Inevitable, but still a blow and a huge disappointment

[Rich316]

Apologies for this post. It isn't a request for information, or a message of support. It is merely an offload, a way of exorcising some of the thoughts and release the pressure on my overactive brain at the moment. I think it may be referred to as a Blog.

Over 10 years diagnosed with CLL and after a 4 year remission following FCR, I have just been told that my lymphocyte levels has just risen to just over 5 (Outside the upper scale of normal). I suspected that this might be the 3 monthly blood review that I was told something was amiss as my last review showed a rise from around 1 to 2.3, but it didn't make it any easier to receive the news. In fact, the sleepless nights and anxiety levels of the preceding week have probably hindered the process of rationalising this news as, not being the end of the world - quite yet.

I think that the worst part of this new stage of my CLL journey, and one that I am starting to remember well from my first diagnosis, is the uncertainty. Is this going to be the same as when I was first diagnosed? Is the progression likely to develop faster or slower? Am I looking at more treatment sooner or later? These were the questions I bombarded the young (sounding) member of the consultants team as she broke the news to me. The simple answer is, she didn't know, everyone is different. It may be faster developing, it may be a lot slower to develop. One thing is true though, there are a lot more treatments available for the second round of the disease than there were, even in the short(ish) ten years since my journey began.

Other things have changed in the last ten years. Covid, of course, which has sent all of us with immune suppressed conditions into double lockdown made us responsible for over 50% of the worlds alcohol spray. It has also made me a lot angrier when I see people flouting social distancing rules, but I now would have probably been a much better rugby player as I have developed my side-step to perfection to avoid oncoming walkers whilst out on my daily exercise. I have also developed arthritis in my hands and fingers, which is more of a painful inconvenience that a disability, especially on those cold days.

These things, and others, will now have to be factored in when planning and trying to anticipate this next stage of life, or perhaps I shouldn't bother worrying about it, just get on with things and let the clinical teams worry about the rest of.

Ha, good luck with that.

[Jm954 Administrator]

This is a good place to offload. Often just the process of writing it all out can help the jumble of thoughts and bring a bit of calm.

As you've said, the uncertainty is the hard bit but, one thing you can be certain of is that there are some brilliant treatments available to you now to choose from and no more chemotherapy.

Wishing you all the best

Jackie

[Rich316 in reply to Jm954]

Thanks Jackie. Perhaps I was fishing for a bit of reassurance 😩😩😂😂

[Jm954 Administrator in reply to Rich316]

That's what we're here for x

[GMa27]

Not sure u mentioned when you see your doctor again. Definitely not the news anyone wants to hear. Maybe it will be stable for a bit and not keep going in the wrong direction.

Would you mind sharing ur markers & mutation status?

I was dx 15 years ago and had FCR in USA almost 3 years ago.

As you said, there are so many treatments since you were diagnosed. 🙏

[Rich316 in reply to GMa27]

Hello there, to be honest with you, I am not sure what my mutation or marker status is atm. Just been going on bloods . I did know and read up on everything back in the early days, but decided there were brains far more superior than mine who would worry about that sort of thing for me. My next appointment is in 3 months so I could try and ask then, although we are doing telephone consultations at the moment due to Covid and sometimes they are a bit time restricted, once I have gone through my ‘woe is me’ routine 🤣. I will try and remember to ask.

[GMa27 in reply to Rich316]

I was asking to see if we had the same markers. It is good to know since our treat choices are based on them. Good luck with next appt. 💕

[Lawand1]

I could have written this as I’m in a similar place to you. The difference is I’m over six years into Ibrutinib which has been amazing. The uncertainty is such a futile but real distraction. And the reality is, as Jackie rightly says, there are some incredible new drugs available. Nothing in life is guaranteed but our hope is based on evidence. Be hopeful and make the most of the journey. Keep us posted,

A

[Rich316 in reply to Lawand1]

Thanks Drew, wise words. There is, of course a possibility that the rise in Lymph’s could be as a result of a recent infection, or as a reaction to the OxfordAZ vaccine, but I think I am rather clutching at straws there. I have read some of your posts and your journey through chemos, Ib’nib and V’x . I hope you have found a suitable regimen and you are stable. I will keep you posted as requested

[Lawand1 in reply to Rich316]

Thanks Rich. Yes I’m hanging on to the possibility my rise is the vaccine too....it offers a moment of relief. I think I’ll be on a few months of observation before we choose a protocol. This forum has inspired me not to simply accept what my current Dr suggests...keep in touch mate, hoping the best for the both of us!

[Jacksc06]

Offload accepted. I think the last sentence regarding getting on is the way forward. Best wishes.