeting due to the lymph nodes in my neck.

I started FCR 12th July 2012 and am now in cycle 5 with cycle 6 starting next week.

Some observations-

1: Involve your partner, my wife went to my first two meetings with the consultant and it was good to get a second opinion of the discussion, plus he involved her.

2: With the FCR the initial results were surprising, my neck returned to it's normal self after two weeks. Plus as told by the consultant, I've not lost any extra hair so far. So, of the few colleagues and friends I've shared this with there were no startled looks, although I dont think some quite grasped it at first!

3: Telling people is difficult, but I suspect it is harder for them, as I already know, and have got over the initial alarm.

4: It has taught me to be more aware of my body and not ignore unexplained items, I'm probably lucky I went to the doctor when I did.

5: I scared myself a lot in the first cycle reading the internet and taking what I was reading almost literally. Discussion with the consultant eased a lot of this and a realisation in my mind that a lot of what was written was personal and no two people are the same. So, now I try to take a pragmatic view.

6: My wife raised an interesting observation. For a while now I'd been snoring more and more, and the family joke was that I bought DVDs because I needed three sittings to see a film. I suspect this was the hidden tip of the proverbial iceberg. Within my first two cycles I no longer snore (my wife gets to sleep through the night) and I see films end to end.

My hopes for the future:

Well, live long and prosper as Spock says. In reality I don't know what the future holds for me, however, I wish to live and enjoy my life as much as possible, I hope, at 56 I have a quite a few years left and we all will be talking for a long time.

That was a very brief overview and I missed out loads of detail, but I didnt want this any longer, I'll respond if anyone has any questions, but I'm not sure how timely I'll be.

Two apologies 1: the length, 2: my appearing to be flippant, trust me I'm not however I'm determined to be upbeat and positive as much as possible.

rob

[Newdawn Administrator]

Thanks for posting your experience Rob, as you say, we all benefit from hearing each other's unique experiences which often have similarities too.

I was diagnosed with CLL a month after you but thankfully haven't required treatment yet.

Great to hear your treatment is going well and all the best for your 6th session.

Good advice and interesting observation about the snoring. Do you think it was because you were much more sleepy prior to treatment or that there's a link?

I actually googled it and the amazing thing is every ailment you can think of can somehow be linked to leukaemia on the net, even chilblains! Like you I've tried to take a pragmatic view now or I could drive myself more loopy than I already am!

I realise you're not being flippant but we need humour, even black humour to survive!

Like they say, 'no point worrying, nobody gets out alive in the end!'

Best wishes,

Newdawn

[Oleboyredw-uk in reply to Newdawn]

Hi Newdawn, I discussed the snoring with my consultant and clearly the evidence is circumstantial as we never looked internally at my throat before my treatment, however he thought it was possible that it is linked. The discussion was something like .... your neck was swollen on the outside, so, it is most likely there was swelling going inwards as well (I'd already thought this through), so as the swelling reduced the shape internally changed... and snoring disappeared.

Not proven but very strong co-incidence - the evidence of swelling reduction was clear from a couple of weeks into first cycle.

regards, rob

I have a question - has anybody travelled abroad? How far by aeroplane? Seems a trivial question but reading on t'internet gets me little info other than travel insurance can be hard to get. I'd like to next summer (hopefully end of treatment plus six months.

[Newdawn Administrator]

Thanks for that explanation Rob, certainly sounds a plausible explanation for the snoring.

Your question about travel insurance - I've been abroad since diagnosis and insured through Direct Line without any bother and the questions were not intrusive. However, I do think they take into account whether you've had or may need treatment. I wasn't at treatment stage so the premium was very reasonable for travel (only 3.5 hr flight away).

I'm sure people will be on with advice as this is a question that features heavily and I understand Macmillan have sources of advice on the matter.

I know this particular company are a specialist cancer travel insurance provider. This is the link; naturally you'll need to shop around. Good luck.

insurecancer.com/

Newdawn x

[HAIRBEAR_UK Founder Admin]

Rob, great blog thanks for sharing your experiences. They are very helpful,,and remind me of the words of a colleague who often reminds us that what we read in research studies may not refer to our own situation as the data is from a selected group. Yes you have provided thought provoking lessons that you have learnt so far in your journey. Thank you

I'm sure others who travel post treatment will be in touch. Here;s a few articles that include brokers that you may have already found. Look forward to your summer travels.

Macmillan have produced an article from a booklet published this year it can be downloaded from: nhs.uk/ipgmedia/national/Ma...

Alternatively the booklet can be ordered or downloadedfrom Be Macmillan on line: be.macmillan.org.uk/be/p-19...

and From Cancer research at: cllsupport.org.uk/travel.htm

Nick

[littleriver]

Thank you that is very helpful.

[Oleboyredw-uk]

Cycle 6 starts today. Feeling positive.

[Oleboyredw-uk]

An eventful day. Well, what an eventful day it has been. Liverpool and Manchester all in one day. Two very interesting presentations at the CLLSA meeting in Liverpool that made me feel quite uplifted. Plus comments and discussion with great people over coffee and lunch and in the foyer. Unfortunately, I could not stay for the last session, had to leave after the second presentation to go to Manchester to find out my results.

Another good meeting - very positive outcome from my FCR treatment in second half of 2012. Didn't make MRD negative however, I'm happy. Next meeting in three months and hopefully several of them with boring results.

And my consultant pointed out where the ALC number is on my reports(LYM), bit of a 'doh' moment on my part.

All in all a good day - I cant describe it anyhow else.

rob